Quality of Life Research最新文献

{"title":"Correction: Development of an ultra-short measure of eight domains of health-related quality of life for research and clinical care: the patient-reported outcomes measurement information system^Ⓡ PROMIS^Ⓡ-16 profile.","authors":"Maria Orlando Edelen, Chengbo Zeng, Ron D Hays, Anthony Rodriguez, Janel Hanmer, Judy Baumhauer, Judy Cella, Bryce B Reeve, Patricia M Herman","doi":"10.1007/s11136-024-03762-5","DOIUrl":"https://doi.org/10.1007/s11136-024-03762-5","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-08-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142081377","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Agreement between patient- and proxy-reported outcome measures in adult musculoskeletal trauma and injury: a scoping review.","authors":"Jochem H Raats, Noa H M Ponds, D T Brameier, P A Bain, H J Schuijt, D van der Velde, M J Weaver","doi":"10.1007/s11136-024-03766-1","DOIUrl":"https://doi.org/10.1007/s11136-024-03766-1","url":null,"abstract":"<p><strong>Purpose: </strong>Patient-reported outcome measures (PROMs) are widely used in medicine. As older adults, who may rely on a proxy caregiver for answers due to cognitive impairment, are representing an increasing share of the traumatically injured patient population, proxy-reported outcome measures (proxROMs) offer a valuable alternative source of patient-centered information although its association with PROMs is unclear. The objective of this scoping review is to discuss all available literature comparing PROM and proxROMs in adult patients with musculoskeletal trauma to guide future research in this field.</p><p><strong>Methods: </strong>The PRISMA extension for Scoping Reviews was used to guide this review. MEDLINE, Embase, Web of Science, and the Cochrane Central Register of Controlled Trials were searched without date limit for articles comparing PROM and proxROMs in setting of musculoskeletal trauma. Abstract and full-text screening were performed by two independent reviewers. Variables included study details, patient and proxy characteristics, and reported findings on agreement between PROMs and proxROMs.</p><p><strong>Results: </strong>Of 574 unique records screened, 13 were included. Patient and proxy characteristics varied greatly, while patients' cognitive status and type of proxy perspective were poorly addressed. 18 different PROMs were evaluated, mostly reporting on physical functioning and disability (nine, 50%) or quality of life (six, 33%). Injury- and proxy-specific tools were rare, and psychometric properties of PROMs were often not described. Studies reported moderate to good agreement between PROMs and proxROMs. There is less agreement on subjective outcome measures (e.g., depression score) compared to observable items, and proxy bias results in in worse outcomes compared to patient self-reports.</p><p><strong>Conclusion: </strong>Current literature, though limited, demonstrates moderate to good agreement between injured patients' self- and proxy-reports. Future studies should be mindful of current guidelines on proxy reporting when developing their studies and consider including neglected populations such as cognitively impaired patients to improve clinical validity.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-08-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142047100","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A systematic review of health state utility values for older people with acute myeloid leukaemia.","authors":"Elise Button, Hannah Carter, Nicole C Gavin, Thomas W LeBlanc, Nikki McCaffrey","doi":"10.1007/s11136-024-03734-9","DOIUrl":"https://doi.org/10.1007/s11136-024-03734-9","url":null,"abstract":"<p><strong>Purpose: </strong>Older people with acute myeloid leukaemia (AML) have a poor prognosis, reduced health-related quality of life (HRQoL) and require substantial healthcare resources. The objectives of this systematic review were to determine what health state utility values (HSUVs) are reported in the literature that can be used in economic evaluations of interventions for older people with AML, identify research gaps, and discuss directions for future research.</p><p><strong>Methods: </strong>The following databases were searched for studies published from inception until Feb 2023: PubMed, EMBASE, CINAHL, PsycINFO, Cochrane, and EconLit. Studies were included if they reported on HSUVs of people with AML >60 years, or HRQoL data that could be mapped to HSUVs using currently published algorithms.</p><p><strong>Results: </strong>Of 532 studies identified, 7 met inclusion (4 full studies and 3 conference abstracts). Twenty-eight potentially eligible studies were excluded as they did not report HRQoL measures in sufficient detail to be mapped to utility values. Included studies reported on health states of newly diagnosed disease (n=4 studies), intensive therapy (n=1 study), controlled remission (n=3 studies), and relapsed or refractory disease (n=2 studies). No studies reported on low intensity therapy or supportive care health states. Utility values were largely reported via the EuroQol and ranged from 0.535 (intensive therapy) to 0.834 (controlled remission).</p><p><strong>Conclusion: </strong>There are gaps in knowledge on HSUVs for older people with AML, particularly for certain treatment-related health states. Future articles should publish comprehensive HRQoL outcomes to enable use in economic evaluation.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142018390","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Effect of present state bias on minimal important change estimates: a simulation study.","authors":"Berend Terluin, Piper Fromy, Andrew Trigg, Caroline B Terwee, Jakob B Bjorner","doi":"10.1007/s11136-024-03763-4","DOIUrl":"https://doi.org/10.1007/s11136-024-03763-4","url":null,"abstract":"<p><strong>Purpose: </strong>The minimal important change (MIC) in a patient-reported outcome measure is often estimated using patient-reported transition ratings as anchor. However, transition ratings are often more heavily weighted by the follow-up state than by the baseline state, a phenomenon known as \"present state bias\" (PSB). It is unknown if and how PSB affects the estimation of MICs using various methods.</p><p><strong>Methods: </strong>We simulated 3240 samples in which the true MIC was simulated as the mean of individual MICs, and PSB was created by basing transition ratings on a \"weighted change\", differentially weighting baseline and follow-up states. In each sample we estimated MICs based on the following methods: mean change (MC), receiver operating characteristic (ROC) analysis, predictive modeling (PM), adjusted predictive modeling (APM), longitudinal item response theory (LIRT), and longitudinal confirmatory factor analysis (LCFA). The latter two MICs were estimated with and without constraints on the transition item slope parameters (LIRT) or factor loadings (LCFA).</p><p><strong>Results: </strong>PSB did not affect MIC estimates based on MC, ROC, and PM but these methods were biased by other factors. PSB caused imprecision in the MIC estimates based on APM, LIRT and LCFA with constraints, if the degree of PSB was substantial. However, the unconstrained LIRT- and LCFA-based MICs recovered the true MIC without bias and with high precision, independent of the degree of PSB.</p><p><strong>Conclusion: </strong>We recommend the unconstrained LIRT- and LCFA-based MIC methods to estimate anchor-based MICs, irrespective of the degree of PSB. The APM-method is a feasible alternative if PSB is limited.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142036764","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Life's Essential 8 and its association with osteoarthritis and disability: a cross-sectional study based on the NHANES 2005-2018 database.","authors":"Mi Chen, Yuebai Chen, Chao Li","doi":"10.1007/s11136-024-03769-y","DOIUrl":"https://doi.org/10.1007/s11136-024-03769-y","url":null,"abstract":"<p><strong>Purpose: </strong>Osteoarthritis (OA) often coexists with risk factors for cardiovascular disease (CVD), worsening symptoms and functional impairment. This cross-sectional study investigated the association between Life's Essential 8 (LE8) and disability in individuals with OA.</p><p><strong>Methods: </strong>Data from 8334 United States adults (aged ≥ 20) who participated in the 2005-2018 National Health and Nutrition Examination Survey (NHANES) with complete data on LE8 components and disability status were analyzed. LE8 components, including diet, physical activity (PA), nicotine exposure, sleep, body mass index (BMI), blood lipids, glucose, and blood pressure (BP), were scored on a 0-100 scale, categorizing cardiovascular health (CVH) as low, moderate, or high. Disability mainly caused by OA was assessed using a standardized physical functioning questionnaire. Association analyses were performed using multivariable logistic regression, adjusting for demographic, socioeconomic, lifestyle, and health-related covariates.</p><p><strong>Results: </strong>Individuals with CVH scores 10 points higher had a 15% lower prevalence of OA (95% CI 0.81-0.90). Individuals with OA were more than twice as likely to experience disability. High levels of CVH were associated with a lower prevalence of disability in various domains compared to low levels of CVH (all P < 0.05), such as in activities of daily living (OR 0.32, 95% CI 0.18-0.58). Among the LE8 components, BMI, PA, and sleep health were associated with disabilities in all domains, while blood lipid scores were not.</p><p><strong>Conclusion: </strong>A higher adherence to LE8 is associated with a lower prevalence of different types of disability in domains of physical functioning and functional limitations in individuals with OA.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-08-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142018391","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Interdisciplinary provider visits attenuate relationship between patient concerns and distress in older adults with cancer.","authors":"Kelly M McConnell, Alexandra K Zaleta, Rebecca Saracino, Melissa Miller","doi":"10.1007/s11136-024-03760-7","DOIUrl":"https://doi.org/10.1007/s11136-024-03760-7","url":null,"abstract":"<p><strong>Purpose: </strong>This study examined the relationship between multidimensional patient concerns and anxiety and depression in a national sample of older adults with cancer (OACs ≥ 65 years) and the buffering effect of visiting providers across disciplines (e.g., oncology, allied health, primary care, mental health) on these relationships.</p><p><strong>Methods: </strong>Participants completed a cross-sectional survey through the Cancer Support Community's Cancer Experience Registry (CER), an online community-based research initiative. Eligible participants were 65 years and older and diagnosed with cancer in the past five years. Participants completed self-report measures of (1) the severity of their concerns across multiple domains, (2) anxiety and depression, and (3) whether they received care for \"symptoms and side effects\" from various providers.</p><p><strong>Results: </strong>The sample consisted of 277 OACs; 45% endorsed elevated anxiety and 31% endorsed elevated depression. The most severe concerns were in the domains of body image and healthy lifestyle and symptom burden and impact. More severe concerns were associated with higher levels of anxiety and depression. The relationship between concern severity and distress was weaker in OACs who saw a palliative care, mental health, physical or occupational therapy provider, pharmacist, or primary care provider relative to OACs who did not. A visit with an oncology provider did not moderate most relationships between concerns and distress.</p><p><strong>Conclusions: </strong>The relationship between OACs' concerns and distress was attenuated by treatment with a specialty provider. Interdisciplinary team care may be a vital component of comprehensive patient-centered care for OACs.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-08-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142005094","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Association between stigma and quality of life among chronic refractory wounds patients and informal caregivers: an actor-partner interdependence model analysis.","authors":"Ming Cheng, Chenya Zhu, Jiamin Meng, Chenxi Pu, Guoying Chen, Huan Liu","doi":"10.1007/s11136-024-03759-0","DOIUrl":"https://doi.org/10.1007/s11136-024-03759-0","url":null,"abstract":"<p><strong>Purpose: </strong>The co-occurrence of health impairments in patients and their informal caregivers may be particularly common in intimate care settings in China. Patients with Chronic Refractory Wounds (CRWs) and their informal caregivers constitute a dyad and exhibit dyadic effects during the caring process. Unfortunately, no study has yet explored the dyadic effects of stigma on the QoL of patients with CRWs and their caregivers.</p><p><strong>Methods: </strong>We used a convenience sampling method and recruited CRWs patient-caregiver dyads (N = 207) in China between April 2022 and October 2023.</p><p><strong>Results: </strong>We found that: (i) dyadic members experience varying degrees of stigma; (ii) the actor-partner effect of CRWs patients' stigma on their own and their informal caregivers' QoL was significant (Path A₁: β = - 1.27, Path A₂: β = - 0.37, Path P₁: β = - 0.08, Path P₂: β = - 0.18); (iii) informal caregivers' stigma adversely affects both their own and their patients' psychological QoL((Path A₄: β = - 0.65, Path P₄: β = - 0.52)). Informal caregivers' stigma can negatively impact patients' physical QoL (Path P₃: β = - 0.17), whereas it does not significantly affect their own physical QoL.</p><p><strong>Conclusion: </strong>There is a notable actor-partner effect of the CRWs patients' stigma on their own and their informal caregivers' QoL. CRWs patients' stigma should become a priority for the government to improve CRWs patients' and informal caregivers' QoL. Besides, health professionals should be addressing several assessments and interventions to decrease informal caregivers' affiliate stigma symptoms and improve CRWs patients' and informal caregivers' QoL.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-08-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142005093","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Correction: Measuring what matters to older persons for active living: part II cross-sectional validity evidence for OPAL measure across four countries.","authors":"Nancy E Mayo, Mohammad Auais, Ruth Barclay, Joan Branin, Helen Dawes, Ida J Korfage, Kim Sawchuk, Eran Tal, Carole L White, Zain Ayoubi, Ezinne Ekediegwu, Kedar Mate, Lyne Nadeau, Sebastian Rodriguez Duque, Ayse Kuspinar","doi":"10.1007/s11136-024-03758-1","DOIUrl":"10.1007/s11136-024-03758-1","url":null,"abstract":"","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142000596","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Living with faecal incontinence: a qualitative investigation of patient experiences and preferred outcomes through semi-structured interviews.","authors":"S L Assmann, D Keszthelyi, S O Breukink, M L Kimman","doi":"10.1007/s11136-024-03756-3","DOIUrl":"https://doi.org/10.1007/s11136-024-03756-3","url":null,"abstract":"<p><strong>Purpose: </strong>Faecal incontinence (FI) is a prevalent and debilitating anorectal problem causing embarrassment, anxiety, and social isolation, diminishing quality of life. At present there is no optimal treatment option for FI. Consequently, treatments primarily focus on symptom reduction and improving quality of life. Understanding patient experiences and outcomes they seek from treatment is crucial for improving care. This study aims to explore how FI impacts patients' lives and identify important treatment outcomes as part of the development of a Core Outcome Set (COS).</p><p><strong>Methods: </strong>Patients with FI were recruited from outpatient clinics in the Netherlands. Semi-structured interviews were performed, audio recorded, transcribed per verbatim and coded. Thematic analysis was performed to identify (sub)themes and categories relevant to the patients.</p><p><strong>Results: </strong>Twelve interviews were conducted before saturation was reached (75% female, 25% male, mean age 63, range 39-83 year). Four main themes emerged 'Physical symptoms', 'Impact on daily life', 'Emotional impact' and 'Coping'. Patients expressed how FI severely limits daily activities and emotional wellbeing. Treatment priorities centred on resuming normal activities rather than solely on symptom reduction.</p><p><strong>Conclusion: </strong>The impact of FI extends far beyond uncontrolled loss of faeces, affecting psychological, emotional, and social wellbeing. Patients prioritise outcomes focussed on reclaiming normalcy and independence rather than focusing on physical symptoms alone. Integrating these patient-centered outcomes in future studies could enhance treatment satisfaction and patient-perceived treatment success. Furthermore, the outcomes identified in this study can be included in a Delphi survey alongside other relevant outcomes, paving the way for the development of a COS.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141983079","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Response processes for patients providing quantitative self-report data: a qualitative study.","authors":"Øyvind Grindheim, Andrew McAleavey, Valentina Iversen, Christian Moltu, Kristin Tømmervik, Hege Govasmark, Heidi Brattland","doi":"10.1007/s11136-024-03749-2","DOIUrl":"https://doi.org/10.1007/s11136-024-03749-2","url":null,"abstract":"<p><strong>Objective: </strong>To identify factors that influence response processes for patients providing quantitative self-report data. Secondly, due to the lack of integrative and explanatory models in this area, to develop a model of patients' response processes that can guide what to look for when considering validity evidence and interpreting scores on individual items.</p><p><strong>Methods: </strong>Participants (n = 13) were recruited from a specialized substance use disorder treatment clinic and interviewed while responding to items from a clinical feedback system implemented for routine outcome monitoring in that setting. The interview approach was based on cognitive interviewing. Data collection and analysis were inspired by a grounded theory approach.</p><p><strong>Results: </strong>We identified several variables that influenced the participants' response processes. The variables were organized into five categories: context-related variables; item-related variables; response base variables; reasoning strategies; and response selection strategies. We also found that the participants' responses for many items were affected by different aspects of the response process in ways that are relevant to interpretation but not necessarily discernible from the numerical scores alone, and we developed response categories to capture this.</p><p><strong>Conclusion: </strong>The findings suggest that patients providing quantitative self-report data encounter conditions in the response process that challenge and influence their ability to convey meaning and accuracy. This results in responses that for many of the items reflect messages important for interpretation and follow-up, even if it does not appear from the numerical scores alone. The proposed model may be a useful tool when developing items, assessing validity, and interpreting responses.</p>","PeriodicalId":20748,"journal":{"name":"Quality of Life Research","volume":null,"pages":null},"PeriodicalIF":3.3,"publicationDate":"2024-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141983080","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}