Health and Quality of Life Outcomes最新文献

{"title":"Perfect health not so perfect after all - a methodological study on patient-reported outcome measures in 2574 patients following percutaneous coronary intervention.","authors":"T M Norekvål, M M Iversen, K Oterhals, H Allore, B Borregaard, T R Pettersen, D R Thompson, A D Zwisler, K Breivik","doi":"10.1186/s12955-025-02360-4","DOIUrl":"10.1186/s12955-025-02360-4","url":null,"abstract":"<p><strong>Background: </strong>Patient-reported outcome measures (PROMs) are crucial to capture patients' health and illness status. Selecting the most suitable PROM to measure self-reported health in a specific study population is essential. Shortcomings of much used generic instruments have been identified in certain populations, and more investigation is needed to clarify the extent to which the generic instruments capture the aspects of health that really matter to patients. Therefore, the aim of this study was to determine floor and ceiling effects of a generic health utility instrument (EQ-5D-5L) in an international multi-centre cohort of patients after percutaneous coronary intervention (PCI) and further explore those with perfect health scores by using a disease-specific instrument.</p><p><strong>Methods: </strong>The CONCARD^PCI study was conducted at seven large referral PCI centres in Norway and Denmark between June 2017 and May 2020. In all, 2574 unique patients were available for this analysis. The generic EQ-5D-5L descriptive system and visual analogue scale, and the disease-specific Myocardial Infarction Dimensional Assessment Scale (MIDAS) comprising 35 items measuring seven areas of health status and daily life challenges were used to scrutinize the aims. Latent class analyses were conducted to identify classes with similar patterns of daily life challenges based on MIDAS item scores within the group of patients with best possible EQ-5D-5L score ('perfect scorers').</p><p><strong>Results: </strong>There was a large ceiling effect on the EQ-5D-5L score in patients with coronary artery disease (CAD) with 32% scoring the best possible EQ-5D-5L score, suggesting perfect health. Latent class analysis on the MIDAS revealed, however, four classes where 17-46% of the perfect scorers did perceive challenges in health, particularly related to symptoms of fatigue, and worries about risk factors and side effects of medication.</p><p><strong>Conclusion: </strong>To obtain an accurate picture of patients' health status, these results emphasize that both generic and disease-specific patient-reported outcomes measures are needed to capture the distinct problems that patients with CAD experience after PCI. Caution should be made when using the EQ-5D-5L as the sole measure, particularly in priority settings, due to its potential ceiling effect and the fact that important aspects of patient health may be neglected.</p><p><strong>Trial registration: </strong>NCT03810612.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"35"},"PeriodicalIF":3.2,"publicationDate":"2025-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11972467/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143788301","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Association of post-stroke hemiplegic shoulder pain with sleep quality, mood, and quality of life.","authors":"Marzieh Khatooni, Leila Dehghankar, Fatemeh Samiei Siboni, Mahdieh Bahrami, Mahya Shafaei, Rahman Panahi, Mohamad Amerzadeh","doi":"10.1186/s12955-025-02367-x","DOIUrl":"10.1186/s12955-025-02367-x","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Hemiplegic Shoulder Pain (HSP) is a prevalent post-stroke complication, characterized by paralysis, spasticity, altered sensation, neuropathic pain, shoulder subluxation, and soft tissue injuries such as rotator cuff tears and bicipital tendonitis. Muscle imbalances, weakness, and altered scapular positioning further contribute to the exacerbation of HSP. These factors lead to poorer functional outcomes, reduced hand function, and difficulties in performing daily activities. HSP is often associated with substantial mental and physical health burdens. The disorder significantly impacts the rehabilitation process, as evidenced by the negative effects it can have on quality of life (QoL), sleep quality, and mental status.This study aimed to determine the relationships between pain intensity, sleep quality, depressive symptoms and QoL in patients with post-stroke HSP.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;This study was a cross-sectional survey of patients with chronic post-stroke HSP. The study included 164 patients who were referred to physiotherapy, rehabilitation, and neurology clinics for palliative and rehabilitative care. Demographic data, pain intensity (Numeric Pain Rating Scale, NPRS), QoL (SF- 36), sleep quality (Pittsburgh Sleep Quality Index, PSQI), and depression (Beck Depression Inventory-II, BDI-II) were assessed.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Participants exhibited low QoL, with a mean SF- 36 score of 46.25 ± 4.21. The mean and standard deviation for depression, sleep quality, and pain intensity were 12.375 ± 3.569 (moderate level), 9.901 ± 3.213 (relatively low level), and 4.689 ± 2.547 (moderate level), respectively. The variables of sleep quality, depression, pain intensity, education level, and duration of HSP were found to be significant predictors of QoL (P &lt; 0.05). Individuals experiencing intense and moderate pain had 0.538 and 0.605 times the likelihood of having a favorable QoL, respectively, compared to those with mild pain. Similarly, individuals with intense and moderate depression had 0.461 and 0.551 times the likelihood of achieving a favorable QoL compared to those without depression. Participants with a diploma or university degree (OR: 2.475) were more likely to have a favorable QoL than those who were illiterate. Additionally, individuals who had experienced HSP for more than one year had 0.631 times the likelihood of achieving a favorable QoL compared to those whose HSP duration was less than one year. Regarding functional independence, individuals who were completely dependent and semi-dependent in performing daily activities had 0.391 and 0.462 times the likelihood of having a favorable QoL, respectively, compared to those who were completely independent.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;Post-stroke HSP patients exhibited significant shoulder pain, depression, and poor sleep quality, leading to reduced QoL. Factors such as duration of HSP, sleep quality, depression, pain intensity, ","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"32"},"PeriodicalIF":3.2,"publicationDate":"2025-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11972523/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143788214","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Psychosocial factors associated with quality of life in cancer patients undergoing treatment: an umbrella review.","authors":"Chiara Marzorati, Viktorya Voskanyan, Diana Sala, Roberto Grasso, Federico Borgogni, Ricardo Pietrobon, Iris van der Heide, Merel Engelaar, Nanne Bos, Augusto Caraceni, Norbert Couspel, Montse Ferrer, Mogens Groenvold, Stein Kaasa, Claudio Lombardo, Aude Sirven, Hugo Vachon, Alexandra Gilbert, Cinzia Brunelli, Giovanni Apolone, Gabriella Pravettoni","doi":"10.1186/s12955-025-02357-z","DOIUrl":"10.1186/s12955-025-02357-z","url":null,"abstract":"<p><strong>Background: </strong>Cancer treatment greatly impacts physical and psychological functioning of cancer patients, negatively affecting their quality of life (QoL). This Umbrella Review (UR) aims to systematically summarize psychological and social factors positively or negatively associated with QoL in cancer patients undergoing treatment.</p><p><strong>Method: </strong>Four scientific databases (PubMed, Embase, Scopus, and PsycInfo) were searched to identify systematic reviews between 2012 and 2023 analyzing the relationship between QoL and psychosocial factors in cancer patients in treatment. The UR was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) and Joanna Briggs Institute (JBI) review guidelines. The methodological quality of the included studies was evaluated using Assessment of Multiple Systematic Reviews 2 (AMSTAR2).</p><p><strong>Results: </strong>Eighteen systematic reviews were included. The major psychological factors influencing QoL are depression, coping strategies, anxiety, and distress. Results also demonstrate the significant impact of social factors on QoL: perceived social support has a positive influence on QoL of cancer patients, while lowered social support, impaired social functioning, interactions, and role limitations worsen their QoL and overall well-being.</p><p><strong>Conclusion: </strong>This UR provides a comprehensive overview of the psychosocial factors impacting QoL of cancer patients and serves as a prominent base for developing questionnaires and policies aimed at measuring QoL in cancer patients undergoing treatment. Moreover, the findings of the study can guide future research or the development of personalized clinical interventions aimed at improving QoL for this cancer population group.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"31"},"PeriodicalIF":3.2,"publicationDate":"2025-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11971742/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143788304","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Comparison of different approaches in handling missing data in longitudinal multiple-item patient-reported outcomes: a simulation study.","authors":"Minqian Yan, Lizhi Zhou, Chongye Zhao, Chen Shi, Chunquan Ou","doi":"10.1186/s12955-025-02364-0","DOIUrl":"10.1186/s12955-025-02364-0","url":null,"abstract":"<p><strong>Background: </strong>Patient-reported outcomes (PROs) are important clinical outcomes widely used as primary and secondary endpoints in clinical studies. However, PRO data often suffers from missing values for various reasons, which pose challenges to data analysis. This simulation study aimed to compare the performance of existing state-of-the-art approaches in handling missing PRO data.</p><p><strong>Methods: </strong>Using a real and complete multiple-item PRO dataset, we generated various missing scenarios with different missing rates, mechanisms, and patterns. The performances of eight methods were compared, including a mixed model for repeated measures (MMRM) with and without imputation at the item level, multiple imputation by chained equations (MICE) at the composite score and item levels, and three control-based pattern mixture models (PPMs) and the last observation carried forward (LOCF) imputation at the item level.</p><p><strong>Results: </strong>We found that the bias (i.e., deviation of the estimated from the true value) in the treatment effect estimates increased, and the statistical power diminished as the missing rate increased, especially for monotonic missing data. Item-level imputation led to a smaller bias and less reduction in power than composite score-level imputation. Except for cases under missing-not-at-random mechanisms (MNAR) and with a high proportion of patients' entire questionnaire missing, MMRM imputation at the item level demonstrated the lowest bias and highest power, followed by MICE imputation at the item level. The PPM methods were superior to the other methods under MNAR mechanisms.</p><p><strong>Conclusions: </strong>PPMs imputation at the item level was preferable for MNAR, whereas MMRM and MICE imputation at the item level were better for other scenarios. These findings provide valuable insight for selecting appropriate methods for handling missing PRO data.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"34"},"PeriodicalIF":3.2,"publicationDate":"2025-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11972534/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143788331","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Does adjuvant chemotherapy result in poorer health-related quality of life among colorectal cancer patients? A longitudinal multisite observational study in Singapore.","authors":"Jerrald Lau, Cherie Hui Peh, Alyssa Ng, Wei-Ling Koh, Nan Luo, Ker-Kan Tan","doi":"10.1186/s12955-025-02363-1","DOIUrl":"10.1186/s12955-025-02363-1","url":null,"abstract":"<p><strong>Background: </strong>Research on health-related quality of life (HRQOL) using minimally important differences for cancer care in Asian settings are sparse. This study aimed to describe functional HRQOL trajectories among Colorectal Cancer (CRC) patients undergoing adjuvant chemotherapy (AC) compared to those who did not (No AC), evaluate if AC was associated with change in HRQOL prospectively, and examine QOL differences between elderly and non-elderly CRC patients requiring AC.</p><p><strong>Methods: </strong>CRC patients diagnosed between February 2018 to August 2021 were recruited from three Singapore public hospitals. Participants completed the EORTC QLQ-C30 over seven timepoints (diagnosis, predischarge, 1-, 3-, 6-, 9-, 12-months post-surgery). Clinical characteristics were collected from electronic medical records.</p><p><strong>Results: </strong>The sample comprised 251 participants (102 in AC group; 40.64%). Clinically relevant deteriorations in functional HRQOL were observed in both groups between baseline and predischarge. These returned to baseline by 12-month. AC was associated with poorer physical (β = -35.34, p < 0.05) and role functioning (β = -71.17, p < 0.05) over time. Being elderly was associated with poorer physical functioning (β = -0.44, p < 0.05) over time. However, the non-elderly AC subgroup tended to experience poorer HRQOL in general compared to elderly.</p><p><strong>Conclusions: </strong>Functional recovery remains a challenge for CRC patients in general. However, non-elderly AC patients may experience more severe impacts to role and social functioning.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"30"},"PeriodicalIF":3.2,"publicationDate":"2025-04-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11971881/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143788338","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The EQ-5D and EQ-HWB fit the perceptions of quality of life from a Chinese perspective: a concept mapping study.","authors":"Yifan Ding, Zhuxin Mao, Zhihao Yang, Siliu Feng, Jan Busschbach","doi":"10.1186/s12955-025-02361-3","DOIUrl":"10.1186/s12955-025-02361-3","url":null,"abstract":"<p><strong>Background: </strong>The escalating globalization of health assessments underscores a pivotal challenge: Do Quality of Life (QoL) instruments, developed primarily in Western contexts, accurately reflect the perspectives of non-Western populations? This study evaluates the alignment of EQ-5D and EQ-HWB items with QoL dimensions identified in Chinese literature, and compares QoL perceptions between Chinese residents and those living abroad who may be influenced by Western values.</p><p><strong>Methods: </strong>This study employed three successive rounds of participant recruitment to refine the concept mapping process. Initially, 13 bilingual QoL experts in the Netherlands piloted the methodology, providing feedback on item translation and expression. Subsequently, 18 Chinese expatriates in the Netherlands, with partial education abroad, reviewed the revised materials to represent perspectives influenced by Western culture. Finally, 20 native Chinese residents, who were born and educated in China, formed the target group. Utilizing feedback from the pilot stage, a pool of 54 QoL items derived from Chinese literature, plus an additional eight from the EQ-HWB, were assembled. The Group Concept Mapping (GCM) method was used, with participants organizing the items to reflect their interrelationships. Data were analyzed via Groupwisdom™, an online tool supporting multidimensional scaling (MDS) and cluster analysis, culminating in visual cluster rating maps that highlighted the item associations and groupings.</p><p><strong>Results: </strong>In China, a five-cluster MDS map was identified: personal abilities, family and society, physical health, mental health, and self-cognition (stress value: 0.183), with physical health prioritized. Abroad, four clusters appeared: mental health, social connections, daily activities, and physical function (stress value: 0.185), prioritizing social connections. The EQ-5D missed the \"family and society\" cluster in China and \"social connections\" abroad. In contrast, the EQ-HWB covered all clusters in both groups.</p><p><strong>Conclusions: </strong>The EQ-5D items align well with the somatic and partially with the mental clusters, while the EQ-HWB also covers the adaptation cluster and the remaining mental cluster aspects. Both instruments reflect the QoL perceptions of Chinese individuals, although EQ-5D focuses more on health than overall well-being. Cultural differences affect priorities: participants in China value physical health most, whereas those abroad emphasize social connections.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"29"},"PeriodicalIF":3.2,"publicationDate":"2025-03-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11959868/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143752426","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Trends in racial and ethnic disparities in the health-related quality of life of older adults with breast cancer: a SEER-MHOS national database study.","authors":"Nicki Karimi-Mostowfi, Fang-I Chu, Trudy C Wu, Matthew J Farrell, Wisdom Akingbemi, Ann C Raldow","doi":"10.1186/s12955-025-02359-x","DOIUrl":"10.1186/s12955-025-02359-x","url":null,"abstract":"<p><strong>Purpose: </strong>To examine racial and ethnic disparities in Health-Related Quality of Life (HRQOL) in older adults with breast cancer, both pre- and post-diagnosis.</p><p><strong>Methods: </strong>Using the SEER-MHOS database, we included patients ≥ 65 years old with breast cancer who completed the Health Outcomes Survey within 24 months pre- and post-diagnosis, and who were non-Hispanic White, non-Hispanic Asian or Pacific Islander, non-Hispanic Black or African American, or Hispanic. HRQOL data was measured via the Physical and Mental Component Summary (PCS, MCS). Univariable and multivariable linear regression models were fitted to assess for potential disparities between races and ethnicities.</p><p><strong>Results: </strong>On univariable regression models, a numerical drop in mean scores of PCS and MCS was found among all racial/ethnic groups between pre- and post-diagnosis. Among patients in the pre-diagnosis cohort who would be diagnosed with stage IV breast cancer, race was found to be a predictor of PCS with overall significance (p = 0.04). On the local test, compared with Black individuals, White individuals had higher pre-diagnosis PCS scores (+ 13.32, p = 0.03). Race/ethnicity was not found to be a predictor in PCS or MCS scores otherwise.</p><p><strong>Conclusion: </strong>Among older patients diagnosed with stage IV breast cancer, White individuals had better physical HRQOL than Black patients' pre-diagnosis. The decrease in the numerical HRQOL scores of the physical domain in all groups post-diagnosis highlights the potential negative physical impact of breast cancer has on patients, demonstrating the need for determining the proper resources and support to improve physical HRQOL following diagnosis.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"28"},"PeriodicalIF":3.2,"publicationDate":"2025-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11948821/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143718664","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Fatigue is distinct from sleepiness and negatively impacts individuals living with obstructive sleep apnea (OSA): results from qualitative research of individuals with OSA.","authors":"Helene A Emsellem, Hilary H Colwell, John Cronin, Ronald H Farkas, Susan D Mathias","doi":"10.1186/s12955-025-02355-1","DOIUrl":"10.1186/s12955-025-02355-1","url":null,"abstract":"<p><strong>Background: </strong>We sought to identify important issues regarding symptoms and impacts of obstructive sleep apnea (OSA), to explore fatigue and sleepiness, and evaluate the content, clarity, and relevance of specific patient reported outcome (PRO) measures.</p><p><strong>Methods: </strong>Participants in the US with OSA and at least mild fatigue were studied. Individuals with positive airway pressure (PAP) therapy intolerance or current PAP refusal (non-PAP users) and those who initiated PAP within the past 12 months (PAP users) were identified and interviewed. Interviews included concept elicitation questions about symptoms and impacts of OSA. Participants then completed several PRO measures (the PRO Measurement Information System [PROMIS] Fatigue-8a, PROMIS Sleep-Related Impairment-8a, Epworth Sleepiness Scale [ESS], Patient-Global Impression of Severity of Fatigue [PGI-S Fatigue], and Patient Global Impression of Change in Fatigue [PGI-C Fatigue]) and were cognitively debriefed to evaluate their content, clarity, and relevance.</p><p><strong>Results: </strong>A total of 30 individuals with OSA (20 non-PAP and 10 PAP) were enrolled. In addition to fatigue (reported by 100%), sleepiness (75%), difficulty concentrating (85%), dry mouth/throat (60%), headaches (50%) and interrupted sleep (50%) were the most common symptoms reported by non-PAP users. Fifty-eight percent of non-PAP users rated fatigue as the most bothersome symptom; 5% rated sleepiness as the most bothersome. Among PAP users, the most common symptoms (prior to PAP use) in addition to fatigue (100%) were sleepiness (90%), difficulty concentrating (60%), dry mouth/throat (60%), headaches (50%), and interrupted sleep (50%). Fatigue was rated as most bothersome by 56% of PAP users; sleepiness was rated as the most bothersome by 22%. All participants mentioned fatigue and sleepiness separately, indicating they are considered distinct symptoms. In general, participants found the PRO measures to be relevant and clear, and results supported their content validity, clarity, and relevance.</p><p><strong>Conclusions: </strong>Fatigue was the most bothersome symptom reported by non-PAP and PAP users. Participants described fatigue as a distinct and different concept from excessive daytime sleepiness. Participants reported that their OSA symptoms negatively impact daily activities, functioning, work, and relationships. The PRO measures are clear and relevant for individuals with OSA and appropriate for use in both clinical and research settings.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"26"},"PeriodicalIF":3.2,"publicationDate":"2025-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11934705/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143700360","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A framework for extending the health-related quality adjusted life year by combining instruments.","authors":"Brendan Mulhern, Akanksha Akanksha, Richard Norman, Mina Bahrampour, Peiwen Jiang, Deborah Street, Rosalie Viney","doi":"10.1186/s12955-025-02352-4","DOIUrl":"10.1186/s12955-025-02352-4","url":null,"abstract":"<p><p>Current measurement systems focus mostly on health, and not on multiple constructs of quality of life outcomes (for example health and social outcomes) together. This means we don't capture all that is of value to those receiving treatments, and to society more broadly. Recent research has explored how to extend the quality adjusted life year (QALY) beyond a narrow focus on health-related quality of life (HRQoL) aiming to improve the allocation of scarce health and social care resources. Measures of different constructs, including the EuroQol-Health and Wellbeing (EQ-HWB), and different versions of the Adult Social Care Outcomes Toolkit (ASCOT) and ICEpop CAPability (ICECAP), have been developed. Another approach to extending the health focused QALY is to combine existing descriptive systems with different foci into a single instrument. This has the advantage of using available information and allowing trade-offs between the domains of the descriptive systems to be made explicit. The aim of this paper is to propose a framework to guide this approach and outline the methodological process for generating broader descriptive systems. The first section of the paper explains the framework for combining existing instruments and discusses advantages and disadvantages. Advantages include increasing measurement sensitivity to the wider combined quality of life (QoL) impacts of many interventions and using value sets encompassing preferences that are based on trade-offs across diverse constructs. This enables values informed by impacts on broader QoL with relevance across diverse populations, to be used. Disadvantages include theoretical limitations linked to the constructs of QoL included, and practical difficulties combining instruments. The second section of the paper describes the methodological process for generating combined descriptive systems. This includes how to identify which constructs of QoL could be included, and a description of the mixed methods work required to generate a descriptive system that is psychometrically valid, and appropriate for valuation. Combining constructs of QoL from existing instruments offers a promising way to extend the QALY that differs to developing instruments de novo. Future research can use the framework outlined to develop combined instruments and explore the feasibility and wider applicability of the approach, and the use of the instruments generated in resource allocation decision making.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"25"},"PeriodicalIF":3.2,"publicationDate":"2025-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11934538/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143700332","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Concept analysis of diabetes-related quality of life.","authors":"Anggi Lukman Wicaksana, Nuzul Sri Hertanti","doi":"10.1186/s12955-025-02354-2","DOIUrl":"10.1186/s12955-025-02354-2","url":null,"abstract":"<p><strong>Background: </strong>Quality of life (QoL) is a common indicator of outcomes in people living with diabetes, but the concept of diabetes-related QoL (DRQoL) remains unclear. Clarifying core knowledge of DRQoL was the goal of this paper.</p><p><strong>Methods: </strong>A concept analysis was conducted according to Walker and Avant's framework. A systematic search of the published literature was conducted between 2002 and 2022 based on resource availability, current relevancy, and the quality of recent studies. Three major databases were used to identify the attributes, antecedents, consequences, and measures for DRQoL. Only articles investigating DRQoL among adult or elderly people living with diabetes that were published in English in peer-reviewed journals were analyzed.</p><p><strong>Results: </strong>In total, 4342 articles were screened, and only 401 articles underwent eligibility assessment. A total of 183 articles were included in the analysis. Most (59.78%) of them were observational studies and DRQoL as a primary outcome. We identified four critical components of DRQoL: (a) general health, (b) diabetes-related satisfaction, (c) diabetes impact, and (d) diabetes self-management. The antecedents were classified according to their contributions to DRQoL as follows: 25 positive-induced, 4 neutral-based, and 19 negative-induced antecedents. The consequences of DRQoL were mortality risk, personal health, satisfaction with health care, hospitalization risk, and failure to return to work. The referents varied widely, and 32 tools were found for DRQoL measurement. Furthermore, 12 scales for disease-specific DRQoL and 17 tools for general QoL were identified.</p><p><strong>Conclusion: </strong>This paper provides a definition of DRQoL as well as its attributes, antecedents, consequences, and measures in adults with diabetes. The attributes of DRQoL included general health, diabetes-related satisfaction, diabetes impact, and diabetes self-management. A comprehensive understanding of DRQoL can improve the quality of care and can aid in the recognition of the needs of care among people living with diabetes.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"27"},"PeriodicalIF":3.2,"publicationDate":"2025-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11934748/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143700334","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}