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Measuring health-related quality of life in children with suspected genetic conditions: validation of the PedsQL proxy-report versions Qual. Life Res. (IF 3.5) Pub Date : 2024-03-12 Hadley Stevens Smith, Michael Leo, Katrina Goddard, Kristin Muessig, Frank Angelo, Sara Knight, Simon Outram, Nicole R. Kelly, Christine Rini
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Association between sleep quality and quality of life in Singapore Qual. Life Res. (IF 3.5) Pub Date : 2024-03-12 Eng Hong Tay, Yen Sin Koh, Janhavi Ajit Vaingankar, Edimansyah Abdin, Rajeswari Sambasivam, Yunjue Zhang, Saleha Shafie, Mythily Subramaniam
Purpose Several studies have examined the relationship between sleep quality and health-related quality of life (HRQOL). However, there are a lack of generalizable data on this association in Singapore. Our study aimed to (1) investigate the association between sleep quality and HRQOL and (2) examine whether age moderated these associations. Methods Data were obtained from nationwide Singapore Mental
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Health-related quality of life measures provide information on the contributors, components, and consequences of frailty in HIV: a systematic mapping review Qual. Life Res. (IF 3.5) Pub Date : 2024-03-10 Mehmet Inceer, Nancy Mayo
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Reciprocal association between pain and quality of life after newly acquired spinal cord injury Qual. Life Res. (IF 3.5) Pub Date : 2024-03-08
Abstract Purpose Pain is highly prevalent in spinal cord injury (SCI) and a key determinant of quality of life (QoL). This is the first study to examine reciprocal associations between pain and QoL in patients undergoing their first inpatient rehabilitation after SCI. Methods Longitudinal data, with three measurement time points (1 month and 3 months after SCI onset, and at discharge from inpatient
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Health-related quality of life and associated risk factors in patients with Multiple Osteochondromas: a cross-sectional study Qual. Life Res. (IF 3.5) Pub Date : 2024-03-08 Manila Boarini, Morena Tremosini, Alessia Di Cecco, Maria Gnoli, Evelise Brizola, Marina Mordenti, Elena Pedrini, Manuela Locatelli, Marcella Lanza, Diego Antonioli, Giovanni Gallone, Gino Rocca, Eric L. Staals, Giovanni Trisolino, Luca Sangiorgi
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When better is the enemy of good: two cautionary tales of conceptual validity versus parsimony in clinical psychometric research Qual. Life Res. (IF 3.5) Pub Date : 2024-03-08 Carolyn E. Schwartz, Katrina Borowiec, Bruce D. Rapkin
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The Hemodialysis Distress Thermometer for Caregivers (HD-DT-C): development and testing of the psychometric properties of a new tool for screening psychological distress among family caregivers of adults on hemodialysis Qual. Life Res. (IF 3.5) Pub Date : 2024-03-07 Helena Sousa, Oscar Ribeiro, Daniela Figueiredo
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Understanding Canadian stakeholders’ views on measuring and valuing health for children and adolescents: a qualitative study Qual. Life Res. (IF 3.5) Pub Date : 2024-03-05 Feng Xie, Shitong Xie, Eleanor Pullenayegum, Arto Ohinmaa
Objective Valuing child health is critical to assessing the value of healthcare interventions for children. However, there remain important methodological and normative issues. This qualitative study aimed to understand the views of Canadian stakeholders on these issues. Methods Stakeholders from health technology assessment (HTA) agencies, pharmaceutical industry representatives, healthcare providers
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Patient experiences in ulcerative colitis: conceptual model and review of patient-reported outcome measures Qual. Life Res. (IF 3.5) Pub Date : 2024-03-05 Chong Kim, Fiona L. Brown, Caroline Burk, Milena Anatchkova, Nashmel Sargalo, Ankita Kaushik
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An effort to improve the collection of patient-generated data: readability and understandability of patient-reported outcomes measures in a survivorship cohort Qual. Life Res. (IF 3.5) Pub Date : 2024-03-05 Camila Chiodi, Jonathan Epstein, Johanna Arvis, Elise Martin, Aude Barbier, Antonio Di Meglio, Emma Gillanders, Guillemette Jacob, Gwenn Menvielle, Sibille Everhard, Francis Guillemin, Ines Vaz Luis, Maria Alice Franzoi
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Power analyses for measurement model misspecification and response shift detection with structural equation modeling Qual. Life Res. (IF 3.5) Pub Date : 2024-03-01 M. G. E. Verdam
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Differences in health-related quality of life between native and foreign-born gynaecological cancer patients in Sweden: a five-year cross-sectional study Qual. Life Res. (IF 3.5) Pub Date : 2024-03-01 Andreas Karlsson Rosenblad, Bodil Westman, Karin Bergkvist, Ralf Segersvärd, Nathalie Roos, Mia Bergenmar, Lena Sharp
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Measuring patient activation: the utility of the Patient Activation Measure administered in an interview setting Qual. Life Res. (IF 3.5) Pub Date : 2024-02-22 Magdalena Holter, Alexander Avian, Martin Weger, Sanja Strini, Monja Michelitsch, Katja Brenk-Franz, Andreas Wedrich, Andrea Berghold
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Scoring the EQ-HWB-S: can we do it without value sets? A non-parametric item response theory analysis Qual. Life Res. (IF 3.5) Pub Date : 2024-02-21 You-Shan Feng, Thomas Kohlmann, Tessa Peasgood, Lidia Engel, Brendan Mulhern, A. Simon Pickard
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Trajectory of health-related quality of life in parents of children treated with epilepsy surgery versus medical therapy Qual. Life Res. (IF 3.5) Pub Date : 2024-02-21
Abstract Purpose Child health-related quality of life (HRQOL) has been shown to improve after epilepsy surgery and is linked to parent HRQOL. We postulated that the HRQOL of parents whose children underwent epilepsy surgery would improve over two years compared to those treated with medical therapy. The aim of the study was to evaluate the trajectory of HRQOL of parents whose children received treatment
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Multimorbidity patterns and health-related quality of life among community-dwelling older adults: evidence from a rural town in Suzhou, China Qual. Life Res. (IF 3.5) Pub Date : 2024-02-14 Heng Lu, Xing-Xuan Dong, Dan-Lin Li, Xin-Yi Nie, Pei Wang, Chen-Wei Pan
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Quality of life, cognitive and behavioural impairment in people with motor neuron disease: a systematic review Qual. Life Res. (IF 3.5) Pub Date : 2024-02-12 Ratko Radakovic, Chelsea Radakovic, Sharon Abrahams, Zachary Simmons, Amy Carroll
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Assessing health-related quality of life and clinical outcomes of patients with diabetes accessing healthcare in two public hospitals in south-eastern Ghana: a cross-sectional descriptive study Qual. Life Res. (IF 3.5) Pub Date : 2024-02-07
Abstract Background Diabetes is a significant contributor to kidney failure, heart attack, strokes, lower limb amputation, blindness, and other complications that negatively impact health-related quality of life (HRQOL). This study assessed the HRQOL and clinical outcomes of patients with diabetes accessing healthcare in south-eastern Ghana. Methods This was a hospital-based cross-sectional descriptive study
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Healthcare consumer acceptability of routine use of the EQ-5D-5L in clinical care: a cross-sectional survey Qual. Life Res. (IF 3.5) Pub Date : 2024-02-07 David A. Snowdon, Taya A. Collyer, Lucy Marsh, Velandai Srikanth, Richard Beare, Stephanie Baber, Kim Naude, Nadine E. Andrew
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Social support during re-entry period and long-term quality of life in breast cancer survivors: a 10-year longitudinal cohort study Qual. Life Res. (IF 3.5) Pub Date : 2024-02-06 Hyeonjin Cho, Danbee Kang, Dong Wook Shin, Nayeon Kim, Se Kyung Lee, Jeong Eon Lee, Seok Jin Nam, Juhee Cho
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Anchor-based minimal important difference values are often sensitive to the distribution of the change score Qual. Life Res. (IF 3.5) Pub Date : 2024-02-06 Werner Vach, Franziska Saxer
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Development of an ultra-short measure of eight domains of health-related quality of life for research and clinical care: the patient-reported outcomes measurement information system® PROMIS®-16 profile Qual. Life Res. (IF 3.5) Pub Date : 2024-02-06 Maria Orlando Edelen, Chengbo Zeng, Ron D. Hays, Anthony Rodriguez, Janel Hanmer, Judy Baumhauer, David Cella, Bryce B. Reeve, Patricia M. Herman
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Assessing the interchangeability of linked scores in multivariable statistical analyses Qual. Life Res. (IF 3.5) Pub Date : 2024-01-31 Maxwell Mansolf, Courtney K. Blackwell, David Cella, Jin-Shei Lai
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"not one size fits all” The challenges of measuring paediatric health-related quality of life and the potential role of digital ecological momentary assessment: a qualitative study Qual. Life Res. (IF 3.5) Pub Date : 2024-02-01
Abstract Purpose To explore the views of clinicians and researchers about the challenges of measuring health-related quality of life (HRQoL) in children (5–11 years) and to explore whether digital ecological momentary assessment (EMA) could enhance HRQoL measurement. Methods Semi-structured qualitative interviews with 18 professionals (10 academics/researchers, four clinicians, four with both professional
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Mapping the EORTC QLQ-C30 and QLQ H&N35 to the EQ-5D-5L and SF-6D for papillary thyroid carcinoma Qual. Life Res. (IF 3.5) Pub Date : 2024-02-01 Deyu Huang, Dingfen Zeng, Yuan Tang, Longlin Jiang, Qing Yang
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Surgical prioritization based on decision model outcomes is not sensitive to differences between the health-related quality of life values estimates of physicians and citizens Qual. Life Res. (IF 3.5) Pub Date : 2024-02-01 Anouk M. I. A. van Alphen, Eline M. Krijkamp, Benjamin Y. Gravesteijn, Robert J. Baatenburg de Jong, Jan J. Busschbach
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A leaky gut contributes to reduced sarcopenia-related quality of life (SarQoL) in geriatric older adults Qual. Life Res. (IF 3.5) Pub Date : 2024-02-01 Rizwan Qaisar, M. Shahid Iqbal, Asima Karim, Tahir Muhammad, Firdos Ahmad
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Response shift results of quantitative research using patient-reported outcome measures: a descriptive systematic review Qual. Life Res. (IF 3.5) Pub Date : 2024-02-01 Richard Sawatzky, Tolulope T. Sajobi, Lara Russell, Oluwagbohunmi A. Awosoga, Ayoola Ademola, Jan R. Böhnke, Oluwaseyi Lawal, Anita Brobbey, Lisa M. Lix, Amelie Anota, Véronique Sebille, Mirjam A. G. Sprangers, Mathilde G. E. Verdam
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Is well-becoming important for children and young people? Evidence from in-depth interviews with children and young people and their parents Qual. Life Res. (IF 3.5) Pub Date : 2024-01-31
Abstract Purpose This study explores how important well-becoming factors appear to be to children during childhood. We define well-becoming as the indicators which predict children and young people’s future wellbeing and opportunities. The priority for this work was to explore whether well-becoming might be an important factor to include in outcome measures for children and young people. The inclusion
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Predictors of persistence of post-chemotherapy symptoms among survivors of solid tumor cancers Qual. Life Res. (IF 3.5) Pub Date : 2024-01-30 Alla Sikorskii, Terry Badger, Chris Segrin, Tracy E. Crane, Nathan Cunicelli, Pavani Chalasani, Waqas Arslan, Charles Given
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Dynamic changes and lifetime effect of functional disability profiles for stroke patients: real-world evidence from South Korea Qual. Life Res. (IF 3.5) Pub Date : 2024-01-29 Soyeon Cheon, Chung-Yi Li, Jiann-Shing Jeng, Jung-Der Wang, Li-Jung Elizabeth Ku
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Life’s Essential 8 in relation to self-rated health and health-related quality of life in a large population-based sample: the SCAPIS project Qual. Life Res. (IF 3.5) Pub Date : 2024-01-25 Ángel Herraiz-Adillo, Viktor H. Ahlqvist, Bledar Daka, Josefin Wångdahl, Patrik Wennberg, Jakob Carlsson, Sara Higueras-Fresnillo, Cecilia Lenander, Carl Johan Östgren, Daniel Berglind, Karin Rådholm, Pontus Henriksson
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Administering selected subscales of patient-reported outcome questionnaires to reduce patient burden and increase relevance: a position statement on a modular approach Qual. Life Res. (IF 3.5) Pub Date : 2024-01-24
Abstract Patient-reported outcome (PRO) questionnaires considered in this paper contain multiple subscales, although not all subscales are equally relevant for administration in all target patient populations. A group of measurement experts, developers, license holders, and other scientific-, regulatory-, payer-, and patient-focused stakeholders participated in a panel to discuss the benefits and challenges
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Factors associated with improved health-related quality of life due to improvements in physical function and dialysis-related symptoms following intradialytic exercise in outpatients undergoing haemodialysis Qual. Life Res. (IF 3.5) Pub Date : 2024-01-23 Ren Takahashi, Hiroki Yabe, Hideaki Ishikawa, Takashi Hibino, Sayumi Morishita, Kenichi Kono, Yoshifumi Moriyama, Tetsuya Yamada
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Quantifying bias due to missing data in quality of life surveys of advanced-stage cancer patients Qual. Life Res. (IF 3.5) Pub Date : 2024-01-19 Nina Haug, Martina Jänicke, Benjamin Kasenda, Norbert Marschner, Melanie Frank
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The quality of life of frequently vs. infrequently screened HPV vaccinated women Qual. Life Res. (IF 3.5) Pub Date : 2024-01-18 Kaisa Taavela, Tiina Eriksson, Heini Huhtala, Anne Bly, Katja Harjula, Kaisa Heikkilä, Mari Hokkanen, Mervi Nummela, Laura Kotaniemi-Talonen, Matti Lehtinen, Karolina Louvanto
Purpose Cervical lesions caused by human papillomavirus (HPV) are related to decreased quality of life (QoL) of women. Also, cervical cancer (CC) screening can cause psychological adverse effects. It has been assumed that by decreasing the HPV-related disease burden, HPV vaccinations would increase the QoL. This study compares the effect of CC screening on QoL of HPV vaccinated women in two different
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Psychosocial predictors of quality of life among women living with HIV/AIDS: a cross-sectional study in a VCT centre in Shiraz, Iran Qual. Life Res. (IF 3.5) Pub Date : 2024-01-17 Zohre Foroozanfar, Dariush Hooshyar, Hassan Joulaei
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Development of standard computerised adaptive test (CAT) settings for the EORTC CAT Core Qual. Life Res. (IF 3.5) Pub Date : 2024-01-17 Morten Aa. Petersen, Hugo Vachon, Johannes M. Giesinger, Mogens Groenvold
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Examining the role of living alone and loneliness in predicting health-related quality of life: results from the Healthy Aging Longitudinal Study in Taiwan (HALST) Qual. Life Res. (IF 3.5) Pub Date : 2024-01-17 Han-Yun Tseng, Chun-Yi Lee, Chi-Shin Wu, I.-Chien Wu, Hsing-Yi Chang, Chih-Cheng Hsu, Chao Agnes Hsiung
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Baseline functioning scales of EORTC QLQ-C30 predict overall survival in patients with gastrointestinal cancer: a meta-analysis Qual. Life Res. (IF 3.5) Pub Date : 2024-01-16 Ye Zang, Yue Qiu, Yimeng Sun, Yu Fan
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The association between BMI and self-reported health among a Brazilian sample: a cross-sectional study Qual. Life Res. (IF 3.5) Pub Date : 2024-01-13 Luan Vinicius Bernardelli, Michael A. Kortt, Michael B. Charles
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Minimal clinically important difference in the World Health Organization Quality of Life Brief (WHOQOL-BREF) for adults with neurofibromatosis Qual. Life Res. (IF 3.5) Pub Date : 2024-01-12
Abstract Purpose This study aimed to estimate minimal clinically important difference (MCID) values for the World Health Organization Quality of Life Brief version (WHOQOL-BREF) among adults with neurofibromatosis (NF). An MCID is needed to demonstrate clinical meaningfulness of interventions for NF. Methods We estimated MCID for the WHOQOL-BREF: the quality of life (QoL) measure recommended by the
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COVID-19-related health utility values and changes in COVID-19 patients and the general population: a scoping review Qual. Life Res. (IF 3.5) Pub Date : 2024-01-11 Zhuxin Mao, Xiao Li, Mark Jit, Philippe Beutels
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Associations between the EQ-5D-5L and exacerbations of chronic obstructive pulmonary disease in the ETHOS trial Qual. Life Res. (IF 3.5) Pub Date : 2024-01-11
Abstract Purpose Exacerbations of chronic obstructive pulmonary disease (COPD) are associated with deteriorating health and health-related quality of life (HRQoL) among people with COPD during and after events. HRQoL data are key to evaluating treatment cost-effectiveness and informing reimbursement decisions in COPD. EuroQoL 5-dimension 5-level (EQ-5D-5L) utility scores, based on various HRQoL measures
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Measurement equivalence of the English and French versions of the self-efficacy to manage chronic disease scale: a Scleroderma Patient-Centered Intervention Network (SPIN) study Qual. Life Res. (IF 3.5) Pub Date : 2024-01-09
Abstract Purpose The Self-Efficacy to Manage Chronic Disease (SEMCD) scale is widely used, including in systemic sclerosis (SSc). The SEMCD has been validated in SSc, but the metric equivalence of the English and French versions has not been assessed (i.e., whether psychometric properties are equivalent across English and French). Methods Participants were adults from the Scleroderma Patient-Centered
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Individual differences in the long-term impact of the pandemic: moderators of COVID-related hardship, worry, and social support Qual. Life Res. (IF 3.5) Pub Date : 2024-01-06 Carolyn E. Schwartz, Katrina Borowiec, Yuelin Li, Bruce D. Rapkin
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Danish value sets for the EORTC QLU-C10D utility instrument Qual. Life Res. (IF 3.5) Pub Date : 2024-01-06 Jens Lehmann, Leslye Rojas-Concha, Morten Aagaard Petersen, Bernhard Holzner, Richard Norman, Madeleine T. King, Georg Kemmler
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Mapping IWQOL-Lite onto EQ-5D-5L and SF-6Dv2 among overweight and obese population in China Qual. Life Res. (IF 3.5) Pub Date : 2024-01-03 Weihua Guo, Shitong Xie, Dingyao Wang, Jing Wu
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Development of the PROMIS pediatric stigma and extension to the PROMIS pediatric stigma: skin item banks Qual. Life Res. (IF 3.5) Pub Date : 2024-01-03 Jin-Shei Lai, Cindy Nowinski, Stephanie M. Rangel, Shalini Thareja Batra, Kelly Mueller, Sarah Chamlin, Vitali Ustsinovich, David Cella, Maxwell Mansolf, Amy S. Paller
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Evaluation of clinical outcomes and employment status in veterans with dual diagnosis of traumatic brain injury and spinal cord injury Qual. Life Res. (IF 3.5) Pub Date : 2024-01-01 Jillian M. R. Clark, Erin D. Ozturk, Catherine Chanfreau-Coffinier, Victoria C. Merritt
Abstract Purpose To examine clinical outcomes and employment status in Veterans with and without a dual diagnosis of traumatic brain injury (TBI) and spinal cord injury (SCI). Methods This cross-sectional study examined a national sample of Veterans enrolled in the VA Million Veteran Program who completed the Comprehensive TBI Evaluation (CTBIE) as part of the Veterans Health Administration’s TBI Screening
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Relationship between intrinsic capacity and health-related quality of life among community-dwelling older adults: the moderating role of social support Qual. Life Res. (IF 3.5) Pub Date : 2024-01-01 Jiaqi Yu, Yaru Jin, Huaxin Si, Yanhui Bian, Qinqin Liu, Yanyan Li, Cuili Wang
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Health-related quality of life in Chinese SLE patients: evidence from 1568 SLE patients and 2610 healthy controls Qual. Life Res. (IF 3.5) Pub Date : 2024-01-01 Yu-Hua Wang, Hong-Yu Sun, Yu-Qi Liu, Xing-Yu Gong, Ying Xu, Qi-Qun Zong, Guang-Hui Yu, Wan-Qin Hu, Chun-Xia Zhai, Lin-Lin Wang, Zi-Ye Yan, Ting-Yu Zhang, Jing Cai, Mu Li, Yang-Fan Chen, Fang Wang, Yan-Feng Zou
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Long COVID quality of life and healthcare experiences in the UK: a mixed method online survey Qual. Life Res. (IF 3.5) Pub Date : 2024-01-01 Rebecca Owen, Ruth E. Ashton, Lindsay Skipper, Bethan E. Phillips, James Yates, Callum Thomas, Francesco Ferraro, Tom Bewick, Kate Haggan, Mark A. Faghy
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Chronic cough: more than just a persistent cough: a systematic literature review to understand the impact of chronic cough on quality of life Qual. Life Res. (IF 3.5) Pub Date : 2023-12-28 Vishal Bali, Ada Adriano, Aidan Byrne, Katherine G. Akers, Andrew Frederickson, Jonathan Schelfhout
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Racial and ethnic disparities in self-reported general and mental health status among colorectal cancer survivors: impact of sociodemographic factors and implications for mortality—a SEER-CAHPS study Qual. Life Res. (IF 3.5) Pub Date : 2023-12-28
Abstract Purpose Patient-reported outcomes are recognized as strong predictors of cancer prognosis. This study examines racial and ethnic differences in self-reported general health status (GHS) and mental health status (MHS) among patients with colorectal cancer (CRC). Methods A retrospective analysis of Medicare beneficiaries between 1998 and 2011 with non-distant CRC who underwent curative resection
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Estimating anchor-based minimal important change using longitudinal confirmatory factor analysis Qual. Life Res. (IF 3.5) Pub Date : 2023-12-27 Berend Terluin, Andrew Trigg, Piper Fromy, Wouter Schuller, Caroline B. Terwee, Jakob B. Bjorner
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Comparison of patient-reported outcomes measurement information system (PROMIS®)-29 and PROMIS global physical and mental health scores Qual. Life Res. (IF 3.5) Pub Date : 2023-12-27
Abstract Purpose The Patient-Reported Outcomes Measurement and Information System (PROMIS®): includes the PROMIS-29 physical and mental health summary and the PROMIS global physical and mental health scores. It is unknown how these scores coincide with one another. This study examines whether the scores yield similar or different information. Methods The PROMIS-29 and the PROMIS global health items
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Development of algorithms to estimate the EQ-5D-5L from the FACT-L in patients with lung cancer: a mapping study Qual. Life Res. (IF 3.5) Pub Date : 2023-12-26
Abstract Objective This study aimed to develop a mapping algorithm to evaluate the EQ-5D-5L according to the FACT-L when the EQ-5D-5L is not available. Methods EQ-5D-5L and FACT-L data were collected from patients with lung cancer in Departments of Thoracic Surgery, Medical Oncology, Radiation Oncology, Sichuan Cancer Hospital. We used the ordinary least squares model (OLS), Tobit model (Tobit), two-part
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Response shift in coronary artery disease Qual. Life Res. (IF 3.5) Pub Date : 2023-12-22 Oluwaseyi A. Lawal, Oluwagbohunmi A. Awosoga, Maria J. Santana, Olawale F. Ayilara, Meng Wang, Michelle M. Graham, Colleen M. Norris, Stephen B. Wilton, Matthew T. James, Tolulope T. Sajobi
Purpose Patients with coronary artery disease (CAD) experience significant angina symptoms and lifestyle changes. Revascularization procedures can result in better patient-reported outcomes (PROs) than optimal medical therapy (OMT) alone. This study evaluates the impact of response shift (RS) on changes in PROs of patients with CAD across treatment strategies. Methods Data were from patients with CAD
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Unsupervised item response theory models for assessing sample heterogeneity in patient-reported outcomes measures Qual. Life Res. (IF 3.5) Pub Date : 2023-12-21 Tolulope T. Sajobi, Ridwan A. Sanusi, Nancy E. Mayo, Richard Sawatzky, Lene Kongsgaard Nielsen, Veronique Sebille, Juxin Liu, Eric Bohm, Oluwagbohunmi Awosoga, Colleen M. Norris, Stephen B. Wilton, Matthew T. James, Lisa M. Lix