Quality Of Life Research[JOURNAL]
Sun
200 papers
The status of health-related quality of life among older adults with overactive bladder: a cross-sectional analysis of the Yamagata Cohort Study in Japan.
Tsuchiya N, Yagi M, Nishida H … +9 more , Naito S, Yamagishi A, Narisawa T, Fukuhara H, Takai Y, Suenaga S, Ito S, Konta T, Nagase S
Qual Life Res · 2026 Jun · PMID 42260041 · Publisher ↗
PURPOSE: Overactive bladder (OAB) is prevalent among older adults and may substantially affect health-related quality of life (HRQoL). This study aimed to describe HRQoL status among community-dwelling older adults with...
PURPOSE: Overactive bladder (OAB) is prevalent among older adults and may substantially affect health-related quality of life (HRQoL). This study aimed to describe HRQoL status among community-dwelling older adults with OAB and examine the relationship between OAB symptom severity and HRQoL. METHODS: A cross-sectional analysis was conducted using data from 12,212 participants aged ≥ 65 years in the Yamagata Cohort Study (2021-2022). Multiple imputation was used to handle missing data. OAB was assessed using the OABSS (total score ≥ 3 and urgency score ≥ 2), and HRQoL was measured using the EQ-5D-5L utility score and EQ VAS. Multiple regression analyses were performed, adjusting for age, sex, BMI, and comorbidities. RESULTS: Participants with OAB (n = 2,864, 27.9%) had significantly lower EQ-5D-5L utility scores (β = - 0.057; 95% CI - 0.063, - 0.052) and EQ VAS scores (β = - 4.882; 95% CI - 5.579, - 4.184) compared to those without OAB. This disutility exceeded the minimally important difference. HRQoL declined progressively with increasing OAB severity, with the most pronounced impact observed in the 65-69-year age group. Urgency and urgency urinary incontinence showed the strongest negative relationships with HRQoL. The self-care dimension was most affected (OR 2.457; 95% CI 2.115, 2.853). CONCLUSION: OAB is prevalent among community-dwelling older Japanese adults and is associated with clinically meaningful HRQoL reductions. These findings suggest the importance of early detection and severity-based, symptom-specific management, particularly targeting urgency and incontinence (e.g., β3-stimulants, behavioral therapy).
Health-related quality of life changes in patients with Q-fever fatigue syndrome: a four-year follow-up study, 10 years post-infection.
Stemerdink NC, Heemskerk SCM, Hartman E … +4 more , Wesseling M, Tieleman P, Burdorf A, Haagsma JA
Qual Life Res · 2026 Jun · PMID 42260029 · Full text
PURPOSE: Q-fever can cause long-term health complications such as Q-fever Fatigue Syndrome (QFS), which may severely impact patients' Health-Related Quality of Life (HRQoL). This study investigated change of HRQoL in QFS...
PURPOSE: Q-fever can cause long-term health complications such as Q-fever Fatigue Syndrome (QFS), which may severely impact patients' Health-Related Quality of Life (HRQoL). This study investigated change of HRQoL in QFS patients over time, and explored predictors associated with change using longitudinal data. METHODS: In this prospective observational study questionnaires were administered among Dutch individuals with self-reported QFS who were registered at Q-support, a foundation that supports, advises and informs Q-fever patients. Participants completed four annual questionnaires between 2021 and 2024, including EQ-5D-5L and EQ VAS to measure HRQoL. Changes in HRQoL were categorized as "improvement", "deterioration", or "stable", using an anchor-based minimal important difference approach. Multinomial logistic regression analyses identified predictors of change. RESULTS: A total of 199 patients were included in the final analysis. At baseline, median EQ-5D-5L utility index and EQ VAS scores were 0.647 (IQR: 0.352-0.774), and 50.0 (IQR: 34.0-60.0), respectively. After four years, 37% of patients showed improvement in EQ-5D-5L utility, 30% deterioration, and 33% remained stable. Female sex and higher baseline EQ-5D-5L utility were associated with lower odds of improvement or being stable. CONCLUSION: More than 10 years post-infection, HRQoL remains consistently low at group level among patients with QFS, with substantial long-term variability in individual outcomes. These findings underscore the chronic nature of QFS, its long-lasting consequences, and the importance of continued monitoring of individual health trajectories. Further studies are warranted to better understand the mechanisms underlying individual differences in recovery and to inform targeted interventions for this patient population.
Physiotherapist and nurse perspectives on the acceptability and timing of patient-reported outcome measures in clinical practice: Balancing standardisation and flexibility.
Nikolovski J, Franklin M, Morton RL … +17 more , Armstrong M, Hartas G, Rossiter B, Fagan M, Tinsley M, Levesque JF, Sutherland K, Mercieca-Bebber R, Snyder C, Aiyegbusi OL, Power R, De Lisser-Howarth T, Troiani JP, Maher J, Leonard J, Elias K, Rutherford C
Qual Life Res · 2026 Jun · PMID 42250184 · Full text
PURPOSE: Patient-reported outcome measures (PROMs), when used at the point-of-care, provide a mechanism to systematically integrate patients' voices into shared decision-making. We examined clinicians' perspectives on th...
PURPOSE: Patient-reported outcome measures (PROMs), when used at the point-of-care, provide a mechanism to systematically integrate patients' voices into shared decision-making. We examined clinicians' perspectives on the acceptability and preferred timing of PROM completion in routine clinical care for respiratory, musculoskeletal, cardiac, kidney and diabetic condition management. METHODS: Semi-structured interviews were conducted over videoconference between October 2024 and May 2025. Participants worked at various New South Wales Health clinics, providing care for patients with chronic conditions, and were eligible to collect and review PROMs digitally using the Health Outcomes Patient Experience platform (NSW PRMs-HOPE program). Reflexive thematic analysis was undertaken. RESULTS: Twenty-two physiotherapists and nurses were interviewed. Acceptability themes included: (1) purpose of PROMs; (2) broader ethical considerations for PROMs collection and use; (3) practical aspects of PROM administration. Findings highlighted the elusiveness of an "ideal" timing for PROMs. Timing themes included: (1) (mis)alignment in timing of PROM administration; (2) preferences for fixed or customised timing and frequency of administration; (3) temporal fit and workflow alignment. CONCLUSION: PROMs were reported as most acceptable when their selection, content, and timing aligned with clinical purpose, scope of practice, and existing workflows. Flexibility in PROM administration was perceived to enhance relevance at the point-of-care and support timely, condition-specific clinical conversations and interventions. However, clinicians also recognised that increased flexibility may reduce the comparability of aggregated PROM data across cohorts, highlighting an inherent acceptability trade-off between meeting individual clinical needs and supporting system-level performance monitoring and benchmarking.
The argument-based approach to validity: theory, assumptions, evidence, and consequences.
Hawkins M, Sawatzky R, Weinfurt K … +9 more , Cartner S, Gill S, Osborne R, Mayo N, Schick-Makaroff K, Sprangers M, Wirth RJ, Elsworth GR, Nolte S
Qual Life Res · 2026 Jun · PMID 42250172 · Full text
BACKGROUND: Concerns about measurement validation are often expressed as imperatives to use a "valid measure". However, validity is not a characteristic of a measure. Instead, validation and validity refer to score inter...
BACKGROUND: Concerns about measurement validation are often expressed as imperatives to use a "valid measure". However, validity is not a characteristic of a measure. Instead, validation and validity refer to score interpretation within a context of use. This is important because responses to health measures can be different in different contexts, influencing equitable consequences of measurement. In this paper, we aim to (1) outline the theory of the argument-based approach to validity, and (2) discuss assumptions and evidence in relation to equitable consequences of measurement. METHODS: The argument-based approach to validity asks us to first state how scores will be interpreted and used in context. Assumptions underpinning this statement guide validation planning. Existing and new evidence need to be examined and evaluated in relation to the assumptions and concept of interest, leading to a reasoned evidence-based argument about the degree to which score interpretation in a context of use is valid, with consideration of potential threats to validity and measurement consequences. RESULTS: Key assumptions are described, including why evidence is needed, what evidence tells us, and the importance of assumptions in relation to the equitable consequences of measurement. CONCLUSION: The argument-based approach to validity shifts the focus of validation to a score's interpretation and use in a context, in relation to the concept of interest. A validity argument is built from evidence about the plausibility of the score interpretation in the context of use with consideration of the degree to which measurement consequences will lead to the intended beneficial health consequences and not perpetuate existing inequities in health.
Developing a validity testing plan for a patient-reported outcome measure in a new context using the argument-based approach to validity.
Gill SW, Cheng C, Bowman J … +4 more , Elsworth G, Shaw C, Osborne RH, Hawkins M
Qual Life Res · 2026 Jun · PMID 42250158 · Full text
Health-related measures, such as Patient-Reported Outcome Measures (PROMs), are widely used in clinical practice, research, service evaluation, and decision-making. Validity is about the extent to which a score interpret...
Health-related measures, such as Patient-Reported Outcome Measures (PROMs), are widely used in clinical practice, research, service evaluation, and decision-making. Validity is about the extent to which a score interpretation is supported by evidence for a specific use in a specific context. The argument-based approach to validity provides a systematic way of planning and undertaking validity testing and is gaining attention in health-related measurement, yet few practical examples of its application exist. This commentary firstly describes the phases and steps of the argument-based approach to validity. Secondly, it brings the theory into practice by presenting a worked example that illustrates how to apply the argument-based approach to validity to develop a validity testing plan for the application of a widely used health literacy PROM in a new context. Importantly, the validity testing plan outlines the underpinning assumptions that need investigation to determine the extent to which we can have confidence in the interpretation and use of Health Literacy Questionnaire (HLQ) scores in the New South Wales prison context. The commentary offers a practical exemplar for identifying assumptions, evidence needs and methodological options to support validity testing and to develop an evidence-based argument to verify score interpretation and use in a specific context. The validity testing planning process described and demonstrated in this paper will support the uptake of this approach and promote scientific rigour in health-related measurement.
Patient-reported outcomes and measures applied in individuals undergoing colonoscopy surveillance for colorectal cancer: a scoping review.
Belay WS, Symonds EL, Azanaw MM … +7 more , Molla MD, Wassie MM, Laven-Law G, Menberu MA, Ahmed M, Kaambwa B, Bulamu NB
Qual Life Res · 2026 Jun · PMID 42250154 · Full text
PURPOSE: Clinical guidelines recommend regular colonoscopy surveillance for individuals at elevated risk for colorectal cancer (CRC). While colonoscopy surveillance is proven to reduce the incidence of CRC, colonoscopy i...
PURPOSE: Clinical guidelines recommend regular colonoscopy surveillance for individuals at elevated risk for colorectal cancer (CRC). While colonoscopy surveillance is proven to reduce the incidence of CRC, colonoscopy is an invasive procedure that can impact patient-reported outcomes (PROs). Assessment of PROs is recommended as a key indicator of the quality of health service delivery. However, there is no standard set of PROs and PRO measures (PROMs) to be applied in individuals undergoing regular surveillance colonoscopy. The aim of this scoping review was to identify PROs and PROMs applied for this population. METHODS: The review followed the Joanna Briggs Institute guidelines. Five databases were searched: Medline (OVID), Scopus, Web of Science, CINAHL, and PsycINFO (OVID). Data extracted included the PROs assessed, PROMs used, indications for surveillance colonoscopy, and assessment timepoints. RESULTS: 8684 studies were screened, and 91 were included. Eighteen PROs and 12 PROMs were identified. Abdominal discomfort (60%), abdominal pain (60%) and nausea (56%) were the most frequently collected PROs. PROs were predominantly assessed after bowel preparation/before colonoscopy (55%) and 1-2 days after colonoscopy (48%). Hospital Anxiety and Depression Scale (33.3%), Short Form-36 (33%), the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire 30-item (27%), and EQ-5D-5L (20%) were the most frequently used PROMs. CONCLUSION: There is variability in PROs and PROMs applied. This highlights the need for consensus on a standardised set of PROs to be assessed and PROMs to facilitate consistent and reliable data collection to better inform implementation and improve healthcare quality.
The impact of health literacy on health-related quality of life among individuals with physical disabilities: a path analysis based on the integrated model of health literacy.
Kim B, Yoon JY
Qual Life Res · 2026 Jun · PMID 42250143 · Full text
PURPOSE: This study examined the direct and indirect associations among health literacy (HL), its determinants, and health-related quality of life (HRQoL) in individuals with physical disabilities based on the Integrated...
PURPOSE: This study examined the direct and indirect associations among health literacy (HL), its determinants, and health-related quality of life (HRQoL) in individuals with physical disabilities based on the Integrated Model of Health Literacy (IMHL). METHODS: This cross-sectional study analyzed data from 441 adults with physical disabilities obtained from the 2021 Korea Health Panel Survey. Based on the IMHL, path analysis was conducted to examine the direct and indirect associations of situational determinants (usual source of care, need for care) and societal and environmental determinants (employment status, unmet healthcare needs) on HL and HRQoL. RESULTS: Among the participants, 44.0% were classified as having inadequate HL and 22.3% as problematic. Need for care was negatively associated with both HL (β = - 0.12, p = .002) and HRQoL (β = - 0.33, p < .001). Unmet healthcare needs also had a significant negative direct association with HRQoL (β = - 0.17, p < .001). Employment status (β = 0.15, p < .001) and HL (β = 0.13, p = .005) were positively associated with HRQoL. HL partially mediated the relationship between need for care and HRQoL (β = - 0.02, p = .044). CONCLUSION: These findings highlight the role of HL in relation to HRQoL among individuals with physical disabilities. Improving HRQoL in this population may require approaches that go beyond individual-level HL promotion and also address support for care-dependent individuals and structural factors, including healthcare accessibility and employment opportunities.
Association of intensive blood pressure lowering with health-related quality of life after endovascular thrombectomy: a post-hoc analysis of the ENCHANTED2/MT trial.
Gu R, Ge M, Wang Z … +14 more , Huyan M, Wang L, Gao Y, Zhang X, Zhang Y, Zhang L, Li Z, Xing P, Hua W, Shen F, Liu J, Shen H, Yang P, ENCHANTED2/MT investigators
Qual Life Res · 2026 Jun · PMID 42250116 · Publisher ↗
BACKGROUND AND PURPOSE: Intensive blood pressure (BP) targets of less than 120 mm Hg have been shown to worsen functional outcomes after endovascular thrombectomy (EVT) for acute ischemic stroke. However, their effects o...
BACKGROUND AND PURPOSE: Intensive blood pressure (BP) targets of less than 120 mm Hg have been shown to worsen functional outcomes after endovascular thrombectomy (EVT) for acute ischemic stroke. However, their effects on self-reported health-related quality of life (HRQoL) remain uncertain. METHODS: This post-hoc exploratory analysis used data from ENCHANTED2/MT, an open-label, blinded-endpoint randomized trial conducted in 44 Chinese hospitals. Adults with elevated BP within 3 h after successful reperfusion were randomized to intensive (< 120 mmHg) or less intensive (140-180 mmHg) systolic BP targets. HRQoL at 90 days was assessed using the EQ-5D-3 L and EQ visual analogue scale (EQ VAS). Functional outcome was measured by the modified Rankin Scale (mRS). Treatment effects were estimated using adjusted regression models, and causal mediation analysis was performed to explore indirect and direct pathways. RESULTS: Of 816 randomized patients, EQ-5D data were available in 685. At 90 days, both EQ-5D index (0.66 vs. 0.72) and EQ VAS (73.01 vs. 76.84) were lower in the more intensive BP group. Adjusted mean differences favored the less intensive treatment group: 0.06 (95% CI, 0.01 ~ 0.11; P = 0.017) for EQ-5D index and 3.49 (95% CI, 0.38 ~ 6.60; P = 0.028) for EQ VAS. Mediation analysis showed that the association of intensive BP lowering with worse HRQoL was mainly indirect via worse mRS outcomes. CONCLUSIONS: Intensive BP lowering after EVT was associated with modestly worse HRQoL at 90 days. The observed differences were small in magnitude, particularly for EQ VAS relative to commonly reported thresholds for clinical importance. These findings are consistent with less intensive BP targets after EVT and highlight the importance of incorporating patient-reported outcomes in acute stroke trials. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov number, NCT04140110 the Registration Date, 22/10/2019.
Impact of long COVID on health-related quality-of-life among Japanese adults: findings of CARE Japan study.
Sultana S, Asai Y, Ishioka H … +5 more , Ikeda S, Ohtera A, Matsunaga N, Ohmagari N, Tsuzuki S
Qual Life Res · 2026 Jun · PMID 42250105 · Full text
OBJECTIVES: This study aimed to comprehensively assess the implications of long COVID on the health-related quality-of-life (HRQoL) among Japanese adults and to identify its associated factors. METHODS: This study used p...
OBJECTIVES: This study aimed to comprehensively assess the implications of long COVID on the health-related quality-of-life (HRQoL) among Japanese adults and to identify its associated factors. METHODS: This study used prospective cohort data from the CARE Japan Study between January 2022 and January 2023. The outcome of this study was HRQoL, which was measured using SF-12 questionnaire. Self-reported long COVID was the primary independent variable. We fitted adjusted beta regression models to calculate beta regression coefficients with 95% confidence intervals (CI) and average marginal effects (AME) to explore the determinants of HRQoL. We also performed latent class analysis (LCA) to identify unobserved patterns of long COVID symptoms. RESULTS: Final sample size was 1,285. Compared to the participants with no long COVID, the HRQoL among long COVID patients (β: -0.25; 95% CI: -0.36 to -0.14; AME: -0.036) was significantly lower. The effect of long COVID on HRQoL was the most pronounced among the respondents with pre-existing lung diseases (β: -0.72; 95% CI: -1.29 to -0.16; AME: -0.114). LCA identified three subgroups of long COVID patients - class 1, 2, and 3. Compared to the participants with no long COVID, participants belonged to class 1 (β: -0.47; 95% CI: -0.57 to -0.36; AME: -0.065), class 2 (β: -0.48; 95% CI: -0.60 to -0.35; AME: -0.066), and class 3 (β: -0.93; 95% CI: -1.06 to -0.79; AME: -0.148) had poorer HRQoL. CONCLUSIONS: Long COVID patients had reduced HRQoL. Female gender, young-age, thin BMI or pre-existing psychological disorders were associated with lower HRQoL.
Determining the quality of life-aged care consumer threshold to identify good quality of life in older adults in long-term care.
Song J, Ratcliffe J, Milte R … +1 more , Khadka J
Qual Life Res · 2026 Jun · PMID 42250081 · Full text
OBJECTIVE: With ageing populations and increasing demand for aged care, quality of life (QoL) has become a central focus of recent policy reforms in Australia and other countries. The Quality of Life-Aged Care Consumer (...
OBJECTIVE: With ageing populations and increasing demand for aged care, quality of life (QoL) has become a central focus of recent policy reforms in Australia and other countries. The Quality of Life-Aged Care Consumer (QOL-ACC), a preference-based measure, was introduced as a mandatory national quality indicator across Australia in 2023 to support assessment and public reporting of variation in QoL across long term aged care facilities (LTCFs). While its national implementation is a significant step forward, further guidance is needed to support the interpretation of QOL-ACC scores in practice. Therefore, this study aimed to identify an empirical reference point on the QOL-ACC to aid interpretation of scores in LTCFs. METHODS: Data were collected through self-reports from LTCFs residents and proxy reports from informal carers. An anchor-based method was used, comparing QOL-ACC summative scores (range: 0 to 24; higher scores indicate better QoL) against two global items of health and QoL. Receiver Operating Characteristic (ROC) curve analysis assessed the discriminative ability of different QOL-ACC scores in identifying residents who rated their global health or quality of life as "good" or better. Sensitivity, specificity, and area under the curve (AUC) were calculated. RESULTS: Of the total 316 care recipients included (200 [62.5%] self-reports and 116 [37.5%] proxy-reports), the majority were female (64.2%) with a mean age of 84 ± 8.2 years. A QOL-ACC summative score of ≥ 18 was identified as the optimal reference threshold for indicating good quality of life, with a sensitivity of 76%, specificity of 78%, and an AUC of 0.83 (95% CI 0.78-0.87), indicating good discriminative ability. CONCLUSION: This study provides a practical and evidence-based interpretive reference point for QOL-ACC scores in long-term care facilities. The identified cut-off may support interpretation of QOL-ACC outcomes in routine quality monitoring and inform care planning, service evaluation, and quality improvement interventions.
Quality of life and psychological wellbeing of adults with anaphylaxis: a mixed method systematic review.
Arbuckle B, Forster E, Mitchell AE
Qual Life Res · 2026 Jun · PMID 42250067 · Full text
PURPOSE: To review the current evidence on quality of life (QOL) and psychological wellbeing of adults with anaphylaxis. METHODS: A mixed method systematic review was conducted. The comprehensive search used the Preferre...
PURPOSE: To review the current evidence on quality of life (QOL) and psychological wellbeing of adults with anaphylaxis. METHODS: A mixed method systematic review was conducted. The comprehensive search used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Nine databases (MEDLINE, EBSCOhost, Embase, CINAHL Complete, Joanna Briggs Institute [JBI], Nursing and Allied Health ProQuest, PsycINFO, Cochrane Library and Google Scholar) were searched for literature published between January 2011 and October 2024. The Mixed Methods Appraisal Tool was used to assess methodological quality. Data from included studies were analysed using convergent mixed methods design. The protocol was prospectively registered (PROSPERO 2024 CRD42024583368). RESULTS: A total of 11 papers (10 studies) met the inclusion criteria. Most studies reported that anaphylaxis has a negative impact on adults' psychological wellbeing, with many experiencing high levels of stress, anxiety, and/or depression. Women reported worse mental health than men. QOL was also affected, as most participants reported daily limitations, and many expressed reduced enjoyment in social activities. Impaired QOL was attributed to fear and emotional burden arising from previous episodes of anaphylaxis, contributing to avoidant behaviours and social withdrawal in an attempt to reduce the risk of future anaphylaxis events. CONCLUSION: Anaphylaxis affects adults' psychological wellbeing and QOL. This review highlighted that clinicians may consider routine assessment of QOL and psychological wellbeing to not only provide adequate support but to identify patients who may require additional support as they learn to balance daily living with anaphylaxis.
Measuring affective symptoms of depression in aphasia: development of an accessible ecological momentary assessment tool.
Boxrud B, Siegle E, Shankman SA … +3 more , Reddy M, Griffith JW, Ashaie SA
Qual Life Res · 2026 Jun · PMID 42250063 · Full text
PURPOSE: Post-stroke depression is highly prevalent in aphasia, yet existing depression measures rely heavily on language and lack sufficient validity for this population. The aim of this study was to develop an aphasia-...
PURPOSE: Post-stroke depression is highly prevalent in aphasia, yet existing depression measures rely heavily on language and lack sufficient validity for this population. The aim of this study was to develop an aphasia-accessible Ecological Momentary Assessment (EMA) of depression based on the input of people with aphasia, their care partners, and speech-language pathologists (SLPs). METHODS: Nine focus groups were conducted with people with aphasia (n = 15), care partners (n = 13), and SLPs (n = 13) to identify relevant depression symptoms. Items were selected based on factors such as endorsement ratings and qualitative feedback across stakeholder groups. Participants with aphasia also took part in individual cognitive interviews to ensure comprehensibility and accessibility of the final items, corresponding pictures, and pictorial rating scale. RESULTS: The final set of items to be included in the EMA consisted of three positive affect items (determined, proud, interested) and three negative affect items (sad, like a failure, angry). Cognitive interviews confirmed comprehensibility and accessibility of the items, though the picture for interested required revision. Additionally, participants found 3-4 daily assessments feasible. CONCLUSION: Stakeholder engagement revealed that positive affect dysregulation (e.g., reduced interest in previously rewarding activities) may be particularly salient for depression in aphasia in addition to negative affect dysregulation (e.g., increased feelings of failure and anger). The resulting six-item EMA uses multimodal supports (e.g., text, pictures, pictorial rating scale, audio recordings) to capture both valence systems.
Self-mastery buffers associations between stressful life events and mental quality of life and fatigue in people living with multiple sclerosis.
Yu M, Simpson-Yap S, Jelinek G … +3 more , Neate S, Reece J, Nag N
Qual Life Res · 2026 Jun · PMID 42250033 · Full text
BACKGROUND: Multiple sclerosis (MS) is a chronic immune-mediated inflammatory disease of the central nervous system, often accompanied by fatigue and reduced quality of life (QoL). Stressful life events (SLEs) may height...
BACKGROUND: Multiple sclerosis (MS) is a chronic immune-mediated inflammatory disease of the central nervous system, often accompanied by fatigue and reduced quality of life (QoL). Stressful life events (SLEs) may heighten stress in people with MS (pwMS), compounding the challenges of living with the condition. While mastery is acknowledged as a psychological resource for resilience, its protective role against SLEs remains unclear. We examined whether mastery modifies associations between SLEs and QoL and fatigue in pwMS. METHODS: We analysed cross-sectional survey data from an international sample of 948 pwMS. Mastery (Pearlin mastery scale) was categorised into tertiles (low, moderate, high). QoL (MSQoL-54) was summarised as mental and physical composite scores. Clinically significant fatigue was defined as fatigue severity scale (FSS) > 5. SLEs exposure (Holmes-Rahe social readjustment rating scale) was assessed as total number and load (severity). Multivariable regression models assessed associations between SLEs and outcomes, and interaction terms tested effect modification by mastery. RESULTS: Higher number and load of SLEs were associated with clinically meaningful lower mental QoL (- 7 to - 8 points) among pwMS with low or moderate mastery, but not among pwMS with high mastery. Higher number and load of SLEs were also associated with 3- 5 fold higher odds of clinically significant fatigue, primarily among pwMS with low mastery. CONCLUSION: Higher mastery may buffer adverse associations between SLEs exposure and mental QoL and fatigue. Prospective studies are needed to confirm temporal relationships; however, interventions that support mastery may help mitigate stress-related impacts on wellbeing in MS.
Parental presence is associated with parent-child agreement in quality of life assessment among 5- to 7-year-old children: a comparison of administration conditions using the Dutch PedsQL.
Hartman EE, Emons WHM, Oort FJ
Qual Life Res · 2026 Jun · PMID 42250032 · Full text
PURPOSE: The Pediatric Quality of Life Inventory™ (PedsQL™ 4.0) is widely used to assess quality of life (QoL) in children, yet evidence on the reliability and validity of young children's self-reports is inconsistent. W...
PURPOSE: The Pediatric Quality of Life Inventory™ (PedsQL™ 4.0) is widely used to assess quality of life (QoL) in children, yet evidence on the reliability and validity of young children's self-reports is inconsistent. We evaluated whether self-reported QoL in young children varies by parental presence during administration and whether parent-child agreement differed between mothers and fathers. METHODS: Secondary analyses were conducted using data from primary schools (n = 303, children aged 5-7 years) including at least one participating parent. Children completed the PedsQL self-report either at school with a trained research assistant (parent-absent) or at home with a parent who read items aloud and recorded answers (parent-present). Mothers and fathers completed parallel proxy-reports. Multilevel modeling was used to estimate mean differences and correlations between reporters and conditions, with age and sex as covariates. RESULTS: Internal consistency of child self-reports was limited across the four subdomains, with somewhat lower values in the parent-absent condition. Parent ratings showed no systematic differences between conditions, whereas children scored higher when a parent was present, yielding smaller parent-child gaps and higher correlations. These patterns were similar for mothers and fathers. CONCLUSIONS: In this school-based community sample, improved agreement with a parent present was driven by higher child scores, consistent with brief, non-leading parental assistance (clarification/recall). Self-reports of young children obtained without a parent present warrant caution. Clear, age-appropriate guidance on administration and structured parental support is needed.
Health-related quality of life and lifetime QALY loss among Indigenous Australians with chronic conditions: an age-stratified analysis.
Haque R, Luebbe A, McGrail M … +5 more , Nasir BF, Alam K, Wallis K, Leedie F, Kondalsamy-Chennakesavan S
Qual Life Res · 2026 Jun · PMID 42250030 · Full text
BACKGROUND: Indigenous Australians in rural and remote areas experience substantial health-related quality of life (HRQoL) impacts alongside persistent healthcare access barriers. Community-led virtual primary care servi...
BACKGROUND: Indigenous Australians in rural and remote areas experience substantial health-related quality of life (HRQoL) impacts alongside persistent healthcare access barriers. Community-led virtual primary care services offer an innovative approach to improving access to health care services for Indigenous Australians in rural and remote areas. OBJECTIVE: To examine age-stratified HRQoL patterns and estimate the lifetime quality-adjusted life year (QALY) loss among Indigenous Australians with chronic conditions enrolled in a rural virtual primary care service. METHODS: We conducted a cross-sectional analysis of 75 Indigenous adults residing in rural Queensland. HRQoL was measured using the EQ-5D-5L instrument. Lifetime QALY loss was calculated using Queensland Indigenous life tables and population norms, with sensitivity analyses using Australian norms and varying discount rates. RESULTS: Overall mean utility was 0.775 (SD = 0.246). Age-stratified analysis revealed significant heterogeneity, with three age groups (18-54, 55-64, 65-74 years) demonstrating lower HRQoL than Queensland norms. The 55-64 age group experienced poorest HRQoL (utility = 0.701, SD = 0.287) and highest projected lifetime QALY loss (4.44 QALYs undiscounted; 2.63 with 5% discount). In contrast, participants aged 75 years and above exceeded population norms (utility = 0.872 vs. 0.863). Chronic disease burden was associated with HRQoL decline in adults aged 18-64 years, while physical activity was associated with higher HRQoL in those aged 65 years and over. CONCLUSIONS: Indigenous Australians aged 55-64 years represent a critical priority for virtual primary care interventions. Targeted support strategies for this 'at-risk' age group are essential to address substantial lifetime health burdens and improve long-term outcomes within remote delivery models.
Tracking quality of life-related outcomes in the U.S. population with monthly PROMIS computerized adaptive testing.
Junghaenel DU, Schneider S, Stone AA … +6 more , Orriens B, Gutsche T, Darling J, Perez-Arce F, Hayden O, Kapteyn A
Qual Life Res · 2026 Jun · PMID 42250024 · Full text
PURPOSE: This study evaluated the feasibility, reliability, and sensitivity of repeatedly administering brief PROMIS® computerized adaptive tests (CATs) monthly in a large, nationally representative internet panel. METHO...
PURPOSE: This study evaluated the feasibility, reliability, and sensitivity of repeatedly administering brief PROMIS® computerized adaptive tests (CATs) monthly in a large, nationally representative internet panel. METHODS: PROMIS CATs for anger, meaning in life, and positive affect were administered monthly for 13 consecutive months to the same 12,231 U.S. adults in the Understanding America Study (UAS). Each CAT was limited to three items per domain to minimize respondent burden. We assessed measurement precision, rank-order stability, and predictors of overall levels and month-to-month variability in each PROMIS measure. Time-series analyses also tested whether PROMIS scores were sensitive to acute health events reported each month. RESULTS: Three-item CATs achieved strong measurement precision (reliability ≥ 0.80) across wide score ranges and showed moderate rank-order stability (ICCs = 0.67-0.79). In between-subjects analyses, a greater number of chronic conditions was associated with both poorer average PROMIS scores and higher month-to-month variability. In within-subjects analyses, PROMIS scores were responsive to acute health events: anger and positive affect showed significant same-month changes in response to most health events, while meaning in life was less reactive. Event-related changes typically dissipated within 1-2 months. CONCLUSIONS: Brief PROMIS CATs can be administered monthly while maintaining psychometric rigor. This high-frequency approach enables the assessment of both average levels and temporal dynamics of health, revealing new insights into the effects of chronic disease and acute health events. These findings support the use of PROMIS measures in longitudinal population health research.
Comments raised by 'Quality of life during electronic patient-reported outcome (ePRO) monitoring in thoracic surgery patients: a pilot randomized controlled trial'.
Kishi Y, Inumaru A, Saito Y
Qual Life Res · 2026 Jun · PMID 42250019 · Publisher ↗
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Childhood adversity and trajectories of health and quality of life in Australian children and adolescents: a latent class analysis.
Gautam N, Rahman MM, Khanam R
Qual Life Res · 2026 Jun · PMID 42250008 · Full text
PURPOSE: This study aimed to identify adverse childhood experiences (ACEs) clusters and investigate the longitudinal relationships between ACEs clusters and their effects on health and health-related quality of life (HRQ...
PURPOSE: This study aimed to identify adverse childhood experiences (ACEs) clusters and investigate the longitudinal relationships between ACEs clusters and their effects on health and health-related quality of life (HRQoL) in Australian children and adolescents. METHODS: This study used data from the kindergarten cohort of the Longitudinal Study of Australian Children. Latent class analysis was employed to identify ACEs clusters. Generalized estimating equation (GEE) models were used to examine longitudinal associations between ACEs clusters and multiple health outcomes, including general health, mental health, obesity, and HRQoL domains. RESULTS: The study included 3,089 participants contributing 18,534 observations. Three ACEs clusters were identified: low adversity (65.8%), moderate adversity (25.5%), and high adversity (8.7%). Children in the high-adversity cluster had a higher risk of poorer mental health (IRR = 1.89, 95% CI 1.85-1.92) and suboptimal general health (OR = 1.19, 95% CI 1.17-1.22) compared with those in the low-adversity cluster. Moderate adversity was also associated with elevated risks, although of smaller magnitude. HRQoL scores across social, school, psychosocial, physical, and emotional domains were consistently lower among children exposed to higher adversity. CONCLUSION: Distinct ACEs clusters were associated with differences in health and HRQoL among Australian children and adolescents. Identifying ACEs patterns provides valuable insights for developing targeted prevention and intervention strategies aimed at mitigating the long-term health and psychosocial consequences of childhood adversity.
Response shifting: a qualitative meta-synthesis on response shift.
Schick-Makaroff K, Davey AF, Sébille V … +3 more , Sprangers MAG, Sawatzky R, Response Shift –in Sync Working Group
Qual Life Res · 2026 Jun · PMID 42250000 · Full text
PURPOSE: This qualitative meta-synthesis aimed to (1) describe health-related studies that examined response shift using qualitative methods, and (2) synthesize the qualitative results about response shift. METHODS: We s...
PURPOSE: This qualitative meta-synthesis aimed to (1) describe health-related studies that examined response shift using qualitative methods, and (2) synthesize the qualitative results about response shift. METHODS: We systematically searched MEDLINE, PSYCINFO, CINAHL, EMBASE, Social Science Citation Index, and Dissertations and Theses Global to identify health-related studies using qualitative and mixed methods designs to examine response shift (n = 2221). Findings were classified using constant targeted comparison and "imported concepts" (e.g., recalibration). RESULTS: Of 1010 records screened, 33 had full-text screening; 14 were included, 10 of which used patient-reported outcome measures as part of their qualitative methods. Six studies specified a qualitative methodology. All of the 14 studies inferred evidence of response shift. Recalibration evidence was related to comparisons to previous health states or to others with poorer health; pre-existing expectations of current health; and adjustment of their quality of life standard. Reprioritization evidence was related to shifting life priorities to compensate for changing health status and forced changes in goals/priorities due to severity of treatment effects. Reconceptualization evidence was associated with changes in participants' health conditions and/or treatment and commonly co-occurred with reprioritization highlighting their interconnectedness. Authors of 10 studies noted possible alternative explanations of response shift, including: recall bias, incapacity of verbalizing experiences/feelings, irrelevant stimuli, and response bias, none of which ruled out concurrent occurrence of response shift. CONCLUSION: Future work is needed to engage in dialogue about how multiple lenses towards inquiry and analysis may be leveraged to examine the multiplicity of ways in which people experience change in meaning.
EQ-5D-5L population norms for Singapore: a household survey-based analysis.
Xiamusiya A, Lee JJ, Shou Y … +4 more , Hao S, Subramaniam M, Cheng LJ, Luo N
Qual Life Res · 2026 Jun · PMID 42249989 · Full text
BACKGROUND: Population norms for the EQ-5D-5L are essential for health economic evaluations. However, existing norms for Singapore were established before the COVID-19 pandemic, whose prolonged health and societal impact...
BACKGROUND: Population norms for the EQ-5D-5L are essential for health economic evaluations. However, existing norms for Singapore were established before the COVID-19 pandemic, whose prolonged health and societal impacts may have rendered them outdated. Updated post-pandemic benchmarks are therefore needed to inform cost-utility analyses and public health policy accurately. This study aimed to establish updated EQ-5D-5L population norms among Singapore residents aged ≥ 15 years and to examine variation in health-related quality of life (HRQoL) by sociodemographic characteristics. METHODS: We conducted a cross-sectional household survey between May and July 2024 among Singapore citizens and permanent residents, using a three-stage sampling strategy with demographic quotas. We assessed HRQoL using the EQ-5D-5L and EQ VAS. We derived index scores using the Singapore-specific value set. We generated descriptive statistics and used multivariable linear regression to identify independent associations between HRQoL and sociodemographic characteristics. RESULTS: The analysis included 2,005 respondents. While 54.6% reported no problems ('11111'), pain/discomfort (30.7%) and anxiety/depression (27.1%) were the most prevalent issues. The mean EQ-5D-5L index score was 0.933 (SD 0.122), and the mean EQ VAS score was 82.3 (SD 13.3). Multivariable regression showed that older age was most strongly associated with lower HRQoL (p < 0.001). Higher socioeconomic status, measured by income and housing type, was independently associated with better HRQoL. Gender was not significantly associated with either outcome. CONCLUSION: This study provides updated, post-pandemic EQ-5D-5L population norms for Singapore. These norms offer an essential benchmark for interpreting EQ-5D-5L scores in cost-utility analyses and highlight priorities for addressing socioeconomic health inequalities.
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