Health and Quality of Life Outcomes最新文献

{"title":"Rooting patient-reported outcomes in clinical care: a scoping review on benefits, challenges, and opportunities for patients and clinicians.","authors":"Ipek Ozer Stillman, Brandon Boyle, Karen Lencoski, Meni Styliadou, Jeffrey M Muir, Grammati Sarri","doi":"10.1186/s12955-025-02430-7","DOIUrl":"10.1186/s12955-025-02430-7","url":null,"abstract":"<p><strong>Background: </strong>The patient voice in healthcare continues to grow, through the expanded use of patient-reported outcomes (PRO) and enhanced by the growing use of digital health technologies. Despite these positive signs, widespread adoption of PRO measures (PROM) in healthcare decision-making continues to lag. We conducted a scoping review to identify the current benefits of and roadblocks to the use of PRO data in the patient-clinician interaction.</p><p><strong>Methods: </strong>We searched the Embase and MEDLINE databases from 2014 to 2024 for articles that discussed the role of PRO data in patient quality of life, clinical care and value assessment decision-making. We also manually searched the websites of nine national health technology assessment agencies and used a snowballing approach to identify additional publications. Eligible publications were mapped to three key topics of interest: benefits/barriers at the patient, clinician, and healthcare service levels.</p><p><strong>Results: </strong>Our search yielded 1,846 citations; after deduplication and screening, 13 articles were included. At the patient level, benefits included increased care satisfaction and improved patient experience, mainly via enhanced communication. Uncertainty about PROMs and their mechanisms was a main barrier, as were concerns about the variability of clinical application, lack of follow-up, and unfulfilled patient expectations. For clinicians, improved patient symptom clarity, satisfaction with care, and informed decision-making were the main benefits of PROMs, along with improved efficiency during patient visits. The main barrier for physicians was the feasibility of integrating PROMs into daily practice, including establishing the routine use of PROMs, and consistency in the interpretation of PRO data. At the healthcare service level, improvements in efficiency and the identification of unmet needs were benefits, while questions about consistent between-group interpretation were raised, as were questions regarding the basic value of PROMs, as there is currently minimal evidence to indicate that PRO data directly improve care outcomes.</p><p><strong>Conclusion: </strong>Much evidence exists indicating PROMs are associated with improvements in patient-clinician communication and improved satisfaction on both parts, although hesitation regarding their widespread adoption remains. More objective data are needed to further quantify the potential benefits of PROM integration in clinical care in order to assess any direct impact on clinical care outcomes and to facilitate their broader use.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"93"},"PeriodicalIF":3.4,"publicationDate":"2025-09-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12482245/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145191513","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":"Understanding health-related quality of life of informal carers in amyotrophic lateral sclerosis: a scoping review and conceptual framework.","authors":"Rosie Bamber, Jill Carlton, Christopher McDermott, Theocharis Stavroulakis","doi":"10.1186/s12955-025-02427-2","DOIUrl":"10.1186/s12955-025-02427-2","url":null,"abstract":"<p><strong>Background: </strong>Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressive, life-limiting neurodegenerative disease. Informal carers provide extensive support, significantly impacting their health-related quality of life (HRQoL). Current HRQoL measurement using person-reported outcome measures (PROMs) in ALS carers lacks consistency and comprehensiveness, hindering robust assessment and synthesis. There is evident need for a comprehensive conceptual framework of HRQoL, to fully capture the multidimensional nature of caregiving in ALS. Such a framework is essential to inform research and clinical practice, ensuring relevant measurement and meaningful clinical discussions. This study aimed to develop this evidence-based framework.</p><p><strong>Methods: </strong>This study comprised two stages. Firstly, a scoping review was undertaken in March 2024 using Medline, Embase, and CINAHL to identify primary articles exploring HRQoL in ALS carers. Qualitative, mixed methods and quantitative articles using multi-item PROMs to assess HRQoL in informal ALS carers were included. Relevant themes and subthemes were extracted from articles and PROMs and mapped onto an existing conceptual framework for people with ALS (Quality of Life in ALS, QuALS), which covers physical, psychological, and social HRQoL domains in people with ALS. The Carer-QuALS framework was subsequently developed and refined using existing literature and consultation with ALS carers. PROMs within this review were then indexed against the finalised Carer-QuALS framework.</p><p><strong>Results: </strong>From 715 search results, 82 articles and 44 PROMs were eligible for inclusion. One new subtheme 'physical caring activities' emerged, while seven subthemes lacked support from the literature. In three structured consultation sessions, nine ALS carers, reviewed the draft Carer-QuALS framework (consisting of seven themes and 43 subthemes). Based on their input, one new subtheme 'privacy' was added, six subthemes were removed, and one was retained, despite lacking support from review literature. The final Carer-QuALS framework includes 37 subthemes: 8 physical, 6 social, and 23 psychological.</p><p><strong>Conclusions: </strong>This review presents a comprehensive conceptual framework encompassing the multidimensional impact of ALS caregiving on the HRQoL of informal carers. The framework provides a resource that can be used by researchers, clinicians, and patient advocacy groups for multiple purposes (e.g., to support PROM selection to measure HRQoL, to guide future PROM development, and to facilitate discussions between informal carers and clinicians).</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"90"},"PeriodicalIF":3.4,"publicationDate":"2025-09-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12482542/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145191504","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 role of psychological flexibility and emotion regulation in the relationship between smartphone addiction and psychological wellbeing in adolescents: three-wave longitudinal serial mediation study.","authors":"Ahmet Alkal","doi":"10.1186/s12955-025-02405-8","DOIUrl":"10.1186/s12955-025-02405-8","url":null,"abstract":"<p><strong>Background: </strong>When the increasing prevalence of Smartphone Addiction (SA) and its potential negative effects on mental health among adolescents are taken into consideration, an in-depth investigation of the relationship between SA and Psychological Well-being (PW) is of critical importance. Therefore, using a three-wave longitudinal research design, this study aimed to examine the serial mediation role of Psychological Flexibility (PF) and Emotion Regulation (ER) in the relationship between SA and PW. To our knowledge, this is the first study to examine SA, PF, ER, and PW relationships and mediating mechanisms in an adolescent sample using a longitudinal design.</p><p><strong>Methods: </strong>The study included 448 adolescents (49.8% female and 50.2% male; Range_age = 15-19, M_age = 16.76, SD_age = 1.12) who responded to the questionnaires in three waves. Participating adolescents responded to a 50-item questionnaire consisting of the Smartphone Addiction Scale-Short Version (SAS-SV), the Five-Dimensional Well-Being Scale for Adolescents (EPOCH), the Multidimensional Psychological Flexibility Inventory Short Form (MPFI-SF), and the Regulation of Emotions Questionnaire (REQ). The questionnaires were filled in using pen and paper in a classroom environment under the supervision of the teacher and the researcher.</p><p><strong>Results: </strong>Compared to those who used their smartphones for 0-2 h and 2-4 h, adolescents who reported to use their smartphones for more than four hours daily were found to have higher SA scores and lower PW, ER, and PF scores across all three time points (T1, T2, and T3). The findings indicated that SA at T1 negatively predicted PW at T3 (β = -0.34, p < .001), PF at T2 (β = -0.39, p < .001), and ER at T2 (β = -0.23, p < .001). On the other hand, PF at T2 positively predicted ER at T2 (β = 0.17, p < .001) and PW at T3 (β = 0.40, p < .001), and ER at T2 positively predicted PW at T3 (β = 0.73, p < .001). Besides, PF at T2 (β = -0.15, SE = 0.03, 95% CI = [-0.2036, -0.1053]) and ER at T2 (β = -0.17, SE = 0.03, 95% CI = [-0.2288, -0.1054]) were found to fully mediate the longitudinal relationship between SA at T1 and PW at T3. The longitudinal serial mediation model accounted for 32% of the variance in PW (R² = .32).</p><p><strong>Conclusions: </strong>This study shows that SA leads to a decrease in adolescents' PF skills and their capacity to effectively manage their emotional reactions over time, which in turn leads to lower PW levels. The findings emphasize the potential of interventions to improve PF and ER skills in alleviating SA-related mental health problems in adolescents. The findings also suggest that both strengthening PF and ER skills separately and addressing them simultaneously could significantly increase the effectiveness of treatment approaches.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"89"},"PeriodicalIF":3.4,"publicationDate":"2025-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12465575/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145174783","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":"Assessing well-being in younger populations in economic evaluations: a scoping review of multidimensional instruments.","authors":"Zhirui Guo, Diana Marcela Nova Diaz, Stefan A Lipman, Leona Hakkaart-van Roijen","doi":"10.1186/s12955-025-02418-3","DOIUrl":"10.1186/s12955-025-02418-3","url":null,"abstract":"<p><strong>Background: </strong>To comprehensively evaluate health care interventions in younger populations, outcome measurement in economic evaluation may need to be expanded beyond health-related quality of life to include well-being. However, whether appropriate well-being instruments exist for children remains uncertain. This study provides a systematic overview of multidimensional well-being instruments for children and assesses their potential applicability for economic evaluation.</p><p><strong>Methods: </strong>This scoping review was reported following the PRISMA-ScR guidelines. The search strategy included terms related to \"well-being,\" \"child or adolescent,\" and \"instrument\", and was implemented in four electronic databases, yielding a total of 9622 articles. Two reviewers independently screened articles with ASReview, a machine-learning-based tool for expediting screening, and manually extracted information from relevant articles. Findings were synthesized narratively, highlighting consistency and discrepancies, as well as potential suitability for economic evaluation (using multiple criteria).</p><p><strong>Results: </strong>Twentyfive studies were included, published between 1993 and 2024. On average, instruments assessed well-being with five dimensions and 38 questions. Common dimensions included physical, health, school, satisfaction, relationship(s), emotional and self. Dimensions that capture children's daily experiences, such as family, achievement, education and after-school activities were frequently considered.</p><p><strong>Conclusion: </strong>The review highlights the variety of well-being instruments for children. Although many instruments measure well-being comprehensively, only ICECAP-CYP fit all criteria for suitability for economic evaluation. The small number of potentially suitable instruments highlights a growing yet still insufficient interest in moving beyond traditional HRQoL assessments in younger populations.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"86"},"PeriodicalIF":3.4,"publicationDate":"2025-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12465456/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145174869","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":"Health-related quality of life and financial toxicity in Chinese patients with multiple myeloma: a two-year real-world multicentre study.","authors":"Weijia Wu, Yannan Wang, Yingqi Wu, Fei Wu, Wenqianzi Yang, Fengyuan Tang, Meiling Zhang, Qiquan Wu, Hengjin Dong, Aizong Shen","doi":"10.1186/s12955-025-02419-2","DOIUrl":"10.1186/s12955-025-02419-2","url":null,"abstract":"<p><strong>Background: </strong>The introduction of novel therapeutic agents has transformed the treatment landscape and significantly improved survival outcomes for patients with multiple myeloma (MM). However, the effects of these advancements on health-related quality of life (HRQoL) and financial toxicity in real-world settings remain insufficiently explored. The aim of this study was to investigate HRQoL and financial toxicity among Chinese patients with MM in the era of novel agents.</p><p><strong>Methods: </strong>In this longitudinal, multicentre, real-world study, data from Chinese patients with MM were collected between March 2021 and July 2023. HRQoL was assessed using the EQ-5D-5 L, EQ-VAS and FACT-MM, while financial toxicity was measured using the Comprehensive Score for Financial Toxicity (COST). Patients were evaluated at baseline and at 3-, 6-, 12-, and 24-month follow-up visits. Mixed-effect models were employed to examine the factors associated with HRQoL and financial toxicity over time.</p><p><strong>Results: </strong>A total of 441 patients were surveyed at baseline, with 412 (93.5%), 371 (84.1%), 335 (76.0%), and 253 (57.4%) completing the follow-up visits at 3, 6, 12, and 24 months, respectively. At baseline, the mean EQ-5D-5 L, EQ-VAS, FACT-MM, and COST scores were 0.79 (SD = 0.25), 81.96 (SD = 18.73), 117.46 (SD = 21.76), and 21.84 (SD = 5.78), respectively. The EQ-5D-5 L utility values and FACT-MM scores at follow-up visits were significantly higher than those at baseline, whereas the COST scores were significantly lower. Mixed-effect model analyses revealed that higher levels of financial toxicity were significantly associated with lower HRQoL (EQ-5D-5 L: β = 0.006, p < 0.001; FACT-MM: β = 1.60, p < 0.001). Moreover, significant interaction effects between socioeconomic status and COST were observed for both the EQ-5D-5 L (β = -0.001, p < 0.001) and the FACT-MM (β = -0.12, p < 0.001).</p><p><strong>Conclusions: </strong>HRQoL improved moderately over the 24-month follow-up period, whereas financial toxicity progressively worsened. Greater financial toxicity was significantly associated with poorer HRQoL, particularly among patients with lower SES. These findings may inform future health policy development and economic evaluations aimed at improving the quality of care and financial well-being of patients with MM.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"87"},"PeriodicalIF":3.4,"publicationDate":"2025-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12465286/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145174777","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":"Design and selection of items for a new health-related quality of life instrument with infertility patients (Infertility-QoL): a national multicenter, four-phase, mixed-methods study.","authors":"Zhao Shi, Yu Zheng, Zhuxin Mao, Hongwei Nie, Gang Chen, Shunping Li","doi":"10.1186/s12955-025-02416-5","DOIUrl":"10.1186/s12955-025-02416-5","url":null,"abstract":"<p><strong>Background: </strong>Infertility is a global issue that significantly imposes physical and psychosocial burdens on both female and male patients, affecting their health-related quality of life (HRQoL) and family wellbeing. The aim of this study was to develop a de novo HRQoL instrument for male and female infertility patients in China, and describe the generation and selection of items for Infertility-QoL.</p><p><strong>Methods: </strong>This study used a mixed methods design involving 4 steps. The items identified from the systematic review and qualitative interview analysis were used to construct draft candidate items (step 1). In order to ensure item relevance, comprehension, and acceptability, using cognitive interviews prior to quantifying psychometric testing (step 2). In the third step, we conducted a cross-sectional quantitative offline survey for item selection. Classical test theory (CTT) and item response theory (IRT) were used to assess dimensionality and performance of items. Finally, by conducting advisory committee consultations and thematic seminars, the items were further qualitatively evaluated, and developed a formal version of the Infertility-QoL (step 4).</p><p><strong>Results: </strong>Step 1 resulted in the generation of 73 items. Based on CTT and IRT psychometric evidence, 36 items were deleted. Finally, according to the advisory committee consultations for qualitative evaluation, a formal version of the Infertility-QoL with 25 items was developed. The exploratory factor analysis results showed that the 6-factor model was appropriate. The newly developed instrument (Infertility-QoL) consisted of 25 items across six dimensions: physical health, sexual life, emotional status, self-efficacy, subjective wellbeing and social relations.</p><p><strong>Conclusions: </strong>This study developed the new Infertility-QoL instrument for male and female infertility patients, and preliminarily verified its dimensions.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"88"},"PeriodicalIF":3.4,"publicationDate":"2025-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12465535/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145174788","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":"Insights from using patient-reported outcomes as an intervention during cancer treatment in Denmark: potential reasons for limited effectiveness.","authors":"Lærke K Tolstrup, Ida Lind Rasmussen, Helle Pappot","doi":"10.1186/s12955-025-02417-4","DOIUrl":"10.1186/s12955-025-02417-4","url":null,"abstract":"","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"85"},"PeriodicalIF":3.4,"publicationDate":"2025-09-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12462033/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145137369","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":"\"That kind of changes things\": a meta-synthesis of the lived experiences of people with chronic heart disease.","authors":"Lisa Nebel, Timothy Le Butt, Christian Sell, Christoph Herrmann-Lingen, Daniel Broschmann","doi":"10.1186/s12955-025-02423-6","DOIUrl":"10.1186/s12955-025-02423-6","url":null,"abstract":"","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"84"},"PeriodicalIF":3.4,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12447608/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145086080","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":"Health-related quality of life among adults with hypertension with or without anxiety and depression: estimates from a national US data.","authors":"Monira Alwhaibi, Bander Balkhi","doi":"10.1186/s12955-025-02422-7","DOIUrl":"10.1186/s12955-025-02422-7","url":null,"abstract":"","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"83"},"PeriodicalIF":3.4,"publicationDate":"2025-09-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12421761/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145029778","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 reinvigorated Health and Quality of Life Outcomes: recent successes and renewed aims & scope.","authors":"Mark Oremus, Brendan Mulhern, Oliver Rivero-Arias, Fanni Rencz","doi":"10.1186/s12955-025-02414-7","DOIUrl":"10.1186/s12955-025-02414-7","url":null,"abstract":"","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"82"},"PeriodicalIF":3.4,"publicationDate":"2025-09-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12414261/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145008213","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}