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  • Health-related quality of life (HRQoL) associated with echinococcosis patients in Tibetan communities in Shiqu County, China: a case–control study
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-16
    Xuzheng Shan, Yun Chen, Kaicheng Liu, Sui Zhang, Jun Yu, Jie Yin, Lang Kaji, Ruihong Song, Yongqin Wang, Yu Wang, Yi Qing, Shiyun Li, Ze Yang, Hongbin Zhang

    Echinococcosis is a chronic neglected zoonotic disease with high endemic in western China. The aim of the study was to evaluate the Health-related Quality of Life (HRQoL) in patients with echinococcosis in Tibetan communities for investigating the physical and mental health challenges faced by the echinococcosis patients and meeting community health needs.

    更新日期:2020-01-17
  • The Simplified Chinese version of SF-6Dv2: translation, cross-cultural adaptation and preliminary psychometric testing
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-16
    Jing Wu, Shitong Xie, Xiaoning He, Gang Chen, John E. Brazier

    To translate, cross-culturally adapt and preliminarily test the Simplified Chinese version of SF-6Dv2 among the Chinese general population.

    更新日期:2020-01-16
  • Assessing health-related quality of life in cancer survivors: factors impacting on EORTC QLU-C10D-derived utility values
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-14
    Thomas van Gelder, Brendan Mulhern, Dounya Schoormans, Olga Husson, Richard De Abreu Lourenço

    To investigate the factors influencing EORTC QLQ-C30-derived EORTC QLU-C10D utility values across five cancer types (non-Hodgkin lymphoma, multiple myeloma, colorectal, thyroid, and prostate cancer) and a general population sample.

    更新日期:2020-01-15
  • Mental and physical health status among chronic hepatitis B patients
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-14
    Yihe G. Daida, Joseph A. Boscarino, Anne C. Moorman, Mei Lu, Loralee B. Rupp, Stuart C. Gordon, Eyasu H. Teshale, Mark A. Schmidt, Philip R. Spradling

    Abstract Purpose Little is known about health-related quality of life (HRQoL) in patients with chronic hepatitis B virus (CHB) infection in the United States. Our goal is to understand factors associated with HRQoL in this population. Methods We conducted a survey to assess HRQoL and behavioral risks among patients with CHB infection from four large U.S. health care systems. Primary outcomes were generated from the SF-8 scale to assess HRQoL, as measured by the mental component scores (MCS) and physical component scores (PCS). The survey also measured socio-demographic information, hepatitis-related behavioral risk factors, treatment exposure/history, stress, and social support. We supplemented survey data with electronic health records data on patient income, insurance, disease severity, and comorbidities. Multivariate analysis was used to estimate and compare adjusted least square means of MCS and PCS, and examine which risk factors were associated with lower MCS and PCS. Results Nine hundred sixty-nine patients (44.6%) responded to the survey. Current life stressors and unemployment were associated with both lower MCS and PCS results in multivariate analyses. Lower MCS was also associated with White race and low social support, while lower PCS was also associated with Medicaid insurance. Conclusions Stressful life events and unemployment were related to mental and physical health status of CHB patients. Those who have social support have better mental health; White and Medicaid patients are more likely to have poorer mental and physical health, respectively. Management of CHB patients should include stress management, social support, and financial or employment assistance.

    更新日期:2020-01-14
  • A bi-directional association between weight change and health-related quality of life: evidence from the 11-year follow-up of 9916 community-dwelling adults
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-14
    Berhe W. Sahle, Shameran Slewa-Younan, Yohannes Adama Melaku, Li Ling, Andre M. N. Renzaho

    To examine the prospective associations between body mass index (BMI) and health-related quality of life (HRQoL).

    更新日期:2020-01-14
  • The relationship between frequency and severity of vaso-occlusive crises and health-related quality of life and work productivity in adults with sickle cell disease
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-13
    Avery A. Rizio, Menaka Bhor, Xiaochen Lin, Kristen L. McCausland, Michelle K. White, Jincy Paulose, Savita Nandal, Rashid I. Halloway, Lanetta Bronté-Hall

    Patients with sickle cell disease (SCD) may experience sickle cell-related pain crises, also referred to as vaso-occlusive crises (VOCs), which are a substantial cause of morbidity and mortality. The study explored how VOC frequency and severity impacts health-related quality of life (HRQoL) and work productivity.

    更新日期:2020-01-13
  • Patient acceptance and outcome of mental health screening in Swedish adults with cystic fibrosis
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-09
    Stina Järvholm, Petrea Ericson, Marita Gilljam

    Abstract Purpose Anxiety and depression are common among adults with cystic fibrosis (CF), and the International Committee on Mental Health in CF (ICMH) recommends annual screening for mental health problems. We implemented screening according to the recently published guidelines and assessed the results from the first year, as well as the patients’ attitude to annual screening Methods Adult patients attending Gothenburg CF-center from Feb 2015 to Dec 2016 completed the GAD-7 (anxiety) and PHQ-9 (depression) forms at the time of their annual review. In addition, questions regarding the screening process and instruments used were asked. Results All invited patients (n = 100, 52% males, 2% lung transplanted), with a median age of 28 years (range 18–65), agreed to participate. In general (83%), the patients were positive to screening on an annual basis. No significant differences in total GAD-7 and PHQ-9 scores were found when comparing men and women. Patients younger than 30 years of age reported more symptoms of anxiety compared to older patients (p = 0.02). There were 21 (21%) patients with scores > 10 for GAD-7 and/or PHQ-9 indicating at least moderate anxiety or depression. Scores > 10 were reported by 15 patients on GAD-7, 15 patients on PHQ-9, and 9 patients reported scores above 10 on both measures. Conclusion The patients considered annual check-ups for mental health issues important. Although the screening results are reassuring, the group is heterogenic and younger individuals should be given extra attention. Follow-up over longer time will provide more robust data.

    更新日期:2020-01-11
  • Optimizing quality of life among Chinese physicians: the positive effects of resilience and recovery experience
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-08
    Jialin Ding, Yajing Jia, Jinfeng Zhao, Fengzhi Yang, Ruqing Ma, Xiaoshi Yang

    Abstract Background The physicians in Chinese public tertiary hospitals are exposed to considerable work-related stress because of the imperfections in hierarchical diagnosis and treatment systems, such as the imperfections in referral system and low quality in diagnosis and treatment outcomes in community hospitals, for which most patients visit tertiary hospitals firstly in order to access a higher quality health care service. As a consequence, the health-related quality of life (HRQOL) for Chinese physicians is compromised. However, there is a paucity of research exploring physicians’ physical and mental health and positive psychological resource factors such as resilience and recovery experience (RE) which can help maintain well-being. Thus, this study aims to assess HRQOL of Chinese physicians and explore the relationship between HRQOL, resilience, and RE. Methods A cross-sectional study with proportional sampling was conducted in Shenyang, China from February to October 2018. A total of 642 physicians in five public tertiary hospitals were enrolled in this study. They completed the smartphone questionnaire including the 36-item Short-Form Health Survey (SF-36), the EGO Resilience Scale, and Recovery Experience Questionnaire (REQ). Linear regression analysis was conducted to explore the factors associated with HRQOL. Structural equation modeling (SEM) was used to evaluate the mediating effect of RE on the relationship between resilience and HRQOL. Results Regression analysis indicated that resilience and RE were the most important contributors to both physical and mental component summary scores. SEM showed that RE partially mediated the relationship between resilience and HRQOL in these physicians. Conclusion Chinese physicians exhibited good physical health, but poor mental health. Resilience could help maintain and improve HRQOL through the partial mediating effect of RE. Resilience and RE enhancement should be provided to effectively manage work-related stress and improve both physical and mental health for the long-term well-being of physicians.

    更新日期:2020-01-08
  • Hereditary hemorrhagic telangiectasia and health-related quality of life: a qualitative investigation
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-06
    Guillaume Martinent, Manon Carrot, Anne Chirac, Sophie Dupuis-Girod, Anne-Emmanuelle Fargeton, Stéphanie Blois Da Conceição, Sylvie Fourdrinoy

    The purpose of the study was to arrive at an accurate description of health-related quality of life of hereditary hemorrhagic telangiectasia patients.

    更新日期:2020-01-06
  • Indicators of potential health-related social needs and the association with perceived health and well-being outcomes among community-dwelling medicare beneficiaries
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-06
    Jessa K. Engelberg Anderson, Purva Jain, Amy J. Wade, Andrea M. Morris, Jill C. Slaboda, Gregory J. Norman

    Abstract Purpose Health-related social needs (HRSNs) can make older adults’ more vulnerable and impact their health, well-being, and ability to age-in-place. The current study assessed the prevalence of potential HRSNs (pHRSNs) across several domains (e.g., transportation, social isolation) and explored the associations with health and well-being outcomes in a sample of Medicare beneficiaries. Methods Cross-sectional analyses were conducted with a representative sample of community-dwelling Medicare beneficiaries (N = 5758) from the 2012 National Health and Aging Trends Study. Binary indicators of pHRSNs were created for five domains: medical and utility financial needs (MUFN), housing, nutrition, social isolation, and transportation. Outcomes were depression/anxiety, self-rated health, meaning/satisfaction, perceived control/adaptability. Variables were weighted, and multivariate regression models assessed associations between pHRSN variables and outcomes, controlling for sociodemographics and health conditions. Results Of the estimated 32 million community-dwelling beneficiaries, approximately 13.3 million were positive for ≥ 1 pHRSN and 11.4 million for ≥ 2 pHRSNs. The prevalence by domain was 7% for housing, 8% for transportation, 12% for UMFN and nutrition, and 33% for social isolation. Each domain, except for housing, was significantly (p < .05) associated with at least two of the four outcomes, where being positive for a pHRSN was associated with greater depression/anxiety and poorer self-rated general health. Conclusions Over 40% of Medicare beneficiaries had ≥ 1 pHRSN indicators, which means they are more vulnerable and that may limit their ability to age-in-place. Given the growing aging population, better measures and methods are needed to identify, monitor, and address HRSNs. For example, leveraging existing community-based services through coordinated care may be an effective strategy to address older adults’ HRSNs.

    更新日期:2020-01-06
  • Development of a conceptual framework to underpin a health-related quality of life outcome measure in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): prioritisation through card ranking
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-06
    Roxanne M. Parslow, Nina Anderson, Danielle Byrne, Kirstie L. Haywood, Alison Shaw, Esther Crawley

    Chronic fatigue syndrome (CFS)/myalgic encephalopathy (ME) is relatively common in children and is disabling at an important time in their development. This study aimed to develop a conceptual framework of paediatric CFS/ME using the patient-perspective to ensure that the content of a new outcome measure includes the outcomes most important to young people.

    更新日期:2020-01-06
  • How peoples’ ratings of dental implant treatment change over time?
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-06
    Carolina Machuca, Mario V. Vettore, Peter G. Robinson

    Dental implant treatment (DIT) improves peoples’ oral health-related quality of life (OHQoL). Assessment of longitudinal changes in OHRQoL may be undermined by response shift (RS). RS is the process by which quality of life changes, independent of health status as a result recalibration, reprioritization or reconceptualization. Thus, this study aimed to describe RS in the OHRQoL and perceived oral health of individuals receiving DIT and to compare the then-test, a self-anchored scale and the classification and regression trees (CRT) approaches for assessing RS.

    更新日期:2020-01-06
  • Development and validation of the University of Washington caregiver stress and benefit scales for caregivers of children with or without serious health conditions
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-04
    Dagmar Amtmann, Kendra S. Liljenquist, Alyssa Bamer, Arnold R. Gammaitoni, Carey R. Aron, Bradley S. Galer, Mark P. Jensen

    To develop item response theory (IRT)-based item banks and short forms to measure stress and benefit related to caregiving for children, including children with epilepsy or other serious health conditions.

    更新日期:2020-01-04
  • Investigating child self-report capacity: a systematic review and utility analysis
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-03
    Katherine B. Bevans, Isaac L. Ahuvia, Taye M. Hallock, Rochelle Mendonca, Stephanie Roth, Christopher B. Forrest, Courtney Blackwell, Jessica Kramer, Lauren Wakschlag

    Abstract Purpose To identify and evaluate methods for assessing pediatric patient-reported outcome (PRO) data quality at the individual level. Methods We conducted a systematic literature review to identify methods for detecting invalid responses to PRO measures. Eight data quality indicators were applied to child-report data collected from 1780 children ages 8–11 years. We grouped children with similar data quality patterns and tested for between-group differences in factors hypothesized to influence self-report capacity. Results We identified 126 articles that described 494 instances in which special measures or statistical techniques were applied to evaluate data quality at the individual level. We identified 22 data quality indicator subtypes: 9 direct methods (require administration of special items) and 13 archival techniques (statistical procedures applied to PRO data post hoc). Application of archival techniques to child-report PRO data revealed 3 distinct patterns (or classes) of the data quality indicators. Compared to class 1 (56%), classes 2 (36%) and 3 (8%) had greater variation in their PRO item responses. Three archival indicators were especially useful for differentiating plausible item response variation (class 2) from statistically unlikely response patterns (class 3). Neurodevelopmental conditions, which are associated with a range of cognitive processing challenges, were more common among children in class 3. Conclusion A multi-indicator approach is needed to identify invalid PRO responses. Once identified, assessment environments and measurement tools should be adapted to best support these individuals’ self-report capacity. Individual-level data quality indicators can be used to gauge the effectiveness of these accommodations.

    更新日期:2020-01-04
  • Influence of executive functions on the self-reported health-related quality of life of children with ADHD
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-03
    Mona Céline Schwörer, Tilman Reinelt, Franz Petermann, Ulrike Petermann

    Abstract Purpose ADHD is regarded as a neurodevelopmental disorder associated with deficits in executive functions (EF). The presence of these deficits is associated with increased symptom severity. However, so far there is little knowledge, whether deficits in EFs relate to a reduced health-related quality of life (HRQoL) in children with ADHD. Methods Hence, n = 100 children with a confirmed ADHD diagnosis were compared with a non-cases group (n = 100) with regard to their HRQoL (6–12 years old). The clinical group was divided into ADHD-specific drug treatment intake (drug treatment: n = 42; no drug treatment: n = 58) or deficits in EF (n = 29; no deficits in EF: n = 71). Results Children with ADHD (without medication) reported a significantly worse HRQoL than healthy children (d = .72), when controlled for age and sex. Even if they were treated with drug treatment, they reported a lower HRQoL than the non-case group in the area Family (d = .53). Drug treatment of ADHD leads to a significant difference in HRQoL in school area (d = .39). Children with ADHD and EF problems reported impairments in the social context of HRQoL compared to healthy children (d = .51 to .70). In addition, a significant negative association between set-shifting and HRQoL in children with ADHD (without drug treatment) was demonstrated (r = − .27 to r = − .35). Conclusions By assessing the HRQoL, an impairment in the functioning of children with ADHD can be detected, which is essential for the diagnosis. Furthermore, executive problems have an influence on the social sphere, which should be clarified and improved in therapy with the involvement of parents.

    更新日期:2020-01-04
  • An analysis of the relationship of character strengths and quality of life in persons with multiple sclerosis
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-03
    Susan Miller Smedema

    To examine the relationship of character strengths and quality of life (QOL) in persons with multiple sclerosis (MS). Specifically, this study examined the relationship of the 24 character strengths in Peterson and Seligman’s model with QOL and three negative effects of MS (disability, fatigue, and depression). It also investigated whether the three negative effects of MS mediate the relationship of each of the character strengths and QOL.

    更新日期:2020-01-04
  • Expressive writing intervention for posttraumatic stress disorder among Chinese American breast cancer survivors: the moderating role of social constraints
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-03
    Qiao Chu, Ivan H. C. Wu, Qian Lu

    Posttraumatic stress disorder (PTSD) is a significant condition among breast cancer survivors (BCSs). However, few intervention studies for cancer-related PTSD were conducted among Asian cancer survivors. We evaluated a culturally sensitive expressive writing intervention, which combined cognitive reappraisal and emotional disclosure, in reducing PTSD among Chinese American BCSs. We also tested social constraints (defined as social conditions when individuals feel misunderstood or alienated when they desire to disclose their thoughts and feelings) as a moderator.

    更新日期:2020-01-04
  • Sociodemographic, personal, and disease-related determinants of referral to patient-reported outcome-based follow-up of remote outpatients: a prospective cohort study
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-03
    Liv Marit Valen Schougaard, Annette de Thurah, Jakob Christensen, Kirsten Lomborg, Helle Terkildsen Maindal, Caroline Trillingsgaard Mejdahl, Jesper Medom Vestergaard, Trine Nøhr Winding, Karin Biering, Niels Henrik Hjollund

    Abstract Purpose We examined the association between sociodemographic, personal, and disease-related determinants and referral to a new model of health care that uses patient-reported outcomes (PRO) measures for remote outpatient follow-up (PRO-based follow-up). Methods We conducted a prospective cohort study among outpatients with epilepsy at the Department of Neurology at Aarhus University Hospital, Denmark. Included were all persons aged ≥ 15 years visiting the department for the first time during the period from May 2016 to May 2018. Patients received a questionnaire containing questions about health literacy, self-efficacy, patient activation, well-being, and general health. We also collected data regarding sociodemographic status, labour market affiliation, and co-morbidity from nationwide registers. Associations were analysed as time-to-event using the pseudo-value approach. Missing data were handled using multiple imputations. Results A total of 802 eligible patients were included in the register-based analyses and 411 patients (51%) responded to the questionnaire. The results based on data from registers indicated that patients were less likely to be referred to PRO-based follow-up if they lived alone, had low education or household income, received temporary or permanent social benefits, or if they had a psychiatric diagnosis. The results based on data from the questionnaire indicated that patients were less likely to be referred to PRO-based follow-up if they reported low levels of health literacy, self-efficacy, patient activation, well-being, or general health. Conclusion Both self-reported and register-based analyses indicated that socioeconomically advantaged patients were referred more often to PRO-based follow-up than socioeconomically disadvantaged patients.

    更新日期:2020-01-04
  • Lower urinary tract symptoms and health-related quality of life in Hong Kong primary care: a cross-sectional study
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-03
    Edmond Pui Hang Choi, Eric Yuk Fai Wan, Weng Yee Chin, Cindy Lo Kuen Lam

    Abstract Purpose To estimate the prevalence of lower urinary tract symptoms (LUTS) in primary care using the International Continence Society symptom definition; to evaluate the association between LUTS and health-related quality of life (HRQOL); and to evaluate the treatment gaps. Methods Patients aged 40 and above were randomly recruited in a Hong Kong public primary care. Patients were asked (i) how often they experienced 18 individual LUTS during the past 4 weeks and (ii) whether they had sought treatments for their LUTS. The 12-Item Short Form Health Survey version 2 (SF-12 v2) and the modified Incontinence Impact Questionnaire-Short Form (IIQ-7) were used to measure HRQOL. Results 500 patients completed the survey. 75.8% of the patients had at least one LUTS “at least sometimes”, with patients with a combination of storage, voiding, and post-micturition symptoms being the most prevalent (22.2%), followed by a combination of voiding and storage symptoms (14%). Only 14% of LUTS patients had sought treatments for their LUTS. LUTS was associated with a negative effect in all domains of the SF-12 v2 and IIQ-7 and patients with a combination of storage, voiding, and post-micturition symptoms had the worst HRQOL. Finally, having a combination of storage, voiding, and post-micturition symptoms and poorer HRQOL were factors associated with having sought treatments for LUTS. Conclusion A high prevalence of LUTS but low treatment-seeking rates implied possible unmet needs of LUTS patients in primary care, suggesting the potential for more active interventions to alleviate the negative impact of LUTS on patients’ HRQOL.

    更新日期:2020-01-04
  • Back pain occurrence and treatment-seeking behavior among nurses: the role of work-related emotional burden
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-03
    Maha E. Ibrahim, Boris Cheval, Stéphane Cullati, Denis Mongin, Kim Lauper, Jesper Pihl-Thingvad, Pierre Chopard, Stéphane Genevay, Delphine S. Courvoisier

    Abstract Purpose To assess the association of back pain and treatment-seeking behavior for such pain with work-related emotional burden (regret about care), regret coping strategies, and physical burden among newly practicing nurses. Methods We used data from the Impact of Care-related Regret Upon Sleep (ICARUS) cohort collected between 05.2017 and 07.2018 using web-based surveys (weekly for measures of emotional burden, physical burden and coping strategies, and monthly for back pain and seeking care). We investigated immediate associations and temporal influences between burdens and back pain with linear mixed models and cross-lagged Bayesian models, respectively. Coefficients were standardized to allow comparison between burdens. Logistic regression was used to examine the association of burdens with seeking care. Results Among 105 nurses with an average follow-up of 3 months, 80 reported at least one episode of back pain. Neither physical nor emotional burdens had an immediate association with back pain. However, number of days with back pain in a given month was associated with an increase in both burdens during the previous month, with similar degrees of association (emotional: b = 0.24, physical: b = 0.21). Decision to seek treatment was associated with an increase in back pain frequency (OR 1.12, p = 0.04) and intensity (OR 1.80, p = 0.002) and a decrease in emotional burden (OR 0.95, p = 0.03). Coping strategies were associated neither with the occurrence of back pain nor with care-seeking. Conclusion While both emotional and physical burdens were associated with increased frequency of back pain the following month, emotional burden additionally showed a negative association with the decision to seek care.

    更新日期:2020-01-04
  • Effects of an exercise program linked to primary care on depression in elderly: fitness as mediator of the improvement
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-02
    Miguel A. Perez-Sousa, Pedro R. Olivares, Jose L. Gonzalez-Guerrero, Narcis Gusi

    Abstract Purpose The present study aimed to analyse the effects of 12 months of participation in a public physical activity program linked to primary care on depression level and fitness, and to determine which fitness components were responsible for the improvement in depression using mediation analysis. Methods Participants of this program were 2768 middle-aged and older adults from 67 municipalities throughout the Spanish region of Extremadura. In the analysis only participants with depression and without any missing values for fitness variables were included. This sample was 303 for exercise group and 74 for control group. Socio-demographic data, Geriatric Depression Scale and some fitness tests were applied at baseline and 1 year later. Exercise group performed the program 3 days/week for 50–60 min per session involving brisk walking with intermittent flexibility, strength and balance activities/exercises. Socializing within the group was encouraged in all sessions. Data analysis included analysis of covariance, chi-squared and effect size statistics. Additionally, a parallel model of mediation analysis was performed to determine the indirect effect of the participation in the exercise program on depression through improvements in fitness. Results A considerable reduction from mild, moderate or severe depression to non-depression were obtained for exercise group (68%) P-value < .05. The parallel mediation analysis showed that flexibility (sit-and-reach [β − 0.04 (− 0.07 to − 0.01)], back scratch [β − 0.06 (− 0.12 to − 0.02)]) and cardiorespiratory fitness (6-min walk [β − 0.09 (− 0.15 to − 0.04)]) were mediators of the reduction in depression. Conclusion This exercise program was effective in improving depression in older adults. Integrating aerobic and flexibility exercises in a group-based program of physical activity programs could improve the severity of depression in this population.

    更新日期:2020-01-04
  • Exploration of symptom experience in kidney transplant recipients based on symptoms experience model
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-02
    Han Wang, Chunyan Du, Hongxia Liu, Shuping Zhang, Sisi Wu, Yingxin Fu, Jie Zhao

    Abstract Purpose Kidney transplant recipients suffer from a variety of symptoms, and symptom management is crucial in improving their quality of life (QOL). Accordingly, this study aims to identify the symptoms experienced by kidney transplant recipients and examine the relationship amongst antecedents, symptom experience and QOL of recipients in China. Methods A total of 300 kidney transplant recipients were investigated in one of the most first-rate hospitals in China by asking them to fill out a self-designed general questionnaire, the Symptom Experience Scale, the Sense of Coherence Scale (Chinese version), the Revised Life Orientation Test (Chinese version) and the 36-item Short Form Health Survey (Chinese version). Results Kidney transplant recipients experienced multiple symptoms that were frequent, severe and bothersome. The final model showed significant consistency with the data. In the QOL model, post-transplant time, complications, immunosuppressive agents and sense of coherence explained 30.7% of the variance of symptom experience. Moreover, habitual residence, economic burden, post-transplant time, kidney function, optimism and symptom experience accounted for 70.6% of the variance on QOL. Conclusions We can explain the relationship between antecedents, symptom experience and QOL amongst Chinese kidney transplant recipients by using Symptoms Experience Model. Clinicians and caregivers can manage the recipient’s symptoms during follow-up from psychological, physical and medication management perspectives. Improving sense of coherence, maintaining optimism and managing symptoms are essential for enhancing QOL.

    更新日期:2020-01-04
  • Qualitative analyses of nursing home residents’ quality of life from multiple stakeholders’ perspectives
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-02
    Jennifer L. Johs-Artisensi, Kevin E. Hansen, Douglas M. Olson

    Quality of life has been defined in various ways by nursing home stakeholders over the years. As such, analyzing the levels of agreement or disagreement among these stakeholders to ascertain if staff and leadership align with resident-identified factors for “good” quality of life has become important to include in the literature. This study sought to identify contributory factors to resident quality of life, as well as analyze areas of commonality in qualitative responses.

    更新日期:2020-01-04
  • Measurement of health-related quality of life in pediatric organ transplantation recipients: a systematic review of the PedsQL transplant module
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-02
    Michael O. Killian, Kelli N. Triplett, Saba S. Masood, Jason Boehler, Gillian S. Mayersohn

    To collect and assess the extant empirical literature assessing disease-specific health-related quality of life (HRQOL) in pediatric transplant recipients using the PedsQL 3.0 Transplant Module (PedsQL-TM) assessment.

    更新日期:2020-01-04
  • Longitudinal associations between coping strategies, locus of control and health-related quality of life in patients with breast cancer or melanoma
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-01
    Anna Toscano, Myriam Blanchin, Marianne Bourdon, Angélique Bonnaud Antignac, Véronique Sébille

    A diagnosis of breast cancer or melanoma is a traumatic life event that patients have to face. However, their locus-of-control (LOC) beliefs and coping strategies as well as the associations with health-related quality of life (HRQoL) changes over time are still not well known and rarely compared by cancer site.

    更新日期:2020-01-04
  • Translation, cross-cultural and construct validity of the Dutch–Flemish PROMIS® upper extremity item bank v2.0
    Qual. Life Res. (IF 2.488) Pub Date : 2020-01-01
    Erik-Jan A. Haan, Caroline B. Terwee, Marieke F. Van Wier, Nienke W. Willigenburg, Derek F. P. Van Deurzen, Martijn F. Pisters, Aaron J. Kaat, Leo D. Roorda

    To develop a Dutch–Flemish translation of the PROMIS® upper extremity (PROMIS-UE) item bank v2.0, and to investigate its cross-cultural and construct validity as well as its floor and ceiling effects in patients with musculoskeletal UE disorders.

    更新日期:2020-01-04
  • Capability instruments in economic evaluations of health-related interventions: a comparative review of the literature
    Qual. Life Res. (IF 2.488) Pub Date : 2019-12-24
    Timea Mariann Helter, Joanna Coast, Agata Łaszewska, Tanja Stamm, Judit Simon

    Given increasing interest in using the capability approach for health economic evaluations and a growing literature, this paper aims to synthesise current information about the characteristics of capability instruments and their application in health economic evaluations.

    更新日期:2020-01-04
  • What to expect after open heart valve surgery? Changes in health-related quality of life
    Qual. Life Res. (IF 2.488) Pub Date : 2019-12-24
    Britt Borregaard, Susanne S. Pedersen, Selina Kikkenborg Berg, Jordi Dahl, Ola Ekholm, Kirstine Sibilitz, Ann Dorthe Olsen Zwisler, Sandra B. Lauck, Derek Kyte, Melanie Calvert, Lars Peter Schødt Riber, Jacob Eifer Møller

    Abstract Purpose To (i) describe changes in health-related quality of life (HRQoL) pre-operatively, at discharge, and 4 weeks after discharge following open heart surgery, (ii) compare the performance of the EuroQol Questionnaire (EQ-5D 5L) and the Kansas City Cardiomyopathy Questionnaire (KCCQ) against an anchor-based approach, and to (iii) investigate the association between HRQoL and 180-day readmission. Methods A prospective, consecutive cohort (single-center study) of 291 patients completed the EQ-5D 5L and KCCQ pre-operatively, at discharge and 4 weeks post-discharge. Changes in HRQoL over time were evaluated, and the performance of the instruments was investigated. The association between HRQoL and readmission were investigated with Cox Proportional Hazard models. Results Scores of the EQ-5D Index and VAS decreased significantly from the pre-operative assessment to discharge and improved from discharge to 4 weeks after. The KCCQ scores significantly improved from baseline to 4 weeks after. Minimal clinically important improvements from before surgery to 4 weeks after were seen among 24% (EQ-5D Index), 45% (EQ-5D VAS), and 57% (KCCQ). More than one-third experienced worse HRQoL 1 month after discharge. Area under the curve (AUC) (performance of the instruments) demonstrated the following: EQ-5D Index AUC 0.622 (95% CI 0.540–0.704), VAS AUC 0.674 (95% CI 0.598–0.750), and KCCQ AUC 0.722 (95% CI 0.65–0.792). None of the HRQoL measurements were associated with 180-day readmission. Conclusions This study revealed that HRQoL measured with the EQ-5D is significantly worse at discharge compared to before surgery, but scores increases within the first month measured with the EQ-5D and the KCCQ. The EQ-5D and KCCQ have a moderate correlation with an anchor-based approach but were not associated with readmission.

    更新日期:2020-01-04
  • Assessing child quality of life impairments following pediatric burn injuries: Rasch analysis of the children’s dermatology life quality index
    Qual. Life Res. (IF 2.488) Pub Date : 2019-12-18
    Carisa Parrish, R. Trent Haines, Dylan Stewart, Margo Szabo, Jill Caradec, Susan Ziegfeld, Elizabeth Reynolds, Rick Ostrander

    There is a need for a brief, validated measure of quality of life (QOL) for children to monitor their adjustment to burn injuries. We aimed to apply a Rasch analysis to an existing measure of QOL from the dermatology literature to a clinical sample of pediatric burn patients.

    更新日期:2020-01-04
  • Adaptation and validation of the self-report version of the scale for measuring quality of life in people with acquired brain injury (CAVIDACE)
    Qual. Life Res. (IF 2.488) Pub Date : 2019-12-18
    Alba Aza, Miguel Ángel Verdugo, María Begoña Orgaz, María Fernández, Antonio Manuel Amor

    The disability and resulting dependence after acquired brain injury (ABI) significantly reduces quality of life (QoL), making the correct assessment of QoL important. However, the instruments currently used to assess QoL are either reductionist, including only health-related aspects, or, like the CAVIDACE scale, are based on multidimensional models but ignore the individual’s perspective. Therefore, the purpose of this study is to validate the self-report version of the CAVIDACE scale.

    更新日期:2020-01-04
  • Psychometric properties and responsiveness of Neuro-QoL Cognitive Function in persons with Huntington disease (HD)
    Qual. Life Res. (IF 2.488) Pub Date : 2019-12-18
    Noelle E. Carlozzi, Nicholas R. Boileau, Jane S. Paulsen, Nancy R. Downing, Rebecca Ready, Joel S. Perlmutter, David Cella, Kelvin L. Chou, Michael K. McCormack, Stacey Barton, Jin-Shei Lai

    Abstract Purpose Individuals with Huntington disease (HD) experience progressive cognitive decline that may appear years before motor manifestations of the disease. These declines have a profound effect on health-related quality of life (HRQOL) over the disease course, and thus it is important that self-report measures of cognitive function are validated for use in longitudinal studies. Methods 359 individuals with premanifest or manifest HD completed baseline and at least one follow-up (12- and 24-month) assessment. Neuro-QoL™ Cognitive Function was administered at each time-point. Participants completed a self-reported global rating of cognitive change, as well as performance-based cognitive changes (using the Symbol Digit Modalities Test). Standardized response means (SRMs) and general linear models evaluated whether Neuro-QoL™ Cognitive Function was responsive to change over time with respect to self-reported and performance-based anchors. Test–retest reliability and known-group validity were also examined. Results Responsiveness was supported by effect sizes that were small in magnitude, but in the expected direction relative to self-reported and performance-based change. General linear models generally supported 12- and 24-month responsiveness relative to self-reported cognitive change and 12-month responsiveness relative to performance-based change. Test–retest reliability was excellent, and the measure exhibited known-group validity. Conclusion Longitudinal analyses generally indicate that the Neuro-QoL™ Cognitive Function measure is sensitive to change over time in individuals with HD. Neuro-QoL Cognitive Function changes reflect self-reported cognitive change at 12 and 24 months and performance-based change at 12 months. This measure may be useful in clinical trials or longitudinal observation studies.

    更新日期:2020-01-04
  • How are patient-reported outcomes and symptoms being measured in adults with relapsed/refractory multiple myeloma? A systematic review
    Qual. Life Res. (IF 2.488) Pub Date : 2019-12-17
    Matthew R. LeBlanc, Rachel Hirschey, Ashley Leak Bryant, Thomas W. LeBlanc, Sophia K. Smith

    Patients with relapsed and/or refractory multiple myeloma (RRMM) are living longer due in part to changing treatment patterns. It is important to understand how changing treatment patterns affect patients’ lives beyond extending survival. Research suggests that direct patient report is the best way to capture information on how patients feel and function in response to their disease and its treatment. Therefore, the purpose of this review is to summarize evidence of patients’ experience collected through patient-reported outcomes (PRO) in RRMM patients, and to explore PRO reporting quality.

    更新日期:2020-01-04
  • Subjective wellbeing in the Indian general population: a validation study of the Personal Wellbeing Index.
    Qual. Life Res. (IF 2.488) Pub Date : null
    Erica McIntyre,Anthony Saliba,Kirsty McKenzie

    PURPOSE The Personal Wellbeing Index (PWI) is a commonly used measure of life satisfaction that reflects a person's level of subjective wellbeing (SWB). The present study aimed to establish the validity and reliability of the PWI in a large sample of Indian adults and describe their SWB. METHODS 2004 Indian adults completed a cross-sectional online survey, which was presented in English and included the PWI and demographic questions. The sample was split to assess the psychometric properties of the 7-item (n = 981) and 8-item (n = 937) versions of the PWI. RESULTS Both the 7- and 8-item versions of the PWI demonstrated adequate internal consistency (α = .89 and .88, respectively). The global means for both versions of the PWI (7-item = 74.43, 8-item = 73.82) were within the normative range for Western countries. Achieving in life had the lowest domain scores for both the 7-item (M = 70.51) and 8-item (M = 68.37) versions; the spirituality or religion domain had the highest domain score in the 8-item version (M = 78.84). CONCLUSION The findings suggest that both the 7- and 8-item versions of the PWI are valid and reliable measures of life satisfaction for use in India. The global mean scores for both versions of the PWI were within the normative range for Western countries. In this study, Indians reported high levels of satisfaction with their spirituality or religion, suggesting this domain may be an important contributor of SWB; however, more research is needed to determine this.

    更新日期:2019-11-01
  • Hope predicted quality of life in dyads of community-dwelling patients receiving hemodialysis and their family caregivers.
    Qual. Life Res. (IF 2.488) Pub Date : null
    Sami Al-Rawashdeh,Ali Alshraifeen,Mohammad Rababa,Ala Ashour

    PURPOSE End-stage renal disease (ESRD) patients on hemodialysis (HD) and their family caregivers (FCGs) reported poor quality of life (QoL). Hope has shown association with QoL at the individual level. However, the association between hope and QoL in dyads has never been examined in particular in dyads of patients and FCGs. The purpose of this study was to examine the associations between hope and QoL in dyads of ESRD patients on HD and their family caregivers (FCGs). METHODS This was a cross-sectional study in which data were collected from 123 community-dwelling patient-FCG dyads. Hope was measured using the Herth Hope Index and QoL was measured using the World Health Organization Quality of Life BREF. The Actor-Partner Interdependence Model multilevel modeling dyadic analysis approach was used to analyze the data. RESULTS Each individual's hope scores predicted their own better QoL scores. Patients' hope scores predicted better Environmental domain QoL in FCGs. CONCLUSION All domains of QoL of patients and their FCGs are related to their own level of hope. Better FCGs' environment domain of QoL was linked to high patients' levels of hope. Improving QoL may be achieved by targeting and improving hope in both members of the dyad.

    更新日期:2019-11-01
  • Depressive symptoms, physical symptoms, and health-related quality of life among older adults with HIV.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-08-26
    Blair Olson,Wilson Vincent,Jaimie P Meyer,Trace Kershaw,Kathleen J Sikkema,Timothy G Heckman,Nathan B Hansen

    PURPOSE In the United States, approximately 45% of persons living with HIV (PLHIV) are ≥ 50 years of age. Many older PLHIV have multi-morbidities that complicate HIV infection and/or interfere with, or are exacerbated by, antiretroviral treatment. Physical health symptoms and psychiatric disorders, particularly depression, can worsen life quality in older PLHIV. METHODS This study assessed associations among physical symptoms, indicators of HIV-related health status (i.e., time since diagnosis; ever diagnosed with AIDS; having attained viral suppression), depressive symptoms, and health-related quality of life (HRQoL) in older PLHIV. Regression analyses examined data from 296 PLHIV ≥ 50 years of age living in Cincinnati, OH, Columbus, OH, and New York City. RESULTS Depressive symptoms and physical symptoms, particularly those related to appearance and sexual functioning, most strongly predicted HRQoL. Indicators of HIV health status did not significantly predict HRQoL. Depressive symptoms were a particularly robust predictor of HRQoL, even when accounting for physical health symptoms. CONCLUSION Findings suggest that symptom management is critical to HRQoL in older PLHIV, and symptoms related to physical appearance and sexual functioning should not be overlooked in this growing population.

    更新日期:2019-11-01
  • Association between polypharmacy and health-related quality of life among US adults with cardiometabolic risk factors.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-12-02
    Ami Vyas,Frisca Kang,Marilyn Barbour

    PURPOSE There are known associations between cardiometabolic risk factors and polypharmacy; however, there is no evidence about how polypharmacy among adults with cardiometabolic risk factors impacts their health-related quality of life (HRQoL). The main objective of this study was to assess the association between polypharmacy and HRQoL among adults with cardiometabolic risk factors living in the USA. METHODS Individuals age ≥ 18 years with at least one of the three cardiometabolic risk factors (diabetes, hyperlipidemia, and hypertension) were identified from the Medical Expenditure Panel Survey 2015 data. We defined polypharmacy as use of at least five classes of prescription medications. Physical component summary (PCS) and mental component summary (MCS) were obtained from the 12-item Short-Form Health Survey version 2 to measure HRQoL. We conducted adjusted ordinary least-square regressions to determine the association between polypharmacy and HRQoL. RESULTS We identified 7621 (weighted N = 80 million) adults with at least one cardiometabolic risk factors of whom 46.9% reported polypharmacy. Polypharmacy was noted in 29.7% of those with hypertension, whereas 82.4% of those with all the three cardiometabolic risk factors had polypharmacy. The unadjusted mean PCS and MCS scores for those with polypharmacy were lower than those without polypharmacy. In the multivariable regressions, we found that adults with polypharmacy had significantly lower PCS scores (β = - 4.27, p < 0.0001) compared to those without polypharmacy, while the MCS scores between those with and without polypharmacy were no longer significantly different. CONCLUSION Surveillance of use of concurrent prescription medications is warranted so as to improve physical functioning in this vulnerable group.

    更新日期:2019-11-01
  • Comparison of longitudinal quality of life outcomes in preemptive and dialyzed patients on waiting list for kidney transplantation.
    Qual. Life Res. (IF 2.488) Pub Date : null
    Line Auneau-Enjalbert,Jean-Benoit Hardouin,Myriam Blanchin,Magali Giral,Emmanuel Morelon,Elisabeth Cassuto,Aurélie Meurette,Véronique Sébille

    PURPOSE The waiting list period for kidney transplantation can be lengthy and associated with a deteriorated health-related quality of life (HRQoL). It might also be experienced differently depending on the experience of renal replacement therapy (preemptive or dialyzed patients), and the type of dialysis. The main objective of this study is to measure and compare HRQoL changes in preemptive, hemodialysis (HD), and peritoneal dialysis (PD) patients during the waiting list period for kidney transplantation. METHODS A sample of adult patients on kidney transplant waiting list from three French University Hospital centers was recruited. HRQoL was measured using the SF-36 and a specific questionnaire (ReTransQol), which were collected every 6 months before transplantation in preemptive, HD, and PD patients. Mixed-effects models taking into account time and possible confounding factors were used to compare HRQoL changes between the three groups. RESULTS Preemptive (n = 230), HD (n = 177), and PD patients (n = 39) were enrolled. The renal replacement therapy modalities, time (time on waiting list and age at registration), and gender were associated with HRQoL changes. The HD and PD patients had a significantly lower perceived HRQoL on Role Physical, Social Functioning, and Role Emotional dimensions than the preemptive patients, with lower scores for PD compared to HD patients. The HRQoL scores of all patients were lower compared to the French general population for all dimensions. CONCLUSIONS A better understanding of pre-transplantation patients' experience can help improving patient care with adapted educational programs and psychological support depending on the type of renal replacement therapy.

    更新日期:2019-11-01
  • The association between heart failure hospitalization and self-reported domains of health.
    Qual. Life Res. (IF 2.488) Pub Date : null
    Gregory A Nichols,Jacqueline Pesa,Daniel S Sapp,Aarti Patel

    BACKGROUND We compared self-reported domains of health between patients who with vs. without a recent heart failure (HF) hospitalization. METHODS We fielded a 59-item questionnaire that included the 12-item Kansas City Cardiomyopathy Questionnaire (KCCQ-12) to age/sex-matched groups of 2000 HF patients who had and had not had a recent HF hospitalization. We entered questionnaire responses and electronic medical record data into multivariable logistic regression models to identify independent associations with a HF hospitalization. RESULTS After two mailings, we received 468 completed questionnaires for response rate of 23.4%. Patients with a recent HF hospitalization had significantly lower scores on the KCCQ-12 Quality of Life (52.6 vs. 59.6, p = 0.016) and Social Limitations (48.4 vs. 55.5, p = 0.009) scales as well as the Clinical Summary Scale (50.8 vs. 55.3, p = 0.048) and Total KCCQ-12 score (49.6 vs. 56.8, p = 0.003). In sequential logistic regression models designed to achieve parsimony, Total KCCQ was a strong predictor of being in the recent hospitalization group. When using the KCCQ-12 sub-scales, the Social Limitations scale was a strong predictor of being in the recent hospitalization group. CONCLUSIONS After accounting for comorbidities and other risk factors, a HF hospitalization appears to profoundly limit social activities which can increase the risk of poor outcomes.

    更新日期:2019-11-01
  • The cost-effectiveness analysis of drug therapy versus surgery for symptomatic adenoid hypertrophy by a Markov model.
    Qual. Life Res. (IF 2.488) Pub Date : null
    Han Xiao,Jinqiang Huang,Weifeng Liu,Zihao Dai,Sui Peng,Zhenwei Peng,Ruiming Liang,Renqiang Ma,Yihui Wen,Jian Li,Weiping Wen

    PURPOSE Adenoid hypertrophy (AH) is common among young children. Adenoid-based surgery and drug therapy could be applied for symptomatic AH patients, yet the treatment decision is difficult to make due to the diverse cost and efficacy between these two treatments. METHODS A Markov simulation model was designed to estimate the cost-effectiveness (CE) of the adenoid-based surgery and the drug therapy for symptomatic AH patients. Transition probabilities, costs and utilities were extracted from early researches and expert opinions. Simulations using two set of parameter inputs for China and the USA were performed. Primary outcome was cost per QALY gained over a 6-year period. Deterministic and probabilistic sensitivity analyses were also conducted. RESULTS The utility for the surgery group and the drug group were 4.10 quality-adjusted life years (QALYs) and 3.58 QALYs, respectively. The cost of the surgery group was more than that of the drug group using model parameters specific to China ($1069.0 vs. $753.7) but was less for the USA ($1994.4 vs. $3977.7). Surgery was dominant over drug therapy when US specific parameters were used. Surgery group had an ICER of $604.0 per QALY when parameters specific to China was used. CONCLUSION Surgery is cost-effective in the simulations for both China and the USA at WTP thresholds of $9633.1 and $62,517.5, respectively.

    更新日期:2019-11-01
  • Sleep quality of Shanghai residents: population-based cross-sectional study.
    Qual. Life Res. (IF 2.488) Pub Date : null
    Wenjun Wu,Yonggen Jiang,Na Wang,Meiying Zhu,Xing Liu,Feng Jiang,Genming Zhao,Qi Zhao

    OBJECTIVE To estimate the prevalence of poor sleep and its risk factors for adults living in a suburban area of Shanghai with rapid urbanization. METHODS A total of 37,545 residents who were aged 20 to 74 years and from the "Peak Program," a community-based natural population cohort study, were included. Data on demographics, lifestyle, and physical health-related factors were collected using a face-to-face questionnaire interview. Sleep quality was assessed using the Pittsburgh Sleep Quality Index (PSQI), and poor sleep was defined as a PSQI score above 7. RESULTS The overall mean of PSQI score was 3.69 ± 2.57 while the prevalence of poor sleep was 8.3%. The prevalence of poor sleep quality was higher in participants who were older than 40 years, had less education, smoked tobacco, had anxiety, and had a chronic disease (p < 0.05 for all comparisons). After adjustment for confounding, a logistic regression model indicated that poor sleep was associated with advanced age, smoking, anxiety, cardiovascular and cerebrovascular diseases, respiratory diseases, and other chronic diseases (p < 0.05 for all comparisons). In addition, compared to women who were premenopausal, the naturally postmenopausal women (OR 1.675, 95% CI 1.44-1.94) and induced menopausal women (OR 2.26, 95% CI 1.81-2.82) were more likely to report poor sleep. CONCLUSION The prevalence of poor sleep among individuals who lived in the Songjiang District of Shanghai and were aged 20 to 74 years was remarkably lower than in the general population of China. Poor sleep was generally more common in middle-aged and elderly residents and in those suffering from anxiety and chronic diseases. Regular exercise, anxiety relieving, and treatment improvement of different chronic diseases may help sleep better.

    更新日期:2019-11-01
  • Responsiveness and minimal clinically important difference of TNO-AZL Preschool Children Quality of Life in children with cerebral palsy.
    Qual. Life Res. (IF 2.488) Pub Date : null
    Chia-Ling Chen,I-Hsuan Shen,Hsiang-Han Huang,Chung-Yao Chen,Yi-Ting Hsiao,Ching-Yi Wu,Hsieh-Ching Chen

    PURPOSE To examine the responsiveness and minimal clinically important difference (MCID) of the TNO-AZL (Netherlands Organization for Applied Scientific Research Academic Medical Centre) Preschool Children Quality of Life (TAPQOL) in children with cerebral palsy (CP). METHODS Ninety-seven children with CP (60 males, 37 females; aged 1-6 years) and their caregivers were recruited from the rehabilitation programs of Chang Gung Memorial Hospital in Taiwan for this 6-month longitudinal follow-up study. The Functional Independence Measure for Children (WeeFIM) and TAPQOL outcomes were measured at baseline and at a 6-month follow-up. Responsiveness was examined using the standardized response mean (SRM). The distribution-based and anchor-based MCID were determined. The TAPQOL outcomes include physical functioning (PF), social functioning (SF), cognitive functioning (CF), and emotional functioning (EF) domains. RESULTS The responsiveness of the TAPQOL for all of TAPQOL domains was marked (SRM = 1.12-1.54). The anchor-based MCIDs of TAPQOL for PF, SF, CF, EF, and total domains were 1.25, 3.28, 2.93, 2.25, and 1.73, respectively, which were similar to the distribution-based MCID values of TAPQOL, except in the PF domain. The distribution-based MCIDs of TAPQOL in various domains were 2.85-3.73 when effect size (ES) was 0.2, 7.13-9.32 when ES was 0.5, and 11.40-14.91 when ES was 0.8. CONCLUSIONS TAPQOL is markedly responsive to detect change in children with CP. The caregivers perceived the minimally important change in HRQOL of their children at a relatively low treatment efficacy. Researchers and clinicians can utilize TAPQOL data to determine whether changes in TAPQOL scores indicate clinically meaningful effects post-treatment and at the follow-up.

    更新日期:2019-11-01
  • Consistency matters: measurement invariance of the EORTC QLQ-C30 questionnaire in patients with hematologic malignancies.
    Qual. Life Res. (IF 2.488) Pub Date : null
    Kathrin Sommer,Francesco Cottone,Neil K Aaronson,Peter Fayers,Paola Fazi,Gianantonio Rosti,Emanuele Angelucci,Gianluca Gaidano,Adriano Venditti,Maria Teresa Voso,Michele Baccarani,Marco Vignetti,Fabio Efficace

    PURPOSE To ensure that observed differences in the scores of the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) reflect actual differences in health-related quality of life (HRQoL) rather than measurement bias, measurement invariance needs to be established. We investigated the assumption of measurement invariance of the EORTC QLQ-C30 in patients with hematological malignancies across age, sex, comorbidity, disease type, and time. METHODS We used a large database of patients with hematological malignancies, which included HRQoL data collected with the EORTC QLQ-C30. We used the structural equation modeling approach to test for measurement (metric and scalar) invariance across groups (age, sex, comorbidity, disease) and time (baseline, 1 month and 2 month follow-up). Longitudinal invariance was examined in a subgroup of patients diagnosed with myelodysplastic syndromes. RESULTS Confirmatory factor analyses demonstrated full measurement invariance for age and comorbidity and over time, while support for partial scalar invariance was obtained for sex and disease. Violations of invariance for sex were observed for items of the physical functioning scale and the emotional functioning scale, while for disease type, violations of invariance were observed for items of the physical functioning scale, emotional functioning scale, and the cognitive functioning scale. CONCLUSIONS Our findings support measurement invariance of the EORTC QLQ-C30 in a large sample of patients with hematological malignancies. The results showed that the number of non-invariant items was negligible, suggesting that this questionnaire is a valid and robust measurement tool in patients with hematological malignancies, also for comparisons across groups and time.

    更新日期:2019-11-01
  • Time to deterioration in cancer randomized clinical trials for patient-reported outcomes data: a systematic review.
    Qual. Life Res. (IF 2.488) Pub Date : null
    E Charton,B Cuer,F Cottone,F Efficace,C Touraine,Z Hamidou,F Fiteni,F Bonnetain,M-C Woronoff-Lemsi,C Bascoul-Mollevi,A Anota

    PURPOSE The time to deterioration (TTD) approach has been proposed as a modality of longitudinal analysis of patient-reported outcomes (PROs) in cancer randomized clinical trials (RCTs). The objective of this study was to perform a systematic review of how the TTD approach has been used in phase III RCTs to analyze longitudinal PRO data. METHODS A systematic literature search was conducted in PubMed/MEDLINE, the Cochrane Library and through manual search to identify studies published between January 2014 and June 2018. All phase III cancer RCTs including a PRO endpoint using the TTD approach were considered. We collected general information about the study, PRO assessment and the TTD approach, such as the event definition, the choice of reference score and whether the deterioration was definitive or not. RESULTS A total of 1549 articles were screened, and 39 studies were finally identified as relevant according to predefined criteria. Among these 39 studies, 36 (92.3%) were in advanced and/or metastatic cancer. Several different deterioration definitions were used in RCTs, 10 studies (25.6%) defined the deterioration as "definitive", corresponding to a deterioration maintained over time until the last PRO assessment available for each patient. The baseline score was explicitly stated as the reference score to qualify the deterioration for most studies (n = 31, 79.5%). CONCLUSION This review highlights the lack of standardization of the TTD approach for the analysis of PRO data in RCTs. Special attention should be paid to the definition of "deterioration", and this should be based on the specific cancer setting.

    更新日期:2019-11-01
  • Advancing quality-of-life research by deepening our understanding of response shift: a unifying theory of appraisal.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-07-20
    Bruce D Rapkin,Carolyn E Schwartz

    Studies of response-shift phenomena in quality-of-life (QOL) research have grown steadily in the more than two decades of research. As a field, we have been calling a lot of different approaches "response shift" over the years, but the only approach that fully embodies the foundational (Sprangers and Schwartz, Soc Sci Med 48(11):1507-1515, 1999) theoretical model is appraisal. According to the definition proposed in this model, response shift is about individual cognitive change. This paper presents the argument that all response-shift research models need to be grounded in an understanding of cognitive appraisal. We present a reasoned argument for why appraisal is fundamental to QOL response-shift research. We describe current measurement and analytic methods for working with appraisal, and how these methods can be integrated into the current response-shift statistical 'tool box.' We propose future research directions on theory, methods, and cross-calibration of group- and individual-level methods. There are currently three tools available in multiple languages for assessing QOL appraisal processes. They have been tested and used to assess response shift in empirical studies of ~ 7000 people with chronic illness. The study findings illustrate how appraisal theory and methods can facilitate methodological investigations of and to enhance other response-shift detection methods. Future research directions are proposed to enrich QOL theory, response-shift methods, and interpretation of QOL change over time. Appraisal theory and methods are the closest approximation to a response-shift 'gold standard.' They provide the foundation for understanding response shift and point to a unified theory of QOL.

    更新日期:2019-11-01
  • Towards patients' understanding of health-related quality of life-a mixed-method study in psoriasis and multiple sclerosis.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-06-20
    Valerie Andrees,Joachim Westenhöfer,Christine Blome,Christoph Heesen,Matthias Augustin,Janine Topp

    PURPOSE Patients' individual understanding of health-related quality of life (HRQoL) varies widely, making the measurement of this complex and subjective construct challenging. Anchoring vignettes, i.e., descriptions of fictive patients may provide insights into patients' individual questionnaire reference frames, assessment processes, and understanding of HRQoL. This study analyzes how patients assess HRQoL of vignettes. METHODS This exploratory mixed-method study included 100 patients with a chronic disease (50 multiple sclerosis (MS); 50 psoriasis). Sixteen vignettes, two for each domain of the SF-12v2, were developed based on literature recommendations and pretested in a convenience sample of seven healthy individuals. Patients assessed their own HRQoL and HRQoL of the vignettes on the SF-12v2. In semi-structured interviews, they justified their assessments. We quantitatively analyzed associations of vignette assessments with individual characteristics using linear regression models and qualitatively analyzed assessment justifications. RESULTS Patients' age and disease were significant (p < 0.05) predictors for ten and seven vignette assessments, respectively. Older patients assessed vignettes being less extreme; patients diagnosed with MS rated them more positively. Overall, adjusted R2 values ranged from 0.033 to 0.172. Qualitatively, most of the ratings were based on the evaluation of symptoms or impairments in daily life. Fewer participants ranked different dimensions of HRQoL in a personal hierarchy or assumed impairments beyond the vignette description. CONCLUSIONS The understanding of HRQoL may vary substantially and is associated with individual characteristics, individual assessment strategies, and probably other intrinsic factors as explained variance was quite low. Therefore, usage of generic instruments only allows for limited comparison across groups.

    更新日期:2019-11-01
  • Appraising the quality of tools used to record patient-reported outcomes in users of augmentative and alternative communication (AAC): a systematic review.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-06-20
    Katherine Broomfield,Deborah Harrop,Simon Judge,Georgina Jones,Karen Sage

    PURPOSE People who have complex communication needs (CCN), and who use augmentative and alternative communication (AAC) to help them express themselves, can be difficult to engage in decision making about their healthcare. The purpose of this review was to identify what patient-reported outcome measures (PROMs) have been employed with people who use AAC. Of the tools identified, the review aimed to establish what conceptual frameworks were used and how the reports describe completion of the PROM. METHODS A systematic literature review was carried out. A pre-defined set of search terms was entered into five main health and education databases. Titles and abstracts were sifted for relevance. Full text papers were screened against inclusion/exclusion criteria. Data pertaining to the type and nature of the PROM used was extracted. Complementary data sources were analysed to construct a narrative synthesis of the papers identified. RESULTS Within 15 papers that met the review criteria, 25 PROMs were used with people who rely on AAC comprising of 15 separate measures. The conceptual frameworks for 12 of these tools were reported from which 62 items, or concepts being measured, were identified. Following synthesis of these items, 9 conceptual domains and 11 sub-domains were generated. Limited information was available about who completed the PROM nor how much, if any, support they received. CONCLUSIONS No PROM that has been developed specifically for people who use AAC was identified by this review. Of the tools that have been used with people who use AAC, the concepts measured were broad and varied. The quality of reporting concerning who completed the PROM was limited, undermining the trustworthiness of many of the studies.

    更新日期:2019-11-01
  • The role of dispositional mindfulness in a stress-health pathway among Parkinson's disease patients and caregiving partners.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-06-16
    Allison Hicks,Kala Phillips,Chelsea Siwik,Paul Salmon,Irene Litvan,Megan E Jablonski,J Vincent Filoteo,Karen Kayser,Sandra E Sephton

    PURPOSE Parkinson's disease (PD) patients and their caregivers experience significant distress that impacts physical, emotional and social functioning in the patient, and in turn, has a significant impact on the caregiver. Lower levels of stress have been associated with a better prognosis in PD. The quality of dispositional mindfulness-innate present moment, non-judgmental awareness-has consistently been associated with less perceived stress, greater well-being, and better physical health in both clinical and healthy populations. To date, associations of mindfulness with distress, depression, sleep problems, and other variables that define health-related quality of life have not been examined in the context of PD patient/caregiver dyads. METHODS We investigated the impact of dispositional mindfulness in a stress-health model among eighteen dyads consisting of PD patients and their caregivers. RESULTS Multilevel linear modeling (actor-partner interdependence models) revealed significant associations between dispositional mindfulness and stress appraisal, interpersonal support, depressive symptoms, sleep, and health-related quality of life (HRQOL) within both dyadic partners. As expected, results demonstrated significant associations of distress with interpersonal support, depressive symptoms, sleep and HRQOL for both PD patients and caregivers. CONCLUSIONS Dispositional mindfulness was associated with reduced distress and its downstream clinical consequences. These results support an ameliorative role for dispositional mindfulness among PD patients and caregivers, as a protective factor against psychosocial burdens imposed on couples related to disease and caregiving. Findings suggest future studies should explore mindfulness training as a therapeutic option.

    更新日期:2019-11-01
  • Prediction of Oswestry Disability Index (ODI) using PROMIS-29 in a national sample of lumbar spine surgery patients.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-06-14
    Jacquelyn S Pennings,Clinton J Devin,Inamullah Khan,Mohamad Bydon,Anthony L Asher,Kristin R Archer

    PURPOSE The primary purpose was to examine the measurement properties of the PROMIS-29 to better understand its use in patients undergoing spine surgery. A secondary objective was to calculate a predictive equation between PROMIS-29 and ODI, to allow clinicians and researchers to determine a predicted ODI score based on PROMIS short form scores. METHODS 719 patients with PROMIS v2.0 and ODI responses were queried from the quality outcomes database. Validity was assessed using coefficient omega, ceiling/floor effects, and confirmatory factor analysis. Multivariable regression predicting ODI scores from PROMIS-29 domains was used to create a predictive equation. Predicted ODI scores were plotted against ODI scores to determine how well PROMIS-29 domains predicted ODI. RESULTS Results showed good reliability and validity of PROMIS-29 in patients undergoing lumbar spine surgery: convergent and discriminant validity, low floor/ceiling effects, and unidimensional domains. The conversion equation used 6 PROMIS-29 domains (ODI% =  37.847- 1.475*[PFraw] + 1.842*[PAINraw] + 0.557*[SDraw] - 0.642*[SRraw] + 0.478*[PIraw] + 0.295*[DEPraw]). Correlation between the predicted and actual ODI scores was R = 0.88, R2 = 0.78, suggesting that the equation predicted ODI scores that are strongly correlated with actual ODI scores. CONCLUSIONS Good measurement properties support the use of PROMIS-29 in spine surgery patients. Findings suggest accurate ODI scores can be derived from PROMIS-29 domains. Clinicians who want to move from ODI to PROMIS-29 can use this equation to obtain estimated ODI scores when only collecting PROMIS-29. These results support the idea that PROMIS-29 domains have the potential to replace disease-specific traditional PROMs.

    更新日期:2019-11-01
  • A systematic review of quality of life research in medicine and health sciences.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-06-13
    K Haraldstad,A Wahl,R Andenæs,J R Andersen,M H Andersen,E Beisland,C R Borge,E Engebretsen,M Eisemann,L Halvorsrud,T A Hanssen,A Haugstvedt,T Haugland,V A Johansen,M H Larsen,L Løvereide,B Løyland,L G Kvarme,P Moons,T M Norekvål,L Ribu,G E Rohde,K H Urstad,S Helseth,

    PURPOSE Quality of life (QOL) is an important concept in the field of health and medicine. QOL is a complex concept that is interpreted and defined differently within and between disciplines, including the fields of health and medicine. The aims of this study were to systematically review the literature on QOL in medicine and health research and to describe the country of origin, target groups, instruments, design, and conceptual issues. METHODS A systematic review was conducted to identify research studies on QOL and health-related quality of life (HRQOL). The databases Scopus, which includes Embase and MEDLINE, CINAHL, and PsycINFO were searched for articles published during one random week in November 2016. The ten predefined criteria of Gill and Feinstein were used to evaluate the conceptual and methodological rigor. RESULTS QOL research is international and involves a variety of target groups, research designs, and QOL measures. According to the criteria of Gill and Feinstein, the results show that only 13% provided a definition of QOL, 6% distinguished QOL from HRQOL. The most frequently fulfilled criteria were: (i) stating the domains of QOL to be measured; (ii) giving a reason for choosing the instruments used; and (iii) aggregating the results from multiple items. CONCLUSION QOL is an important endpoint in medical and health research, and QOL research involves a variety of patient groups and different research designs. Based on the current evaluation of the methodological and conceptual clarity of QOL research, we conclude that the majority QOL studies in health and medicine have conceptual and methodological challenges.

    更新日期:2019-11-01
  • Emotional and physical reactions to perceived discrimination, language preference, and health-related quality of life among Latinos and Whites.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-06-12
    Kellee White,Jourdyn A Lawrence,Jason L Cummings,Calley Fisk

    PURPOSE To investigate whether emotional and physical reactions to perceived discrimination are associated with health-related quality of life (HRQOL) among whites and Latinos (by language preference) in Arizona. METHODS A cross-sectional analysis using the Arizona Behavioral Risk Factor Surveillance System (2012-2014) was restricted to non-Hispanic white and Latino (grouped by English- or Spanish-language preference) participants who completed the Reactions to Race optional module (N = 14,623). Four core items from the Centers for Disease Control and Prevention's Healthy Days Measures were included: self-rated health; physically unhealthy, mentally unhealthy; and functionally limited days. Poisson regression models estimated prevalence ratios and 95% confidence intervals (CIs) for poor self-rated health. Multinomial logistic models estimated odds ratios and 95% CI for poor mental, physical, and functionally limited days (defined as 14 + more days). Models were adjusted for sociodemographics, health behaviors, and multimorbidity. RESULTS Reports of emotional and physical reactions to perceived discrimination were highest among Spanish-language preference Latinos. Both Spanish- and English-language preference Latinos were more likely to report poor self-rated health in comparison to whites. In separate fully adjusted models, physical reactions were positively associated with each HRQOL measure. Emotional reactions were only associated with reporting 14 + mental unhealthy (aOR 3.16; 95% CI 1.82; 5.48) and functionally limited days (aOR 1.93; 95% CI 1.04, 3.58). CONCLUSIONS Findings from this study suggest that physical and emotional reactions to perceived discrimination can manifest as diminished HRQOL. Consistent collection of population-based measures of perceived discrimination is warranted to track and monitor differential health vulnerability that affect Latinos.

    更新日期:2019-11-01
  • Longitudinal measurement invariance of the Satisfaction With Life Scale in adolescence.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-06-10
    Igor Esnaola,Manuel Benito,Iratxe Antonio-Agirre,Inge Axpe,Margarita Lorenzo

    PURPOSE The main purpose of this research was to examine the longitudinal measurement invariance of the Satisfaction With Life Scale (SWLS) in adolescence. METHOD The sample was composed by 484 adolescents from Spain, 46.7% were males. All participants belonged to six academic levels from Grade 7 to Grade 12, and answered the questionnaires at two different times: at the beginning (Mage1 = 14.95, SD1 = 1.81) and at the end of the school year (Mage2 = 15.61, SD2 = 1.81). The reliability of the scale was obtained through Cronbach's alpha, Guttman lambda, and MacDonald's Omega total. The multiple group confirmatory factor analysis (MGCFA) was used to examine the fit of the unifactorial model to data and to test the measurement of longitudinal invariance of the scale across two time points (at the beginning T1, and the end T2, of the academic year), and the time points and groups (gender and age). RESULTS The values of the single-factor SWLS structure were T1 (CFI1 = 1.000, TLI1 = .997, RMSEA1 = .080, and SRMR1 = .028), and T2 (CFI2 = .997, TLI2 = .995, RMSEA2 = .032, and SRMR2 = .034). On the other hand, values of the reliability and composite reliability when analyzing both time points together as well as separately were as follows: Cronbach's alpha = .86, Guttman's lambda = .84, McDonald's Omega total = .89. Results confirmed the longitudinal invariance of SWLS. The differences in gender and age were not significant and the small differences across time points showed that the means of the latent factor remained the same over time in both variables. CONCLUSION The present study confirmed the single-factor structure of the SWLS in Spanish adolescents, as well as a good reliability and composite reliability. The full longitudinal measurement invariance was also found and there were negligible differences across time points considering gender and age. If these findings are further replicated, the scale could be used to compare the life satisfaction across two time points considering different age and gender groups.

    更新日期:2019-11-01
  • Measurement properties of PROMIS short forms for pain and function in orthopedic foot and ankle surgery patients.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-06-10
    Anika Stephan,Jens Mainzer,Danica Kümmel,Franco M Impellizzeri

    PURPOSE To examine the measurement properties of the German PROMIS short forms for pain intensity (PAIN), pain interference (PI) and physical function (PF) in orthopedic foot and ankle surgery patients. METHODS Patient-rated outcomes were collected from consecutive patients of our foot and ankle registry before and 6 months after surgery. Measurement properties were tested according to the COnsensus-based Standards for the selection of health status Measurement Instruments (COSMIN). The German Foot Function Index (FFI-D) served as a legacy measure. RESULTS 748 patients were included in our cross-sectional sample. Longitudinal and test-retest data were available for 202 and 65 patients, respectively. Construct validity of all short forms was good. All Cronbach's α and intraclass correlation coefficients were > 0.7. The smallest detectable change (SDC) was highest for PF (8.9) and lowest for PI (6.5). Minimal important change was 4 to 5 points and thus smaller than SDC for all instruments. We observed a baseline ceiling effect for PF. PI showed insufficiently correlated change scores with FFI-D disability change scores, and therefore failed the responsiveness testing. CONCLUSION Our study showed some adequate psychometric properties, but also certain aspects regarding interpretability and responsiveness that researchers must be aware of when using PROMIS short forms of pain and function in foot and ankle surgery patients.

    更新日期:2019-11-01
  • Evaluation of the responsiveness of Short Form-12 Health Survey version 2 (SF-12v2) in Chinese patients with hypertension in primary care.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-06-06
    Eric Yuk Fai Wan,Esther Yee Tak Yu,Weng Yee Chin,Edmond Pui Hang Choi,Tingting Wu,Cindy Lo Kuen Lam

    PURPOSE There is limited evidence on the responsiveness of the Short Form-12 Health Survey version 2 (SF-12v2) in hypertensive patients. This study aimed to evaluate both the responsiveness of the SF-12 measures in Chinese hypertensive patients. METHODS A prospective longitudinal study was conducted on hypertensive patients managed in public primary care clinics between 2012 and 2013. A total of 583 and 431 patients were surveyed and completed SF-12v2 at baseline and at 12-month follow-up interviews, respectively. Using global rating of change scale as an external anchor, the responsiveness was assessed by linear mixed effect models, multiple linear regression models, and receiver operating characteristic (ROC) curve analysis. RESULTS SF-12v2 managed to detect negative changes among hypertensive patients in worsened general health group but failed to identify changes among hypertensive patients in improved general health group. Meanwhile, some domains of SF-12v2 detected a significant difference in difference between patients of worsened and stable/improved group and between patients of stable and improved group, but none of the domains and the summary scales reached the recommended standard of 0.7 in any comparisons in ROC analysis. CONCLUSIONS The SF-12v2 was responsive to worsening of HRQOL but not to improvements in HRQOL among hypertensive patients. The overall responsiveness of SF-12v2 in hypertensive patients is unsatisfactory. Further studies are needed to identify HRQOL measures with good internal and external responsiveness for hypertensive patients.

    更新日期:2019-11-01
  • The effect of team collaboration and continuity of care on health and disability among rehabilitation patients: a longitudinal survey-based study from western Norway.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-05-31
    Merethe Hustoft,Eva Biringer,Sturla Gjesdal,Vegard Pihl Moen,Jörg Aβmus,Øystein Hetlevik

    PURPOSE The purpose of this study was to investigate how changes in patient-rated health and disability from baseline to after rehabilitation were associated with communication and relationships in rehabilitation teams and patient-rated continuity of care. METHODS Linear models were used to assess the associations between relational coordination [RC] and Nijmegen Continuity Questionnaire-Norwegian version [NCQ-N] with changes in the World Health Association Disability Assessment Schedule 2.0 [WHODAS 2.0] and EuroQol EQ-VAS [EQ-VAS]. To express change in WHODAS 2.0 and EQ-VAS, the model was adjusted for WHODAS 2.0 and EQ-VAS baseline scores. Analyses for possible slopes for the various diagnosis groups were performed. RESULTS A sample of 701 patients were included in the patient cohort, followed from before rehabilitation to 1 year after a rehabilitation stay involving treatment by 15 different interprofessional teams. The analyses revealed associations between continuity of care and changes in patient-rated health, measured with EQ-VAS (all p values < 0.01). RC communication was associated with more improvement in functioning in neoplasms patient group, compared to improvement of health among included patient groups. The results revealed no associations between NCQ-N and WHODAS 2.0 global score, or between RC in the rehabilitation teams treating the patients and changes in WHODAS 2.0 global score. CONCLUSION The current results revealed that better personal, team and cross-boundary continuity of rehabilitation care was associated with better patient health after rehabilitation at 1-year follow-up. Measures of patient experiences with different types of continuity of care may provide a promising indicator of the quality of rehabilitation care.

    更新日期:2019-11-01
  • The reliability and validity of the Chinese Short Warwick-Edinburgh Mental Well-being Scale in the general population of Hong Kong.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-05-31
    Yuying Sun,Tzu Tsun Luk,Man Ping Wang,Chen Shen,Sai Yin Ho,Kasisomayajula Viswanath,Sophia Siu Chee Chan,Tai Hing Lam

    PURPOSE To evaluate the reliability and validity of the 7-item Chinese Short Warwick-Edinburgh Mental Well-being Scale (SWEMWBS) in Hong Kong Chinese. METHODS Under "A Jockey Club Initiative for a Harmonious Society" project, a random telephone survey was conducted in 2017 on 1331 Hong Kong Chinese residents aged ≥ 18. A confirmatory factor analysis (CFA) was conducted to test the factorial validity. The Spearman correlations of the SWEMWBS with other scales including the 12-item short form health survey (SF-12), family well-being, self-rated health, the global happiness item (GHI), subjective happiness scale (SHS), and patient health questionnaire-4 (PHQ-4), were used to evaluate the convergent and divergent validity. Known-group validity was also assessed. We calculated congeneric reliability based on standardized factor loadings and error variances. Two-week test-retest reliability was assessed in 100 randomly selected respondents using intraclass correlation coefficient (ICC). RESULTS Among the weighted sample, 55.9% were female and 72.9% were 25 to 64 years old. The CFA indicated good validity of the SWEMWBS. The SWEMWBS had moderate correlations with SHS, SF-12 mental component, PHQ-4 and GHI, but a weak correlation with SF-12 physical component. Older respondents, those with higher education level, married, working, with higher household income reported higher level of well-being. The congeneric reliability of the SWEMWBS was 0.85. Moderate to good test-retest reliability was observed (ICC 0.70, 95% CI 0.55 to 0.80). CONCLUSION The Chinese SWEMWBS showed good validity and reliability for measuring well-being in the general population of Hong Kong.

    更新日期:2019-11-01
  • Type of clinical outcomes used by healthcare professionals to evaluate health-related quality of life domains to inform clinical decision making for chronic pain management.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-05-30
    Diana Zidarov,Regina Visca,Sara Ahmed

    PURPOSE To evaluate the health-related quality of life (HRQoL) domains currently assessed by healthcare professionals (HCPs) in secondary and tertiary hospital-based chronic pain clinics and the type of clinical outcomes (CO) used. METHODS Electronic cross-sectional survey (May to September 2016) based on domains of HRQoL included in the Patient-Reported Outcomes Measurement Information System (PROMIS) framework. RESULTS HCPs response rate was 53% (36/68). Their mean clinical experience was 14.8 years (± 11.1), and their mean experience treating chronic pain (CP) population was 10.2 years (± 7.8). All PROMIS-HRQoL domains were assessed by HCPs (range 28-97%, mean = 64%) with a preponderance of domains related to physical health (mean = 82%). Standardized outcome measures (OMs) including performance outcomes and patient-reported outcomes (PROs) were not frequently used (mean 0.5% and 3%, respectively) for assessing HRQoL domains compared to clinician reported outcomes (patient interviews, patient observation) (mean = 87%). Forty different OMs for assessing HRQoL domains were reported, and 30% of OMs were used by more than one HCP. HCPs expressed a need (range from 2.3 to 26.3%) for using more than one type of CO for assessing most domains of HRQoL (range from 2.3 to 26.3%) with a preference of using more PROs combined with CROs. CONCLUSIONS All domains of HRQoL are assessed by at least some HCPs for chronic pain management. Standardized OMs including performance-based measures and PROs were not frequently used, and there was no consistent use of the same OM across HCPs. A consensus among different stakeholders in chronic pain management on core domains of HRQoL and their associated OMs to promote a more evidence-based assessment is needed.

    更新日期:2019-11-01
  • Self-stigma predicts lower quality of life in Chinese American breast cancer survivors: exploring the mediating role of intrusive thoughts and posttraumatic growth.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-05-28
    Celia C Y Wong,Bradley M Pan-Weisz,Tonya M Pan-Weisz,Nelson C Y Yeung,Winnie W S Mak,Qian Lu

    BACKGROUND It is common for Chinese American breast cancer survivors to believe that having cancer is a stigmatizing condition. Little research exists on how this might affect their quality of life (QoL) and through which psychological processes. OBJECTIVE In the present study, we examined the association between self-stigma and QoL in a sample of Chinese American breast cancer survivors and tested the potential mediating roles of intrusive thoughts and posttraumatic growth in this relationship. METHODS One hundred and thirty-six Chinese American breast cancer survivors completed a questionnaire packet assessing their levels of self-stigma, intrusive thoughts, posttraumatic growth, and QoL. RESULTS As hypothesized, findings indicated a significant negative correlation between self-stigma and QoL. Findings from a path analysis indicated significant indirect effects of self-stigma on QoL through intrusive thoughts and posttraumatic growth-the negative correlation between self-stigma and QoL was completely mediated by more intrusive thoughts and less posttraumatic growth. CONCLUSIONS Our findings suggest that self-stigma may harm QoL among Chinese American breast cancer survivors by leading to more intrusive thoughts and not focusing on posttraumatic growth. To attenuate the negative impact of self-stigma on QoL among Chinese American breast cancer survivors, cognition-focused interventions should be utilized to reduce intrusive thoughts and foster posttraumatic growth.

    更新日期:2019-11-01
  • Cancer-related symptoms, mental well-being, and psychological distress in men diagnosed with prostate cancer treated with androgen deprivation therapy.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-05-23
    Sarah Wilding,Amy Downing,Penny Wright,Peter Selby,Eila Watson,Richard Wagland,David W Donnelly,Luke Hounsome,Hugh Butcher,Malcolm Mason,Ann Henry,Anna Gavin,Adam W Glaser

    PURPOSE There are known associations between treatment of prostate cancer (PCa) involving Androgen Deprivation Therapy (ADT) and psychological and physical side effects. We investigate the associations between cancer-related symptoms, health-related quality of life (HRQL), and poor psychological outcomes in men whose treatment for PCa involved ADT. METHODS A cross-sectional postal questionnaire was administered to UK men 18-42 months post diagnosis of PCa. Men completed items on functional outcomes using the Expanded Prostate Cancer Index Composite (EPIC-26), EuroQol-5D (EQ-5D), and the European Organisation for Research and Treatment of Cancer (EORTC) Fatigue subscale. Psychological outcomes (mental well-being and psychological distress) were assessed using the Short Warwick-Edinburgh Mental Well-being Scale (SWEMWBS) and the Kessler 6-item scale (K6), respectively. Associations between explanatory variables and psychological outcomes were assessed using stepped logistic regression. RESULTS 13,097 men treated with ADT completed a questionnaire. A minority of men reported poor mental well-being (15.5%) or severe psychological distress (6.6%). After controlling for sociodemographic and clinical variables, reporting clinically significant fatigue was strongly associated with severe psychological distress (OR 9.92; 95% CI 7.63 to 12.89) and poor well-being (OR 3.86; 95% CI 3.38 to 4.42). All cancer-related symptoms and HRQL variables were associated with both psychological outcomes. CONCLUSIONS While the majority of men treated with ADT did not report poor psychological outcomes, a small proportion reported severe problems. Clinically significant fatigue was demonstrated as a possible indicator of poor outcomes. Healthcare systems need to have clear protocols in place which specifically and routinely target psychological distress and fatigue.

    更新日期:2019-11-01
  • A systematic scoping review of oral health models.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-05-19
    Stella Sekulic,Nicole Theis-Mahon,Ksenija Rener-Sitar

    PURPOSE The purpose of this systematic scoping review was to identify, analyze, and compare existing generic oral health models in English scientific dental literature. METHODS We conducted a literature search in five databases, Ovid Medline, Embase, PsycINFO, Cochrane, and Web of Science, using pre-determined inclusion and exclusion criteria and calculated the interrater agreement coefficient "prevalence-adjusted bias-adjusted kappa" (PABAK). We identified, reviewed, and displayed the generic oral health models in review tables. RESULTS Of the 3498 references identified, 13 oral health models from seven countries met the inclusion criteria. The interrater agreement coefficient resulted in a ''substantial agreement'' (PABAK = 0.80). Ten of the 13 (77%) generic oral health models were developed in English-speaking countries. All models were multidimensional and contained from two to 12 dimensions. Four models presented linear conception, and we observed non-linear conception in six models. Authors presented the unidirectional or reciprocal relations between dimensions in six models, and five models, respectively. Two models did not show models' relation or conception. Researchers used only experts (N = 1), literature (N = 2), dental patients (N = 2), or general population subjects (N = 3), or a combination of these sources (N = 5) for development of their generic oral health models. Statistical analyses supported the majority of the models (N = 8). CONCLUSIONS The identified 13 oral health models vary substantially in their characteristics. This systematic scoping review of generic oral health models provides a toolbox, from which dental researchers can choose the theoretical model they consider fit best their oral health concept they want to investigate. Ideally, the international dental community will come soon to an agreement of accepting one oral health model, and this will provide an opportunity for comparison of outcomes across studies and populations and thus elevate dentistry to a higher evidence-based level.

    更新日期:2019-11-01
  • Health-related quality of life among adult HIV positive patients: assessing comprehensive themes and interrelated associations.
    Qual. Life Res. (IF 2.488) Pub Date : 2019-05-18
    C den Daas,G E L van den Berk,M -J T Kleene,E S de Munnik,J G Lijmer,K Brinkman

    PURPOSE We selected and evaluated a comprehensive set of themes that encompass health-related quality of life (HRQOL) among HIV patients, which enables clinicians to tailor care to individual needs, follow changes over time and quantify returns on health care investments and interventions. METHODS HIV patients (N = 250) of two Dutch HIV clinics were invited to complete an online survey comprised of a set of (adaptations of) validated questionnaires measuring eight themes, including general health (SF-12), stigma (short stigma scale), social support (SSL12-I), self-esteem (SISE), sexuality problems, anxiety and depression (HADS), sleeping difficulties (SCL90-Sleep) and perceived side-effects. RESULTS Findings from 170 (response rate 68%) patients (Male = 159, 94.1%) showed that questionnaires had high internal consistency, and most themes significantly correlated (r's .21 to - .69, p < .05) in the expected directions. Exploring cut-off scores shows that a significant proportion of patients score outside of the desired range on single themes (between 16.0 and 73.1%), and many patients on multiple themes simultaneously (8.9% on 5 or more themes). Regression analysis showed that social support, self-esteem and sexuality problems were associated with general health (R = .48, R2 = .23, F(4,145) = 10.57, p < .001); adding anxiety and depression, sleeping difficulties and perceived side-effects explained 51.2% of the variance in total (R = .72, ∆R2 = .29, F(3, 142) = 27.82, p < .001). CONCLUSIONS We succeeded in developing a questionnaire that comprehensively assesses HRQOL. HRQOL of the majority of Dutch HIV patients could be improved. The themes strongly influenced each other, therefore insights into any of the themes could inform interventions to improve HRQOL, and increase attention to these themes in routine consultations between patients and health care professionals.

    更新日期:2019-11-01
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