Quality Of Life Research[JOURNAL]
Sun
200 papers
Quality of life after tranexamic acid in subarachnoid hemorrhage: post-hoc analysis of the ULTRA trial.
Denneman N, Kamra T, Post R … +25 more , Tjerkstra MA, Germans MR, Vergouwen MDI, Jellema K, Koot RW, Kruyt ND, Wolfs JFC, Nanda D, Van Der Pol B, Roks G, Reichman LJA, Brouwers PJAM, Kwa VIH, Bienfait HP, Boogaarts HD, Klijn CJ, van den Berg R, Coert BA, Horn J, Majoie CBLM, Rinkel GJE, Roos YBWEM, Vandertop WP, Verbaan D, ULTRA trial study group
Qual Life Res · 2026 May · PMID 42070193 · Full text
PURPOSE: The ULTRA trial evaluated the impact of ultra-early and short-term tranexamic acid (TXA) treatment in patients with subarachnoid hemorrhage (SAH) and found no clinical benefit at six months. This post-hoc analys...
PURPOSE: The ULTRA trial evaluated the impact of ultra-early and short-term tranexamic acid (TXA) treatment in patients with subarachnoid hemorrhage (SAH) and found no clinical benefit at six months. This post-hoc analysis examines whether TXA improves quality of life (QoL) at three and six months. METHODS: The ULTRA trial was a randomized, controlled, multicenter study conducted from July 2013 to July 2019. Patients received either TXA or standard care. This analysis included patients who completed at least one QoL questionnaire. The primary endpoint was QoL, assessed using the EQ-5D-3L questionnaire at three and six months. Linear mixed models adjusted for confounders were used to analyze the association between TXA and QoL. RESULTS: Of the 955 ULTRA patients, approximately 25% died, and 63% completed at least one QoL questionnaire. At three months, the TXA group had a mean EQ-5D index score of 0.75 versus 0.71 in the control group (p = 0.11) and a mean EQ-5D Visual Analogue Scale (VAS) score of 89 versus 86 (p = 0.10). At six months, the mean EQ-5D index score was 0.84 in the TXA group compared to 0.82 in the control group (p = 0.23), and the mean VAS was 92 in the TXA group compared to 89 in the control group (p = 0.13). CONCLUSION: Ultra-early and short-term TXA did not result in a significant improvement in QoL at three or six months in patients with SAH. Given the lack of benefit on both clinical outcome and QoL, routine use of TXA is not recommended. TRIAL REGISTRATION: Netherlands Trial Register: NTR3272. CLINICALTRIALS: gov: NCT02684812.
Experiences and treatment perspectives of adolescents and young adults with achondroplasia and caregivers: a qualitative interview study.
Maher J, Fernandez GS, Robinson C … +4 more , Berger KI, Cutts K, Quaife M, Bascle S
Qual Life Res · 2026 May · PMID 42070190 · Full text
PURPOSE: People with achondroplasia (ACH) experience numerous symptoms and impacts on health-related quality of life (HRQoL) and have varying perspectives on treatment. This study characterized the experiences of adolesc...
PURPOSE: People with achondroplasia (ACH) experience numerous symptoms and impacts on health-related quality of life (HRQoL) and have varying perspectives on treatment. This study characterized the experiences of adolescents and young adults with ACH and caregivers to identify diagnoses, signs and symptoms, and HRQoL impacts associated with ACH and understand treatment perspectives, experiences, and expectations. METHODS: A qualitative interview study was conducted in the US and South Korea from February to June 2023. Participants were people with ACH aged 12–20 years and caregivers (aged ≥ 18 years) of people with ACH aged ≤ 20 years. Interviews explored signs, symptoms, impacts on HRQoL, and treatment perspectives. Interview transcripts were analyzed qualitatively, and key concepts were identified. RESULTS: In total, 30 participants were recruited (15 people with ACH; 15 caregivers). The most prevalent comorbid diagnoses were sleep apnea (n = 23, 77%), teeth misalignment (n = 20, 67%), obesity (n = 18, 60%), and ear infections (n = 17, 57%). The most common symptoms were pain and snoring (n = 25, 83% each). HRQoL impacts primarily involved physical functioning (n = 29, 97%), daily activities (n = 25, 83%), mobility/gait (n = 25, 83%), and social activities (n = 23, 77%). Increased height (n = 20, 67%) and reduced pain (n = 12, 40%) were the most frequently expected treatment benefits. Participants were generally satisfied with treatments but emphasized burdens such as frequent injections. No specific treatment side effects or risks were prominent. CONCLUSION: People with ACH and caregivers prioritized treatments that increased height and reduced pain and wished less burdensome modes of administration were available. Findings may help guide future research and treatment development.
Assessing content validity: challenges of conducting systematic reviews of patient-reported outcome measures and recommendations to improve the application of COSMIN guidance.
Chambers RL, Lahuerta-Martín S, Greco AM … +4 more , Pattinson R, Pickles T, Hassan J, Mokkink LB
Qual Life Res · 2026 May · PMID 42070188 · Full text
PURPOSE: Systematic reviews of Patient-Reported Outcome Measures (PROMs) are essential for selecting appropriate measures for research and clinical practice. The COnsensus-based Standards for the selection of health Meas...
PURPOSE: Systematic reviews of Patient-Reported Outcome Measures (PROMs) are essential for selecting appropriate measures for research and clinical practice. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines provide a standardised framework for evaluating measurement properties of PROMs, with content validity considered to be the most important property, yet the most complex and poorly reported. This study aimed to report common challenges researchers face when evaluating content validity in systematic reviews on the quality of PROMs, and to provide clear, experience-informed recommendations to overcome them. METHOD: A narrative synthesis of challenges in evaluating content validity in systematic reviews of PROMs is presented. Challenges were extracted from Elsman et al.’s umbrella review and from stakeholder consultations with the authors of this manuscript, providing practical recommendations and illustrative examples. RESULTS: Seven challenges were identified: (1) feasibility of conducting a systematic review on the quality of PROMs, (2) identifying all articles describing PROM development for the target population, (3) managing different versions of PROMs, (4) poor reporting in primary studies (5) ambiguity in classifying studies as PROM development or content validity studies, (6) applying the criteria for content validity, specifically, to the results of development studies, and (7) accurately framing the scope of the PROM and the review. Recommendations include narrowing the scope of the review, conducting supplementary searches, treating PROM versions distinctly, and guidance on how to interpret poorly reported studies. CONCLUSION: These insights support consistent application of COSMIN guidelines and improve PROM selection and use, complementing existing COSMIN materials.
Health-related quality of life measures in incarcerated populations: a scoping review.
Talaat H, Raymakers AJN, Bayoumi AM … +9 more , Papatheodorou S, Khawaja AA, Hanna C, Sethuram C, Candler E, Javeed I, Artyukh I, Homme P, Sediqzadah S
Qual Life Res · 2026 May · PMID 42070186 · Publisher ↗
PURPOSE: Incarcerated populations face greater health challenges, including higher rates of communicable and mental diseases. However, traditional health measures like disease prevalence and life expectancy do not captur...
PURPOSE: Incarcerated populations face greater health challenges, including higher rates of communicable and mental diseases. However, traditional health measures like disease prevalence and life expectancy do not capture their physical, mental, emotional, and social well-being. This scoping review will summarize the health-related quality of life (HRQoL) outcomes in incarcerated populations using preference-based HRQoL instruments (and measures that can be used to derive utility scores), providing insights for health policies and economic evaluations. METHODS: A scoping review was conducted following PRISMA-ScR guidelines. Six electronic databases and three health technology assessment agencies were searched for peer-reviewed studies reporting preference-based HRQoL or HRQoL scores that can be used to generate health state utility values in incarcerated populations. Eligibility and data extraction were performed by two independent researchers.Findings were synthesized to identify knowledge gaps. RESULTS: Twenty-two articles met the inclusion criteria, primarily focusing on male and white populations. Ten studies targeted disease-specific populations, with mental health disorders (n = 7) being the most prevalent. Across studies, inmates generally reported lower HRQoL scores than the general population, especially those with mental health issues. Female and Indigenous inmates had lower HRQoL scores than male and non-Indigenous inmates. CONCLUSION: The variety in HRQoL instruments used, with each assessing different domains, hinders direct comparisons between studies. Validating instruments specific to incarcerated populations may be needed for future research. Overall, incarcerated populations, especially women and Indigenous inmates, demonstrate poorer HRQoL than the general population. There is a need for more diverse, inclusive studies to address these gaps.
Performance of EQ5D-5L and AHPEQS for measuring outcomes and experiences of patients with peripherally inserted central catheters: a secondary analysis.
Larsen EN, Ullman AJ, Marsh N … +11 more , Royle R, Takashima M, August D, Comans Inglis P, Gavin N, Corley A, Scanlon B, Tapsall D, Chan RJ, Rickard CM, Byrnes J
Qual Life Res · 2026 May · PMID 42070183 · Full text
PURPOSE: Peripherally Inserted Central Catheter (PICC)-associated complications, such as infections and thrombosis, impact significantly upon patients’ experiences and outcomes of care. The purpose of this study was to a...
PURPOSE: Peripherally Inserted Central Catheter (PICC)-associated complications, such as infections and thrombosis, impact significantly upon patients’ experiences and outcomes of care. The purpose of this study was to assess the utility of a patient-reported outcome measure (EuroQol Five Dimension Five Level (EQ5D-5L)), and patient-reported experience measure (Australian Hospital Patient Experience Question Set (AHPEQS)), to discriminate incidence of PICC failure among adults. METHODS: A secondary analysis was undertaken of two large randomised controlled trials, conducted in two adult tertiary hospitals in Queensland, Australia. The EQ5D-5L and AHPEQS instruments were assessed against incidence of three clinical outcomes likely to impact upon self-reported outcomes and experiences: Central Line Associated Bloodstream Infection (CLABSI), venous thrombosis, and all-cause PICC complication. Partial proportional odds, multinomial logistic, linear regression and generalised linear regression models were used to assess instrument performance. RESULTS: Overall, 984 participants provided baseline EQ5D-5L responses. Subsequently, n=628 completed an EQ5D-5L at study end; n=552 further completed the AHPEQS. EQ5D-5L demonstrated poor discrimination of individual complications (CLABSI, thrombosis), however, there was a significant association (p=<0.05) between all-cause PICC complication and: utility (− 0.1, Confidence Interval (CI) − 0.1 to − 0.1); disutility (0.4, CI 0.2–0.7); and self-reported health (– 4.3, CI − 7.8 to − 0.9). AHPEQS demonstrated poor discrimination; one item (‘both physical and emotional harm’) was significantly associated with all-cause PICC complication (1.0, 95%CI 0.1–1.9); CLABSI (2.4, 95%CI 0.7–4.2); and thrombosis (2.0, 95%CI 0.7–3.4). CONCLUSION: EQ5D-5L demonstrated moderate suitability for use among patients with PICCs; AHPEQS demonstrated little reliability.
Factors associated with health state valuations: a secondary analysis of an EQ-5D-3L valuation study from Jordan.
Al Rabayah A, Al Sayah F, Arvandi M … +1 more , Siebert U
Qual Life Res · 2026 May · PMID 42070182 · Full text
PURPOSE: Elicitation of EQ-5D value sets using time trade-off (TTO) is based on the general population’s degree of preference for specific health states. This study aimed to identify factors associated with health state...
PURPOSE: Elicitation of EQ-5D value sets using time trade-off (TTO) is based on the general population’s degree of preference for specific health states. This study aimed to identify factors associated with health state valuations among the Jordanian population, conducted as part of the EQ-5D-3L valuation study. METHODS: A cross-sectional study using EQ-5D-3L valuation data from Jordanian participants was used to identify factors associated with health state valuation. The valuation study followed the latest EuroQol Group valuation protocol (EQ-VT v2.1). Participants aged ≥ 18 years were interviewed via videoconferencing. Sociodemographic, geographic regions, and health indicators data were collected. We applied a quota sampling based on region, gender, and age. Univariate and multivariable (multilevel mixed effects model, Tobit random, and random intercept) regression models were applied to identify associations. Statistical analysis was conducted using STATA version 17. RESULTS: From September 2021 to April 2022, 301 participants were included in the study, covering all Jordanian governorates from the north, middle, and south. A representative sample was achieved. 51% of the participants were females with a mean age of 41 (± 15 (SD)) years. Overall, 69% were married, 50% of the respondents had a higher education degree, and 77% were insured. The mean EQ VAS score was 81(± 14). The multilevel mixed effects model was the best-fit model. Unemployment status and having more than one comorbidity were identified as statistically significant factors associated with cTTO health state valuation in Jordan. CONCLUSION: Socioeconomic characteristics have limited ability to explain how Jordanians value cTTO health states. Future research should explore cultural dimensions and personality traits to understand health state valuations better.
Dual trajectories of patient-reported fatigue and sleep disturbance in lung cancer survivors.
Huang J, Zhang Y, Dai Y … +6 more , Huang B, He R, Luo J, Zeng Y, Liu F, Shi Q
Qual Life Res · 2026 May · PMID 42070181 · Publisher ↗
PURPOSE: The aim of this study was to quantify the interrelationship between fatigue and sleep disturbance among lung cancer survivors attending traditional Chinese medicine (TCM) rehabilitation clinics. METHODS: Symptom...
PURPOSE: The aim of this study was to quantify the interrelationship between fatigue and sleep disturbance among lung cancer survivors attending traditional Chinese medicine (TCM) rehabilitation clinics. METHODS: Symptom burden was assessed through MD Anderson Symptom Inventory-TCM across four time points within two months following the initial visit. A Mixed-effect model was applied to analyze the factors influencing fatigue. The group-based dual trajectory model (GBDTM) was employed to identify the symptom trajectories of fatigue and sleep disturbance and further quantify their interrelationship. Logistic regression models were used to determine the factors associated with different trajectories. RESULTS: 239 lung cancer survivors were included in this study with sleep disturbance and fatigue reported as the most severe symptoms. The severity of sleep disturbance was positively correlated with that of fatigue. Three distinct trajectories for fatigue have been identified: Low (27%), moderate (55%), and high (18%). Patients with low level sleep disturbance were most likely to be members in the low-to-moderate fatigue group (96.5%), while patients with high level sleep disturbance were most likely to be members in the moderate-to-high fatigue group (93.7%). Notably, patients experiencing high level sleep disturbance had a nearly tenfold increase in the probability of experiencing high level fatigue. Patients with higher BMI (≥ 24) were less likely to be in the high fatigue group, while those with higher ECOG-PS (≥ 1) were more likely to belong to this group. CONCLUSION: High level sleep disturbance exacerbated fatigue among lung cancer survivors. BMI and ECOG-PS score had predictive value in fatigue severity.
Development of the novel nontuberculous mycobacterial pulmonary disease symptoms scale (NTM-SS).
Henkle E, Dieckmann NF, Franklin H … +7 more , Cella D, Megson G, Daley CL, Flume PA, McShane PJ, Winthrop KL, Quittner AL
Qual Life Res · 2026 May · PMID 42070174 · Publisher ↗
AIMS: Nontuberculous mycobacterial pulmonary disease (NTM-PD) is a chronic infection often necessitating long-term, multidrug treatment. Here we report the development of a novel disease-specific patient-reported outcome...
AIMS: Nontuberculous mycobacterial pulmonary disease (NTM-PD) is a chronic infection often necessitating long-term, multidrug treatment. Here we report the development of a novel disease-specific patient-reported outcome measure (PROM) for use as a clinical trial endpoint. METHODS: We performed a literature review and conducted semi-structured interviews with adult subjects with NTM-PD recruited from four U.S. clinical sites. Interviews were recorded, transcribed, and consensus coded. NTM Symptom Scale (NTM-SS) items were selected and tested in cognitive interviews. We refined the NTM-SS using theoretical relevance/face validity, exploratory factor analysis (factorial validity), item response theory (IRT) and traditional reliability estimation, and convergent validity testing. RESULTS: The concept elicitation interviews identified key symptoms of cough (100%), shortness of breath (98%), fatigue (95%), sputum production (90%), throat clearing (80%), mental fogging (75%), sensitivity to cold (62%), night sweats (55%), poor appetite (53%), chills/feverishness (50%/43%), weight loss (48%), and chest congestion (45%). Within the conceptual framework of Respiratory Symptoms, Fatigue, and other NTM Symptoms, we selected an initial set of 44 items, editing 4 items after cognitive testing. Psychometric testing resulted in 7 subscales (final: 32 items). Scale reliabilities ranged from 0.85 to 0.95. Test–retest reliability was high (r = 0.73–0.88), and subscales showed strong convergent validity with existing measures (r = 0.64–0.87). CONCLUSION: We identified a 32-item disease-specific PROM with a highly reliable set of 7 subscales. Separately scored NTM-SS subscales allow for selection of appropriate clinical trial endpoints. Further validation, including responsiveness to change, is needed.
Responsiveness and clinical utility of patient-reported outcome instruments in head and neck cancer: a systematic review.
Hernandez-Torres C, Sanchez-Gomez S, Molina-Fernandez E … +3 more , Palacios-Garcia J, Vazquez-Becerra E, Vilches-Arenas A
Qual Life Res · 2026 May · PMID 42070173 · Publisher ↗
PURPOSE: To synthesize and evaluate current evidence on the responsiveness, interpretability (MID/MIC), and clinical utility of validated health-related quality of life (HRQoL) patient-reported outcome (PRO) instruments...
PURPOSE: To synthesize and evaluate current evidence on the responsiveness, interpretability (MID/MIC), and clinical utility of validated health-related quality of life (HRQoL) patient-reported outcome (PRO) instruments used in adults with head and neck cancer (HNC). METHODS: A systematic search of PubMed, Scopus, Web of Science, Embase, and Cochrane Library (Central) identified studies published from January 2015 to July 2025. The review was registered in PROSPERO (CRD420251128978) and followed PRISMA 2020 guidelines. Observational and interventional studies assessing HRQoL using validated HNC instruments (EORTC QLQ-C30, QLQ-H&N35/H&N43, UW-QOL, FACT-H&N or MDADI) were included. Eligible studies reported responsiveness (ability to detect meaningful change) or clinical applicability. Methodological quality was evaluated using the COSMIN Risk of Bias checklist, and results were narratively synthesized due to methodological heterogeneity. RESULTS: Thirteen studies involving 8,075 patients met the inclusion criteria. The EORTC QLQ-C30 and H&N35/43, UW-QOL, FACT-H&N, and MDADI exhibited consistent responsiveness, capturing expected HRQoL deterioration during treatment and partial recovery within 6-12 months. Reported minimal important difference (MID) and minimal important change (MIC) values typically ranged from 4 to 15 points for improvement and 10-20 points for deterioration, supporting the interpretability of change scores. Several patient-reported outcome measures (PROMs) also demonstrated prognostic relevance, with early HRQoL changes associated with survival or recurrence. CONCLUSION: Validated HRQoL questionnaires in HNC demonstrate robust responsiveness and meaningful clinical applicability, supporting their integration into routine oncology practice. Their use may enhance early detection of complications, guide rehabilitative interventions, and facilitate more individualized, patient-centered care.
Potential of ASCOT-Carer for evaluating the quality of life of family caregivers for patients with Alzheimer's disease in Japan.
Noto S, Yamato K, Onuki K … +1 more , Kondo T
Qual Life Res · 2026 May · PMID 42070171 · Full text
PURPOSE: We explored the suitability of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer) against the widely used EQ-5D for evaluating the quality of life (QoL) of Japanese caregivers of patients with Alzhe...
PURPOSE: We explored the suitability of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer) against the widely used EQ-5D for evaluating the quality of life (QoL) of Japanese caregivers of patients with Alzheimer’s disease. This research aimed to expand the available preference-based measures for assessing caregiver QoL in health economic evaluations in Japan. METHODS: This was a cross-sectional survey using a web-based questionnaire. The alignment between the ASCOT-Carer and established measures, as well as its construct alignment, were evaluated. These were respectively investigated through Pearson’s correlation analysis with the EQ-5D-5L and factor analysis using the EQ-5D-5L and the eight-item short Japanese version of the Zarit Burden Interview (J_ZBI-8). RESULTS: In total, 705 live-in family caregivers of patients with Alzheimer’s disease completed the main survey. The absolute correlation coefficients were between J_ZBI-8 and EQ-5D-5L scores, + 0.268; between J_ZBI-8 and ASCOT-Carer scores, + 0.472; and between EQ-5D-5L and ASCOT-Carer scores, + 0.463. Factor analysis revealed that the only factors showing moderate/stronger correlations with factors constituted by J_ZBI-8 were those derived from ASCOT-Carer (inter-factor correlation: +0.31 and + 0.50). The ASCOT-Carer was a more important variable relative to the EQ-5D-5L for measuring caregivers’ QoL related to caregiver burden. CONCLUSION: The ASCOT-Carer may be a more suitable tool for evaluating the impact of caregiving burden on caregivers’ QoL. When incorporating QoL based on caregiver burden in health economic evaluations, the ASCOT-Carer may be an appropriate option.
Integrating real-time patient-reported outcomes in colorectal cancer care: development and evaluation of a concise clinical scorecard.
Kanata D, Chen LY, Foglia A … +13 more , Bober S, Lee C, Abbass MA, Karagkounis G, Widmar M, Wei IH, Smith JJ, Nash GM, Weiser MR, Paty PB, Vickers AJ, Garcia-Aguilar J, Pappou E
Qual Life Res · 2026 May · PMID 42070168 · Publisher ↗
PURPOSE: Patient-reported outcomes (PROs), initially developed for research, are increasingly recognized as valuable in clinical practice to monitor health status, quality of life, and symptoms from the patient perspecti...
PURPOSE: Patient-reported outcomes (PROs), initially developed for research, are increasingly recognized as valuable in clinical practice to monitor health status, quality of life, and symptoms from the patient perspective. However, few practical, clinician-friendly PRO tools exist for routine oncology care. We aimed to develop a brief electronic “Colorectal Scorecard” grounded in validated PROM content and evaluate its implementation in a high-volume colorectal surgery practice. METHODS: A multidisciplinary team co-designed a reduced-item electronic PRO questionnaire covering seven key quality-of-life domains plus a patient-designated priority concern, presented as a one-page color-coded report integrated into the electronic health record (EHR). Included PROM content was drawn from validated instruments (e.g., LARS, CIS, IIEF-5/FSFI domains, ICIQ-UI SF items, EQ-5D-5L/EQ-VAS, EORTC QLQ-CIPN20 items, and a FACT-C work-ability item), with wording simplification guided by patient input. The Scorecard rollout included staff training, patient portal distribution with automated reminders, and in-clinic tablet options. We tracked survey completion rates, drop-off rates, completion times, setting of completion (home portal vs. in-clinic tablet when available), and clinician access/printing when loggable from 2019–2024. Provider and patient feedback were collected through structured informal feedback channels to guide iterative refinements. We compared these data to the prior colorectal PRO report system used from 2013–2019. RESULTS: From 2019 to 2024, approximately 13,400 colorectal patients completed > 19,000 Scorecard surveys as part of routine care. Overall PRO completion more than doubled (from ~ 33% pre-implementation to > 70% post-implementation), with a median survey completion time of 4 min (IQR ~ 3–6) and < 4% in-clinic drop-off. Clinician uptake varied by provider; early adoption was supported by a surgeon “champion” and recurring staff reinforcement. Patient “priority concern” responses changed significantly before vs. after surgery. Preoperatively, patients most commonly prioritized treatment planning (38%) and cancer status (29%), whereas postoperatively priorities more often included cancer status (19%), bowel function (18%), and recovery (17%). Postoperative priorities differed by cancer type: rectal cancer patients were nearly twice as likely as colon cancer patients to prioritize bowel function (21.8% vs. 11.8%) and more frequently selected urinary or sexual function, whereas colon cancer patients more often prioritized cancer status and results/surveillance concerns. CONCLUSION: Incorporating electronic PROs into a busy colorectal surgery clinic was feasible and sustained over five years. The Colorectal Scorecard’s concise format and real-time reporting supported more focused, patient-centered discussions during appointments. Because we evaluated feasibility and implementation process outcomes rather than downstream clinical outcomes, conclusions regarding patient health impact should be reserved for future studies. Ongoing efforts—such as refining the user interface, clearly defining team responsibilities for acting on PROM results, and continuous staff training—are recommended to maintain high clinician uptake.
Trajectories of health-related quality of life in youth with chronic physical illness and their siblings.
Basque D, Patte KA, Leatherdale ST … +1 more , Ferro MA
Qual Life Res · 2026 May · PMID 42070167 · Publisher ↗
BACKGROUND: Youth with chronic physical illnesses (YwCPI) generally report lower health-related quality of life (HRQL) compared to healthy peers. Despite the pervasive effects of CPI within families, research on siblings...
BACKGROUND: Youth with chronic physical illnesses (YwCPI) generally report lower health-related quality of life (HRQL) compared to healthy peers. Despite the pervasive effects of CPI within families, research on siblings is limited. This study modelled 48-month trajectories of change in HRQL in YwCPI and siblings and identified predictors of these trajectories. METHODS: Data come from the MY LIFE study, comprising 171 YwCPI, and their age-matched siblings. HRQL was assessed at five time points over 48 months using the KIDSCREEN-27, which includes five subscales: physical, psychological, autonomy, peers and school. Latent class growth analysis modelled trajectories of change separately for YwCPI and siblings, and multinomial regression models identified predictors of trajectory group membership. RESULTS: YwCPI generally reported lower HRQL than siblings across physical, psychological, autonomy, peers, and school. Most youth had stable trajectories with changes occurring primarily between baseline and 12 months. Significant predictors of trajectory group membership included baseline HRQL, parent stress, age, and household income. CONCLUSION: A greater proportion of siblings, compared to YwCPI, had improving trajectories of change in HRQL, likely reflecting adaptation within the family system. Early changes suggest a window for intervention, supporting the importance of timely support. Shared family environment, caregiving responsibilities, and parental stress could influence HRQL trajectories, underscoring the need for family-centered care. These findings highlight that while many youth have stable HRQL, targeted support is crucial for those with persistently low, or declining outcomes.
Qualitative study of patient-reported outcome data collection among clinicians in dermatology at a single academic center.
Fischer A, Hojjatie R, Murdock A … +3 more , Swerlick RA, Li Y, Yeung H
Qual Life Res · 2026 May · PMID 42070166 · Publisher ↗
PURPOSE: Patient-reported outcomes (PROs) help dermatologists better understand patient perspectives to facilitate shared medical decision-making. Despite merit-based incentive payment system (MIPS) measure to collect qu...
PURPOSE: Patient-reported outcomes (PROs) help dermatologists better understand patient perspectives to facilitate shared medical decision-making. Despite merit-based incentive payment system (MIPS) measure to collect quality of life assessments at least once every 12 months for patients with chronic skin diseases, routine PRO collection remains uncommon in clinical practice. This semi-structured interview study aimed to elicit key preferences, facilitators, and barriers for routine PRO collection in dermatology practices. METHODS: Clinicians were recruited from Emory Dermatology, which has implemented routine PRO collection. Verbatim transcripts were coded and analyzed deductively using the Theoretical Domains Framework to generate salient themes. We interviewed nine dermatologists and one advanced practice provider (APP). RESULTS: Professional roles of all interviewed clinicians aligned with PRO collection. Memory, attention, and decision-making requirements for PRO collection by clinicians were minimized via institutional automation in the electronic health record (EHR). Skills in navigating EHR were needed to retrieve PRO data. Environmental factors affecting PRO collection included patient portal access, IT support for EHR integration, institutional interest in PROs, limited clinician oversight on PRO collection by other staff members, and high patient volume in dermatology clinics. Social support between staff could allow workflow division and maximized opportunities for PRO collection, while clinician perceived patient survey fatigue and skepticism on PRO utility affected PRO collection. This study was limited to clinician perspectives in a single clinic. CONCLUSION: Automating PRO collection and utilization in EHR, demonstrating PRO value, establishing institutional support, and streamlining workflow are needed to broadly implement routine PRO data collection.
Physical activity levels and HINT-8 health-related quality of life in Korean adults with diabetes: analysis of KNHANES 2019-2021.
Jeong SH, Choi YJ, Shin G … +1 more , Leigh JH
Qual Life Res · 2026 May · PMID 42070165 · Full text
PURPOSE: Physical activity is a core component of diabetes management. However, evidence linking physical activity levels to health-related quality of life (HR-QOL) in adults with diabetes remains limited, particularly w...
PURPOSE: Physical activity is a core component of diabetes management. However, evidence linking physical activity levels to health-related quality of life (HR-QOL) in adults with diabetes remains limited, particularly when measured using the Health-related Quality of Life Instrument with 8 Items (HINT-8). This study examined the association between physical activity level and HR-QOL and explore subgroup patterns among Korean adults with diabetes. METHODS: We analyzed nationally representative data from the 8th Korea National Health and Nutrition Examination Survey (2019–2021). Adults with diabetes were identified using fasting plasma glucose, glycated hemoglobin, or prior diagnosis/medication use. HR-QOL was assessed using HINT-8, a preference-based instrument developed to reflect the health preferences of the general Korean population. Physical activity levels were classified as low, moderate, or high using the Global Physical Activity Questionnaire. Associations were examined using survey-weighted linear regression. RESULTS: Among 1,590 adults with diabetes, 59.3% reported low physical activity. Compared with the low-activity group, high physical activity was significantly associated with higher HINT-8 scores (β = 0.024; 95% CI 0.008–0.039). Although the moderate activity group showed a positive trend (β = 0.010; 95% CI − 0.004 to 0.023), it did not reach statistical significance. CONCLUSION: High physical activity levels may be associated with better perceived health status among Korean adults with diabetes, highlighting the importance of supporting adults with diabetes to achieve higher overall physical activity levels.
Differential patterns of health-related quality of life among low- and high-income cancer survivors in South Korea: a latent class analysis.
Lee H, Lee BG
Qual Life Res · 2026 May · PMID 42070164 · Publisher ↗
PURPOSE: This study aimed to identify subgroups of health-related quality of life (HRQoL) and examine predictors of latent class membership among low- and high-income cancer survivors using latent class analysis (LCA). M...
PURPOSE: This study aimed to identify subgroups of health-related quality of life (HRQoL) and examine predictors of latent class membership among low- and high-income cancer survivors using latent class analysis (LCA). METHODS: We analyzed data from the Korea National Health and Nutrition Examination Survey (2013-2020), including 1075 cancer survivors. HRQoL patterns were identified using LCA based on the EuroQol five-dimension questionnaire. Analyses were conducted separately for low- and high-income groups to examine income-stratified HRQoL patterns. Sociodemographic characteristics and chronic disease status were included as covariates in the latent class models to examine predictors of class membership within each income group. RESULTS: Income-stratified LCAs suggested differential HRQoL patterns. Three latent HRQoL classes were identified in the low-income group: Good HRQoL, Pain and Mobility Impairment, and Poor HRQoL. In the high-income group, two classes were identified: Good HRQoL and Pain and Mobility Impairment. While education was a common predictor in both groups, other predictors varied by income level. In the low-income group, older age, unemployment, and multimorbidity were significantly associated with impaired HRQoL classes, whereas female sex predicted membership in the Pain and Mobility Impairment class in the high-income group. CONCLUSION: These findings highlight differences in HRQoL patterns and associated factors across income-stratified groups of cancer survivors, underscoring the limitations of relying solely on average HRQoL scores in survivorship care. Survivorship strategies should be tailored to the differential HRQoL patterns and associated predictors identified within each income group, thereby promoting more targeted and equitable care for cancer survivors.
A direct comparison of the measurement properties of the PROMIS-16 and EQ-5D-5L in the U.S. general population.
Pham M, Craig BM, Peasgood T … +1 more , Rencz F
Qual Life Res · 2026 May · PMID 42070162 · Full text
OBJECTIVES: Introduced in 2024, the PROMIS®-16 is a health-related quality of life (HRQoL) instrument that measures eight dimensions: physical function, ability to participate in social roles and activities, anxiety, dep...
OBJECTIVES: Introduced in 2024, the PROMIS®-16 is a health-related quality of life (HRQoL) instrument that measures eight dimensions: physical function, ability to participate in social roles and activities, anxiety, depression, sleep disturbance, pain interference, cognitive function, and fatigue. Given the potential overlap in dimensions, this study compares the measurement and psychometric properties of the PROMIS-16 and EQ-5D-5L. METHODS: In 2024, an online cross-sectional survey was conducted with a nationally representative sample of U.S. adults aged 18 years or older (N = 2577), including the EQ-5D-5L and PROMIS-16 as stand-alone instruments. We compared the measurement properties of the PROMIS-16 and the EQ-5D-5L, namely ceiling and floor percentages, informativity (Shannon’s indices), and convergent/divergent validity. Furthermore, we conducted an exploratory factor analysis to identify their combined structure. RESULTS: Within construct-overlapping items, the PROMIS-16 items exhibited greater dispersion, including lower ceiling percentages and higher informativity, compared to their EQ-5D-5L counterparts. Good convergent validity between PROMIS-16 and EQ-5D-5L items was observed for physical functioning (mobility; r = 0.85) and anxiety/depression (r = 0.76–0.79). EFA captured six distinct constructs: Physical Function, Social Roles & Activities, Anxiety / Depression, Pain Interference, Cognitive Function, and Sleep / Fatigue. Possibly due to reverse coding, the two Cognitive Function items of PROMIS-16 showed inconsistent performance, with weak correlations and limited alignment with other constructs. CONCLUSIONS: The PROMIS-16 items demonstrated greater conceptual coverage and informativity than the EQ-5D-5L, but issues with inconsistent framing and potential response biases remained. On the other hand, the EQ-5D-5L demonstrated stronger concordance with respondents’ global health assessments compared to the PROMIS-16.
The validation of the CarerQol instrument and factors associated with quality of life among informal caregivers of disabled older adults in China.
Jin S, Chao J, Zhang C … +5 more , Bai W, Xu Y, Tan G, Pan T, Bailey C
Qual Life Res · 2026 May · PMID 42070159 · Publisher ↗
BACKGROUND: This study aimed to validate the CarerQol instrument in informal caregivers of disabled older adults in China and to identify potentially modifiable predictors that may improve caregivers’ quality-of-life. ME...
BACKGROUND: This study aimed to validate the CarerQol instrument in informal caregivers of disabled older adults in China and to identify potentially modifiable predictors that may improve caregivers’ quality-of-life. METHODS: Data were from a cross-sectional survey involving 469 dyads of disabled older adults and their informal caregivers. The CarerQol was used to measure caregivers’ quality-of-life, generating utility-scores (0–100) using Dutch and UK-tariffs, level-sum-scores (LSS, 3–21) and CarerQol-VAS scores (0–10), which reflect caregivers’ overall happiness. Validation was assessed using distributional characteristics, known-groups comparisons by t-tests and one-way ANOVAs (Cohen’s d and Eta-squared for effect-size), and convergent validity (Spearman correlations). Univariate and multivariate regression models were used to identify predictors of caregivers’ care-related quality-of-life. RESULTS: Most caregivers were female (64.0%) with a mean age of 66.3 years. Mean CarerQol-utility-scores were 66.07 (UK-tariff) and 64.7 (Dutch-tariff), mean CarerQol-LSS was 13.15, and mean CarerQol-VAS was 6.3/10. The CarerQol instrument scores differed significantly in the hypothesized directions across caregiver-related-, care recipient-related-, and caregiving-situation factors. Among the four correlations hypothesized to be moderate, three were supported. In multivariate regression results, better financial status was positively associated with CarerQol scores, whereas higher caregiving burden, low willingness, and depressive symptoms to provide care were negatively associated. CONCLUSIONS: The CarerQol instrument appears suitable for measuring quality-of-life of caregivers of disabled older adults in China. Policies implications are for improving financial support and service provision, while also enhancing caregivers’ competence and positive care experiences through care guidance programs.
Patient experience data in regulatory and health technology assessment.
Roydhouse J, Chen WH, McLeod L … +1 more , Lapin B
Qual Life Res · 2026 Apr · PMID 41961396 · Publisher ↗
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Barriers and facilitators for implementing patient-reported outcome measures in oncology practices: an umbrella review.
Rammant E, Ramsey I, M de Ligt K … +11 more , Mazariego C, Pogoda K, Schmidt H, Beernaert K, Lidington E, Javan RC, Koczwara B, Sztankay M, van de Poll-Franse L, Van Hemelrijck M, EORTC quality of life group
Qual Life Res · 2026 Apr · PMID 41961151 · Full text
BACKGROUND: Patient-reported outcome measures (PROMs) are increasingly valued for enhancing patient-centered care and clinical decision-making in oncology. However, routine use remains limited due to implementation chall...
BACKGROUND: Patient-reported outcome measures (PROMs) are increasingly valued for enhancing patient-centered care and clinical decision-making in oncology. However, routine use remains limited due to implementation challenges. This umbrella review synthesized evidence on barriers and facilitators to PROMs implementation in oncology care using the Consolidated Framework for Implementation Research (CFIR). METHODS: Following PRISMA guidelines (PROSPERO CRD42024539970), we included systematic and scoping reviews published in English up to 25/11/2025 examining PROMs implementation in cancer care. Searches were conducted in MEDLINE, Embase, Cochrane CENTRAL, CINAHL, and Web of Science. Two reviewers independently screened studies, extracted data, and conducted qualitative content analysis, categorizing findings within CFIR domains. Review quality was appraised with AMSTAR 2. RESULTS: Eighteen reviews (2004–2024) were included. Most barriers and facilitators (n = 34) were mapped to Innovation Characteristics (i.e. features related to the intervention). Key barriers included limited perceived clinical value of PROMs and increased patient burden. Inner Setting (i.e. the context within which the implementation occurs) challenges included poor integration with electronic health records and workflow disruptions, while facilitators encompassed alignment with clinical guidelines and staff training. At the Individual level (i.e. attributes related to individuals involved), limited provider knowledge and low patient e-health literacy were noted. CONCLUSION: Successful PROMs implementation requires raising awareness of their clinical value, seamless integration with health records, workflow optimization, and adequate staff training. Patient support should target e-health literacy and equitable access to digital tools. The overall low quality of existing reviews underscores the need for more rigorous evidence on implementation in oncology.
Correction: Identifying key outcome domains with underlying specific patient-reported outcomes for psychomotor therapy in mental health care in the Netherlands: a multi-phased qualitative study.
de Haan A, Moeijes J, Scheffers M … +1 more , van der Wees P
Qual Life Res · 2026 Apr · PMID 41961146 · Full text
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