Quality Of Life Research[JOURNAL]
Sun
200 papers
Using confirmatory factor analysis to identify symptom clusters in individuals with acquired disabilities.
Tulsky DS, Boulton AJ, Kisala PA … +6 more , Tyner CE, Pohlig R, Chiaravalloti ND, Slotkin J, Taylor HB, Sherer M
Qual Life Res · 2026 Apr · PMID 41920266 · Full text
PURPOSE: Acquired disabilities, such as spinal cord injury, traumatic brain injury, limb loss (or other major limb injury/illness), or stroke, are typically accompanied by an array of physical and emotional symptoms and...
PURPOSE: Acquired disabilities, such as spinal cord injury, traumatic brain injury, limb loss (or other major limb injury/illness), or stroke, are typically accompanied by an array of physical and emotional symptoms and social challenges that interfere with recovery and affect quality of life (QOL). Despite advances in personalized medicine, interrelationships between symptoms remain unclear, and clinicians often treat individual symptoms in isolation. The objective of this study was to identify clusters of symptoms that occur across sudden-onset disability populations, with a long-term goal of identifying targets for clinical intervention. METHODS: Participants were 755 adults who sustained a spinal cord injury, traumatic brain injury, stroke, or sudden-onset limb-threatening injury/illness. Participants completed a battery of physical, emotional, and social patient reported outcomes measures and performance-based cognitive tests at baseline and after 14–18 months. Confirmatory factor analysis (CFA) of 26 indicator variables was used to reduce dimensions and identify clusters of symptoms. RESULTS: CFA results provide support for 10 factors: Cognition, Economic QOL, Negative Affect, Positive Affect, Psychological Adjustment, Physical Function, Independence, Sleep Impairment/Fatigue, Pain, and Social Health. Global model fit was acceptable: χ2 (255) = 875.0, RMSEA = 0.059, CFI = 0.948. The three emotional health clusters were highly correlated. The 10 factors demonstrated stability over time. CONCLUSION: These results can inform the development of composite scores and/or symptom indices to identify and compare broad areas of functioning and provide a method to detect specific areas of clinical concern. This improved understanding of symptom interrelationships may facilitate individualized care based on specific patient characteristics and, ultimately, lead to improved clinical outcomes for individuals with acquired disabilities.
Internal validation methods to detect patient characteristics associated with differential item functioning in patient-reported outcome measures.
Bodawatte Gedara M, Jiang D, Kim S … +3 more , Sanusi R, Sajobi T, Lix LM
Qual Life Res · 2026 Apr · PMID 41920240 · Publisher ↗
PURPOSE: Differential item functioning (DIF) detection methods are one tool to assess validity of patient-reported outcome measures (PROMs). Given the growing interest in machine-learning models for the analysis of PROMs...
PURPOSE: Differential item functioning (DIF) detection methods are one tool to assess validity of patient-reported outcome measures (PROMs). Given the growing interest in machine-learning models for the analysis of PROMs data, including for DIF detection, internal cross-validation (CV) is recommended to assess model performance. We compared two CV methods for DIF models in simulated and real-world data. METHODS: Two common CV methods, k-fold and holdout CV, were compared for a machine-learning recursive partitioning model to detect DIF. Simulation parameters included sample size, number of items and covariates associated with DIF, and DIF effect size. Simulation performance was assessed using true positive rate (TPR; power) and false positive rate (FPR; Type I error) for items, covariates, and all item-covariate combinations. DIF performance was also assessed in real-world Hospital Anxiety and Depression Scale (HADS) item responses using area under the receiver operating characteristic (AUROC) curve. RESULTS: In simulations, TPRs for consistently identifying items and covariates associated with DIF increased as DIF effect size, sample size, and number of items increased for both CV methods. The 10-fold CV method had the highest TPR in many conditions reaching nearly 100% at the item-covariate level while the 50% holdout CV method had the lowest FPR. For HADS items, DIF detection varied between CV methods, with AUROC ranging from 0.74 to 0.80. CONCLUSION: The choice of a CV method for a machine-learning model to detect DIF affected consistency of DIF item detection. The 10-fold CV method was advantageous for balancing systematic error and data stability.
A systematic review of the relationship between race and health-related quality of life outcomes in patients with advanced heart failure who undergo heart transplantation or mechanical circulatory support.
Dixon-Evans J, Briley A, Way JS … +5 more , Clay S, Mazurek K, Wafford QE, Vela AM, Grady KL
Qual Life Res · 2026 Apr · PMID 41920216 · Full text
PURPOSE: Health inequalities may disproportionately affect health-related quality of life (HRQOL) in patients with heart failure who identify as a racial or ethnic minority and undergo advanced surgical therapies. Object...
PURPOSE: Health inequalities may disproportionately affect health-related quality of life (HRQOL) in patients with heart failure who identify as a racial or ethnic minority and undergo advanced surgical therapies. Objectives of this systematic review were to determine the impact of race on HRQOL of adults who undergo heart transplantation (HT) or durable mechanical circulatory support (MCS), while awaiting HT or long-term, and whether race is a risk factor for worse HRQOL. METHODS: A synthesis framework was used following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 guidelines. Medical Subject Headings was applied to search engines. Peer reviewed articles (English) published prior to 1/5/25, examining associations between race & HRQOL of adults who underwent HT and/or MCS, were included. Excluded were systematic reviews, editorials/opinions, case series/reports, grey literature, qualitative research, and case-control studies. Risk of bias was assessed using Joanna Briggs Institute checklists and the Cochrane Risk-of-Bias tool. RESULTS: Among 2,902 identified records, eight studies met inclusion criteria (HT: n = 4; MCS: n = 3; and HT and MCS: n = 1). Participants' mean age = 57 years; the majority were White (80%) and male (78%). Risk of bias varied by study. Race did not impact HRQOL in 50% of HT studies. HRQOL improved with MCS in all studies; however, compared to White patients, Black patients experienced less improvement in HRQOL. CONCLUSIONS: HRQOL measures were not comparable. Thus, a meta-analysis was not performed which is a study limitation. Racial differences in HRQOL may exist among adults who undergo HT and/or MCS; more research is needed.
Correction: Health-related quality of life in patients receiving medicinal cannabis: systematic review and meta-analysis of primary research findings 2015-2025.
Tait MA, Acret L, Costa DSJ … +3 more , Campbell R, White K, Rutherford C
Qual Life Res · 2026 Mar · PMID 41880070 · Full text
Abstract loading — click title to view on PubMed.
Estimating the minimal clinically important difference for the Myasthenia Gravis Quality of Life revised scale (MG-QOL15R).
Ben ÂJ, Brackx F, Phillips G … +4 more , Barnett-Tapia C, Qi C, Rencz F, Dewilde S
Qual Life Res · 2026 Mar · PMID 41824170 · Full text
PURPOSE: To estimate the minimal clinically important difference (MCID) for the MG-QOL15R. METHODS: Data from two multi-country myasthenia gravis studies were used: the ADAPT RCT (n = 157) and the MyRealWorld-MG (MRW-MG)...
PURPOSE: To estimate the minimal clinically important difference (MCID) for the MG-QOL15R. METHODS: Data from two multi-country myasthenia gravis studies were used: the ADAPT RCT (n = 157) and the MyRealWorld-MG (MRW-MG) survey (n = 92). MCIDs were estimated using four anchor-based methods: change difference (CD), receiver operating characteristic (ROC) curve with Area Under the Curve (AUC), linear regression, and equipercentile linking. MG-Activities of Daily Living (MG-ADL) was the anchor. MCIDs were applied to the ADAPT RCT to assess the impact of different thresholds. Odds ratios (ORs) and 95% confidence intervals (CIs) were calculated to estimate the odds of achieving an MCID threshold at week 4 in the efgartigimod arm compared with placebo among patients positive for acetylcholine receptor antibodies. RESULTS: Baseline mean age was 46.7 years old in ADAPT and 49.8 years old in MRW-MG; women comprised 71.3% and 71.7%, respectively. ADAPT included only generalized MG, while MRW-MG included 12.0% ocular and 88.0% generalized MG. Average disease severity (MG-ADL 9.0 vs. 6.3) and HRQoL impairment (MG-QOL15R 16.3 vs. 12.0) were greater in ADAPT. MCID estimates were: CD (ADAPT 1.6; MRW-MG 2.8), ROC (both 2.5, AUCs 0.66; 0.71), linear regression (2.1; 1.6), and equipercentile linking (2.0; 3.0). Applying MCIDs of ≥ 2.0 and ≥ 3.0 resulted in ORs of 3.31 (95%CI 1.65–6.87) and 4.14 (95%CI 2.11–8.38). CONCLUSIONS: MCID estimates ranged between 1.6 and 3.0 across both studies. MCID thresholds of 2- and 3-points may indicate a minimal clinically meaningful change for monitoring progress and guiding treatment. Future research should use patient global impression of change anchors to improve interpretability and clinical relevance of MCID estimates.
Muscle quality beyond muscle mass: implications for health-related quality of life in breast cancer survivors.
Altundag O, Altundag K
Qual Life Res · 2026 Mar · PMID 41824166 · Publisher ↗
Abstract loading — click title to view on PubMed.
The adult social care outcomes toolkit easy read for older people (ASCOT-ER OP): an exploratory factor analysis and Rasch validation study.
Rand S, Caiels J, Mikelyte R … +1 more , Towers AM
Qual Life Res · 2026 Mar · PMID 41824160 · Full text
PURPOSE: ASCOT easy read for older people (ASCOT-ER OP) is an adaptation of the Adult Social Care Outcomes Toolkit (ASCOT-SCT4) that was co-produced with older adults and their families to improve accessibility and feasi...
PURPOSE: ASCOT easy read for older people (ASCOT-ER OP) is an adaptation of the Adult Social Care Outcomes Toolkit (ASCOT-SCT4) that was co-produced with older adults and their families to improve accessibility and feasibility of completion. This study aimed to examine the structural validity of ASCOT-ER OP using exploratory factor analysis (EFA) and Rasch analysis. METHODS: Data were collected by British Red Cross (BRC) as part of short-term support for adults living at home, post-crisis or hospital discharge (‘Support at Home’). ASCOT-ER OP was collected at initial assessment (baseline) and at the end of support (follow-up), typically no longer than 12 weeks later. Only follow-up data were analysed in this study. EFA was conducted to assess structural validity against the single factor structure of ASCOT-SCT4. Overall fit to the Rasch model was examined alongside assessment of unidimensionality, local independence, item fit, response threshold ordering and differential item functioning (DIF) by age group (18–64 and 65 + years). RESULTS: ASCOT-ER OP had a single factor structure in EFA. There was good fit to the Rasch model without significant breach of assumptions. Item fit was satisfactory. There was no evidence of disordered thresholds, but suboptimal distinguishability between response categories at some thresholds. These aligned to instances of < 10 ratings per category and/or were consistent with the properties of the ASCOT-SCT4. There was evidence of DIF by age group for two items: Personal Safety and Home comfort and cleanliness. CONCLUSIONS: EFA and Rasch support the structural validity of ASCOT-ER OP as a unidimensional measure.
Selecting the optimal MIC for five patient-reported outcome measures in patients with upper extremity injuries, using a systematic search and step-by-step decision tree.
van Bruggen SGJS, Opperman FLF, Jansma EPI … +3 more , Lameijer CMC, Bloemers FWF, Terwee CBC
Qual Life Res · 2026 Mar · PMID 41824158 · Full text
PURPOSE: To illustrate how optimal MIC values can be selected for PROMs using a systematic step-by-step approach. METHODS: A systematic search was performed in PubMed, Embase and Cochrane, until June 2024 to identify all...
PURPOSE: To illustrate how optimal MIC values can be selected for PROMs using a systematic step-by-step approach. METHODS: A systematic search was performed in PubMed, Embase and Cochrane, until June 2024 to identify all studies that estimated the MIC for the following PROMs in patients with upper extremity injuries: DASH, Q-DASH, MHQ, PRWE and PROMIS-UE. Credibility of the MIC values was examined using the MIC credibility instrument. The optimal MIC value was selected using a published systematic step-by-step approach, taking the credibility of the MIC studies, the correlation of the PROM change score with the anchor, the consistency of MIC values, and contextual factors (e.g. type of intervention) into account. RESULTS: Eleven studies were included. Eight studies scored high on the core credibility items, but all studies scored low on the additional criteria, regarding the appropriateness of the time interval and the correlation between the anchor and (change in) PROM scores. The most credible estimates per PROM were not consistent and there were not enough estimates per PROM to study contextual factors. The following optimal MIC values (among ranges of MIC values found) were selected: DASH 9.4 (6.7–13.0), Q-DASH 7.4 (3.5–11.7), PRWE 11.5 (9.2–56.0), and PROMIS-UE v1.2 4.7 (4.6–4.8). No studies were found on the MIC of the MHQ in Upper Extremity Injury (UEI) patients. CONCLUSION: This study serves as an example of how optimal MIC values can be carefully selected for a given PROM if multiple MIC values are reported in the literature.
Additional interventions for enhancing the quality-of-life of older adults using hearing aids: a systematic review and narrative synthesis.
Kang M, Han Y, Kim H
Qual Life Res · 2026 Mar · PMID 41824154 · Full text
PURPOSE: Hearing loss in older adults substantially affects quality of life. Although hearing aids improve hearing, their effects vary. Combining hearing aids with additional interventions may offer added benefits, yet i...
PURPOSE: Hearing loss in older adults substantially affects quality of life. Although hearing aids improve hearing, their effects vary. Combining hearing aids with additional interventions may offer added benefits, yet it remains unclear which quality-of-life domains benefit most. This systematic review examined the effects of hearing aids plus supplementary interventions, compared with hearing aids alone, on quality-of-life outcomes. METHODS: Randomized controlled trials (1996–2024) were identified from seven databases. Eligible studies included adults aged ≥ 65 years and compared hearing aids combined with additional interventions with hearing aids alone. Outcomes were categorized into physical, psychological, and older-adult-specific domains using the WHOQOL-100 and WHOQOL-OLD frameworks. Risk of bias was assessed using RoB 2, and certainty of evidence using GRADE. A narrative synthesis was conducted. RESULTS: Twelve randomized controlled trials involving 892 participants were included. Additional interventions comprised individual at-home training, group-based auditory rehabilitation, empowerment strategy, and telehealth. Individual at-home training showed partial benefits in sensory abilities, self-efficacy, and autonomy. Group-based auditory rehabilitation enhanced communication strategies and positive emotional outcomes in some studies. Empowerment strategy showed favorable psychological effects, while telephone-based telehealth interventions demonstrated limited impact on quality of life. CONCLUSIONS: Combining hearing aids with additional interventions may improve psychological and autonomy-related aspects of quality of life in older adults. However, heterogeneity in intervention content and outcome measurement limits firm conclusions. Future studies should use adequately powered randomized controlled trials, standardized outcome measures, and longer follow-up, and WHOQOL guided evaluation to support more comprehensive and comparable evidence. REGISTRATION: No. 605082.
Mapping the neglected topic in head and neck paraganglioma research: a PRISMA scoping review on quality of life.
Samlal DPS, Hristova M, Albrecht A … +4 more , Schipper J, Jansen TTG, Delsing CPA, Kunst HPM
Qual Life Res · 2026 Mar · PMID 41824145 · Full text
PURPOSE: Paragangliomas in the head and neck (HNPGL) are rare slow growing neuro-endocrine tumors. The impact of various treatment strategies and tumor characteristics on health-related quality of life (HRQoL) remains un...
PURPOSE: Paragangliomas in the head and neck (HNPGL) are rare slow growing neuro-endocrine tumors. The impact of various treatment strategies and tumor characteristics on health-related quality of life (HRQoL) remains unclear. This scoping review aims to map the available evidence and summarize the findings on how HNPGL affects patients’ HRQoL. METHODS: A comprehensive literature search was conducted in PubMed, Embase, and Cochrane. Articles were included when presenting a quantification of HRQoL or Patient Reported Outcome Measures in patients with HNPGL (n ≥ 5). Studies focusing exclusively on paragangliomas outside the head and neck region were excluded. A scoping review using descriptive and inductive thematic analysis was performed and presented using the Prisma-ScR guidelines. RESULTS: Fourteen studies were included presenting quantifiable HRQoL data in patients with HNPGL. The most used HRQoL measure were the Short Form-36 (n = 4, 29%) and EORTC Core Quality of Life questionnaire (QLQ-C30) (n = 3, 21%), followed by Short Form-12 (n = 2, 14%). HNPGL negatively affects HRQoL across several domains, even in patients not requiring an intervention. Specific subgroups, including those with carotid body tumors, multiple tumors, or dysphonia, reported disproportionately lower HRQoL. CONCLUSION: Current sparse evidence on HRQoL in patients with HNPGL demonstrates significant impairment and identified various factors influencing this outcome. However, further research is necessary to specifically assess the effect of different therapeutic managements on HRQoL.
Qualitative insights from patient/caregivers, and clinicians on routine use of the EQ-5D-Y-5L in clinical paediatric care-results from a pilot feasibility and acceptability trial.
Jones R, Holmes K, Devlin N … +2 more , Dalziel K, Hiscock H
Qual Life Res · 2026 Mar · PMID 41824142 · Full text
AIM: To qualitatively understand the experiences of patient/caregivers, and clinicians of piloting a generic Paediatric Patient Reported Outcome Measure (P-PROM), the EQ-5D-Y-5L, in Routine Outpatient Care for Kids (ROCK...
AIM: To qualitatively understand the experiences of patient/caregivers, and clinicians of piloting a generic Paediatric Patient Reported Outcome Measure (P-PROM), the EQ-5D-Y-5L, in Routine Outpatient Care for Kids (ROCK), known as the P-PROM ROCK Program. METHODS: Semi-structured interviews and focus groups were conducted online and in-person between April-June 2024. Participants were eligible if they received (patient/caregiver) or delivered (clinician) the P-PROM ROCK Program in the pilot feasibility and acceptability randomised clinical trial. Interviews were audio recorded and transcribed. Detailed notes were generated for focus groups. Transcripts and notes were coded and summarised into themes using thematic analysis. RESULTS: Nine interviews (n = 9 patient/caregivers) and two focus groups (n = 7 clinicians) were conducted. Participants shared that the simplicity and ease of the co-designed P-PROM ROCK Program (including EQ-5D-Y-5L, personalised PROMpt, patient and clinician resources, and integration with systems) was critical to completion and use of EQ-5D-Y-5L in clinical care. When P-PROM results were discussed in appointments, participants shared how this improved communication, resulted in more holistic care, and provided parents with new perspectives on their child's health. P-PROM results were not always discussed, and participants suggested reminder systems to minimise this. Additionally, short appointments and highly specialised clinical scope were barriers to holistic care. Finally, participants found the intervention too brief and wanted longer to better understand its benefits and limitations. CONCLUSION: The simplicity and ease of P-PROM programs are essential to their uptake and impact in clinical care. The P-PROM ROCK Program requires further refinements and piloting to truly understand its impact. TRIAL REGISTRATION: ISRCTN16030620, https://www.isrctn.com/ISRCTN16030620 .
Correction: Evaluating the psychometric properties of patient-reported outcome measurements for urolithiasis: a COSMIN-based systematic review.
Wang X, Wang T, Zhou Y … +6 more , Liu X, Han L, Yang Y, Xue J, Fu L, Gao S
Qual Life Res · 2026 Mar · PMID 41824134 · Publisher ↗
Abstract loading — click title to view on PubMed.
Impact of body weight on quality of life trajectories following metabolic bariatric surgery in individuals with obesity: a longitudinal study.
Wu SF, Wang RH, Soong TC … +3 more , Su YH, Wung SF, Lin PC
Qual Life Res · 2026 Mar · PMID 41824132 · Publisher ↗
BACKGROUND: Patients with obesity who undergo metabolic bariatric surgery (MBS) may experience changes in health-related quality of life (HRQoL) at various time points. This study aimed to explore HRQoL trajectories duri...
BACKGROUND: Patients with obesity who undergo metabolic bariatric surgery (MBS) may experience changes in health-related quality of life (HRQoL) at various time points. This study aimed to explore HRQoL trajectories during the first year post-surgery and identify associated factors in the early postoperative period. METHODS: A prospective, observational cohort study was conducted with 350 patients with severe (Class III) obesity, recruited through convenience sampling from two hospitals in southern Taiwan. HRQoL was assessed at 1 week, 1 month, 3 months, 6 months, and 12 months postoperatively via face-to-face interviews using the Impact of Weight on Quality of Life-Lite (IWQOL-Lite) questionnaire. Latent class growth analysis (LCGA) was employed to classify HRQoL trajectories, while multinomial logistic regression identified factors associated with each trajectory group. RESULTS: A total of 205 participants completed all five follow-up assessments. The mean overall HRQoL scores ranged from 55.8 (SD = 20.8) to 83.1 (SD = 16.3) throughout the study period. Three trajectory classes emerged: low starting (13.6%), medium starting (57.6%), and high starting (28.8%). Significant predictors of the low starting trajectory included older age, female, single marital status, college education or higher, body weight one week post-surgery, and the percentage of total weight loss (%TWL) one week after surgery. CONCLUSIONS: Patients’ HRQoL generally improved gradually over the first year after surgery. Special attention should be given to the IWQOL-Lite scores of female patients, those with a college education or higher, older individuals, and those who had higher weight and depression scores one week after surgery.
Post-COVID-19 physical and mental quality of life: a latent profile analysis and predictive factors.
Viola M, Testa S, Sacerdote C … +3 more , Kogevinas M, Pagano E, Rosato R
Qual Life Res · 2026 Mar · PMID 41824013 · Full text
PURPOSE: The long-term effects of SARS-CoV-2 infection are increasingly recognized, with heterogeneous physical and psychological symptoms that may persist for months, significantly affecting Health Related Quality of Li...
PURPOSE: The long-term effects of SARS-CoV-2 infection are increasingly recognized, with heterogeneous physical and psychological symptoms that may persist for months, significantly affecting Health Related Quality of Life (HRQoL), functional capacity, and psychosocial well-being. This study explores distinct profiles of HRQoL and psychological symptoms in former COVID-19 inpatients and assesses the impact of clinical variables at admission on long-term outcomes. METHODS: Patients hospitalised for COVID-19 at Molinette Hospital in Turin were contacted several months post-discharge (between June 2022 and June 2023) to complete a questionnaire assessing long-term HRQoL, sleep quality, depression, anxiety, stress, and fatigue. Clinical data at the time of hospitalisation were also available for each participant. A Latent Profile Analysis (LPA) was conducted on these physical and psychological variables, followed by multinomial logistic regression to examine how selected indicators of baseline COVID-19 severity and patient characteristics predicted profile membership. RESULTS: The sample consisted of 601 patients. LPA identified three health-related profiles: Fit-Vital (n = 289), Frail-Weak (n = 229), and Shattered-Broken (n = 83). Neither ICU admission nor pneumonia showed significant associations with more severe physical and psychological conditions. Key predictors of membership in the more severe profiles included the presence of comorbidities and altered clinical parameters reflecting overall physical status. Female gender was identified as a risk factor for poorer outcomes. CONCLUSION: This study highlights a wide spectrum of post-COVID-19 conditions, ranging from good to severely compromised physical and mental health. Female gender, presence of comorbidities, and elevated early warning scores at hospital admission are risk factors for worse outcomes, emphasizing the need for comprehensive long-term care.
Cancer-specific or generic preference-based measures in oncology? A validity comparison across six commonly diagnosed cancers.
Cao Y, Alina S, Li Z … +5 more , Li H, Shi J, Li R, Huang W, Yu H
Qual Life Res · 2026 Mar · PMID 41795780 · Publisher ↗
OBJECTIVES: This study aimed to evaluate the validity of both generic and cancer-specific preference-based measures (PBMs) in patients undergoing cancer treatment, providing solid evidence for the optimal selection and i...
OBJECTIVES: This study aimed to evaluate the validity of both generic and cancer-specific preference-based measures (PBMs) in patients undergoing cancer treatment, providing solid evidence for the optimal selection and implementation of these PBMs in oncology clinical practice settings. METHODS: A cross-sectional survey was conducted among patients diagnosed with one of the six most common cancers in China, recruited from hospitals in Harbin, China, between August 2022 and December 2023. Participants completed two generic PBMs (EQ-5D-5L and SF-6Dv2) and two cancer-specific PBMs (Quality of Life Utility-Core 10 Dimension [QLU-C10D] and Functional Assessment of Cancer Therapy Eight Dimension [FACT-8D]). Convergent validity was assessed using pairwise polychoric correlations between the four measures. Known-groups validity was evaluated by examining the measures’ ability to discriminate between patients based on cancer stage, with effect sizes (ES) calculated. Agreement between the utility scores of the four measures was assessed using intraclass correlation coefficients (ICC). RESULTS: A total of 827 cancer patients completed the survey, including 270 with lung cancer, 96 with stomach cancer, 88 with liver cancer, 71 with oesophageal cancer, 142 with colorectal cancer, and 160 with breast cancer. The proportions in full health were 25.8%, 13.7%, 7.3%, and 2.4% for EQ-5D-5L, SF-6Dv2, QLU-C10D, and FACT-8D, respectively. Convergent validity analysis revealed that the symptom dimensions of cancer-specific PBMs had lower correlations with generic PBMs compared to their functional dimensions. Known-groups validity showed QLU-C10D was most effective in distinguishing cancer stages (highest ES across subgroups), whereas EQ-5D-5L performed poorest (ES = 0.33); SF-6Dv2 was most sensitive to ECOG differences (ES = 1.37), with all instruments robust for ECOG stratification. Agreement results indicated that the agreement between generic PBMs and cancer-specific PBMs was the lowest, compared to the agreement within each category. CONCLUSIONS: Cancer-specific PBMs captured stage- and symptom-related burden more comprehensively, whereas generic PBMs were more informative for functional status and cross-cancer comparability. These findings underline the importance of balancing cancer-specific and generic PBMs through purpose- and site-specific combinations to optimize utility assessment and support decision-making in oncology.
The semantic differential questionnaire format warrants consideration for use in healthcare settings.
Pons A, Sneddon K, Whalley G … +3 more , Jenkinson C, Morley D, Coffey S
Qual Life Res · 2026 Mar · PMID 41795727 · Full text
BACKGROUND: Semantic differential scales, in which respondents rate their relative agreement between two opposing statements, are rarely used in assessment of health related quality of life (QOL). Here we present a use-c...
BACKGROUND: Semantic differential scales, in which respondents rate their relative agreement between two opposing statements, are rarely used in assessment of health related quality of life (QOL). Here we present a use-case study describing our experiences constructing such a scale, part of a larger project to generate a questionnaire, the VALVQ, to measure QOL in heart valve disease (HVD). METHODS AND RESULTS: Individuals with HVD were identified from echocardiographic databases. Initial questionnaire content was generated from semi-structured interviews with 34 individuals with HVD as well as three family members and five clinical experts. Four methods were used to generate semantic differential items. Firstly, two participants could give opposing points, allowing an item to be generated directly. Secondly, a participant could report a single experience at one extreme, with the research team generating the opposing statement. Thirdly, a participant could report an experience in the middle of two extremes, with two opposing statement generated by the research team. Finally, subtly different items were generated where an obvious corresponding item was not clear, allowing for future psychometric testing to examine item robustness. 64 semantic differential items were generated for pilot testing. 46 valid completed questionnaires were returned. Multiple items required changes due to phrasing of the item content, but no difficulties were reported with the semantic differential format. CONCLUSION: The semantic differential scale can be considered for health related QOL research. Further head-to-head comparisons with the more common Likert format will allow assessment of differences in respondent biases between these questionnaire formats.
Understanding decision-making strategies in discrete choice experiment tasks when valuing health states that include duration, a cognitive interview study with Australian adults.
Peasgood T, Carlton J, Norman R … +2 more , Rowen D, Jonker M
Qual Life Res · 2026 Mar · PMID 41779236 · Full text
OBJECTIVES: This study examined how participants engage with Discrete Choice Experiments (DCE) with duration tasks for valuing health states, including time preferences, and consideration of interactions between health a...
OBJECTIVES: This study examined how participants engage with Discrete Choice Experiments (DCE) with duration tasks for valuing health states, including time preferences, and consideration of interactions between health and duration attributes. It also examined how task layout, colour, and language, particularly how dying is described, influenced decision-making. METHODS: Twenty-one adults undertook online cognitive interviews while completing DCE tasks. Tasks involved health and duration attributes, with varying durations (weeks to 20 years) and split triplet designs in which respondents first choose between health states with the same duration and then between one of those health states and either full health for a shorter duration or immediate death. Data were analysed using Framework Analysis with iterative coding and a final thematic framework. RESULTS: Participants showed willingness to trade life-years for better health, evidence of Maximum Endurable Time, and high value placed on final weeks for closure and goodbyes. Some participants interacted health attributes with duration where duration differed, while others did not. No additional clear evidence of discounting future time emerged. Some participants had emotive reactions to specific phrasing, underscoring the impact of inconsistent wording between choices. Overlapping domains, particularly combined with the use of colour, made tasks easier but sometimes led to ignored domains when duration varied. Participants struggled with hypothetical scenarios and unfamiliar health attributes. CONCLUSIONS: Considering the complexity of decision-making and the influence of framing, presentation and language can inform design and modelling choices for DCE with duration studies.
Effects of nonpharmacological interventions on post-stroke quality of life: a systematic review, meta-analysis, and meta-regression.
Park HY, Yeom I
Qual Life Res · 2026 Mar · PMID 41779231 · Publisher ↗
PURPOSE: Stroke remains a leading cause of long-term disability, with survivors experiencing a substantial decline in their health-related quality of life (HRQoL). Although nonpharmacological interventions (NPIs) are kno...
PURPOSE: Stroke remains a leading cause of long-term disability, with survivors experiencing a substantial decline in their health-related quality of life (HRQoL). Although nonpharmacological interventions (NPIs) are known to improve HRQoL, which modalities are most effective and which design characteristics maximize HRQoL outcomes remains unclear. This compared the effects of different NPI types and identified key design determinants, particularly intervention duration, using meta-regression. METHODS: PubMed, Embase, the Cochrane Library, and CINAHL were searched for relevant randomized controlled trials (RCTs) published in English between January 2000 and July 2025. We conducted a systematic review and meta-analysis of RCTs involving adult stroke survivors testing education/self-management, exercise/physical training, or psychological/emotional interventions, with HRQoL measured using validated instruments. Meta-regression analyses examined the influence of intervention type and duration on HRQoL improvement. Study selection, data extraction, and quality assessment (risk of bias 2.0) were performed independently by two reviewers. RESULTS: Thirty-two RCTs were analyzed. NPIs significantly improved HRQoL compared to that in controls. Psychological/emotional interventions showed the greatest effect compared to education/self-management and exercise. Meta-regression identified intervention duration as a critical determinant of effectiveness, with programs lasting ≥ 12 weeks yielding significantly greater HRQoL improvements than shorter interventions. CONCLUSIONS: Beyond confirming the overall benefits of NPIs, this study demonstrates that both intervention modality and duration are key design determinants of HRQoL improvement after stroke. These findings provide evidence-based guidance on how nonpharmacological rehabilitation programs should be structured—highlighting the importance of psychosocial components and sustained intervention duration—to maximize quality-of-life outcomes in stroke survivors. REGISTRATION: The protocol for this review was prospectively registered with the Open Science Framework on October 3, 2025 ( https://doi.org/10.17605/OSF.IO/Q8VUD ).
Engagement is more than a checkbox: a patient's perspective.
de Oliveira Campos H
Qual Life Res · 2026 Mar · PMID 41779064 · Publisher ↗
Quality of Life Research recently introduced an author statement inviting researchers to describe how their studies engaged people with lived experience. This commentary responds to that statement from the perspective of...
Quality of Life Research recently introduced an author statement inviting researchers to describe how their studies engaged people with lived experience. This commentary responds to that statement from the perspective of a patient advocate and long-standing research partner. While the statement represents a hopeful development, asking about engagement at manuscript submission risks reducing partnership to a retrospective checkbox. Drawing on experiences ranging from transformative to tokenistic, this piece argues that meaningful engagement requires intention from the start, a willingness to share power, and governance structures that give patient partners real influence over research decisions. Using Jay Katz’s concept of “inevitable conflict” as a framework, the commentary explores what patients uniquely contribute and offers concrete recommendations for researchers seeking to move beyond symbolic participation. Engagement that does not redistribute power is not partnership.
The impact of testing positive versus negative for COVID-19 on health-related quality of life: cross-sectional evidence from the Alberta post-COVID-19 follow-up survey.
Kirwin E, Adibnia E, Wiggins M … +9 more , Sander B, Xie F, Ohinmaa A, Johnson JA, Norris C, Rafferty E, MacDonald SE, Round J, Canadian Immunization Research Network
Qual Life Res · 2026 Mar · PMID 41764705 · Full text
PURPOSE: The novel Coronavirus Disease 2019 (COVID-19) can have lasting physical and psychological outcomes, though little is known about the long-term impact of COVID-19 on the health-related quality of life (HRQoL) of...
PURPOSE: The novel Coronavirus Disease 2019 (COVID-19) can have lasting physical and psychological outcomes, though little is known about the long-term impact of COVID-19 on the health-related quality of life (HRQoL) of Canadians. The aim of this study is to estimate the impacts of testing positive for COVID-19 using the EQ-5D-5 L instrument. METHODS: Our study is a secondary analysis of data collected in the Alberta POST-COVID-19 Follow-up Study, linking survey responses to administrative health data. The data included 11,705 individuals tested for COVID-19 in Alberta from October 2021 to September 2023. Survey data included test results, age, sex, and EQ-5D-5 L response. Linked administrative data included socioeconomic status, comorbidities, hospital, and intensive care unit admissions. We used linear regression to estimate differences in HRQoL pre- and post-COVID-19 testing and ordinal logistic regression to estimate the odds of worsening HRQoL in each of the EQ-5D domains. RESULTS: COVID-19-positive individuals were younger (mean 48.5 vs. 53.4 years), more often female (64.4% vs. 62.6%), and tested more recently (mean 274 vs. 519 days since test) compared to COVID-19-negative respondents. We estimated reductions in EQ-5D-5 L index score ranging from 0.0464 (CI 0.0393-0.0536) to 0.0702 (CI 0.0626-0.0777) points for respondents testing positive, and up to 0.0276 (CI 0.0190-0.0362) points for respondents testing negative. Positive respondents were also more likely to report problems within each of the EQ-5D-5 L domains. CONCLUSION: Previous COVID-19 infection has an important impact on HRQoL. These results can support health economic models and provide insight into optimal COVID-19 mitigation strategies.
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