Quality Of Life Research[JOURNAL]
Sun
200 papers
Quality of life dynamics in the gastric cancer dyad: an actor-partner interdependence model analysis guiding the development of a family-centered nursing framework.
Gu YY, Chen YM, Ye YQ … +7 more , Zhang C, Hu HY, Keremu K, Yang ZY, Xing FF, Zhang J, He CZ
Qual Life Res · 2026 Jul · PMID 42400829 · Publisher ↗
PURPOSE: To explore the mechanisms linking quality of life (QoL) between postoperative GC patients and their family caregivers, and to construct a family-centered nursing framework. METHODS: 353 patient-caregiver dyads w...
PURPOSE: To explore the mechanisms linking quality of life (QoL) between postoperative GC patients and their family caregivers, and to construct a family-centered nursing framework. METHODS: 353 patient-caregiver dyads were recruited. Based on a validated theoretical framework, we analyzed factors influencing QoL and used the Actor-Partner Interdependence Model (APIM) to examine bidirectional pathways. RESULTS: Patient and caregiver QoL were positively correlated (r = 0.287, p < 0.001). Actor effects: Patient QoL was positively predicted by patient health literacy, benefit finding, and positive coping, and negatively by patient negative coping and anxiety/depression. Caregiver QoL was positively predicted by caregiver health literacy and positive coping, and negatively by caregiver benefit finding, negative coping, and anxiety/depression. Partner effects: Caregiver health literacy and positive coping positively predicted patient QoL; caregiver self‑efficacy and benefit finding negatively predicted patient QoL. Patient positive coping positively predicted caregiver QoL, while patient social support negatively predicted caregiver QoL. CONCLUSIONS: This study reveals significant bidirectional interdependence of QoL within GC dyads, uncovers complex negative spillover mechanisms, and provides an empirical basis for identifying high-risk groups and developing balanced, de-burdening interventions. The findings support integrating the patient-caregiver dyad as a holistic unit into disease management frameworks. Gastric cancer and surgery can greatly change the lives of both patients and the family members who care for them. However, care after surgery often focuses mainly on the patient, while the caregiver's needs and influence may be overlooked. This study aimed to understand how quality of life is connected between patients after gastric cancer surgery and their family caregivers. We studied 353 patient-caregiver dyads and looked at how understanding health information, confidence in managing care, finding positive meaning, coping styles, emotional distress, and social support were related to their quality of life. We found that patients and caregivers affected each other. When caregivers had better health knowledge and used more positive ways to cope, patients tended to report better quality of life. When patients used positive coping, caregivers also tended to report better quality of life. However, some forms of support or personal effort were linked with lower quality of life for the other person, suggesting possible hidden burden. These findings show that patients and caregivers should be supported together, not separately.
Correction: Self-stigma and suicide risk mediates the associations of inattention/impulsivity symptoms with psychological distress and quality of life among people with schizophrenia.
Nguyen TTT, Soraci P, Huang HW … +6 more , Chen YL, Huang YT, Pisanti R, Chang KC, Griffiths MD, Lin CY
Qual Life Res · 2026 Jul · PMID 42400708 · Publisher ↗
Abstract loading — click title to view on PubMed.
A methodological overview of new measure development for the Limb Injury Measurement Battery for Quality of Life (LIMB-QOL).
Boulton AJ, Choi SW, Tyner CE … +2 more , Slotkin J, Tulsky DS
Qual Life Res · 2026 Jul · PMID 42400693 · Publisher ↗
PURPOSE: To describe the data analytic strategy used to develop new quality-of-life measures for the Limb Injury Measurement Battery for Quality of Life (LIMB-QOL). METHODS: Several item pools were created and administer...
PURPOSE: To describe the data analytic strategy used to develop new quality-of-life measures for the Limb Injury Measurement Battery for Quality of Life (LIMB-QOL). METHODS: Several item pools were created and administered to a large sample of individuals with a history of major extremity injury or limb loss (n = 603). Item analyses adhered to modern psychometric standards (e.g., PROMIS®, COSMIN) and aimed to create several item response theory-based (IRT) item banks based on the graded response model. Items were removed iteratively based on pre-defined criteria and IRT model assumptions were met for the final item pools (monotonicity, unidimensionality, local item independence); differential item functioning, test-retest reliability, and convergent validity were then evaluated. Computer adaptive test and short-form versions of final item banks were created and examined using data simulation. RESULTS: Item analyses led to the development of 8 new item banks and two fixed-length scales. These 10 new LIMB-QOL measures demonstrated initial evidence of reliability (α range = 0.94-0.98, test-retest ICC range: 0.68-0.91) and convergent validity for use in individuals with a history of major extremity injury or limb loss, and abbreviated formats of the full item banks exhibited comparable performance. CONCLUSION: The new LIMB-QOL measures demonstrated strong psychometric properties and can be used to collect patient-reported assessments of quality of life following major extremity injury and limb loss. The analytic strategy described herein exemplifies how the PROMIS methodology can be utilized to design IRT-based patient-reported outcome measures to fill measurement gaps for specific clinical populations.
Overview of the limb injury measurement battery for quality of life (LIMB-QOL).
Tulsky DS, Tyner CE, Boulton AJ … +11 more , Kisala PA, Slotkin J, Dearth CL, Childers WL, Zafonte R, Kalpakjian C, Kingsbury T, Choi SW, Sherer M, Bartlett S, Tintle S
Qual Life Res · 2026 Jul · PMID 42400692 · Publisher ↗
PURPOSE: The Limb Injury Measurement Battery for Quality of Life (LIMB-QOL) was developed to comprehensively assess patient reported outcomes (PRO) for research and clinical use with individuals who have sustained major...
PURPOSE: The Limb Injury Measurement Battery for Quality of Life (LIMB-QOL) was developed to comprehensively assess patient reported outcomes (PRO) for research and clinical use with individuals who have sustained major extremity trauma and limb loss. METHODS: A mixed-methods approach was used that included qualitative focus groups with civilians, service members, and clinicians as well as quantitative PRO data collection with individuals with a history of major traumatic limb injury or limb-loss due to such trauma or sudden-onset illness. Individuals with dysvascular and other chronic disease causes were excluded. Qualitative data were collected via focus groups (n = 56 individuals with major extremity trauma; n = 34 clinicians) and cognitive debriefing interviews (n = 41 individuals with major extremity trauma). Quantitative data were obtained through structured phone interviews with a large sample representing the target limb trauma and limb loss population (n = 603). Newly developed item banks were calibrated using graded response model item response theory analysis. RESULTS: LIMB-QOL includes 25 measurement scales including 10 new, targeted item banks developed with and for individuals with major limb trauma and 15 existing PRO item banks measuring salient physical, emotional, and social aspects of health-related QOL. Computer adaptive tests and short forms were programmed into the Assessment Center application programming interface and are now available through REDCap and other platforms. CONCLUSION: LIMB-QOL provides a comprehensive and standardized system of PRO assessments for individuals with amputation or limb preservation due to sudden-onset limb injury. Research and clinical applications are discussed.
Agreement between the EQ-5D-5L anxiety/depression dimension and GAD-7/PHQ-9 for psychological distress assessment in patients with hematologic malignancies.
Tong F, Zhang Y, Cheng T … +4 more , Wang S, Chen Y, Qin W, Xu Y
Qual Life Res · 2026 Jul · PMID 42400687 · Publisher ↗
BACKGROUND: Patients with hematologic malignancies (HMs) often experience psychological distress, significantly impairing health-related quality of life (HRQoL) and deteriorating clinical prognosis. Although the widely u...
BACKGROUND: Patients with hematologic malignancies (HMs) often experience psychological distress, significantly impairing health-related quality of life (HRQoL) and deteriorating clinical prognosis. Although the widely used instrument EuroQol 5-Dimension 5-Level (EQ-5D-5L) has been validated in the general population for accurately identifying the psychological symptoms, its performance in HM patients remains unclear. We aimed to investigate whether the EQ-5D-5L questionnaire anxiety/depression (A/D) dimension, when already collected for HRQoL assessment, correlates with anxiety and depression symptoms and may potentially flag patients who may warrant further psychiatric evaluation. METHODS: Enrolled HM patients were invited to complete the EQ-5D-5L questionnaire. The anxiety/depression symptoms were additionally assessed using the symptom-specific tools Generalized Anxiety Disorder 7-item scale (GAD-7) and Patient Health Questionnaire-9 (PHQ-9). Spearman correlation analysis was performed to examine the correlation between the EQ-5D-5L A/D dimension and GAD-7/PHQ-9. The sensitivity and specificity of the A/D dimension were evaluated using GAD-7/PHQ-9 as a comparative measure. The associations between patient characteristics and responses on the A/D dimension were explored. RESULTS: The A/D dimension exhibited moderate-to-strong correlations with GAD-7 grade (r = 0.607, P < 0.001), PHQ-9 grade (r = 0.579, P < 0.001), and combined GAD-7/PHQ-9 grade (r = 0.603, P < 0.001). For identifying the presence of anxiety/depression, the A/D dimension showed high specificity (94.3-98.6%) but relatively low sensitivity (47.2-60.0%). A subset of patients classified as having anxiety or depression according to the GAD-7/PHQ-9 reported no emotional problems on the A/D dimension. Further analysis revealed that patients with higher education level tended to report lower symptom severity on the A/D dimension. CONCLUSIONS: The EQ-5D-5L A/D dimension showed moderate-to-strong correlation with GAD-7 and PHQ-9 among HM patients. Based on its limited sensitivity but high specificity, it may serve as a supplementary indicator within routine HRQoL assessments rather than a standalone screening tool. Due to the relatively small sample size and exploratory design of our study, further multicenter investigations with larger sample sizes are needed to validate our findings.
Empirical comparison of health-related quality of life and subjective well-being measures in Australian adolescents.
Winn KM, Woode ME, Chen G
Qual Life Res · 2026 Jul · PMID 42400679 · Publisher ↗
BACKGROUND: Health-related quality of life (HRQoL) and subjective well-being (SWB) are increasingly used to capture aspects of welfare beyond traditional health indicators; however, their conceptual distinction has not b...
BACKGROUND: Health-related quality of life (HRQoL) and subjective well-being (SWB) are increasingly used to capture aspects of welfare beyond traditional health indicators; however, their conceptual distinction has not been fully resolved. OBJECTIVE: This study examines the empirical relationships between HRQoL, measured using Child Health Utility 9D (CHU9D), EQ-5D-5L and EQ-5D-5L with psychosocial bolt-ons and SWB, measured using a 12-item Life Satisfaction Scale for Youth (LSS-Y) and the Disability Wellbeing Index (DWI), among Australian adolescents, and explores factors associated with these outcomes. METHODS: A nationwide, quota-based online survey was administered to Australian adolescents aged 15-19 years. The survey included the above instruments and sociodemographic questions. Psychometric analyses, including Spearman's correlation, Kruskal-Wallis tests, and exploratory factor analyses (EFA), were conducted to examine interrelationships and latent structures. Regression analyses were used to identify factors associated with the outcome measures. RESULTS: Data were collected from 1026 adolescents (44.5% female). Of these, 510 completed the CHU9D and 516 completed the EQ-5D-5L with psychosocial bolt-ons under a randomised design; all participants completed the LSS-Y and DWI. No HRQoL dimension showed strong correlations (Spearman's ρ > 0.60) with SWB dimensions, and EFA revealed limited overlap in latent constructs. Regression analyses identified general health, socioeconomic status, gender, migration status, and disability status as significant determinants of adolescents' health and well-being. CONCLUSION: HRQoL and SWB are not interchangeable but provide complementary insights. Using both measures may offer a more comprehensive understanding of adolescents' overall well-being.
Comparative performance of EQ-5D-5L bolt-ons in China and the Netherlands: results from the EQ-DAPHNIE project.
Cho SH, Janssen MF, Al Sayah F … +5 more , Mao Z, Feng YS, Kemény LV, Rencz F, EQ-DAPHNIE Project Team
Qual Life Res · 2026 Jun · PMID 42365574 · Full text
PURPOSE: This study compares the psychometric properties of eight EQ-5D-5L bolt-ons in the general populations from two culturally distinct countries: China (CN) and the Netherlands (NL). METHODS: As part of the EQ-DAPHN...
PURPOSE: This study compares the psychometric properties of eight EQ-5D-5L bolt-ons in the general populations from two culturally distinct countries: China (CN) and the Netherlands (NL). METHODS: As part of the EQ-DAPHNIE project, cross-sectional online surveys were conducted in 2024 with quota-based samples approximating the adult population from CN and the NL. Participants completed EQ-5D-5L, eight bolt-ons (vision, hearing, breathing, sleep, tiredness, social relationships, self-confidence, and cognition/memory), and sociodemographic and health-related questions. Psychometric assessments included ceiling, convergent/divergent validity, structural validity, known-groups validity, and explanatory power. RESULTS: The ceiling of the EQ-5D-5L was higher in CN (45%) than NL (32%). In both countries, vision, tiredness, and sleep bolt-ons reduced the ceiling the most, while breathing had the least effect. Tiredness and self-confidence bolt-ons demonstrated stronger associations with the core dimensions. Several bolt-ons significantly improved known-groups validity. In CN, hearing showed stronger known-groups discrimination across age groups, while self-confidence had the greatest impact in NL. The core dimensions explained more variance in EQ VAS in NL (37%) than CN (25%). In both countries, tiredness and self-confidence contributed most to increasing the variance explained. Principal component analysis (PCA) confirmed a seven-factor structure, with all bolt-ons loading separately from the core dimensions. In country-specific PCAs, no major differences were observed between CN and NL. CONCLUSION: While certain bolt-ons demonstrated robust psychometric properties in both countries, others showed greater context dependence. These findings add to the growing body of evidence supporting the development of the experimental EQ-5D Bolt-on Toolbox.
Content validity, face validity and comprehensiveness of generic quality-of-life measures in adults and children with rare genetic conditions and their carers: a think aloud qualitative study.
Bourke M, Zhu X, Boughtwood T … +7 more , Gaff C, Hunter A, Mulhern B, Peasgood T, Stuart C, Buchanan J, Goranitis I
Qual Life Res · 2026 Jun · PMID 42365553 · Full text
PURPOSE: This study aims to assess the content validity, face validity and comprehensiveness of the: (a) EQ-5D-5L, EQ-HWB, and ASCOT SCT4, for adults with rare genetic conditions; (b) the EQ-5D-5L, EQ-HWB, and ASCOT-care...
PURPOSE: This study aims to assess the content validity, face validity and comprehensiveness of the: (a) EQ-5D-5L, EQ-HWB, and ASCOT SCT4, for adults with rare genetic conditions; (b) the EQ-5D-5L, EQ-HWB, and ASCOT-carer for carers of adults or children with rare genetic conditions; and (c) the EQ-5D-Y-5L carer proxy-complete for children with rare genetic conditions. METHODS: In total, 60 qualitative think-aloud interviews were conducted in Australia and England to understand individuals' thought process during the completion of the QoL measures. Participants were subsequently led through a semi-structured discussion. Transcripts were analysed for whether participants demonstrated understanding of the measures and thematic analysis was conducted on responses to the semi-structured discussion. RESULTS: The majority of participants showed good understanding and supported the validity of the measures for people experiencing rare conditions. For carers, however, a broader evaluative space than health-related QoL was preferred. Several non-health domains were identified as important to both patients and carers, including treatment availability, impact on employment and finance, information and uncertainty, medication and carer burden, impact of passing on a condition, relationships and social connection, and experience with the healthcare system. CONCLUSION: This study provides some support for the face validity and comprehensiveness of the measures for people experiencing rare conditions. However, several participants felt that the narrow health domains were inadequate to capture the breadth of their lived experience. Future research should explore the extent to which the measures capture differences and changes in the QoL domains identified as important to patients and carers.
Explaining inequalities in quality of life: a longitudinal study of health disparities in Norway.
Olsen JA, Chen G, Løvsletten O
Qual Life Res · 2026 Jun · PMID 42365548 · Full text
PURPOSE: Studies of health inequalities often examine the association between a single health indicator and a single socioeconomic indicator. Recent research has increasingly explored social disparities in self-reported...
PURPOSE: Studies of health inequalities often examine the association between a single health indicator and a single socioeconomic indicator. Recent research has increasingly explored social disparities in self-reported quality of life. However, most evidences are based on cross-sectional survey and the role of health behaviours is frequently overlooked in these analyses. This study aims to integrate broader sets of socioeconomic and behavioural variables to better explain health disparities that emerge in later adulthood. METHODS: Using longitudinal data from the Norwegian population-based Tromsø Study, we followed 11,313 adults aged 25-54 at baseline over 21 years. A series of self-reported outcomes were studied, particularly EQ-5D-5L values, EQ-VAS scores, and Self-Rated Health. Predictors included three socioeconomic indicators (childhood living standard, own and spouse's educational attainment) and three health behaviours (smoking, physical activity, obesity). Shapley value decompositions were used to quantify each predictor's contribution to explained variance. RESULTS: For all three health outcomes, health behaviours accounted for the majority of the explained variance compared to socioeconomic factors: 80% for EQ-5D-5L, 75% for EQ VAS, and 67% for Self-Rated Health. When adjusting for differences in baseline health, the relative importance of health behaviours increased slightly. CONCLUSION: This study underscores the critical role of health behaviours in explaining inequalities in quality of life, providing new insights into the mechanisms driving these disparities. While preventing childhood deprivation would have significant impact on adult health, potential health benefits of promoting healthy behaviours are substantial. Both types of policy interventions could thereby contribute to reducing health inequalities.
Eligibility definitions and response rate accuracy in studies using routinely collected PROMs: a systematic review.
Laine J, Kankaanpää E
Qual Life Res · 2026 Jun · PMID 42348127 · Full text
PURPOSE: Patient reported outcome measures (PROMs) are increasingly used to assess treatment outcomes and quality of care. This systematic review examined how eligible populations and response rates (RRs) were reported i...
PURPOSE: Patient reported outcome measures (PROMs) are increasingly used to assess treatment outcomes and quality of care. This systematic review examined how eligible populations and response rates (RRs) were reported in published studies using routinely collected PROMs. METHODS: A systematic literature search in the PubMed, Scopus, Web of Science, Cinahl, PsycINFO and Cochrane library databases on Jan 15, 2024, and Feb 10, 2025, focused on studies employing routinely collected PROM data in research. Articles not related to a health care context were excluded. Definitions of eligibility were categorized as "all treated", "all recruited" or "other". RRs were obtained at baseline (BL) and the last follow-up (FU), and their accuracy was assessed according to the eligibility definitions. RESULTS: From 3806 abstracts and 344 full-text articles, 92 articles (94 datasets) were included. Eligibility was defined as "all treated" in 26% of the studies and as "all recruited or "other" in 41% and 33%, respectively. Authors frequently fail to apply their own eligibility definitions in RR calculations, leading to incorrect RRs in 47% of datasets due to incomplete eligible populations or flawed denominator choices. Only 5% of studies clearly defined RRs. RR values varied widely. The systematic use of a defined eligible population was linked to a decline in average RRs over the FU. CONCLUSION: These findings suggest that inaccurate eligibility definitions and denominator use may bias RRs, limiting the reliability of PROM data. Although PROM datasets are increasingly used, data quality remains underdiscussed. This review highlights the need to improve the reporting of eligibility and RRs while using routinely collected PROMs. PROTOCOL REGISTRATION: PROSPERO CRD42023494821.
Designing oncology-specific patient-reported outcome dashboards: end-user preferences for reference curve inclusion and visualization in pediatric cancer care.
Alkirawan R, Schepers SA, van Litsenburg RRL … +1 more , Grootenhuis MA
Qual Life Res · 2026 Jun · PMID 42347858 · Full text
PURPOSE: Patient Reported Outcome Measures PROMs are essential for monitoring health-related quality of life (HRQoL) in pediatric oncology. In the Netherlands, the KLIK PROM portal facilitates structured HRQoL communicat...
PURPOSE: Patient Reported Outcome Measures PROMs are essential for monitoring health-related quality of life (HRQoL) in pediatric oncology. In the Netherlands, the KLIK PROM portal facilitates structured HRQoL communication between healthcare professionals (HCPs) and families. Currently, HRQoL scores are compared to general population norms. Children with cancer face unique challenges; comparisons with the general population alone may aggravate perceived difficulties and create unnecessary discomfort. An oncology-specific reference would provide appropriate clinical context and improve interpretability. This study evaluated end-user preferences for the inclusion and visualization of such a reference curve within the portal. METHOD: Four focus groups with 13 HCPs, 6 patient interviews, and 12 interviews with 15 parents (including three interviews with both parents) were conducted for this qualitative study. Participants discussed preferences for adding and visualizing an oncology-specific reference curve. NVIVO was used to code transcripts and support thematic analysis. RESULTS: All end-users, except three parents, valued the integration of an oncology-specific reference curve. Three major themes emerged regarding visualization preferences: (1) Normalization: Most participants preferred focusing on normal outcomes, with graphs showing a broad range of - 2 to + 2 SD in a neutral color (e.g. blue).; (2) Deficit-focused framing: end-users opposed overemphasizing deviations (e.g. the potential emotional impact of using traffic light colors); (3) Customization: end-users favored a switch option to tailor curves to patients' needs. CONCLUSION: End-users preferred a customizable oncology-specific reference curve enabling fair peer comparison without distressing visuals. Future implementation should focus on training HCPs to support patient-centered communicate of the new dashboard in clinical practice.
Concerns about "a direct comparison of the measurement properties of the PROMIS-16 and EQ-5D-5L in the U.S. general population".
Zeng C, Hays RD, Edelen MO
Qual Life Res · 2026 Jun · PMID 42347852 · Publisher ↗
In this commentary, we expressed concerns about the design and findings of a recent study that directly compared the measurement properties of PROMIS-16 and EQ-5D-5 L in the U.S. general population.
In this commentary, we expressed concerns about the design and findings of a recent study that directly compared the measurement properties of PROMIS-16 and EQ-5D-5 L in the U.S. general population.
Factors associated with self-care engagement among oesophageal and gastric cancer survivors: a population-based cross-sectional study.
Färnqvist K, Färnqvist S, Johar A … +2 more , Schandl A, Lagergren P
Qual Life Res · 2026 Jun · PMID 42334670 · Full text
BACKGROUND: Survivors of oesophageal and gastric cancer frequently experience persistent symptoms and functional limitations that affect their health-related quality of life (HRQL). Although self-care is increasingly rec...
BACKGROUND: Survivors of oesophageal and gastric cancer frequently experience persistent symptoms and functional limitations that affect their health-related quality of life (HRQL). Although self-care is increasingly recognised as a central component of survivorship care, little is known about what determines self-care engagement or whether engagement is associated with better HRQL. This study examined the sociodemographic and healthcare-related variables associated with self-care engagement and explored its association with global quality of life (QOL) in a nationwide cohort. METHODS: A cross-sectional survey was conducted among individuals diagnosed with oesophageal or gastric cancer in Sweden between 2021 and 2023. Participants completed the EORTC QLQ-C30 and a study-specific questionnaire assessing symptoms and self-care. Self-care engagement was operationalised as the ratio of self-care strategies used to the number of symptoms experienced and categorised into no, moderate, and high. Factors associated with self-care engagement were analysed using multinomial logistic regression, and the association between self-care engagement and global QOL was assessed using linear regression, adjusting for sociodemographic and clinical confounders. RESULTS: Of the 432 respondents, 422 reported at least one symptom and were included in the self-care analysis. One-third of the participants reported no self-care engagement, whereas two-thirds reported moderate or high engagement. Across all models, university education was the strongest and only consistent variable associated with self-care engagement (high vs. no self-care engagement: odds ratio 2.83, 95% confidence interval 1.48-5.42). Neither assignment of a designated contact nurse nor proximity to the treating hospital was associated with self-care engagement. Participants with high self-care engagement had substantially better global QOL than those with moderate or no self-care engagement, with mean differences exceeding 10 points on a 0-100 scale. Global QOL did not differ between the moderate and no self-care groups. CONCLUSIONS: Self-care engagement varies widely among oesophageal and gastric cancer survivors and appears to be influenced by educational level. High self-care engagement is associated with clinically meaningful improvements in global QOL, whereas no or moderate self-care appears insufficient to confer benefits. These findings suggest an equity gap in survivorship care, and future research should explore the development of structured and accessible interventions to enhance self-care capabilities among patients with lower educational attainment.
Associations influencing quality of life in caregivers of patients with amyotrophic lateral sclerosis: a stress-process model approach.
Turkmenel N, Uskun E
Qual Life Res · 2026 Jun · PMID 42334507 · Full text
BACKGROUND: Caring for patients with amyotrophic lateral sclerosis (ALS) involves demands that reduce caregivers' quality of life. Although caregiver burden and perceived social support was conceptualized as an independe...
BACKGROUND: Caring for patients with amyotrophic lateral sclerosis (ALS) involves demands that reduce caregivers' quality of life. Although caregiver burden and perceived social support was conceptualized as an independent correlate of quality of life rather than a factor operating primarily through caregiver burden. This study examined these associations within a stress-process framework in which perceived social support was conceptualized as an independent correlate rather than a buffering factor. METHODS: This cross-sectional analytical study included 118 informal caregivers of patients with ALS. Primary stressors were defined as patient functional status (ALSFRS-R), caregiving duration, and communication difficulty. Caregiver burden (Zarit Burden Interview) was considered a secondary stressor. Physical and mental quality of life were assessed using the SF-12, and perceived social support was measured with the Multidimensional Scale of Perceived Social Support. Hierarchical regression analyses were performed to examine associations specified in the conceptual model while controlling for caregiver sociodemographic and socioeconomic variables. Additional mediation analyses were conducted to examine whether caregiver burden mediated the relationship between perceived social support and quality of life. RESULTS: Poorer patient functional status was significantly associated with higher caregiver burden, whereas communication difficulty showed a positive but non-significant association after adjustment for caregiver characteristics. Caregiver burden showed negative associations with both physical and mental quality of life. Perceived social support remained positively associated with quality of life after adjustment for caregiver burden and contributed additional explained variance in the models. Mediation analyses showed no evidence that caregiver burden mediated the association between perceived social support and either physical or mental quality of life. CONCLUSIONS: The findings are consistent with a stress-process framework in ALS caregiving, in which caregiver burden represents a central factor statistically associated with both caregiving stressors and quality of life, while perceived social support shows an independent association with quality of life. These findings suggest that both caregiver burden and perceived psychosocial resources may be relevant to caregiver well-being, although causal and intervention-related implications require further investigation.
Understanding determinants of patient-reported outcome measure non-response among transgender and gender diverse individuals: an intersectional multilevel analysis of sociodemographic and structural vulnerabilities.
Kaur MN, Jain M, Dey T … +10 more , Huerta DT, Meyers P, Zeng C, Dragonetti BM, DeAngelo MR, Schuster C, Lessani MN, Li Z, Pusic A, Edelen M
Qual Life Res · 2026 Jun · PMID 42329493 · Publisher ↗
PURPOSE: Patient-reported outcome measures (PROMs) are increasingly integrated into routine clinical care and value-based accountability frameworks, yet systematic non-response may exclude structurally marginalized popul...
PURPOSE: Patient-reported outcome measures (PROMs) are increasingly integrated into routine clinical care and value-based accountability frameworks, yet systematic non-response may exclude structurally marginalized populations, including transgender and gender diverse (TGD) individuals. This study examined individual- and neighborhood-level predictors of non-response to the PROMIS Global Health (PROMIS-10) questionnaire among TGD individuals using an intersectional multilevel framework. METHODS: We conducted an observational cohort study used electronic health record data from 2015 to 2023 within a large U.S. healthcare system. TGD adults (≥18 years) assigned the PROMIS-10 during clinical encounters were included. PROM non-response was defined as a questionnaire assigned but not completed. Multivariable regression evaluated sociodemographic predictors, and multilevel analysis of individual heterogeneity and discriminatory accuracy quantified variance across intersectional strata. Structural predictors included segregation (Delta Index) and Social Vulnerability Index (SVI). RESULTS: Non-response at encounter level was high among 7528 TGD patients (85.8%; 95% CI 84.2-87.4). Older age (≥ 36 years; β = 3.3; 95% CI 1.12-5.50) and lower educational attainment (β = 3.23; 95% CI 1.05-5.41) were associated with increased non-response, while insurance type was not associated and ethno-racial identity showed a small, non-significant increase after adjustment. Intersectional strata explained only 1% of variance in non-response, decreasing to 0.3% after adjustment. Higher segregation (Delta Index; β = 10; 95% CI 4.0-17.0) and residence in the highest vulnerability areas (SVI > 0.75; β = 7.9; 95% CI 0.6-15.0) predicted greater non-response. CONCLUSIONS: PROM non-response among TGD individuals reflects individual and structural inequities. Equity-centered PROM implementation strategies are needed to prevent systematic exclusion from outcome-based evaluation.
Proceedings of the advancing patient-centred outcomes down under conference, Sydney 2025.
Roydhouse J, Campbell R, Cox I … +5 more , Hawkins M, Norman A, Ramsey I, Walkley E, Mulhern B
Qual Life Res · 2026 Jun · PMID 42329484 · Publisher ↗
Abstract loading — click title to view on PubMed.
Factors associated with response to patient-reported outcome measures: a systematic review of systematic and scoping reviews, and meta-analyses.
Peters ST, Rutten J, van Kooij YE … +4 more , Selles RW, Slijper HP, Hand-Wrist Study Group, Wouters RM
Qual Life Res · 2026 Jun · PMID 42329271 · Full text
PURPOSE: This study aimed to identify and synthesize factors associated with response to digitally collected patient-reported outcome measures (PROMs) among adult patients, to inform efforts to improve response rates. ME...
PURPOSE: This study aimed to identify and synthesize factors associated with response to digitally collected patient-reported outcome measures (PROMs) among adult patients, to inform efforts to improve response rates. METHODS: We performed a systematic review of systematic and scoping reviews across five databases. Risk of bias was assessed using A MeaSurement Tool To Assess Systematic Reviews (AMSTAR) and included in a best-evidence synthesis. Additionally, a meta-analysis was conducted using the primary studies from the included reviews that specifically reported on digitally collected PROMs. RESULTS: We identified 43 factors positively, negatively, or not associated with response to digital PROMs, clustered in six domains. Some were modifiable, including the overload or overlap of questions, PROMs irrelevant to the patient, automatic reminders, system usability, and clinicians' follow-up with PROMs. Others were non-modifiable, such as race, language barriers, visual impairments, and comorbidities; many of these factors are shaped by patients' broader social and health-related circumstances and may therefore point to underlying structural or contextual barriers (e.g., limited access to resources, lower literacy, or health-related limitations). Such barriers may ultimately contribute to unequal access to care and are potentially actionable. CONCLUSIONS: Factors associated with response to digitally collected PROMs can be clustered into six domains: sociodemographic characteristics, physical health, psychosocial status, PROM characteristics, technological factors, treatment characteristics, and external influences. Although not all factors are directly modifiable, they can inform targeted and tailored interventions to improve response rates across diverse populations and support more equitable access to care. This review provides a structured overview to guide such efforts. Potential interventions could include language simplification, item reduction, follow-up during consultation, tailored reminders, and interface adaptations for patients with specific needs.
Symptom burden in cancer survivorship: insights from a survivorship program's patient-reported outcomes database.
Tlusty GC, Choi E, Alsbrook K … +6 more , Gilmore KR, Rollins J, Dains J, Fadol A, Roth ME, Hacker ED
Qual Life Res · 2026 Jun · PMID 42319622 · Full text
PURPOSE: This study aimed to examine the symptom burden reported by survivors treated in survivorship clinics by describing the severity of symptoms and symptom interference with life activities, comparing symptom severi...
PURPOSE: This study aimed to examine the symptom burden reported by survivors treated in survivorship clinics by describing the severity of symptoms and symptom interference with life activities, comparing symptom severity by sex, and identifying predictors of the three most prevalent moderate to severe symptoms. METHODS: This secondary data analysis examined patient-reported symptom burden data using the MD Anderson Symptom Inventory collected for clinical purposes from January to December 2023. Sex differences in symptom burden were compared using t-tests. Multivariate logistic regressions identified predictors of the three most prevalent moderate to severe symptoms. RESULTS: Among 2550 survivors (mean age 61.9 ± 12.1 years; 69.9% female, 36.4% breast cancer), the average time in survivorship care was 4.04 ± 4.00 years. Over 75% of survivors reported experiencing ≥ 1 symptom, and 45% reported ≥ 1 moderate-severe symptom. The three most prevalent moderate to severe symptoms were fatigue (25%), sleep disturbance (24%), and problems remembering (15%). Compared with males, females reported significantly more symptoms (p < 0.05) and more moderate to severe symptoms (p < 0.01). Female survivors and those under the age of 65 were more likely to report moderate to severe fatigue, sleep disturbance, and problems remembering (all p < 0.01). CONCLUSION: The high prevalence of persistent symptoms among cancer survivors in this sample supports the need for routine symptom assessments in survivorship care. Age and sex are important considerations in tailoring supportive interventions. As the population of cancer survivors grows, understanding symptom burden across diagnoses is critical to inform effective supportive care strategies.
Cough, dyspnea, or chest pain? an examination of the composite endpoint in metastatic non-small cell lung cancer clinical trials.
Mamolo C, Holt T, Castro Sanchez AY
Qual Life Res · 2026 Jun · PMID 42319550 · Publisher ↗
PURPOSE: Many clinical trials of metastatic non-small cell lung cancer (mNSCLC) include a composite endpoint of cough, chest pain and dyspnea to assess patient-reported symptomatic deterioration using time-to-confirmed d...
PURPOSE: Many clinical trials of metastatic non-small cell lung cancer (mNSCLC) include a composite endpoint of cough, chest pain and dyspnea to assess patient-reported symptomatic deterioration using time-to-confirmed deterioration (TTCD) analyses. We sought to determine the robustness of this composite, and whether composites involving other patient-relevant symptoms of mNSCLC are more sensitive to progression. METHODS: Data from nine mNSCLC trials with the EORTC QLQ-C30 and QLQ-LC13 were pooled. Spearman's correlation coefficients were used to assess associations between symptoms. Composites were evaluated based on the number of confirmed deterioration (CD) events, median TTCD, and positive predictive value (PPV) against progression-free survival (PFS). RESULTS: 5,157 patients with mNSCLC with at least one PRO assessment were included. Cough and dyspnea were frequently reported at baseline (79.8% and 67.8%, respectively) and moderately correlated (0.37), while chest pain was less common (41.5%) and showed weaker associations. The composite of cough, chest pain, and dyspnea had a median TTCD of 8 three-week treatment cycles and PPV of 78.3%. Composites including symptoms such as fatigue and general pain reached median TTCD earlier while maintaining high PPVs (78.3-81.3%). The median TTCD for single-item dyspnea was 50 cycles but was not reached for cough and chest pain. CONCLUSIONS: The composite of cough, chest pain, and dyspnea displayed strong properties; however, composites obscure the time course of included symptoms. Although median TTCD is reached earlier with a composite endpoint, greater clarity is obtained when symptoms are studied individually.
Health-related quality of life experiences in children with bladder exstrophy-epispadias complex: a Swedish focus group study.
Svenninghed U, Öst E, Holmdahl G … +4 more , Örtqvist L, Boije M, Sjöström S, Blom MD
Qual Life Res · 2026 Jun · PMID 42319546 · Full text
PURPOSE: Bladder exstrophy-epispadias complex (BEEC) is a rare urogenital malformation. Children risk long-term urinary and genital dysfunction. The study aimed to describe health-related quality of life (HRQoL) experien...
PURPOSE: Bladder exstrophy-epispadias complex (BEEC) is a rare urogenital malformation. Children risk long-term urinary and genital dysfunction. The study aimed to describe health-related quality of life (HRQoL) experiences among children with BEEC and ultimately guide the development of a BEEC-specific HRQoL questionnaire. METHODS: Ten focus groups stratified by child age and sex were conducted in Sweden with 15 children aged 8-18, and 23 parents of children aged 2-17. Sessions were moderated, audio-recorded and transcribed verbatim. Reports of children's BEEC-related HRQoL were extracted and content analyzed into categories sharing a common feature. RESULTS: 1713 statements of the child's HRQoL (1076 from parents, 637 from children) were identified and grouped into seven HRQoL categories. Somatic experiences/Physical consequences due to BEEC reflected experiences of urgency, leakage, smell, infections, pain/discomfort and bodily variations. Living with the choice of whether or not to be open described children's decision-making about revealing BEEC to others. Social relationships highlighted the importance of peers and articulated social vulnerability. Adaptational needs due to bladder dysfunction included special needs in relation to the night-time, time schedules and clothing. Functioning in environments outside home included experiences with public toilets, school and leisure activities. Psychological impact encompassed emotional consequences and perceptions of different appearance. Growing up with BEEC included thoughts about sexuality, parenthood, the future and independence. CONCLUSION: This first-reported focus group study in children with BEEC reveals physical, psychological, and social impacts across life domains. These findings justify and enable development of a disease-specific HRQoL questionnaire for children with BEEC.
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