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  • A new model of patient-reported outcome monitoring with a clinical feedback system in ostomy care: rationale, description and evaluation protocol
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2020-01-15
    Kirsten Lerum Indrebø; Anny Aasprang; Torill Elin Olsen; John Roger Andersen

    Living with an ostomy can be challenging and adapting to life with an ostomy can be particularly complex, with regard to both the physical and psychosocial aspects. Follow-up with a stoma care nurse (SCN) is usually performed after surgery to support the adaptation process. In the present paper, we describe a new model of ostomy care, where a clinical feedback system (CFS) is implemented in order to improve the adaption process of patients with an ostomy. We also present a plan for evaluating patients experience with the CFS and their clinical outcomes. In this study, we include patients who had recently performed colostomy, ileostomy, or urostomy surgery. The intervention includes self-reported measures for adaptation to life with an ostomy and health-related quality of life (HRQoL), as well as patient experiences and satisfaction recorded by the clinical feedback system. The measures are electronically assessed before each clinical consultation at 3, 6, and 12 months after surgery. The scores are instantly analysed and graphically presented for use during the consultation and the patient and the SCN can discuss the findings. Patient experiences and satisfaction with care will be measured with the Generic Short Patient Experiences Questionnaire. Adaptation to the life with ostomy will be measured with the Ostomy Adjustment Scale, and HRQoL with the Short Form 36. This study presents a novel approach that could lead to improved consultation, more patient involvement, and better adaptation to life with an ostomy. ClinicalTrials.gov Registration Number: NCT03841071. Date 18. February 2019 retrospectively registered.

    更新日期:2020-01-15
  • Item generation for a proxy health related quality of life measure in very young children
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2020-01-14
    Janine Verstraete; Lebogang Ramma; Jennifer Jelsma

    Very young children have a relatively high prevalence of morbidity and mortality. Health care and supportive technology has improved but may require difficult choices and decisions regarding the allocation of these resources in this age group. Cost-effective analysis (CEA) can inform these decisions and thus measurement of Health-Related Quality of Life (HRQoL) is becoming increasingly important. However, the components of HRQoL are likely to be specific to infants and young children. This study aimed to develop a bank of items to inform the possible development of a new proxy report instrument. A review of the literature was done to define the concepts, generate items and identify measures that might be an appropriate starting point of reference. The items generated from the cognitive interviews and systematic review were subsequently pruned by experts in the field of HRQoL and paediatrics over two rounds of a Delphi study. Based on the input from the different sources, the greatest need for a new HRQoL measure was in the 0–3-year age group. The item pool identified from the literature consisted of 36 items which was increased to 53 items after the cognitive interviews. The ranking of items from the first round of the Delphi study pruned this pool to 28 items for consideration. The experts further reduced this pool to 15 items for consideration in the second round. The experts also recommended that items could be merged due to their similar nature or construct. This process allowed for further reduction of items to 11 items which showed content validity and no redundancy. The need for an instrument to measure appropriate aspects of HRQoL in infants and young children became apparent as items included in existing measures did not cover the required spectrum. The identification of the final items was based on a sound conceptual model, acceptability to stakeholders and consideration of the observability of the item selected. The pruned item bank of 11 items needs to be subject to further testing with the target population to ensure validity and reliability before a new measure can be developed.

    更新日期:2020-01-15
  • Impact of acute-on-chronic liver failure and decompensated liver cirrhosis on psychosocial burden and quality of life of patients and their close relatives
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2020-01-13
    Michael Nagel; Christian Labenz; Marcus A. Wörns; J. U. Marquardt; Peter R. Galle; Jörn M. Schattenberg; Marc Nguyen-Tat

    Patients with liver cirrhosis often suffer from complications such as ascites, gastrointestinal bleeding, and infections, resulting in impaired quality of life. Frequently, the close relatives of patients also suffer from a lower quality of life in chronic diseases. In recent years, acute-to-chronic liver failure has been defined as a separate entity with high mortality. Often several organs are affected which makes intensive care therapy necessary. Little is known about the influence of acute-on-chronic-liver failure (ACLF) on the quality of life of patients and the psychosocial burden on close relatives. The purpose of this prospective study is to investigate the influence of decompensated liver cirrhosis and the onset of ACLF of the patient’s’ quality of life and the psychosocial burden of close relatives. In this non – randomized prospective cohort study a total of 63 patients with acute decompensation of liver cirrhosis and hospital admission were enrolled in the study. To assess the quality of life of patients, the disease specific CLDQ questionnaire was assessed. In addition. Quality of life and psychosocial burden of first degree relatives was measured using the generic SF-36 questionnaire as well as the Zarit Burden Score. 21 of the 63 patients suffered from ACLF. Patients with ACLF showed a lower quality of life in terms of worries compared to patients with only decompensated liver cirrhosis (3,57 ± 1,17 vs. 4,48 ± 1,27; p value: 0,008) and increased systemic symptoms (3,29 ± 1,19 vs. 4,48 ± 1,58; p value: 0,004). The univariate analysis confirmed the link between the existence of an ACLF and the concerns of patients. (p value: 0,001). The organ failure score was significantly associated with overall CLDQ scores, especially with worries and systemic symptoms of patients. Interestingly the psychosocial burden and quality of life of close relative correlates with patient’s quality of life and was influenced by the onset of an acute-on-chronic liver failure. Patients with decompensated liver cirrhosis suffer from impaired quality of life. In particular, patients with ACLF have a significantly reduced quality of life. The extent of the psychosocial burden on close relative correlates with poor quality of life in patients with decompensated liver disease and is influenced by the existence of ACLF.

    更新日期:2020-01-13
  • Patient’s early satisfaction with care: a predictor of health-related quality of life change among outpatients with substance dependence
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2020-01-07
    Ophélie Müller; Cédric Baumann; Paolo Di Patrizio; Sarah Viennet; Guillaume Vlamynck; Laura Collet; Isabelle Clerc-Urmès; Raymund Schwan; Stéphanie Bourion-Bédès

    Although research on health-related quality of life (HRQoL) has increased in the addiction field, few studies have focused on the determinants of HRQoL changes. This study aimed to describe dependent patients’ HRQoL changes at a 3-month follow-up and to assess whether satisfaction with care can predict those changes among outpatients starting care for alcohol or opioid dependence. HRQoL was measured with the SF-12 at baseline and 3 months later in a prospective cohort of dependent outpatients. Satisfaction was assessed with the EQS-C early after inclusion. Data on sociodemographics, clinical characteristics and patients’ levels of anxiety and depression were also collected. A multivariable analysis was performed to identify factors associated with HRQoL changes in both the physical and mental component summary scores (PCS and MCS, respectively). Of the 172 patients included at baseline, a total of 136 patients assessed their satisfaction with care. The mean PCS and MCS scores were initially low, and HRQoL improvement was significant after 3 months for both the PCS and MCS. Never having been married (β = 5.5; p = 0.001) and a lower baseline PCS score (β = − 0.6; p < 0.0001) were associated with significant PCS improvement, whereas being legally compelled to undergo drug treatment (β = − 5.9; p = 0.02) was associated with less PCS change. Higher early satisfaction with care (β = 0.1; p = 0.02) and a lower baseline MCS score (β = − 0.7; p < 0.0001) were associated with significant MCS improvement. The study supported the hypothesis that greater satisfaction with care may predict HRQoL improvement among dependent outpatients. Further studies are needed to understand the factors that affect patients’ early satisfaction to identify areas of improvement and thus improve HRQoL.

    更新日期:2020-01-07
  • The Persian short form Aging Perceptions Questionnaire (APQ-P): A validation study
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2020-01-07
    Mojgan Miremadi; Razieh Bandari; Majideh Heravi-Karimooi; Nahid Rejeh; Hamid Sharif Nia; Ali Montazeri

    Population aging is an important phenomenon for many countries worldwide. Considering the growing trend of aging population in Iran, it is very important to consider beliefs and perceptions of old people about aging. The Aging Perception Questionnaire (APQ) is one of the most common instruments that used to measure aging comprehension. The present study was a methodological inquiry that aimed to examine validity and reliability of the Persian version of the Aging Perception Questionnaire (APQ). Forward-backward procedure was used for translation. Content validity and face validity were evaluated qualitatively. In order to evaluate construct validity a cross section study was conducted and both exploratory and confirmatory factor analyses were performed. In order to determine reliability, internal consistency (the Cronbach’s alpha) and stability (Intraclass Correlation Coefficient -ICC) were estimated. A total of 500 elderly people attending the community centers in Tehran, Iran were entered in other study and completed the Persian version of the questionnaire. Most elderly were female (52.8%).The mean age of participants was 68.33 (SD ± 6.10) years. The results obtained from exploratory factor analysis showed a four-factors solution (consequences negative, emotional representation, control positive and consequences positive) that jointly explained 52.8% of the total variance observed. In addition the confirmatory factory analysis showed a good fit for the data. Finally, the Cronbach’s alpha coefficient of 0.83 ranging from 0.80 to 0.87 was obtained for the whole scale and the subscales. The ICC value of 0.96 ranging from 0.90 to 0.98 was found for the whole scale and the subscales. The results indicated that the Persian version of APQ is valid and can be used to measure aging perception in Iran.

    更新日期:2020-01-07
  • Factors associated with quality of life of adult patients with acute leukemia and their family caregivers in China: a cross-sectional study
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2020-01-07
    Chunfeng Wang; Jie Yan; Jingyi Chen; Ying Wang; Ying Chun Lin; Rong Hu; Yong Wu

    Acute leukemia (AL) not only impairs the quality of life (QOL) of patients, but also affects that of their family caregivers (FCs). Studies on QOL of AL patients and their FCs are limited. This study aimed to evaluate the QOL of AL patients and their FCs, and to explore the factors associated with QOL of patients and of FCs. A multicenter cross-sectional study was conducted. The QOL of 196 patient–FC dyads was assessed. The Functional Assessment of Cancer Therapy-Leukemia (FACT-Leu) was used for patients, and the 36-item Short-Form Health Survey (SF-36) was used for FCs. Independent-samples t-tests or one-way analysis of variance were used to compare QOL subscale scores between groups with different sociodemographic/clinical characteristics. Multiple regression analysis was conducted to identify the factors associated with QOL of AL patients and their FCs. The total FACT-Leu score for AL patients was 76.80 ± 16.44, and the physical component summary (PCS) and mental component summary (MCS) scores for FCs were 64.67 ± 15.44 and 52.50 ± 13.49, respectively. All QOL subscales for patients (t = 12.96–34.73, p < 0.001) and FCs (t = 2.55–14.36, p < 0.05), except role emotional (t = − 0.01, p = 0.993), were lower than those reported in previous studies. Sex, employment, and chemotherapy were significantly associated with total FACT-Leu score in AL patients (p < 0.05). Age, sex, marital status, education, employment, and relationship to patients were significantly associated with SF-36 PCS or MCS (p < 0.05). AL patients and their FCs both have lower QOL than the population in previous studies. These findings suggest that not only AL patients’ physical and mental health but also overall family QOL should be assessed. Interventions supporting patient–FC dyads should be developed to improve their QOL.

    更新日期:2020-01-07
  • Psychometric properties of the Danish Hospital Anxiety and Depression Scale in patients with cardiac disease: results from the DenHeart survey
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2020-01-07
    Anne Vinggaard Christensen; Jane K. Dixon; Knud Juel; Ola Ekholm; Trine Bernholdt Rasmussen; Britt Borregaard; Rikke Elmose Mols; Lars Thrysøe; Charlotte Brun Thorup; Selina Kikkenborg Berg

    Anxiety and depression symptoms are common among cardiac patients. The Hospital Anxiety and Depression Scale (HADS) is frequently used to measure symptoms of anxiety and depression; however, no study on the validity and reliability of the scale in Danish cardiac patients has been done. The aim, therefore, was to evaluate the psychometric properties of HADS in a large sample of Danish patients with the four most common cardiac diagnoses: ischemic heart disease, arrhythmias, heart failure and heart valve disease. The DenHeart study was designed as a national cross-sectional survey including the HADS, SF-12 and HeartQoL and combined with data from national registers. Psychometric evaluation included analyses of floor and ceiling effects, structural validity using both exploratory and confirmatory factor analysis and hypotheses testing of convergent and divergent validity by relating the HADS scores to the SF-12 and HeartQoL. Internal consistency reliability was evaluated by Cronbach’s alpha, and differential item functioning by gender was examined using ordinal logistic regression. A total of 12,806 patients (response rate 51%) answered the HADS. Exploratory factor analysis supported the original two-factor structure of the HADS, while confirmatory factor analysis supported a three-factor structure consisting of the original depression subscale and two anxiety subscales as suggested in a previous study. There were floor effects on all items and ceiling effect on item 8. The hypotheses regarding convergent validity were confirmed but those regarding divergent validity for HADS-D were not. Internal consistency was good with a Cronbach’s alpha of 0.87 for HADS-A and 0.82 for HADS-D. There were no indications of noticeable differential item functioning by gender for any items. The present study supported the evidence of convergent validity and high internal consistency for both HADS outcomes in a large sample of Danish patients with cardiac disease. There are, however, conflicting results regarding the factor structure of the scale consistent with previous research. ClinicalTrials.gov: NCT01926145.

    更新日期:2020-01-07
  • Quality of life in children with infrequent congenital heart defects: cohort study with one-year of follow-up
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2020-01-06
    Karen Moreno-Medina; Magally Barrera-Castañeda; Catalina Vargas-Acevedo; Alberto E. García-Torres; Miguel Ronderos; Manuel Huertas-Quiñones; Silvana Cabrera; María Teresa Domínguez; Nestor Sandoval Reyes; Rodolfo J. Dennis

    The evidence regarding patient related outcomes in children with infrequent congenital heart defects (I-CHD) is very limited. We sought to measure quality of life (QoL) in children with I-CHD, and secondarily, to describe QoL changes after one-year of follow-up, self-reported by children and through their caregivers’ perspective. We assembled a cohort of children diagnosed with an I-CHD in a cardiovascular referral center in Colombia, between August 2016 and September 2018. At baseline and at one-year follow-up, a clinical psychology assessment was performed to establish perception of QoL. The Pediatric Quality of Life Inventory (PedsQL) 4.0 scale was used in both general and cardiac modules for patients and for their caregivers. We used a Mann-Whitney U test to compare scores for general and cardiac modules between patients and caregivers, while a Wilcoxon test was used to compared patients’ and caregivers’ baseline and follow-up scores. Results are presented as median and interquartile range. To date, QoL evaluation at one-year follow-up has been achieved in 112/157 patients (71%). Self-reported scores in general and cardiac modules were higher than the QoL perceived through their caregivers, both at baseline and after one-year of follow-up. When compared, there was no statistically significant difference in general module scores at baseline between patients (median = 74.4, IQR = 64.1–80.4) and caregivers scores (median = 68.4, IQR = 59.6–83.7), p = 0.296. On the contrary, there was a statistical difference in baseline scores in the cardiac module between patients (median = 79.6, IQR = 69.7–87.4) and caregivers (median = 73.6, IQR = 62.6–84.3), p = 0.019. At one-year of follow-up, scores for the general module between patients (median = 72.8, IQR = 59.2–85.9) and caregivers (median = 69.9, IQR = 58.1–83.7) were not statistically different (p = 0.332). Finally, a significant difference was found for cardiac module scores between patient (median = 75.0, IQR = 67.1–87.1) and caregivers (median = 73.1, IQR = 59.5–83.8), p = 0.034. QoL in children with I-CHD can be compromised. However, children have a better perception of their QoL when compared with their caregivers’ assessments. To provide high-quality care, besides a thorough clinical evaluation, QoL directly elicited by the child should be an essential aspect in the integral management of I-CHD.

    更新日期:2020-01-06
  • Relationship between disease activity status or clinical response and patient-reported outcomes in patients with non-radiographic axial spondyloarthritis: 104-week results from the randomized controlled EMBARK study
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2020-01-03
    Maxime Dougados; Désirée van der Heijde; Wen-Chan Tsai; Diego Saaibi; Lisa Marshall; Heather Jones; Ron Pedersen; Bonnie Vlahos; Miriam Tarallo

    We assessed the external validity of composite indices Ankylosing Spondylitis Disease Activity Score (ASDAS), Bath Ankylosing Spondylitis Disease Activity Index (BASDAI), and Assessment in SpondyloArthritis international Society (ASAS) 40 response (ASAS40) by evaluating the correlations between the changes in some patient reported outcomes (PROs) for patients with non-radiographic axial spondyloarthritis (nr-axSpA) and the changes in the scores of the composite indices. This was a post-hoc analysis of data from the EMBARK study in patients with nr-axSpA treated with etanercept. PROs were grouped according to ASDAS status (inactive [< 1.3], low [≥ 1.3 to < 2.1], high [≥ 2.1 to ≤3.5], and very high [> 3.5]), patient achievement of > 50% improvement in BASDAI (BASDAI50 responders), and > 40% improvement in ASAS (ASAS40 responders) at 104 weeks. Analyses were conducted on observed cases available at Week 104. Changes in PROs from Baseline to Week 104 were assessed using analysis of covariance with adjustment for baseline with linear contrast. Higher ASDAS disease activity at 104 weeks was associated with lower long-term improvement from baseline in PROs (e.g., total back pain [visual analog scale, cm (95% confidence interval): − 4.58 (− 4.95, − 4.21), − 3.86 (− 4.28, − 3.43), − 2.15 (− 2.68, − 1.61), and 1.30 (− 0.51, 3.12) for inactive, low, high, and very high ASDAS disease activity, respectively; Multidimensional Fatigue Inventory (MFI) general fatigue: − 4.77 (− 5.70, − 3.84), − 2.96 (− 4.04, − 1.87), − 1.00 (− 2.32, 0.31), and 2.14 (− 2.10, 6.38); all p < 0.001)]. BASDAI50 non-responders had less improvement in PROs from Baseline to Week 104 vs. responders (e.g., total back pain: − 1.61 (− 2.05, − 1.18) vs. –4.43 (− 4.69, − 4.18); MFI general fatigue: − 0.01 (− 1.12, 1.09) vs. –4.30 (− 4.98, − 3.62); all p < 0.001). ASAS40 non-responders also had less improvement in PROs from Baseline to Week 104 vs. responders (e.g., total back pain: − 1.91 (− 2.30, − 1.52) vs. –4.75 (− 5.05, − 4.46); MFI general fatigue: − 0.63 (− 1.56, 0.30) vs. –4.64 (− 5.37, − 3.91); all p < 0.001). Composite indices are valid for monitoring treatment response and adequately reflect treatment-related changes experienced by patients with nr-axSpA. ClinicalTrials.gov identifier: NCT01258738. Registered 9 December 2010.

    更新日期:2020-01-04
  • Assessing quality of life in older adults: psychometric properties of the OPQoL-brief questionnaire in a nursing home population
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2020-01-02
    Gørill Haugan; Jorunn Drageset; Beate André; Kamile Kukulu; James Mugisha; Britt Karin S. Utvær

    Well-adapted and validated quality-of-life measurement models for the nursing home population are scarce. Therefore, the aim of this study was to test the psychometrical properties of the OPQoL-brief questionnaire among cognitively intact nursing home residents. The research question addressed evidence related to the dimensionality, reliability and construct validity, all of which considered interrelated measurement properties. Cross-sectional data were collected during 2017–2018, in 27 nursing homes representing four different Norwegian municipalities, located in Western and Mid-Norway. The total sample comprised 188 of 204 (92% response rate) long-term nursing home residents who met the inclusion criteria: (1) municipality authority’s decision of long-term nursing home care; (2) residential time 3 months or longer; (3) informed consent competency recognized by responsible doctor and nurse; and (4) capable of being interviewed. Principal component analysis and confirmative factor analyses indicated a unidimensional solution. Five of the original 13 items showed low reliability and validity; excluding these items revealed a good model fit for the one-dimensional 8-items measurement model, showing good internal consistency and validity for these 8 items. Five out of the 13 original items were not high-quality indicators of quality-of-life showing low reliability and validity in this nursing home population. Significant factor loadings, goodness-of-fit indices and significant correlations in the expected directions with the selected constructs (anxiety, depression, self-transcendence, meaning-in-life, nurse-patient interaction, and joy-of-life) supported the psychometric properties of the OPQoL-brief questionnaire. Exploring the essence of quality-of-life when residing in a nursing home is highly warranted, followed by development and validation of new tools assessing quality-of-life in this population. Such knowledge and well-adapted scales for the nursing home population are beneficial and important for the further development of care quality in nursing homes, and consequently for quality-of-life and wellbeing in this population.

    更新日期:2020-01-02
  • Developing item banks to measure three important domains of health-related quality of life (HRQOL) in Singapore
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2020-01-02
    Elenore Judy B. Uy; Lynn Yun Shan Xiao; Xiaohui Xin; Joanna Peck Tiang Yeo; Yong Hao Pua; Geok Ling Lee; Yu Heng Kwan; Edmund Pek Siang Teo; Janhavi Ajit Vaingankar; Mythily Subramaniam; Mei Fen Chan; Nisha Kumar; Alcey Li Chang Ang; Dianne Carrol Bautista; Yin Bun Cheung; Julian Thumboo

    To develop separate item banks for three health domains of health-related quality of life (HRQOL) ranked as important by Singaporeans – physical functioning, social relationships, and positive mindset. We adapted the Patient Reported Outcomes Measurement Information System Qualitative Item Review protocol, with input and endorsement from laymen and experts from various relevant fields. Items were generated from 3 sources: 1) thematic analysis of focus groups and in-depth interviews for framework (n = 134 participants) and item(n = 52 participants) development, 2) instruments identified from a literature search (PubMed) of studies that developed or validated a HRQOL instrument among adults in Singapore, 3) a priori identified instruments of particular relevance. Items from these three sources were “binned” and “winnowed” by two independent reviewers, blinded to the source of the items, who harmonized their selections to generate a list of candidate items (each item representing a subdomain). Panels with lay and expert representation, convened separately for each domain, reviewed the face and content validity of these candidate items and provided inputs for item revision. The revised items were further refined in cognitive interviews. Items from our qualitative studies (51 physical functioning, 44 social relationships, and 38 positive mindset), the literature review (36 instruments from 161 citations), and three a priori identified instruments, underwent binning, winnowing, expert panel review, and cognitive interview. This resulted in 160 candidate items (61 physical functioning, 51 social relationships, and 48 positive mindset). We developed item banks for three important health domains in Singapore using inputs from potential end-users and the published literature. The next steps are to calibrate the item banks, develop computerized adaptive tests (CATs) using the calibrated items, and evaluate the validity of test scores when these item banks are administered adaptively.

    更新日期:2020-01-02
  • Implementation analysis of patient reported outcomes (PROs) in oncological routine care: an observational study protocol
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2020-01-02
    Mirja Gianna Görlach; Theresa Schrage; Carsten Bokemeyer; Nicolaus Kröger; Volkmar Müller; Cordula Petersen; Christian Stephan Betz; Andreas Krüll; Holger Schulz; Christiane Bleich

    The successful implementation of patient-reported outcomes (PROs) in clinical routine faces many challenges, first and foremost the lack of consideration thereof in the patient care process. The aim of this study will be to first identify relevant barriers and facilitators and then design suitable implementation strategies which will be evaluated to improve the effectiveness of a PRO measure assessment in inpatient and outpatient cancer routine care. During the preparation phase, interviews with oncological patients (N = 28) and medical staff (N = 4) as well as focus groups with medical staff (N = 18) across five different departments caring for cancer patients were conducted. On the basis of these, qualitative content analysis revealed relevant barriers and facilitators for implementation of PROs in cancer care. Subsequently, implementation strategies and a model of implementation were developed. In the study phase, implementation strategies will be evaluated based on nine different implementation outcomes in five different oncological clinics. Evaluation of the implementation process will take place during three months in each clinic and data will be conducted pre, while and post implementation of the PRO measure. Therefore a sample size of 60 participants of whom 30 staff members and 30 participants will be questioned using existing and newly developed implementation outcome evaluation instruments. Key to improving the effectiveness of PRO assessment in the time-critical clinical environment is the utilization of easy-to-use, electronic PRO questionnaires directly linked to patients’ records thereby improving consideration of PROs in patient care. In order to validate the effectiveness of this implementation process further, an evaluation parallel to implementation following an observational study design with a mixed-methods approach will be conducted. This study could contribute to the development of adequate evaluation processes of implementation of PROs to foster sustainable integration of PRO measures into routine cancer care. This study was registered at Open Science Framework (https://osf.io/y7xce/).

    更新日期:2020-01-02
  • Psychometric properties of the portuguese version of the chronic urticaria quality of life questionnaire (CU-Q2oL)
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-12-30
    Pedro Lopes Ferreira; Margarida Gonçalo; José Alberto Ferreira; Ana Célia Costa; Ana Todo-Bom; Cristina Lopes Abreu; Ana Rita Travassos; Pedro Andrade; Ilaria Baiardini; Giorgio Walter Canonica

    Chronic urticaria is defined as the appearance of urticarial lesions and/or angioedema during a period of more than six weeks. We aimed at developing the Portuguese version of the Chronic Urticaria Quality of Life Questionnaire (CU-Q2oL) and at testing its reliability and the content, construct and criterion validity. The forward-backward approach to a linguistic equivalence was followed, after which a clinical review and a cognitive debriefing with patients were performed. The intraclass correlation coefficient checked test-retest reliability with patients filling the same questionnaire with one week apart and the Cronbach’s alpha indicator assessed the internal consistency. Construct validity was tested by an exploratory factor analysis and by hypothesis tests involving sociodemographic and clinical patient characteristics, including the urticaria control test (UCT). On the other hand, criterion validity was tested through correlations with the Short-Form Health Survey SF-36, EQ-5D-5 L, and the Dermatology Quality of Life Index (DLQI). A total of 162 patients from seven hospital units were included. The mean (standard deviation) age was 42.6 (13.3) and 81.6% were female. CU-Q2oL was entirely filled by all respondents. Internal consistency was 0.947 for the overall score, ranging from 0.661 (limits) to 0.899 (sleep problems) and the corresponding reproducibility indicator was 0.910, based on 23 patients and ranging from 0.711 (swelling) and 0.957 (looks). Exploratory factor analysis in general confirmed the original structure originally obtained by the authors. All CU-Q2oL dimensions were highly correlated with DLQI Index and differentiated well between males and females, and between different levels of wheals and pruritus. In addition, moderate negative correlations were found between Cu-Q2oL scores and the dimensions from SF-36 and EQ-5D-5 L. The satisfactory metric properties confirmed the cultural adaptation and validity of CU-Q2oL into Portuguese population, providing the clinicians with a valid tool to evaluate the impact of chronic urticaria on patient’s QoL and therefore adjust their treatment. Not applicable.

    更新日期:2019-12-31
  • Translation, cross-cultural adaptation and validation of the polish version of the Oxford Shoulder Score in patients undergoing arthroscopic rotator cuff repair
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-12-30
    Agnieszka Bejer; Magdalena Szczepanik; Jędrzej Płocki; Daniel Szymczyk; Marek Kulczyk; Teresa Pop

    The Oxford Shoulder Score (OSS) is a simple and reliable, joint-specific, self-reported outcome measure. It can be applied in patients with shoulder disease other than instability. The purpose of this study was to perform a translation, cultural adaptation of the Polish version of the OSS and to evaluate its selected psychometric properties in patients after arthroscopic rotator cuff repair. Sixty-nine subjects participated in the study, with a mean age 55.5 (ranging from 40 to 65 years). The OSS has been translated using the widely accepted guidelines. All patients completed the Polish version of OSS (OSS-PL), the short version of the Disabilities of Arm, Shoulder and Hand Questionnaire (QuickDASH), the Short Form-36 v. 2.0 (SF-36) and the 7-point Global Rating of Change Scale (GRC). High internal consistency of 0.96 was found using Cronbach’s alpha coefficient. Reliability of the OSS resulted in Intraclass Correlation Coefficient (ICC) = 0.99, Standard Error of Measurement (SEM) = 1.14 and Minimal Detectable Change (MDC) = 3.15. The validity analysis showed a moderate (General health r = 0.34) to high (Physical role functioning r = 0.82) correlation between the OSS-PL and SF-36 and a high correlation between the OSS-PL and the QuickDASH (r = − 0.92). The Polish version of OSS is a reliable and valid, self-reported questionnaire, which can be applied in patients with a rotator cuff tear undergoing reconstruction surgery. The very good psychometric properties of the Polish version of the OSS indicate that it can be used in clinical practice and scientific research.

    更新日期:2019-12-31
  • Health-related quality of life of patients diagnosed with COPD in Extremadura, Spain: results from an observational study
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-12-30
    María Merino; Renata Villoro; Álvaro Hidalgo-Vega; Concepción Carmona

    COPD is a high prevalence chronic disease that involves large reductions of health-related quality of life (HRQL) of patients. This study aims to describe the HRQL of patients with COPD in Extremadura (Spain). This is a cross-sectional observational study carried out using a representative sample of patients diagnosed with COPD in Extremadura. The inclusion criteria were patients of legal age, diagnosed with COPD at least 12 months prior to the visit, residing in Extremadura, with electronic medical records available for the 12 months prior to the visit and providing informed consent. The intervention aimed to elicit HRQL indicators obtained from two validated questionnaires: EuroQol - 5 Dimensions - 5 Levels (EQ-5D-5L), and St. George’s Respiratory Questionnaire-COPD (SGRQ-C). The main outcome measures were general HRQL (utility and visual analogue scale) and specific quality of life of COPD patients (total score and three component scores: Symptoms, Activity, and Impacts). Stepwise multiple regression analysis was applied to evaluate the association of EQ-5D-5L and SGRQ-C with respect to clinical and sociodemographic characteristics of the patients. We recruited 386 patients (mean age 71.8 ± 10.3 years, 76.2% males). In the EQ-5D-5L, participants reported greater problems with respect to mobility (56.5%) and pain/discomfort (48.2%). The mean utility was 0.72 ± 0.31, and the SGRQ-C total score was 40.9 ± 25.0. The results of both questionnaires were associated with number of exacerbations in the last 12 months, level of COPD severity, gender, and education level of the patient (p < 0.05). The results for both utility and total SGRQ-C score indicate that having suffered exacerbations in the last year, presenting a higher level of severity, being a woman, and having a low education level are related to worse HRQL in patients with COPD.

    更新日期:2019-12-30
  • The construct validity of the Child Health Utility 9D-DK instrument
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-12-23
    Karin Dam Petersen; Julie Ratcliffe; Gang Chen; Dorthe Serles; Christine Stampe Frøsig; Anne Vingaard Olesen

    Relative to their application with adults there is currently little information about the application of preference-based health-related quality of life (HRQL) instruments among populations of young people. The Child Health Utility 9D (CHU9D) is a paediatric-specific generic preference-based HRQL instrument, recently translated and linguistically validated into Danish (CHU9D-DK). The purpose of this study was to investigate the construct validity of the CHU9D-DK in a sample of Danish high school students. All students attending a Danish High School were invited to participate in a web-based survey in January 2018 (N = 272). The survey included the CHU9D-DK, the young adult version of the Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales (PedsQL), self-reported health status, presence/absence of disability/chronic diseases, life satisfaction, and socio-economic questions. CHU9D-DK utility scores were generated by employing the two scoring algorithms developed from adults in the UK and adolescents in Australia, respectively. Internal consistency, reliability and construct validity of the CHU9D-DK instrument were investigated. Two hundred and twenty-eight (84%) students consented to participate and completed the survey. The mean ± (standard deviation) values of the CHU9D-DK utilities were 0.84 (0.11) when the UK adult algorithm was applied and 0.70 (0.22), when the Australian adolescent algorithm was applied. The mean PedsQL score was 82.32 (13.14). The CHU9D-DK showed good internal consistency reliability (Cronbach’s alpha = 0.803). Higher levels of health status and life satisfaction were significantly associated with higher CHU9D-DK utility scores regardless of which scoring algorithm was applied (p-values < 0.001). Students living with a disability/chronic disease exhibited significantly lower utility scores relative to their healthy peers (p-values < 0.05). Higher socio-economic status (approximated by financial situation and frequency of family vacations) was also associated with higher utility scores (p-values < 0.005). The CHU9D-DK demonstrated good psychometric performance overall and shows potential as a valid and reliable instrument for assessing the HRQL of Danish young people. ClinicalTrials.gov identifier: NCT03391999, Registered 15 October 2017.

    更新日期:2019-12-23
  • Self-rated global health in the Norwegian general population
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-12-23
    Tore Bonsaksen; Øivind Ekeberg; Laila Skogstad; Trond Heir; Tine K. Grimholt; Anners Lerdal; Inger Schou-Bredal

    Prevalence studies are needed to assess the distribution of diseases. However, in a contrasting health promotion perspective, self-rated health is in itself an important field of study. This study investigated self-rated global health in the general population in Norway. As part of a national survey, a two-item measure of global health (score range 0–100) was administered to a general population sample, and 1776 of 4961 eligible participants (response rate 36%) responded. Group comparisons were conducted using independent t-tests and one-way analyses of variance, whereas factors associated with global health was investigated with linear regression analysis. In the adjusted analyses, better global health was associated with higher age (β = 0.13, p < 0.001), having higher education (β = 0.10, p < 0.001), being employed (β = 0.21, p < 0.001), and living with a spouse or partner (β = 0.05, p < 0.05). While global health was similar for men and women in the Norwegian general population, other sociodemographic variables were linked with global health. In particular, the link between employment and self-rated global health was strong. The findings are considered representative for the Norwegian population.

    更新日期:2019-12-23
  • Outcome preferences of older people with multiple chronic conditions and hypertension: a cross-sectional survey using best-worst scaling
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-12-19
    Hélène E. Aschmann; Milo A. Puhan; Craig W. Robbins; Elizabeth A. Bayliss; Wiley V. Chan; Richard A. Mularski; Renée F. Wilson; Wendy L. Bennett; Orla C. Sheehan; Tsung Yu; Henock G. Yebyo; Bruce Leff; Heather Tabano; Karen Armacost; Carol Glover; Katie Maslow; Suzanne Mintz; Cynthia M. Boyd

    Older people with hypertension and multiple chronic conditions (MCC) receive complex treatments and face challenging trade-offs. Patients’ preferences for different health outcomes can impact multiple treatment decisions. Since evidence about outcome preferences is especially scarce among people with MCC our aim was to elicit preferences of people with MCC for outcomes related to hypertension, and to determine how these outcomes should be weighed when benefits and harms are assessed for patient-centered clinical practice guidelines and health economic assessments. We sent a best-worst scaling preference survey to a random sample identified from a primary care network of Kaiser Permanente (Colorado, USA). The sample included individuals age 60 or greater with hypertension and at least two other chronic conditions. We assessed average ranking of patient-important outcomes using conditional logit regression (stroke, heart attack, heart failure, dialysis, cognitive impairment, chronic kidney disease, acute kidney injury, fainting, injurious falls, low blood pressure with dizziness, treatment burden) and studied variation across individuals. Of 450 invited participants, 217 (48%) completed the survey, and we excluded 10 respondents who had more than two missing choices, resulting in a final sample of 207 respondents. Participants ranked stroke as the most worrisome outcome and treatment burden as the least worrisome outcome (conditional logit parameters: 3.19 (standard error 0.09) for stroke, 0 for treatment burden). None of the outcomes were always chosen as the most or least worrisome by more than 25% of respondents, indicating that all outcomes were somewhat worrisome to respondents. Predefined subgroup analyses according to age, self-reported life-expectancy, degree of comorbidity, number of medications and antihypertensive treatment did not reveal meaningful differences. Although some outcomes were more worrisome to patients than others, our results indicate that none of the outcomes should be disregarded for clinical practice guidelines and health economic assessments.

    更新日期:2019-12-20
  • Further content validation of the 18-item NCCN/FACT Ovarian Symptom Index and its Disease Related Symptom-Physical (DRS-P) subscale for use in advanced ovarian cancer clinical trials
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-12-19
    Sara Shaunfield; Sally Jensen; Allison P. Fisher; Kimberly Webster; Shohreh Shahabi; Arijit Ganguli; David Cella

    This study evaluated pre-defined aspects of content validity of the 18-item NCCN FACT-Ovarian Symptom Index (NFOSI-18) and its Disease-Related Symptoms-Physical (DRS-P) subscale, as clinical trial outcome tools for patients with advanced ovarian cancer. Twenty-one women (mean age 59.5 years) diagnosed with advanced ovarian cancer completed the NFOSI-18 and participated in a cognitive interview to explore: (1) whether ‘pain’ and ‘cramps’ are considered redundant; (2) whether ‘fatigue’ and ‘lack of energy’ are overlapping concepts; (3) whether patients consider severity when responding to the item “I am bothered by constipation;” and (4) factors considered when responding to the item “I am sleeping well.” Interviews were audio-recorded, transcribed, and analyzed qualitatively. Pain was associated with discomfort, hurt, and life interference; ‘cramps’ was associated with pain, muscle tightening, and menstrual or digestive issues. Most (81%) considered the items “I have pain” and “I have cramps in my stomach area” to be more different than similar. Participants associated ‘fatigue’ with intense tiredness and ‘lack of energy’ with motivation and capability to complete daily activities. Item comparisons revealed a majority (65%) considered the items to be more different than similar. When responding to “I am bothered by constipation,” patients indicated constipation severity was related to bother. Finally, patients considered disease, treatment, and other factors when responding to “I am sleeping well.” Findings support content validity of the NFOSI-18 and its DRS-P as originally constructed. We propose an alternative scoring option that excludes the item “I am sleeping well” from the DRS-P when used as a symptom-focused index for clinical research in a regulatory context.

    更新日期:2019-12-19
  • Assessment of quality of life among parents of children with congenital heart disease using WHOQOL-BREF: a cross-sectional study from Northwest Saudi Arabia
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-12-16
    Saad Khoshhal; Khaled Al-Harbi; Ibrahim Al-Mozainy; Saeed Al-Ghamdi; Adnan Aselan; Mohammad Allugmani; Sherif Salem; Dina El-Agamy; Hany Abo-Haded

    Health-related quality of life (HRQOL) has garnered increasing interest especially for health care providers and researchers. The study aims to evaluate the HRQOL in parents of congenital heart disease (CHD) children, and to clarify the effect of the disease severity on the outcome of the HRQOL perception. Also, to analyze the internal consistency of the Arabic version of the World Health Organization (WHO) QOL-BREEF tool in order to determine whether the tool had good validity for the target population. A cross-sectional study. The HRQOL perception was evaluated using WHOQOL-BREF questionnaire, and the internal consistency of the tool was tested using Cronbach’s alpha (α-C), The study sample consisted of 200 individuals, 120 parents of CHD children, compared to 80 parents of children with minor illnesses (mean age of participating parents = 35.1 ± 9.8 years). While evaluating the HRQOL, the group of parents of children with minor illnesses had higher scores than the total group of parents of CHD children in all domains, indicating a better HRQOL. Class-IV subgroup of parents of CHD children showed the most significant lower total score of domains between all classes (44.47 ± 12, p < 0.001). With respect to the internal consistency of the WHOQOL-BREF, estimation of α-C values were 0.84 points for the group of parents of CHD children, and 0.87 for the group of parents of children with minor illnesses. This short-term study emphasized that, HRQOL scores among parents of CHD children are compromised, and the severity of their children illness significantly affect the total score of domains in their HRQOL perception. Furthermore, the tool showed to be practical and efficient to evaluate the QOL of parents of CHD children in our population in future researches.

    更新日期:2019-12-17
  • Measuring the outcomes of long-term care for unpaid carers: comparing the ASCOT-Carer, Carer Experience Scale and EQ-5D-3 L
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-12-16
    Stacey Rand; Juliette Malley; Florin Vadean; Julien Forder

    The ASCOT-Carer and Carer Experience Scale are instruments designed to capture aspects of quality of life ‘beyond health’ for family carers. The aim of this study was to compare and validate these two carer care-related measures, with a secondary aim to compare both instruments to the three-level EQ-5D (EQ-5D-3 L) measure of health-related quality of life. An interview survey was conducted with 387 carers of adults who used long-term care (also known as social care) support in England. Construct validity by hypothesis testing was assessed using Pearson correlation coefficient. Exploratory factor analysis was also applied to investigate the dimensionality of the combined items from the ASCOT-Carer and CES (as measures of carer quality of life ‘beyond health’) and the EQ-5D (as a measure of health-related quality of life). In the construct validity analysis, hypothesised differences in correlations were observed with two exceptions. The exploratory factor analysis indicated that the ASCOT-Carer, CES and EQ-5D-3 L items loaded onto three separate factors. The first factor comprised the seven ASCOT-Carer items plus two CES items (activities outside caring, support from friends and family). The second factor comprised three of the six CES items (fulfilment from caring, control over caring and getting on with the person you care for). The third factor included four of the five EQ-5D-3 L items. The findings indicate that the ASCOT-Carer, CES and EQ-5D-3 L capture separate constructs of social care-related quality of life (ASCOT-Carer) and carer experience (CES), which partially overlap in relation to activities outside caring and social support, and health-related quality of life (EQ-5D-3 L). The ASCOT-Carer and CES are both promising measures for the evaluation of social care support for carers that capture aspects of quality of life ‘beyond health’. The choice of whether to use the ASCOT-Carer or CES depends on the study objectives.

    更新日期:2019-12-17
  • Reliability and validity of Amharic version of EORTC QLQ-C30 and QLQ-BR23 modules for assessing health-related quality of life among breast cancer patients in Ethiopia
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-12-12
    Diriba Alemayehu Gadisa; Esayas Tadesse Gebremariam; Getnet Yimer Ali

    Breast cancer is the most common cancer among women and it affects quality of life of those women. So far, the two most frequently used tools for assessing health related quality of life in breast cancer patients, EORTC QLQ-C30 and EORTC QLQ-BR23 modules, were not validated in Ethiopia. Hence, the present study aimed to assess the psychometric properties of the tools among Ethiopian breast cancer patients. Institutional based longitudinal study was conducted from January 1 to May 1, 2017 GC at only nationwide oncology center, Tikur Anbessa Specialized Hospital (TASH), Addis Ababa, Ethiopia. A total of 146 patients who visited the facility during that period, with no missing quality of life data, were selected for analysis. The psychometric properties of the EORTC QLQ-C30 and EORTC QLQ-BR23 were evaluated in terms of reliability, convergent, divergent, construct and clinical validity using SPSS version 22. Satisfactory internal consistency reliability (Cronbach’s α coefficients > 0.7) was confirmed, except for cognitive function (α = 0.516) of EORTC QLQ-C30 and body image (α = 0.510) of EORTC QLQ-BR23. Multiple-trait scaling analysis demonstrated a good convergent and divergent validity. No scaling errors were observed. Most items in EORTC QLQ-BR23 possessed a weak or no correlation with its own dimension in EORTC QLQ-C30 (r < 0.4) except with some of symptom scales. A statistically significant chemotherapy induced quality of life scores changes (P ≤ 0.05) were observed in all dimensions of both instruments between baseline and the end of first cycle chemotherapy, except for body image (P = 0.985) and sexual enjoyment (P = 0.817) of EORTC QLQ-BR23, indicating clinical validity. Amharic version of the EORTC QLQ-C30 and EORTC QLQ-BR23 modules are valid and adequately reliable tool and can be used for clinical and epidemiological cancer researches to study the health related quality of life (HRQoL) of women with breast cancer in Ethiopia.

    更新日期:2019-12-13
  • The mediating role of sleep quality in the association between nocturia and health-related quality of life
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-12-11
    Edmond Pui Hang Choi; Eric Yuk Fai Wan; Jojo Yan Yan Kwok; Weng Yee Chin; Cindy Lo Kuen Lam

    Even though the negative impacts of nocturia on sleep quality and health-related quality of life (HRQOL) have been documented in previous research, their interrelationship has been poorly studied. This study aimed to explore whether nocturia would affect sleep quality, which in turn affects HRQOL. Participants aged 40 and above were randomly recruited from a Hong Kong public primary care clinic. Participants were asked to report the average number of nocturia (waking up at night to void) pisodes per night over a 1-month period. The Pittsburgh Sleep Quality Index (PSQI) and the 12-Item Short Form Health Survey version 2 (SF-12 v2) were administered. The mediation analysis was tested using multistage regression approach and bootstrap method. Of the 500 subjects who completed the survey, 31.2% reported symptomatic nocturia (having ≥2 nocturia episodes per night), and 60.4% experienced poor sleep quality (a PSQI global score > 5). Respondents with symptomatic nocturia had a poorer HRQOL in the domains of physical functioning (PF), role physical (RP) and social functioning (SF), general health (GH), vitality (VT) and physical component summary (PCS) of the SF-12 v2 than those without. Compared with the respondents without poor sleep quality, those with poor sleep quality had poorer HRQOL across all domains and summaries of the SF-12 v2. Mediation analysis found that sleep quality fully mediated the association between nocturia and the PF, RP and SF domains of the SF-12 v2, respectively, and partially mediated the association between nocturia and the GH, VT and PCS domains of the SF-12 v2, respectively. We found that sleep quality mediated the association between nocturia and HRQOL. To enhance the HRQOL of patients with nocturia, clinicians should not only focus on nocturia symptoms, but also on their sleep quality.

    更新日期:2019-12-11
  • Patient characteristics and valuation changes impact quality of life and satisfaction in total knee arthroplasty – results from a German prospective cohort study
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-12-09
    Julia Felix; Christian Becker; Matthias Vogl; Peter Buschner; Werner Plötz; Reiner Leidl

    Evaluation of variations in pre- and postoperative patient reported outcomes (PRO) and the association between preoperative patient characteristics and health and satisfaction outcomes after total knee arthroplasty (TKA) may support shared decision-making in Germany. Since previous research on TKA health outcomes indicated valuation differences in longitudinal data, experienced-based population weights were used for the first time as an external valuation system to measure discrepancies between patient and average population valuation of HRQoL. Baseline data (n = 203) included sociodemographic and clinical characteristics and PROs, measured by the EQ-5D-3 L and WOMAC. Six-month follow-up data (n = 161) included medical changes since hospital discharge, PROs and satisfaction. A multivariate linear regression analysis was performed to evaluate the relationship between preoperative patient characteristics and PRO scores. Patient acceptable symptom state (PASS) was calculated to provide a satisfaction threshold. Patient-reported health-related quality of life (HRQoL) valuations were compared with average experienced-based population values to detect changes in valuation. One hundred thirty-seven subjects met inclusion criteria. All PRO measures improved significantly. Preoperative WOMAC and EQ-5D VAS, housing situation, marital status, age and asthma were found to be predictors of postoperative outcomes. 73% of study participants valued their preoperative HRQoL higher than the general population valuation, indicating response shift. Preoperatively, patient-reported EQ-5D VAS was substantially higher than average experienced-based population values. Postoperatively, this difference declined sharply. Approximately 61% of the patients reported satisfactory postoperative health, being mainly satisfied with results if postoperative WOMAC was ≥82.49 (change ≥20.25) and postoperative EQ-5D VAS was ≥75 (change ≥6). On average, patients benefited from TKA. Preoperative WOMAC and EQ-5D VAS were predictors of postoperative outcomes after TKA. Particularly patients with high absolute preoperative PRO scores were more likely to remain unsatisfied. Therefore, outcome prediction can contribute to shared-decision making. Using general population valuations as a reference, this study underlined a discrepancy between population and patient valuation of HRQoL before, but not after surgery, thus indicating a potential temporary response shift before surgery.

    更新日期:2019-12-09
  • Diabetes in women and health-related quality of life in the whole family: a structural equation modeling
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-12-05
    Mina Moeineslam; Parisa Amiri; Mehrdad Karimi; Sara Jalali-Farahani; Niloofar Shiva; Fereidoun Azizi

    Although several studies indicate the effects of diabetes type 2 on health-related quality of life (HRQoL) in female subjects, the related impact of the disease on HRQoL in their family members has rarely been the focus of the empirical research. In this study we aim to investigate associations between diabetes in women and the HRQoL in these women and their family members, using the structural equation modeling (SEM). This family-based study was conducted on 794 women (11.1% with diabetes) as well as their spouses and children who participated in the Tehran Lipid and Glucose Study (TLGS) from 2014 to 2016. Data on HRQoL were collected using the Iranian version of the Short-Form 12-Item Health Survey version 2 (SF-12v2) and the Pediatric Quality of Life Inventory version™ 4.0 (PedsQL). SEM was conducted to evaluate the network of associations among studied variables. Data were analyzed using IBM SPSS Statistics & AMOS version 23 software. Mean age of women was 41.37 ± 5.32 years. Diabetes in women significantly affected their mental HRQoL (β = − 0.11, P < 0.01) but showed no significant direct associations with physical and mental HRQoL in their spouses or their children. However, poor mental HRQoL in women with diabetes was associated with decrease in both physical (β = − 0.02, P = 0.013) and mental (β = − 0.03, P < 0.01) HRQoL in their spouses and total HRQoL score in children (β = − 0.02, P < 0.01). Among women with diabetes type 2, beyond its effect on their mental HRQoL per se, demonstrated a negative association with the self-assessment of health status in their spouses and children. Such familial consequences are mainly attributed to the negative effect of the disease on the mental rather than the physical HRQoL in women with diabetes.

    更新日期:2019-12-05
  • Cultural adaptation and validation of the Norwegian version of the swallowing quality of life questionnaire (SWAL-QOL)
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-12-05
    Maribeth Caya Rivelsrud; Melanie Kirmess; Lena Hartelius

    Oropharyngeal dysphagia (OD) is a disorder that can have devastating and long lasting effects on a person’s medical, mental and psychosocial well-being, thus negatively impacting quality of life. There is currently no validated dysphagia-specific quality of life instrument in Norway. This project aims to evaluate the psychometric properties of the culturally adapted Norwegian version of SWAL-QOL (Nor-SWAL-QOL). The original SWAL-QOL was translated into Norwegian according the international translation guidelines. A group of 102 persons with OD and a group of 123 healthy controls were recruited to assess the validity and reliability of the Nor-SWAL-QOL. Correlation analysis of the Nor-SWAL-QOL and the Short Form 36 (SF-36) and correlation analysis of OD group and control group Nor-SWAL-QOL subscale scores were computed to determine convergent, discriminant, and known-groups validity which help comprise construct validity. Internal consistency, test-retest reliability and intraclass correlation coefficient (ICC) were computed for reliability. Convergent and discriminant validity was demonstrated between Nor-SWAL-QOL subscales and SF-36 domains, and distinguished between persons with and those without oropharyngeal dysphagia on all subscales and on the symptom frequency battery (p < 0.001). Additionally, the Nor-SWAL-QOL differentiated between symptom severity levels within the OD group; those requiring food and liquid modifications and those who are tube fed and not tube fed. Nor-SWAL-QOL showed good reliability with adequate internal consistency (Cronbach’s α ≥0.70), test-retest reliability (Spearman’s rho values 0.68–0.90) and ICC values (0.67–0.89) for all subscales and for the symptom frequency battery. Access to valid and reliable dysphagia-specific QoL outcome measures for health care practitioners, dysphagia clinicians and researchers is necessary for comprehensive assessment and treatment outcome measures. The Nor-SWAL-QOL exhibits sufficient psychometric properties for implementation in the Norwegian population.

    更新日期:2019-12-05
  • The relationship between individual-level deprivation and health-related quality of life
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-11-29
    Tahmid Kashem; Fatima Al Sayah; Andrews Tawiah; Arto Ohinmaa; Jeffery A. Johnson

    To examine the association between individual-level deprivation and health-related quality of life (HRQL) in the general population. Data from a population-based survey in the Canadian province of Alberta were used. Individual-level deprivation was assessed using the Canadian Deprivation Index (CDI) and the Ontario Deprivation Index (ODI). HRQL was assessed using the EQ-5D-5 L. Differences in problems in the EQ-5D-5 L dimensions, index and visual analogue scale (VAS) scores across levels of deprivation were examined. Multivariate logistic and linear regression models adjusted for socio-demographic and other characteristics were used to examine the independent association between deprivation and HRQL. Of the 6314 respondents, 39% were aged between 18 and 44 years and 38% between 45 and 64 years; 60% were female. Mean EQ-5D-5 L index and VAS scores were 0.85 (standard deviation [SD] 0.14) and 79.6 (SD 17.7), respectively. Almost one-third (30.6%) of respondents reported no problems on all EQ-5D-5 L dimensions. Few participants reported some problems with mobility (23.8%), self-care (6.2%) and usual activities (25.2%), while 59.3 and 35.5% reported some levels of pain/discomfort and anxiety/depression, respectively. Differences between the most and least deprived in reporting problems in EQ-5D-5 L dimensions, index and VAS scores were statistically significant and clinically important. In adjusted regression models for both deprivation indices, the least well-off, compared to the most well-off, had higher likelihood of reporting problems in all EQ-5D-5 L dimensions. Compared to the most well-off, the least well-off had an EQ-5D-5 L index score decrement of 0.18 (p < 0.01) and 0.17 (p < 0.01) for the CDI and ODI, respectively. Similarly, an inverse association was found between the VAS score and the CDI (β = − 17.3, p < 0.01) as well as the ODI (β = − 13.3, p < 0.01). Individual-level deprivation is associated with worse HRQL. Poverty reduction strategies should consider the effects of not only neighbourhood-level deprivation, but also that of individual-level deprivation to improve overall health.

    更新日期:2019-11-30
  • Validity and reliability of the Persian version of the psychosocial impact of dental aesthetics questionnaire
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-07-18
    Navid Naseri; Tahereh Baherimoghadam; Reza Rasooli; Moein Hamzeh; Fahimeh Merikh

    The psychosocial impact of dental aesthetics questionnaire (PIDAQ) is an efficient tool for assessment of oral health-related quality of life (OHRQoL). It evaluates the effect of dental esthetics on the psychosocial status of young adults. This questionnaire has been translated to many languages so far. However, it has not yet been translated to Persian. This study aimed to assess the validity and reliability of the Persian version of PIDAQ for use among the young adults. The questionnaire was translated to Persian, back-translated to English and underwent cultural adaptation and pretesting. It was then filled out by 398 young adults (215 females and 183 males) between 18 to 30 years in Shiraz, Iran. The Persian version of PIDAQ along with the index of orthodontic treatment need-aesthetic component (IOTN-AC) and the perception of occlusion (POS) index were administered among participants to assess its discriminant validity. Factor analysis extracted four domains and the factor loading of domains ranged from 0.479 to 0.837. The Cronbach’s alpha for the Persian version of PIDAQ ranged from 0.809 to 0.886. The mean score for each of the domains and the total score for PIDAQ, classified according to IOTN-AC and POS, showed a significant difference. The mean score acquired by subjects requiring orthodontic treatment was significantly higher than the score acquired by those not requiring orthodontic treatment (P = 0.00). The Persian version of PIDAQ has optimal validity, reliability and responsiveness for assessment of the psychosocial impact of malocclusion on the Iranian young adults.

    更新日期:2019-11-28
  • Rehabilitation interventions in randomized controlled trials for low back pain: proof of statistical significance often is not relevant
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-07-22
    Silvia Gianola; Greta Castellini; Davide Corbetta; Lorenzo Moja

    An observed statistically significant difference between two interventions does not necessarily imply that this difference is clinically important for patients and clinicians. We aimed to assess if treatment effects of randomized controlled trials (RCTs) for low back pain (LBP) are statistically significant and clinically relevant, and if RCTs were powered to achieve clinically relevant differences on continuous outcomes. We searched for all RCTs included in Cochrane Systematic Reviews focusing on the efficacy of rehabilitation interventions for LBP and published until April 2017. RCTs having sample size calculation and a planned minimal important difference were considered. In the primary analysis, we calculated the proportion of RCTs classified as “statistically significant and clinically relevant”, “statistically significant but not clinically relevant”, “not statistically significant but clinically relevant”, and “not statistically significant and not clinically relevant”. Then, we investigated how many times the mismatch between statistical significance and clinical relevance was due to inadequate power. From 20 eligible SRs including 101 RCTs, we identified 42 RCTs encompassing 81 intervention comparisons. Overall, 60% (25 RCTs) were statistically significant while only 36% (15 RCTs) were both statistically and clinically significant. Most trials (38%) did not discuss the clinical relevance of treatment effects when results did not reached statistical significance. Among trials with non-statistically significant findings, 60% did not reach the planned sample size, therefore being at risk to not detect an effect that is actually there (type II error). Only a minority of positive RCT findings was both statistically significant and clinically relevant. Scarce diligence or frank omissions of important tactic elements of RCTs, such as clinical relevance, and power, decrease the reliability of study findings to current practice.

    更新日期:2019-11-28
  • Individual differences and health in chronic pain: are sex-differences relevant?
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-07-22
    C. Suso-Ribera; V. Martínez-Borba; R. Martín-Brufau; S. Suso-Vergara; A. García-Palacios

    Because psychological variables are known to intercorrelate, the goal of this investigation was to compare the unique association between several well-established psychological constructs in pain research and pain-related outcomes. Sex differences are considered because pain is experienced differently across sex groups. Participants were 456 consecutive chronic pain patients attending a tertiary pain clinic (mean age = 58.4 years, SD = 14.8, 63.6% women). The study design was cross-sectional. Psychological constructs included personality (NEO-Five Factor Inventory), irrational thinking (General Attitudes and Beliefs Scale), and coping (Social Problem Solving Inventory). Outcomes were pain severity and interference (Brief Pain Inventory) and physical, general, and mental health status (Short Form-36). To decide whether the bivariate analyses and the two-block, multivariate linear regressions for each study outcome (block 1 = age, sex, and pain severity; block 2 = psychological variables) should be conducted with the whole sample or split by sex, we first explored whether sex moderated the relationship between psychological variables and outcomes. An alpha level of 0.001 was set to reduce the risk of type I errors due to multiple comparisons. The moderation analyses indicated no sex differences in the association between psychological variables and study outcomes (all interaction terms p > .05). Thus, further analyses were calculated with the whole sample. Specifically, the bivariate analyses revealed that psychological constructs were intercorrelated in the expected direction and mostly correlated with mental health and overall perceived health status. In the regressions, when controlling for age, sex, and pain severity, psychological factors as a block significantly increased the explained variance of physical functioning (ΔR2 = .037, p < .001), general health (ΔR2 = .138, p < .001), and mental health (ΔR2 = .362, p < .001). However, unique associations were only obtained for mental health and neuroticism (β = − 0.30, p < .001) and a negative problem orientation (β = − 0.26, p < .001). There is redundancy in the relationship between psychological variables and pain-related outcomes and the strength of this association is highest for mental health status. The association between psychological characteristics and health outcomes was comparable for men and women, which suggests that the same therapeutic targets could be selected in psychological interventions of pain patients irrespective of sex.

    更新日期:2019-11-28
  • Estimating health state utility from activities of daily living in the French National Hospital Discharge Database: a feasibility study with head and neck cancer
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-07-25
    Michaël Schwarzinger; Stéphane Luchini

    Health state utility (HSU) is a core component of QALYs and cost-effectiveness analysis, although HSU is rarely estimated among a representative sample of patients. We explored the feasibility of assessing HSU in head and neck cancer from the French National Hospital Discharge database. An exhaustive sample of 53,258 incident adult patients with a first diagnosis of head and neck cancer was identified in 2010–2012. We used a cross-sectional approach to define five health states over two periods: three "cancer stages at initial treatment" (early, locally advanced or metastatic stage); a "relapse state" and otherwise a "relapse-free state" in the follow-up of patients initially treated at early or locally advanced stage. In patients admitted in post-acute care, a two-parameter graded response model (Item Response Theory) was estimated from all 144,012 records of six Activities of Daily Living (ADLs) and the latent health state scale underlying ADLs was calibrated with the French EQ-5D-3 L social value set. Following linear interpolation between all assessments of the patient, daily estimates of utility in post-acute care were averaged by health state, patient and month of follow-up. Finally, HSU was estimated by health state and month of follow-up for the whole patient population after controlling for survivorship and selection in post-acute care. Head and neck cancer was generally associated with poor HSU estimates in a real-life setting. As compared to “distant metastasis at initial treatment”, mean HSU was higher in other health states, although numerical differences were small (0.45 versus around 0.54). It was primarily explained by the negative effects on HSU of an older age (38.4% aged ≥70 years in “early stage at initial treatment”) and comorbidities (> 50% in other health states). HSU estimates significantly improved over time in the “relapse-free state” (from 8 to 12 months of follow-up). HSU estimates in head and neck cancer were primarily driven by age at diagnosis, comorbidities, and time to assessment of cancer survivors. This feasibility study highlights the potential of estimating HSU within and across severe conditions in a systematic way at the national level.

    更新日期:2019-11-28
  • Fatigue in chronic hepatitis B patients is significant and associates with autonomic dysfunction
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-07-25
    Hong Wang; Ying Zhou; Rong Yan; Guo Qing Ru; Li Li Yu; Jiong Yao

    Fatigue is an important clinical finding in patients with chronic hepatitis virus infection. However, studies assessing fatigue in patients with chronic hepatitis B (CHB) are very limited. This study aimed to quantify the severity of fatigue in patients with CHB, to determine whether perceived fatigue reflects impairment of functional ability, and to explore potential causes. A total of 133 patients with histologically proven CHB and 59 community controls were assessed using the fatigue impact scale (FIS). The degree of fatigue was significantly higher in patients with CHB than in controls (mean (range) FIS 24.9 (0–91) vs. 15.7 (0–31), p < 0.001). Fatigue experienced by patients with CHB was similar to that in primary biliary cirrhosis (PBC) (n = 20) (FIS 22.2 vs. 20.9, p = 0.28). No association was found between FIS and biochemistry and histological parameters of liver disease severity. Significant associations were found between fatigue severity and cognitive impairment (r = 0.39, p < 0.001), daytime somnolence (r = 0.32, p < 0.001), scores of the Chronic Liver Disease Questionnaire (r = − 0.31, p < 0.001), and autonomic symptoms (r = 0.43, p < 0.001). The level of autonomic symptom was the only factor independently associated with the degree of fatigue. Fatigue is a significant problem of functional ability impairment in CHB and similar in degree to that in PBC patients. Fatigue in patients with CHB appears to be unrelated to the severity of liver disease but is associated with significant autonomic symptoms.

    更新日期:2019-11-28
  • The association between elderly people’s sedentary behaviors and their health-related quality of life: focusing on comparing the young-old and the old-old
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-07-26
    Yujeong Kim; Eunmi Lee

    Research on the effects of sedentary behavior on the health-related quality of life (HRQoL) of the elderly is limited. The present study aimed to determine the association between sedentary behavior and the HRQoL of the young-old (aged 65–74 years) people and old-old (aged ≥75 years) people. This study used the raw data of the 7th Korea National Health and Nutrition Examination Survey for 2016. The study subjects were 1,415 people aged over 65 years. The association between HRQoL and average daily sitting time was analyzed using the point biserial correlation coefficient. The effect of sedentary behavior on HRQoL was analyzed by logistic regression analysis. Overall, elderly people aged ≥65 years spent 7.9 h in sedentary pursuits: the young-old spent 7.7 h and the old-old spent 9.0 h. Longer sitting time was found to be associated with lower HROoL while shorter sitting time was associated with higher HROoL, with the relationship stronger among the old-old than among the young-old. This means that the effects of either having longer time sitting per day and low quality of life or shorter time sitting per day and high quality of life are more pronounced in the old-old in comparison to the young-old. Sedentary behavior is significantly associated with people’s HRQoL. Interventions towards improving the HRQoL by reducing sedentary behavior based on the respective characteristics of young-old and old-old people are needed.

    更新日期:2019-11-28
  • Investigation of swallowing function and swallowing-related quality of life after partial laryngectomy in Chinese patients with laryngeal carcinoma
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-07-26
    Hui Yang; Dongfang Han; Xiaoyong Ren; Huanan Luo; Xiaomei Li

    Swallowing function and swallowing-related quality of life (QoL) can be adversely affected in patients after partial laryngectomy, but are often neglected by patients and clinical workers. This study aimed to investigate the degree of swallowing function and swallowing-related QoL after partial laryngectomy in patients with laryngeal carcinoma. Sixty-eight hospitalized patients undergoing partial laryngectomy due to laryngeal carcinoma at the Second Affiliated Hospital of Xi’an Jiao Tong University were included in this prospective study. A general information questionnaire was used to collect baseline characteristics. The water swallow test and swallowing quality of life questionnaire (SWAL-QOL) were carried out the day before surgery and at 2, 4, 12, 24 and 48 weeks after surgery. Swallowing dysfunction occurred in 1 case (1.5%) the day before surgery and in 49 (72.1%), 44 (64.7%), 33 (49.3%), 19 (28.4%) and 8 (11.9%) cases at 2, 4, 12, 24 and 48 weeks after surgery, respectively. Mean SWAL-QOL total scores were 4266.3 ± 232.0 the day before surgery, and 1992.9 ± 1062.4, 2473.9 ± 962.9, 3169.2 ± 753.6, 3696.7 ± 718.3 and 3910.8 ± 1510.4 at 2, 4, 12, 24 and 48 weeks, respectively. SWAL-QOL total scores increased gradually after operation, and the differences were statistically significant (P < 0.05). There was no statistical difference between postoperative 24 and 48 weeks (P = 0.379). Partial laryngectomy affects swallowing function and swallowing-related QoL in patients with laryngeal carcinoma. While swallowing function and swallowing-related QoL increase gradually over time, in some patients, nearly a year after surgery they are not fully restored. Therefore, attention should be paid during postoperative nursing to improve swallowing function.

    更新日期:2019-11-28
  • Areas of work-life in Spanish hostelry professionals: explanatory power on burnout dimensions
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-07-30
    Santiago Gascón; Bárbara Masluk; Jesús Montero-Marin; Michael P. Leiter; Paola Herrera; Agustín Albesa

    Researchers have studied for decades workplace stress and burnout to identify their relationship to health and wellness. This research has focused on stress levels in people, as well as on environmental and personal factors that contribute to experiencing stress or burnout. In addition to the burnout measurement questionnaires (MBI-GS), Leiter and Maslach designed a model to evaluate the areas of work environment that relate to this construct (Areas of Worklife Scale-AWLS). The goal of the present research was to analyze the psychometric properties of a Spanish translation of the MBI (GS) and the AWLS with a Spanish-speaking population. This work makes a substantial contribution by addressing the need to use validated measures and methods when exploring the positive and negative aspects of organizations. These conditions provide a means to accurately evaluate the impact of interventions aimed to address stress and burnout. Cross-sectional study with self-report measures. The sample was comprised of 452 managers and employees (hotels, restaurants, catering) of Aragón (Spain). There were approximately equal numbers of women and men (45,4% vs. 54,6%). The average age of participants was 36.6 years (SD = 10.03). A battery of questionnaires was used: Socio-demographic and work characteristics, Scale of stress and health symptoms, Maslach Burnout Inventory-General Survey (MBI-GS), Areas of Worklife Scale (AWLS). The results showed optimal psychometric properties in both questionnaires, especially in terms of the predictive capacity of the AWLS in each of the MBI-GS dimensions. The best explained dimension is that of emotional exhaustion. The manageable load variable is the one that most contributes to predicting burnout levels. For future interventions, the results confirm the need to verify the levels of each area of work, in order to focus on the most deteriorated ones.

    更新日期:2019-11-28
  • Attitudes toward and beliefs about obese persons across Hong Kong and Taiwan: wording effects and measurement invariance
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-07-30
    Meng-Che Tsai; Carol Strong; Janet D. Latner; Yi-Ching Lin; Amir H. Pakpour; Chung-Ying Lin; Shu-Mei Wang

    The psychosocial consequences of obesity are important but often underrated. The Attitudes Toward Obese Persons (ATOP) and Beliefs About Obese Persons (BAOP) scales used to measure weight-related bias have little psychometric information, especially in East Asian contexts. The objective of this study was to use rigorous statistical methods to demonstrate the psychometric properties of these two instruments in Hong Kong and Taiwanese college students. A convenience sample of 707 students was recruited from the universities in Hong Kong and Taiwan. Several competing confirmatory factor analyses (CFAs) were conducted to confirm the factorial structure of the ATOP and BAOP. The best fit models for the ATOP and BAOP were chosen for the examination of the measurement invariance across subcultures. We then compared configurable models with or without loading and/or intercept constrained before correlating the latent constructs between the best models for the ATOP and BAOP. The comparison in multiple CFAs found that the model with one factor and two correlated-wording-method factors outperformed the other models for both the ATOP and BOAP. However, the internal consistency was suboptimal (ATOP: α = .56 to .80; BTOP: α = .57 to .65) and the measurement invariance was somewhat unsupported among the Hong Kong and Taiwan samples. Moreover, after controlling wording effects, the latent construct of the ATOP was moderately associated with that of BAOP (r = .356; p < .001). Chinese versions of the ATOP and BAOP can be treated as a unidimensional factor for use in Hong Kong and Taiwan university students. However, further refinements of both instruments may be needed before using them to capture the social attitudes and beliefs toward obesity individuals, which is expected to advance our understanding of weight-related bias in East Asian contexts.

    更新日期:2019-11-28
  • A quality of life questionnaire for adolescents with cerebral palsy: psychometric properties of the Bengali CPQoL-teens
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-08-02
    Rosalie Power; Rahena Akhter; Mohammad Muhit; Sabrina Wadud; Eamin Heanoy; Tasneem Karim; Nadia Badawi; Gulam Khandaker

    Quality of life (QoL) and health-related quality of life (HRQoL) measurement in low and middle-income countries of people with cerebral palsy (CP), the major cause of childhood physical disability, is essential to assess the impact of interventions and inform policies that best improve people’s lives. The purpose of this study was to cross-culturally translate and psychometrically validate the Cerebral Palsy Quality of Life-Teens (CPQoL-Teens) self- and proxy-report questionnaires for application with adolescents with CP in Bangladesh. The CPQoL-Teens questionnaires were translated to Bengali using forward and backwards cross-cultural translation protocols. The questionnaires were interviewer administered to adolescents and their primary caregivers, identified through the Bangladesh Cerebral Palsy Register. Feasibility, sensitivity, internal consistency, content, concurrent and construct validity were assessed. One hundred fifty four adolescents with CP (10 to 18y; mean 15y 1mo SD 1y 8mo; 31.2% female) participated. Feasibility, sensitivity and internal consistency of both self- and proxy-report questionnaires was excellent; nil missing scores except ‘school wellbeing’ which was associated with non-school attendance (48.4 to 74.7%); floor and ceiling effect ≤13.6%; Cronbach’s alpha 0.77 to 0.94. Instrument validity was good; confirmatory factor analysis reflected five of the seven original instrument dimensions. CPQoL-Teens correlated to Kidscreen-27 on most dimensions (r = 0.176 to 0.693, p < 0.05); minimal difference in known groups was observed by mental health status (p < 0.05) although could be accounted for by homogeneity of mental health problems in the sample. The CPQoL-Teens self- and proxy report questionnaires successfully translated to Bengali and showed excellent feasibility and strong psychometric properties confirming suitability to assess indicators of HRQoL among adolescents with CP in Bangladesh.

    更新日期:2019-11-28
  • Using the Fatigue Severity Scale to inform healthcare decision-making in multiple sclerosis: mapping to three quality-adjusted life-year measures (EQ-5D-3L, SF-6D, MSIS-8D)
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-08-05
    E. Goodwin; A. Hawton; C. Green

    Fatigue has a major influence on the quality of life of people with multiple sclerosis. The Fatigue Severity Scale is a frequently used patient-reported measure of fatigue impact, but does not generate the health state utility values required to inform cost-effectiveness analysis, limiting its applicability within decision-making contexts. The objective of this study was to use statistical mapping methods to convert Fatigue Severity Scale scores to health state utility values from three preference-based measures: the EQ-5D-3L, SF-6D and Multiple Sclerosis Impact Scale-8D. The relationships between the measures were estimated through regression analysis using cohort data from 1056 people with multiple sclerosis in South West England. Estimation errors were assessed and predictive performance of the best models as tested in a separate sample (n = 352). For the EQ-5D and the Multiple Sclerosis Impact Scale-8D, the best performing models used a censored least absolute deviation specification, with Fatigue Severity Scale total score, age and gender as predictors. For the SF-6D, the best performing model used an ordinary least squares specification, with Fatigue Severity Scale total score as the only predictor. Here we present algorithms to convert Fatigue Severity Scales scores to health state utility values based on three preference-based measures. These values may be used to estimate quality-adjusted life-years for use in cost-effectiveness analyses and to consider the health-related quality of life of people with multiple sclerosis, thereby informing health policy decisions.

    更新日期:2019-11-28
  • Health related quality of life among children with transfusion dependent β-thalassaemia major and haemoglobin E β-thalassaemia in Sri Lanka: a case control study
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-08-08
    Sachith Mettananda; Hashan Pathiraja; Ravindu Peiris; Dayananda Bandara; Udaya de Silva; Chamila Mettananda; Anuja Premawardhena

    Thalassaemia is a chronic disease without an effective cure in a majority. The clinical management has improved considerably during recent years; however, minimal attempts are made to up lift the quality of life among patients, especially in developing countries. Here we aim to describe and compare and to determine factors associated with health related quality of life among patients with transfusion dependent β-thalassaemia major and haemoglobin E β-thalassemia in Sri Lanka. A case control study was conducted in the three largest thalassaemia centres of Sri Lanka. All patients with transfusion dependent β-thalassaemia (β-thalassaemia major and haemoglobin E β-thalassaemia) aged 5–18 years were recruited as cases whilst a randomly selected group of children without chronic diseases were recruited as controls. Socio-demographic and clinical data were collected using an interviewer-administered questionnaire and health related quality of life was measured using the validated Paediatric Quality of Life Inventory Version 4.0. Two hundred and seventy one patients with transfusion dependent β-thalassaemia (male-49.1%; mean age- 10.9 ± 3.6 years) and 254 controls (male-47.2%; mean age- 10.4 ± 3.5 years) were recruited. Mean health-related quality of life scores were significantly lower in patients compared to controls (72.9 vs. 91.5, p < 0.001). Of the patients, 224 (84%) had β-thalassaemia major and 43 (16%) had haemoglobin E β-thalassaemia. Quality of life scores in psychological health (p < 0.05), emotional functioning (p < 0.05) and social functioning (p < 0.05) were significantly lower in patients with haemoglobin E β-thalassaemia compared to β-thalassaemia major. Splenectomy (p < 0.05), short stature (p < 0.05), under nutrition (p < 0.05) and longer hospital stays (p < 0.05) were significantly associated with lower quality of life scores. Despite improvements in management, the quality of life among patients with β-thalassaemia still remains low. This is more pronounced in the subset of patients with haemoglobin E β-thalassaemia. Splenectomy, short stature, undernutrition and longer hospital stays were significantly associated with poor quality of life. It is timely, even in developing countries, to direct emphasis and to take appropriate steps to improve standards of living and quality of life of patients with β-thalassaemia.

    更新日期:2019-11-28
  • Correction to: Cross-cultural adaptation, reliability, and validity of the Vertigo symptom scale–short form in the central Kurdish dialect
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-08-09
    Sherko Saeed F. Zmnako; Yousif Ibrahim Chalabi

    The original article [1] contained a minor typo in Fig. 1 affecting the motif ‘VSS-SF-CK’; this has since been corrected.

    更新日期:2019-11-28
  • Measurement invariance properties and external construct validity of the short Warwick-Edinburgh mental wellbeing scale in a large national sample of secondary school students in Wales
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-08-14
    G.J. Melendez-Torres; Gillian Hewitt; Britt Hallingberg; Rebecca Anthony; Stephan Collishaw; Jeremy Hall; Simon Murphy; Graham Moore

    The study of mental wellbeing requires reliable, valid, and practical measurement tools. One of the most widely used measures of mental wellbeing is the Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS). Our aim was to examine the psychometric properties of SWEMWBS (a brief seven-item version) in a ‘real-world’ population sample of young people. We used data from the 2017 School Health Research Network Student Health and Wellbeing Survey, completed by 103,971 students in years 7 to 11 from 193 secondary schools in Wales. We first estimated polychoric correlation matrices for the whole sample and by school year, and undertook a principal components analysis to check for configural invariance. Subsequently, we used a multiple-groups structural equation model with successively greater constraints to test measurement invariance. To examine external construct validity, we calculated correlations between the SWEMWBS score and four covariates: life satisfaction, somatisation, school pressure and bullying victimisation. Parallel analysis suggested that extraction of one factor was appropriate both overall and in each year group. Inspection of standardised loadings suggested that four items had progressively stronger correlations with the factor as students are older, but change in fit indices between models suggested that loadings and thresholds, but not residual variances, were invariant by age group. SWEMWBS scores were moderately correlated with measures of life satisfaction and somatisation, and weakly to moderately correlated with school pressure and bullying victimisation. This study adds to the growing evidence that SWEMWBS is appropriate for measuring mental wellbeing in young people and suggests that SWEMWBS is appropriate for tracking the development of wellbeing across adolescence.

    更新日期:2019-11-28
  • Psychometric properties of the National Eye Institute Visual Function Questionnaire (NEI-VFQ 25) in a Norwegian population of patients with neovascular age-related macular degeneration compared to a control population
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-08-14
    Elma Jelin; Torbjørn Wisløff; Morten C. Moe; Turid Heiberg

    Although visual acuity and optical coherence tomography (OCT) are most widely used as outcomes in treatment of neovascular age-related Macular Degeneration (nAMD), patient reported outcome measures are increasingly recognized. National Eye Institute Visual Function Questionnaire (NEI-VFQ 25) was developed to capture the perceived visual function. Yet, evidence of psychometric performance in the target population is required. The aim of this study was to examine the psychometric properties of NEI-VFQ 25 in a Norwegian cohort of newly diagnosed nAMD patients followed with a Treat and Extend (T/E) protocol. Patients receiving intravitreal anti–vascular endothelial growth factor (anti-VEGF) injection treatment according to a T/E protocol completed a Norwegian translation of NEI-VFQ 25, EuroQoL Health Questionnaire (EQ-5D), and Patient acceptable symptom state (PASS 5) at baseline, 3, 6 and 12 months. In addition, a control population completed the same questionnaires. Visual acuity was assessed with LogMar for best/treated eye. Validity testing comprised face validity by a 0–10 numeric rating scale about relevance of NEI-VFQ 25 as well as regression analyses and correlations between NEI-VFQ 25 and other relevant variables. Reliability was examined with Intraclass Correlation Coefficient (ICC) and Cronbach’s alpha for internal consistency were performed. Responsiveness, discriminatory power and predictive value were also explored. Number of respondents at baseline, after 3, 6 and 12 months was 197, 186, 176 and 168, respectively. The control population comprised 26 individuals. Face validity of NEI-VFQ 25 had a mean (SD) of 7.8 (1.7) (n = 84). NEI-VFQ was significantly correlated to visual acuity and PASS 5 as well as EQ-5D at baseline. Reliability (ICC) of the overall and sub scores for the patients/controls ranged from 0.49–0.97/0.59–0.97. Cronbach’s alpha was 0.61–0.85. Discriminatory power was confirmed by significant differences of the overall score between controls and patients (P < 0.001). NEI-VFQ 25 indicates responsiveness showing overall score improved significantly (P ≤ 0.001) from baseline to 3 months. NEI-VFQ 25, general health and visual acuity at baseline were the strongest predictors for how patients reported vision after 6 months follow-up. NEI-VFQ 25 showed acceptable psychometric performance, which supports that the Norwegian version can be used to monitor patients treated for nAMD.

    更新日期:2019-11-28
  • Health-related quality of life and glycaemic control among adults with type 1 and type 2 diabetes – a nationwide cross-sectional study
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-08-14
    Maria Svedbo Engström; Janeth Leksell; Unn-Britt Johansson; Sixten Borg; Bo Palaszewski; Stefan Franzén; Soffia Gudbjörnsdottir; Katarina Eeg-Olofsson

    Health-related quality of life and glycaemic control are some of the central outcomes in clinical diabetes care and research. The purpose of this study was to describe the health-related quality of life and assess its association with glycaemic control in adults with type 1 and type 2 diabetes in a nationwide setting. In this cross-sectional survey, people with type 1 (n = 2479) and type 2 diabetes (n = 2469) were selected at random without replacement from the Swedish National Diabetes Register. Eligibility criteria were being aged 18–80 years with at least one registered test of glycated haemoglobin (HbA1c) the last 12 months. The generic 36-item Short Form version 2 (SF-36v2) was answered by 1373 (55.4%) people with type 1 diabetes and 1353 (54.8%) with type 2 diabetes. Correlation analyses showed weak correlations between scores on the SF-36v2 and glycaemic control for both diabetes types. After the participants were divided into three groups based on their levels of HbA1c, multivariate regression analyses adjusted for demographics, other risk factors and diabetes complications showed that among participants with type 1 diabetes, the high-risk group (≥70 mmol/mol/8.6%) had statistically significantly lower means in five out of eight domains of the SF-36v2 and the mental component summary measure, as compared with the well-controlled group (< 52 mmol/mol/6.9%). Among the participants with type 2 diabetes, the high-risk group had the lowest statistically significantly means in seven domains and both summary measures. Among people with type 1 and type 2 diabetes, adults with high-risk HbA1c levels have lower levels of health-related quality of life in most but not all domains of the SF-36v2. This finding was not explained by demographics, other risk factors, or diabetes complications. The weak individual-level correlations between HRQOL scores and levels of glycaemic control argues for the need to not focus exclusively on either HbA1c levels or HRQOL scores but rather on both because both are important parts of a complex, life-long, challenging condition.

    更新日期:2019-11-28
  • Health-related quality of life of patients with multidrug-resistant tuberculosis in Yemen: prospective study
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-08-16
    Ammar Ali Saleh Jaber; Baharudin Ibrahim

    Substantial efforts are currently focused on investigating and developing new multidrug-resistant tuberculosis (MDR-TB) drugs and diagnostic methods. In Yemen, however, the evaluation of health-related quality of life (HRQoL) and the effect of current MDR-TB treatment on the QoL are commonly ignored. This study evaluated the HRQoL during and after treatment and identified the risk factors that are predictive of HRQoL score differences. A prospective cohort study was conducted in four of the five main MDR-TB centres in Yemen. The patients confirmed with MDR-TB completed the SF-36 V2 survey at the beginning of treatment, end of treatment (continous phase) and at the 1 year follow-up after completing treatment. A total normal base score (NBS) of < 47 reflects impairment of functions, whereas a mental component summary (MCS) score of < 43 indicates a risk of depression. At the beginning of treatment, the mean scores for all health domains were < 47 NBS points (PF = 40.7, RP = 16.1, BP = 21.6, GH = 28.3, VT = 14.55, SF = 25.9, RE = 13.7, and MH = 14.7). At the completion of treatment, all eight health domains increase compare to beginning of treatment (PF = 59.3, RP = 31.1, BP = 40.9, GH = 48.5, VT = 30.5, SF = 46.6, RE =26.6 & MH = 27.7), but a follow-up duration of 1 year after completing treatment showed decreased NBS points in all domains (PF = 51.5, RP = 30.6, BP = 39.1, GH = 47.8, VT = 30.2, SF = 43.7, RE =26.4 & MH = 27.2). Age, history of streptomycin use, baseline lung cavity, marital status and length of sickness before MDR-TB diagnosis were predictive of in PCS score differences, whereas, age, smoking, baseline lung cavity, stigma, residence, marital status and length of sickness before MDR-TB diagnosis were predictive of MCS scores differences. The length of sickness before DR-TB diagnosis was found to be predictive of the trends in both PCS and MCS scores. Despite the positive outcome of MDR-TB treatment, the low HRQoL scores obtained for all heath domains and especially for mental health reflect a high depression status of patients even after 1 year of completing therapy. Moreover, the poor HRQoL, particularly regarding mental health, of study participants at the end of treatment demands the need for urgent attention from national tuberculosis control programme managers. Therefore, the Yemen Ministry of Health and the National Tuberculosis Control Programme should implement an intervention programme to enhance HRQoL at the end of treatment to avoid any further negative consequences of MDRTB in patients after treatment. Moreover, The HRQoL data of patients with MDR-TB must be collected at the different stages of MDR-TB treatment to provide an additional parameter for assessing the effectiveness of the treatment programme. SNOYEM 1452. Registered 01 February 2013.

    更新日期:2019-11-28
  • Development and validation of a sexual relations satisfaction scale in patients with breast cancer — “SEXSAT-Q”
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-08-17
    Rosario González Mancha; Montserrat Muñoz; Luis de la Cruz-Merino; Lourdes Calvo; Josefina Cruz; Jose Manuel Baena-Cañada; Yolanda Fernandez; Manuel Ramos; Cesar Augusto Rodriguez; Jose Ignacio Chacón; Isabel Palomero; Julia Llinares; María Rivero; Miguel Ángel Ruiz

    Because the currently available questionnaires to evaluate sexual changes on breast cancer women only address the sexual sphere with a few questions our purpose was to develop a questionnaire that assesses changes in sexual dysfunction and satisfaction in women treated for breast cancer. A sample was selected of women aged between 18 and 65 who had had surgery for breast cancer, completed neoadjuvant/adjuvant chemotherapy treatment and could be receiving adjuvant hormonal treatment, with an active sex life at least 3 months before starting treatment. Metastatic disease was excluded. A questionnaire structured in 4 dimensions was developed. The MOS SF-12 and QLQ-BR23 questionnaires were also provided. The following metric properties were evaluated: item analysis; internal consistency; temporal stability; construct validity; concurrent, convergent and divergent validity; and feasibility. Three samples were recruited: a pilot sample of 20; a reduction sample of 152; and a validation sample of 148. The presence of 6 dimensions was confirmed: 1) Loss of sex drive; 2) worsening of body image; 3) psychological coping; 4) discomfort during intercourse; 5) satisfaction with sexual relations; and 6) satisfaction with breast reconstruction. Good goodness-of-fit statistics were obtained (χ2/df = 1.5, GFI = 0.9, AGFI = 0.84, CFI = 0.959, RMSEA = 0.062). Reliability was good (α = 0.855), as was test–retest stability (r = 0.838). The correlation with the convergent questionnaires proved to be higher than that obtained with generic measurements. We were able to develop a short questionnaire (17 items) capable of measuring sexual satisfaction in women with breast cancer with good metric properties.

    更新日期:2019-11-28
  • Assessing quality of life in people with HIV in Spain: psychometric testing of the Spanish version of WHOQOL-HIV-BREF
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-08-19
    Maria Jose Fuster-RuizdeApodaca; Ana Laguía; Kelly Safreed-Harmon; Jeffrey V. Lazarus; Santiago Cenoz; Julia del Amo

    The assessment of health-related quality of life (HRQoL) in people living with HIV (PLHIV) has become crucial to evidence-based practice. The goals of this study are to analyze the psychometric properties and evidence of the validity of the Spanish version of WHOQOL-HIV-BREF in a sample of PLHIV in Spain and to examine the more impaired HRQoL facets and dimensions and identify the PLHIV who show the most vulnerable profile. A total of 1462 PLHIV participated in an observational cross-sectional ex-post-facto study. Data were collected at 33 Spanish sites through an online survey. In addition to measuring HRQoL, the study used other tools to measure treatment adherence (CEAT-VIH 2.0 version), psychological well-being (GHQ-12) and HIV-related stigma (HSSS). Cronbach’s alpha, first- and second-order confirmatory factor analysis (CFA), the Pearson coefficient and one-way ANOVA were used to evaluate reliability, construct validity and concurrent and known-group validity, respectively. Differences according to the socio-demographic and epidemiological profiles of participants were analyzed. First- and second-order CFAs confirmed a six-domain first-order structure of the Spanish version of WHOQOL-HIV-BREF and one second-order factor related to overall HRQoL with an acceptable fit to the data, although some minor changes would improve it. The six-domain structure showed an acceptable internal consistency (Cronbach’s alpha ranged from .61 to .81). Significant moderate to large correlations between domains and overall HRQoL, adherence, psychological well-being and negative self-image were found. Significant differences were found according to participants’ self-reported CD4+ cell count in several HRQoL facets and domains. Being female, heterosexual, having low socio-economic and educational statuses, having acquired HIV through an unsafe injection and living more years with HIV were related to poorer HRQoL. PLHIV older than 50 presented lower scores in 19 HRQoL facets. This study demonstrates that the Spanish version of the WHOQOL-HIV-BREF is a valid instrument. It also presents the most recent data about HRQoL in PLHIV in Spain with the largest sample to date.

    更新日期:2019-11-28
  • Perceived social support and associations with health-related quality of life in young versus older adult patients with haematological malignancies
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-08-22
    Kristina Geue; Heide Götze; Michael Friedrich; Katja Leuteritz; Anja Mehnert-Theuerkauf; Annekathrin Sender; Yve Stöbel-Richter; Norbert Köhler

    This study compared the perceived social support of young and older adult cancer patients, examining possible influencing factors as well as associations with health-related quality of life. A total of 179 young patients (18–39 years) and 200 older adult patients (> 70 years) with haematological malignancies completed questionnaires on their perceived social support (ISSS-8, scales: Positive Support and Detrimental Interactions, range 0–16) and health-related quality of life (EORTC QLQ-C30). Tests for mean differences, correlations and regression analyses to determine associated variables of social support were performed. No difference was reported between young (M = 13.40, SD = 2.81) and older adult patients (M = 13.04, SD = 3.82; p = .313) for Positive Support. However, young patients (M = 4.16, SD = 3.10) reported having had more Detrimental Interactions than older patients did (M = 1.63, SD = 2.42; p < .001, Cohen’s d = .910). Comparison of the EORTC QLQ-C30 Function scales showed poorer outcomes for young patients on Emotional, Cognitive and Social Functions and a higher outcome on Physical Function compared with older adult patients. Regression analyses indicated that age (young vs. older adult patients) significantly explained proportions of variance in all models, with young age having a negative impact on Emotional, Cognitive and Social Functions and a positive impact on Physical and Role Functions compared with old age. Significant associations between Detrimental Interactions and all the scales examined except Cognitive Function were found. The difference in negative perceptions of social support in young vs. older adult patients and its impact on health-related quality of life emphasises the necessity of differentiating between positive and negative social support. Negative interactions should be addressed through psychosocial care, particularly with young cancer patients.

    更新日期:2019-11-28
  • A comparison of nurses’ and physicians’ perception of cancer treatment burden based on reported adverse events
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-08-22
    Shing M. Lee; Jieling Miao; Ruby Wu; Joseph M. Unger; Ken Cheung; Dawn L. Hershman

    Cancer treatments are associated with a multitude of adverse events (AEs). While both nurses and physicians are involved in patient care delivery and AE assessment, very few studies have examined the differences between nurses’ and physicians’ reporting and perception of AEs. An approach was recently proposed to assess treatment burden based on reported AEs from the physician’s perspective. In this paper, we use this approach to evaluate nurses’ perception of burden, and compare nurses’ and physicians’ assessment of the overall and relative burden of AEs. AE records for 334 cancer patients from a randomized clinical trial conducted by the SWOG Cancer Research Network were evaluated by 14 nurses at Columbia University Medical Center. Two nurses were randomly selected to assign a burden score from 0 to 10 based on their impression of the global burden of the captured AEs. These nurses did not interact directly with the patients. Scores were compared to previously obtained physicians scores using paired T-test and Kappa statistic. Severity scores for individual AEs were obtained using mixed-effects models with nurses assessments, and were qualitatively compared to physicians’. Given the same AEs, nurses’ and physicians’ perception of the burden of AEs differed. While nurses generally perceived the overall burden of AEs to be only slightly worse compared to physicians (mean average VAS score of 5.44 versus 5.14), there was poor agreement in the perception of AEs that were in mild to severe range. The percent agreement for a moderate or worse AE was 64% with a Kappa of 0.34. Nurses also assigned higher severity scores to symptomatic AEs compared to physicians (p < 0.05), such as gastrointestinal (4.77 versus 4.14), hemorrhage (5.07 versus 4.14), and pain (5.17 versus 4.14). These differences in the perception of burden of AEs can lead to different treatment decisions and symptom management strategies. Thus, having provider consistency, training, or a collaborative approach in follow-up care between nurses and physicians is important to ensure continuity in care delivery. Moreover, estimating overall burden from both physicians’ and nurses’ perspective, and comparing them may be useful for deciding when collaborations are warranted.

    更新日期:2019-11-28
  • Validation of the Italian version of the abbreviated expanded prostate Cancer index composite (EPIC-26) in men with prostate Cancer
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-08-29
    Chiara Marzorati; Dario Monzani; Ketti Mazzocco; Marianna Masiero; Francesca Pavan; Massimo Monturano; Gabriella Pravettoni

    This study aims to validate and evaluate the psychometric properties and reliability of the Italian version of the Expanded Prostate Cancer Index Composite – Short Form (EPIC-26), a measure of quality of life (QoL) for prostate cancer patients. Two hundred and eighty-four prostate cancer patients completed the Italian version of the EPIC-26 questionnaire at 45 days (T1) and 3 months (T2) after robot-assisted radical prostatectomy (RARP). Psychometric properties were evaluated using structural equation modeling: the goodness of fit of the correlated five-factor model (CFFM) for the EPIC-26 was assessed using the confirmatory factor analysis (CFA), while longitudinal invariance was conducted to assess the ability of the EPIC-26 to measure QoL construct over time. Test-retest reliability was assessed as well by considering intraclass correlations. At T1, the CFFM model displayed a good fit to data. Similarly, the model showed an adequate fit also at T2. Results of the reliability analysis attested the acceptable internal consistency and test-retest reliability of each dimension: all Cronbach’s alphas could be classified as acceptable (i.e., above .65) except for low Cronbach’s alpha for hormonal dysfunction at T1 (i.e., .638) and urinary irritation at both waves. (i.e., respectively .585 and .518). Finally, psychometric properties were invariant over time and each of the five dimensions of QoL displayed from moderate (all ICCs above .500) to good test-retest reliability (i.e. ICC for urinary incontinence = .764). Results of the CFA and the measurement invariance analysis demonstrated the validity of the Italian version of the EPIC-26 to assess QoL in prostate cancer patients. Its reliability and good psychometric qualities are well-supported, thus providing a valid tool to assess health-related quality of life and its change over time in prostate cancer patients.

    更新日期:2019-11-28
  • Patient-reported quality of life and hand disability in elderly patients after a traumatic hand injury – a retrospective study
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-08-30
    Ingrid Reitan; Lars B. Dahlin; Hans-Eric Rosberg

    Hand injuries occur at any age and cause disability in hand and arm function as well as impaired quality of life, but no study has focused on hand disability and quality of life in the elderly after a hand injury. Globally, the population over 60 years of age is expected to double by 2050 and more hand injuries are estimated among the elderly population. Our goal is to obtain more information and a better understanding of problems elderly patients experience after a hand injury to be able in the future to optimally relocate resources in the health care sector with respect to numbers and injury pattern as well as to health status of these patients. Patients aged more than 65 years with a traumatic hand/wrist/forearm injury treated (July 1st 2013 - June 30th 2014) at department of Hand Surgery, Malmö, Sweden were included. Health-related outcome questionnaires, i.e. QuickDASH, SF-36, Visual Analogue Scale (VAS), Cold Intolerance Severity Score (CISS), and general information were mailed to the patients (time from injury: > 1.5–2.5 years). The participants were compared in groups according to age, gender, cold intolerance, injury severity and previous occupation. One hundred and thirty-seven participants responded [response rate 55%; non-responders (n = 113); only difference between groups was that non-responders were older]. Women were older than men at the time of injury (p = 0.04) and differed regarding living conditions. The main differences in QuickDASH, all VAS questions, and the majority of SF-36 subscales (p < 0.05) were found in the participants with CISS > 50, who experienced more impairment. More serious injuries (Modified HISS) were found to have higher QuickDASH and CISS score as well as more functional impairment (p < 0.05). Few differences were found in groups divided according to age, gender (although men experiencing less functional impairment in QuickDASH), previous occupation and injured hand. Patients aged more than 65 years at the time a hand injury was sustained, generally experience a high-level quality of life and limited functional problems after such an injury, but patients with CISS > 50 and with a more serious injury were more severely affected.

    更新日期:2019-11-28
  • Religious practices and changes in health-related quality of life after hospital discharge for an acute coronary syndrome
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-09-03
    Hawa O. Abu; David D. McManus; Darleen M. Lessard; Catarina I. Kiefe; Robert J. Goldberg

    Religious beliefs and practices influence coping mechanisms and quality of life in patients with various chronic illnesses. However, little is known about the influence of religious practices on changes in health-related quality of life (HRQOL) among hospital survivors of an acute coronary syndrome (ACS). The present study examined the association between several items assessing religiosity and clinically meaningful changes in HRQOL between 1 and 6 months after hospital discharge for an ACS. We recruited patients hospitalized for an ACS at six medical centers in Central Massachusetts and Georgia (2011–2013). Participants reported making petition prayers for their health, awareness of intercessory prayers by others, and deriving strength/comfort from religion. Generic HRQOL was assessed with the SF-36®v2 physical and mental component summary scores. Disease-specific HRQOL was evaluated using the Seattle Angina Questionnaire Quality of Life subscale (SAQ-QOL). We separately examined the association between each measure of religiosity and the likelihood of experiencing clinically meaningful increase in disease-specific HRQOL (defined as increases by ≥10.0 points) and Generic HRQOL (defined as increases by ≥3.0 points) between 1- and 6-months post-hospital discharge. Participants (n = 1039) were, on average, 62 years old, 33% were women, and 86% were non-Hispanic White. Two-thirds reported praying for their health, 88% were aware of intercessions by others, and 85% derived strength/comfort from religion. Approximately 42, 40, and 26% of participants experienced clinically meaningful increases in their mental, physical, and disease-specific HRQOL respectively. After adjustment for sociodemographic, psychosocial, and clinical characteristics, petition (aOR:1.49; 95% CI: 1.09–2.04) and intercessory (aOR:1.72; 95% CI: 1.12–2.63) prayers for health were associated with clinically meaningful increases in disease-specific and physical HRQOL respectively. Most ACS survivors in a contemporary, multiracial cohort acknowledged praying for their health, were aware of intercessory prayers made for their health and derived strength and comfort from religion. Patients who prayed for their health and those aware of intercessions made for their health experienced improvement in their generic physical and disease-specific HRQOL over time. Healthcare providers should recognize that patients may use prayer as a coping strategy for improving their well-being and recovery after a life-threatening illness.

    更新日期:2019-11-28
  • Reproducibility, responsiveness and validation of the Tampa Scale for Kinesiophobia in patients with ACL injuries
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-09-11
    Hui Huang; Masashi Nagao; Hitoshi Arita; Jun Shiozawa; Hirofumi Nishio; Yohei Kobayashi; Haruka Kaneko; Masataka Nagayama; Yoshitomo Saita; Muneaki Ishijima; Yuji Takazawa; Hiroshi Ikeda; Kazuo Kaneko

    Psychological factors including fear of pain, re-injury during movement (kinesiophbia) affect return-to-sport rates after anterior cruciate ligament (ACL) reconstructive surgery. Clinicians often encounter in the daily practice that athletes explain lack of self-confidence or psychological readiness during the sports activity. The Tampa Scale for Kinesiophobia (TSK) has been used to evaluate psychological outcomes in patients with ACL injuries in many countries and translated into Japanese version in 2013. However, no researchers validated its reliability, validity, and responsiveness of TSK for patients with ACL injury up to now. The purpose of this study was to evaluate the measurement properties of the Japanese version of the TSK (TSK-J) in patients with ACL injuries. Cohort study (Diagnostic); Level of evidence, 2. This prospective study was performed in the department of orthopaedic surgery at the university hospital of Juntendo from Sep 2016 and Apr 2017. Patients who diagnosed with ACL injury with or without reconstruction surgery completed several patient-reported outcome measures (PROMs) were included in this study. The COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) guidelines were used to evaluate reliability, validity, responsiveness, and interpretability of the TSK-J. 222 patients were included in this study. The TSK-J for ACL injured patients showed good internal consistency (Cronbach’s alpha = 0.79) and excellent test-retest reliability (intra-class correlation coefficient, ICC2,1 = 0.90, 95% CI = 0.81 to 0.95). In addtion, the TSK-J was significantly but moderately correlated with the IKDC-SKF (r = − 0.49, P <0.001), VAS-Sports (r = − 0.48, P <0.001), and JACL-25 (r = 0.48, P <0.001). The effect size (ES) was small with the Cohen’s d = − 0.2. The minimal important difference (MID) was − 1.3 points. No significant TSK-J score change was observed over 1-year after ACL reconstruction (r = − 0.12, P <0.001). There were no floor or ceiling effects. Our study demonstrated that the Japanese version of TSK has good reliability. However, its low validity and responsiveness indicate that it may not the best way to assess psychological factors for patients with ACL injury.

    更新日期:2019-11-28
  • Survey of the effects of internet usage on the happiness of Japanese university students
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-10-11
    Momoko Kitazawa; Michitaka Yoshimura; Hidefumi Hitokoto; Yuka Sato-Fujimoto; Mayu Murata; Kazuno Negishi; Masaru Mimura; Kazuo Tsubota; Taishiro Kishimoto

    Besides research on psychiatric diseases related to problematic Internet use (PIU), a growing number of studies focus on the impact of Internet on subjective well-being (SWB). However, in previous studies on the relationship between PIU and SWB, there is little data for Japanese people specifically, and there is a lack of consideration for differences in perception of happiness due to cultural differences. Therefore, we aimed to clarify how happiness is interdependent on PIU measures, with a focus on how the concept of happiness is interpreted among Japanese people, and specifically among Japanese university students. A paper-based survey was conducted with 1258 Japanese university students. Respondents were asked to fill out self-report scales regarding their happiness using the Interdependent Happiness Scale (IHS). The relationship between IHS and Internet use (Japanese version of the Internet addiction test, JIAT), use of social networking services, as well as social function and sleep quality (Pittsburgh Sleep Quality Index, PSQI) were sought using multiple regression analyses. Based on multiple regression analyses, the following factors related positively to IHS: female gender and the number of Twitter followers. Conversely, the following factors related negatively to IHS: poor sleep, high- PIU, and the number of times the subject skipped a whole day of school. It was shown that there was a significant negative correlation between Japanese youths’ happiness and PIU. Since epidemiological research on happiness that reflects the cultural background is still scarce, we believe future studies shall accumulate similar evidence in this regard.

    更新日期:2019-11-28
  • Health-related quality of life outcomes in pediatric patients with cardiac rhythm devices: a cross-sectional study with case-control comparison
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-10-11
    Helene Werner; Phaedra Lehmann; Alina Rüegg; Silvia Hilfiker; Karin Steinmann; Christian Balmer

    Little is known about health-related quality of life (HRQoL) in pediatric patients with cardiac rhythm devices. This study aims to compare self- and proxy-reported HRQoL in patients with pacemaker (PM) and implantable cardioverter-defibrillator (ICD) to that in sex- and age-matched healthy controls and to examine predictors for generic and disease-specific HRQoL. The study included 72 PM and ICD patients (39% females) and 72 sex- and age-matched healthy controls from 3 to 18 years of age. HRQoL data was obtained by the PedsQL 4.0 Generic Core Scales and Pediatric Cardiac Quality of Life Inventory. Medical data was collected retrospectively from medical records. Patients had significantly lower self- and proxy-reported generic overall HRQoL and lower physical health than healthy controls, and ICD patients also had lower psychosocial health. On multivariate analyses, generic overall HRQoL and physical health was significantly predicted by current cardiac medication (β = −.39, p = .02 for overall HRQoL, respectively β = −.44, p = .006 for physical health). Disease-specific overall HRQoL was only marginally predicted by child age, device type, and the presence of a structural congenital heart disease (p < .10). This study shows that PM and ICD patients have lower HRQoL than healthy controls and that patients who need cardiac medication are seen by their parents at great risk for lower generic overall HRQoL. Our study also indicates a trend towards higher risk for low disease-specific HRQoL in younger patients, ICD patients, and patients with a structural congenital heart disease. Special attention should be given to these patients as they may benefit from a timely clinical evaluation in order to provide supportive interventions.

    更新日期:2019-11-28
  • Mapping function from FACT-B to EQ-5D-5 L using multiple modelling approaches: data from breast cancer patients in China
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-10-15
    Qing Yang; Xue Xin Yu; Wei Zhang; Hui Li

    The Functional Assessment of Cancer Therapy-Breast (FACT-B) is the most commonly used scale for assessing quality of life in patients with breast cancer. The lack of preference-based measures limits the cost-utility of breast cancer in China. The goal of this study was to explore whether a mapping function can be established from the FACT-B to the EQ-5D-5 L when the EQ-5D health-utility index is not available. A cross-sectional survey of adults with breast cancer was conducted in China. All patients included in the study completed the EQ-5D-5 L and the disease-specific FACT-B questionnaire, and demographic and clinical data were also collected. The Chinese tariff value was used to calculate the EQ-5D-5 L utility scores. Five models were evaluated using three different modelling approaches: the ordinary least squares (OLS) model, the Tobit model and the two-part model (TPM). Total scores, domain scores, squared terms and interaction terms were introduced into models. The goodness of fit, signs of the estimated coefficients, and normality of prediction errors of the model were also assessed. The normality of the prediction error is determined by calculating the root mean squared error (RMSE), the mean absolute deviation (MAD), and the mean absolute error (MAE). Akaike information criteria (AIC) and Bayes information criteria (BIC) were also used to assess models and predictive performances. The OLS model was followed by simple linear equating to avoid regression to the mean. The performance of the models was improved after the introduction of the squared terms and the interaction terms. The OLS model, including the squared terms and the interaction terms, performed best for mapping the EQ-5D-5 L. The explanatory power of the OLS model was 70.0%. The AIC and BIC of this model were the smallest (AIC = -705.106, BIC = -643.601). The RMSE, MAD and MAE of the OLS model, Tobit model and TPM were similar. The MAE values of the 5-fold cross-validation of the multiple models in this study were 0.07155~0.08509; meanwhile, the MAE of the TPM was the smallest, followed by that of the OLS model. The OLS regression proved to be the most accurate for the mean, and linearly equated scores were much closer to observed scores. This study establishes a mapping algorithm based on the Chinese population to estimate the EQ-5D-5 L index of the FACT-B and confirms that OLS models have higher explanatory power and that TPMs have lower prediction error. Given the accuracy of the mean prediction and the simplicity of the model, we recommend using the OLS model. The algorithm can be used to calculate EQ-5D scores when EQ-5D data are not directly collected in a study.

    更新日期:2019-11-28
  • Do modern family planning methods impact women’s quality of life? Jordanian women’s perspective
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-10-15
    Mohammad S. Alyahya; Heba H. Hijazi; Hussam A. Alshraideh; Nihaya A. Al-sheyab; Dana Alomari; Sara Malkawi; Sarah Qassas; Samah Darabseh; Yousef S. Khader

    Although Jordan has made progress in meeting Family Planning (FP) needs in last decades, recently the use of FP methods has declined significantly. Women’s personal experiences, knowledge, and perceptions of how a FP method might impact their quality of life (QoL) can influence FP decisions. However, a lack of comprehensive understanding of the impact of modern FP methods on women’s QoL continues to exist among Jordanian couples. Therefore, this study aimed to investigate the relationship between the use of common modern FP methods and QoL among Jordanian women. Using the WHOQOL-BREF questionnaire along with other questions, non-pregnant women of reproductive age were interviewed at their homes through face-to-face structured interviews. Women who visited the obstetrics and gynecology clinic of King Abdullah University Hospital for contraceptive advice and follow-up consultations were also included. A total of 548 women aged between 18 and 49 participated in the study. Based on the WHOQOL-BREF scale, the overall mean (SD) scores of the four domains were found to be average. Our findings show that women who used Intra Uterine Devices (IUDs) and women whose husbands used condoms had better QoL in the four domains (physical health, psychological health, social relationships, and environment) than those who used Oral Contraceptives (OCs). Women who used implant and injectable hormonal contraceptives had better QoL in terms of the physical health and social relationships domains. In contrast, women who had undergone permanent sterilization had lower QoL scores in all of the four domains. Further analysis revealed that women who had undergone tubal sterilization were less satisfied overall and more likely to experience side effects than women who used OCs. The choice to use contraceptives and decide freely whether and when to have children is regarded as a fundamental reproductive health right and is strongly linked to women’s health and QoL. Women who use OCs and women who have undergone permanent sterilization are likely to have lower QoL than women who use IUDs or implant and injectable hormones and those whose husbands use condoms.

    更新日期:2019-11-28
  • Treatment patterns and economic burden of sickle-cell disease patients prescribed hydroxyurea: a retrospective claims-based study
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-10-16
    Nirmish Shah; Menaka Bhor; Lin Xie; Rashid Halloway; Steve Arcona; Jincy Paulose; Huseyin Yuce

    This study aimed to evaluate sickle-cell disease (SCD) treatment patterns and economic burden among patients prescribed hydroxyurea (HU) in the US, through claims data. SCD patients with pharmacy claims for HU were selected from the Medicaid Analytic Extracts (MAX) from January 1, 2009 - December 31, 2013. The first HU prescription during the identification period was defined as the index date and patients were required to have had continuous medical and pharmacy benefits for ≥6 months baseline and 12 months follow-up periods. Patient demographics, clinical characteristics, treatment patterns, health care utilization, and costs were examined, and variables were analyzed descriptively. A total of 3999 SCD patients prescribed HU were included; the mean age was 19.24 years, most patients were African American (73.3%), and the mean Charlson comorbidity index (CCI) score was 0.6. Asthma (20.3%), acute chest syndrome (15.6%), and infectious and parasitic diseases (20%) were the most prevalent comorbidities. During the 12-month follow-up period, 58.9% (N = 2357) of patients discontinued HU medication. The mean medication possession ratio (MPR) was 0.52, and 22.3% of patients had MPR ≥80%. The average length of stay (LOS) for SCD-related hospitalization was 13.35 days; 64% of patients had ≥1 SCD-related hospitalization. The mean annual total SCD-related costs per patient were $27,779, mostly inpatient costs ($20,128). Overall, the study showed the patients had significant unmet needs manifest as poor medication adherence, high treatment discontinuation rates, and high economic burden.

    更新日期:2019-11-28
  • The impact of patient-reported outcome (PRO) data from clinical trials: a systematic review and critical analysis
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-10-16
    Samantha Cruz Rivera; Derek G. Kyte; Olalekan Lee Aiyegbusi; Anita L. Slade; Christel McMullan; Melanie J. Calvert

    Patient-reported outcomes (PROs) are commonly collected in clinical trials and should provide impactful evidence on the effect of interventions on patient symptoms and quality of life. However, it is unclear how PRO impact is currently realised in practice. In addition, the different types of impact associated with PRO trial results, their barriers and facilitators, and appropriate impact metrics are not well defined. Therefore, our objectives were: i) to determine the range of potential impacts from PRO clinical trial data, ii) identify potential PRO impact metrics and iii) identify barriers/facilitators to maximising PRO impact; and iv) to examine real-world evidence of PRO trial data impact based on Research Excellence Framework (REF) impact case studies. Two independent investigators searched MEDLINE, EMBASE, CINAHL+, HMIC databases from inception until December 2018. Articles were eligible if they discussed research impact in the context of PRO clinical trial data. In addition, the REF 2014 database was systematically searched. REF impact case studies were included if they incorporated PRO data in a clinical trial. Thirty-nine publications of eleven thousand four hundred eighty screened met the inclusion criteria. Nine types of PRO trial impact were identified; the most frequent of which centred around PRO data informing clinical decision-making. The included publications identified several barriers and facilitators around PRO trial design, conduct, analysis and report that can hinder or promote the impact of PRO trial data. Sixty-nine out of two hundred nine screened REF 2014 case studies were included. 12 (17%) REF case studies led to demonstrable impact including changes to international guidelines; national guidelines; influencing cost-effectiveness analysis; and influencing drug approvals. PRO trial data may potentially lead to a range of benefits for patients and society, which can be measured through appropriate impact metrics. However, in practice there is relatively limited evidence demonstrating directly attributable and indirect real world PRO-related research impact. In part, this is due to the wider challenges of measuring the impact of research and PRO-specific issues around design, conduct, analysis and reporting. Adherence to guidelines and multi-stakeholder collaboration is essential to maximise the use of PRO trial data, facilitate impact and minimise research waste. Systematic Review registration PROSPERO CRD42017067799.

    更新日期:2019-11-28
  • Evaluating the psychometric properties of the mental health continuum-short form (MHC-SF) in Dutch adolescents
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-10-22
    Chantie C. Luijten; Sofie Kuppens; Daphne van de Bongardt; Anna P. Nieboer

    Mental health is increasingly viewed as the presence of various aspects of well-being rather than just the absence of mental illness. The Mental Health Continuum-Short Form (MHC-SF) is a 14-item instrument that assesses mental health, focusing on emotional, psychological, and social well-being. The present study examined for the first time the psychometric properties of the Dutch version of the MHC-SF among adolescents, focusing on its factor structure, internal consistency, construct validity, and gender and age factorial invariance. Data were collected from a school-based sample of 1175 adolescents (53.4% girls) aged 11–17 years (M = 13.7; SD = 1.1). Participants completed an online questionnaire in the classroom during regular school hours. Statistical analyses to evaluate the factor structure, internal consistency, construct validity, and gender and age factorial invariance were performed in SPSS and R. Using confirmatory factor analyses, a satisfactory-to-good fit was obtained for the three-factor model (emotional, psychological, and social well-being). The MHC-SF scores showed good internal consistency (Cronbach’s alpha = .91) and results supported convergent and divergent validity. Finally, the MHC-SF showed gender and age factorial invariance. The current psychometric evaluation indicates the MHC-SF is a reliable and valid instrument to assess multiple dimensions of well-being among Dutch adolescents. The instrument can be applied for research purposes and in clinical practice.

    更新日期:2019-11-28
  • Quality of life of patients on treatment for latent tuberculosis infection: a mixed-method study in Stockholm, Sweden
    Health Qual. Life Outcomes (IF 2.318) Pub Date : 2019-10-24
    Jad Shedrawy; Lena Jansson; Isac Röhl; Asli Kulane; Judith Bruchfeld; Knut Lönnroth

    Unlike active tuberculosis, latent tuberculosis infection (LTBI) is asymptomatic and often considered not to affect the health-related quality of life (HRQoL) of patients. However, being diagnosed with and treated for LTBI can be associated with adverse clinical evens such side effects of treatment as well as psychosocial challenges. Therefore, the aims of this study were to qualitatively explore patients’ experiences during diagnosis and treatment of LTBI in Stockholm measure their HRQoL, and contrast and merge the results to better understand how the HRQoL of these patients is affected. LTBI patients who were treated in Stockholm during September 2017 and June 2018and who fulfilled the inclusion criteria were invited to fill a survey that included a HRQoL instrument, EQ-5D-3 L, and a mental health screening instrument, RHS-15. After filling the survey, a subset of these patients was asked to participate in an interview with open-ended questions that focused on their experiences during the diagnosis and treatment. In total 108 participants filled that survey and interviews were conducted with 20 patients. Patients scored relatively high on EQ-5D: the scores of utility and VAS scale are similar to those reported by the general population of Stockholm. Very few patients reported problems on the physical health domains of EQ-5D which was supported by the quantitative data that showed no effect on physical health and usual activity. Thirty-eight percent screened positive for RHS-15 and 27.8% reported problems with anxiety/depression domain of EQ-5D which could be related to many stressing factors mentioned in the interviews such as: fear and distress related to lack of clarity about LTBI diagnosis, perceived risk of infecting others and uncertainties about the future. The quantified HRQoL of LTBI patients in Stockholm is similar to the general population and there is thus no HRQoL decrements that is detectable with EQ-5D. However, the study reinforces the importance of tackling anxiety and fear and ensuring good health information for persons diagnosed with and treated for LTBI.

    更新日期:2019-11-28
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