Health and Quality of Life Outcomes最新文献

{"title":"Disutility associated with social isolation and loneliness in Germany: results of a population survey using the EQ-5D-5L instrument.","authors":"Hans-Helmut König, André Hajek","doi":"10.1186/s12955-024-02329-9","DOIUrl":"10.1186/s12955-024-02329-9","url":null,"abstract":"<p><strong>Background: </strong>Social isolation and loneliness are highly prevalent and may have a negative impact on health-related quality of life (HRQL). The EQ-5D-5L is a widely used questionnaire from which an index value for HRQL based on societal preferences (utility) can be derived. The purpose of this study was to estimate the loss in utility (i.e. disutility) associated with loneliness and social isolation in the German adult population.</p><p><strong>Methods: </strong>Data came from a quota sample of individuals aged 18-74 years residing in Germany (n = 5,000) and representing the adult population in terms of age groups, gender and geographic locations. Data collection was conducted online in August and September 2023 by a certified market research firm. The EQ-5D-5L index score based on the German value set was used as outcome. Moreover, the established Lubben Social Network Scale was used to measure social isolation. The De Jong Gierveld tool was used to quantify loneliness. Groups affected by social isolation or loneliness were compared to non-affected groups, respectively. Differences in covariates between affected and non-affected groups were balanced using entropy balancing. Linear regressions were conducted afterwards (using the weights derived from the entropy balancing). Subgroup analyses by sex and age groups as well as various robustness checks were conducted.</p><p><strong>Results: </strong>The EQ-5D-5L index score was lower among individuals with social isolation compared to individuals without social isolation (β=-0.04, p < 0.001). Moreover, the EQ-5D-5L index score was lower among individuals with loneliness compared to individuals without loneliness (β=-0.07, p < 0.001). Several robustness checks produced similar results. The findings were almost the same for both women and men and varied only slightly between age groups.</p><p><strong>Conclusions: </strong>We found a statistically significant and relevant disutility associated with social isolation and, even more pronounced, with loneliness. The magnitude of disutilities is similar to those reported for various chronic diseases. Taking into account the high prevalence of social isolation and, in particular, loneliness, the associated burden in terms of quality-adjusted life years (QALY) lost is likely to be tremendous. The results underline the need to take action against the high prevalence of loneliness and social isolation.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"22 1","pages":"110"},"PeriodicalIF":3.2,"publicationDate":"2024-12-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11662566/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142871866","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 the effectiveness of measurement scales in evaluating the health-related quality of life in rare disease patients after treatment: a systematic review.","authors":"John Sieh Dumbuya, Bashir Ahmad, Cizheng Zeng, Xiuling Chen, Jun Lu","doi":"10.1186/s12955-024-02324-0","DOIUrl":"10.1186/s12955-024-02324-0","url":null,"abstract":"<p><strong>Background: </strong>Rare diseases often entail significant challenges in clinical management and health-related quality of life (HRQoL) assessment. HRQoL assessment tools for rare diseases show substantial variability in outcomes, influenced by disease heterogeneity, intervention types, and scale characteristics. The variability in reported quality of life (QoL) improvements following interventions reflects a need to evaluate the effectiveness of HRQoL assessment tools and understand their suitability across diverse contexts.</p><p><strong>Objective: </strong>This systematic review aims to analyse the effectiveness of various assessment scales in evaluating QoL and explores the general trends observed in the studies using the same and different assessment scales on rare diseases.</p><p><strong>Methods: </strong>A comprehensive literature search was conducted across various databases to identify studies that reported QoL outcomes related to interventions for rare diseases. Search terms included various synonyms, and both the generic and specific terms related to rare diseases and QoL. Key variables, including intervention types, patient demographics, study design, and geographical factors, were analysed to determine their role in influencing the reported HRQoL outcomes. The findings were then compared with existing literature to identify consistent patterns and discrepancies.</p><p><strong>Results: </strong>A total of 39 studies were included, comprising randomised controlled trials, observational studies, and cohort studies, with 4737 participants. Significant variations were observed in QoL improvements across studies, even when using the same assessment scales. These differences were primarily attributed to the heterogeneity in disease severity, intervention types, and patient characteristics. Studies employing disease-specific scales reported more nuanced outcomes than generic ones. Additionally, methodological differences, including study design and intervention type, contributed to variations in results and geographical factors influencing patients' perceptions of health and well-being.</p><p><strong>Conclusion: </strong>The reported differences in QoL outcomes across studies can be explained by a combination of factors, including disease heterogeneity, treatment modalities, patient demographics, and assessment scale characteristics. These findings underscore the importance of selecting appropriate HRQoL assessment tools based on the research context and patient population. For more accurate comparisons across studies, it is crucial to consider these factors alongside consistent methodology and cultural adaptability of scales. Future research should focus on developing standardised guidelines for QoL assessments that accommodate the diverse needs of patients with rare diseases.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"22 1","pages":"108"},"PeriodicalIF":3.2,"publicationDate":"2024-12-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11657302/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142854063","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":"Predictors of quality of life among caregivers of patients with moderate to severe kidney disease: an Australian cross-sectional study.","authors":"Edward Zimbudzi, Asha Blessan, Denise Fraginal, Lelise Gute, Qiumian Wang, Shari Ziganay","doi":"10.1186/s12955-024-02317-z","DOIUrl":"10.1186/s12955-024-02317-z","url":null,"abstract":"<p><strong>Background: </strong>Little is known about the quality of life (QoL) of caregivers of patients with chronic kidney disease (CKD) along the disease continuum. We investigated factors associated with low QoL among caregivers of patients with CKD including those on dialysis. We also examined the relationship between kidney disease severity and the QoL of caregivers.</p><p><strong>Methods: </strong>We recruited caregivers of patients with CKD (stage 3 to 5) attending renal outpatient clinics as well as dialysis units of a tertiary hospital and patients from January 2018 to November 2023. Quality of life was assessed using a valid and reliable tool, the Adult Carer Quality of Life Questionnaire. Logistic regression analyses were performed to determine factors associated with low QoL among caregivers.</p><p><strong>Results: </strong>A total of 278 dyads of caregivers and patients were studied with a mean age of 56.6 ± 15.2 and 63.7 ± 15.3 years respectively. The proportion of caregivers reporting low to mid-range QoL scores ranged from 37 to 73.3% across the eight domains, with 48% having low to mid-range overall QoL scores. The severity of CKD had no impact on overall QoL of caregivers in the personal growth and carer satisfaction domains where caregivers of patients on dialysis reported worse scores compared to caregivers of predialysis patients. Female gender of caregivers and patients, longer caregiving time, diagnosis of diabetes and lower socioeconomic status of patients were all associated with lower scores in one or more domains.</p><p><strong>Conclusion: </strong>This study identified several factors associated with low QoL among caregivers of patients with CKD. An understanding of these factors provides insight into the development of targeted interventions to improve the QoL of caregivers.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"22 1","pages":"106"},"PeriodicalIF":3.2,"publicationDate":"2024-12-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11657763/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142854067","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":"Impact of immigration background on feasibility of electronic patient-reported outcomes in advanced urothelial cancer patients.","authors":"Ozan Yurdakul, Abdulkarim Alan, Johanna Krauter, Stephan Korn, Kilian Gust, Shahrokh F Shariat, Melanie R Hassler","doi":"10.1186/s12955-024-02325-z","DOIUrl":"10.1186/s12955-024-02325-z","url":null,"abstract":"<p><strong>Background: </strong>Electronic patient-reported outcomes (ePROs) have been shown to enhance healthcare quality by improving patient symptom management or quality of life (QoL). However, ePROs data for urothelial cancer (UC) patients receiving systemic therapies are scarce, and the application of ePROs in this patient cohort may need specific setups. This study tested the feasibility of ePROs for UC patients receiving systemic therapies in the outpatient clinic of a tertiary care center.</p><p><strong>Patients and methods: </strong>From January 2022 to April 2023, 30 UC patients receiving systemic cancer therapies received ePROs based on the Common Terminology Criteria for Adverse Events (CTCAE) and European Organization for Research and Treatment of Cancer Core Quality of Life questionnaires (EORTC QLQ-30) to report their symptoms and QoL during systemic therapy, in total, 125 questions for every therapy cycle. The proportion of patients adherent to the ePROs was assessed to evaluate feasibility, with a preset threshold of 50%. At least half of all treatment cycles with a minimum of two consecutive ePROs (corresponding to two successive therapy cycles) had to be completed to be counted as adherent, and a maximum of six successive therapy cycles was followed by ePROs. Descriptive statistics were calculated for clinical and demographic patient characteristics. T-test and chi-square-test analyses were performed to study the association between ePROs adherence and clinical or demographic factors. The digital process was closely monitored for procedural impediments that could occur.</p><p><strong>Results: </strong>21 (70%) of the included 30 patients adhered to the provided ePROs, significantly higher than the predetermined threshold of 50%. Adherence remained above 70% until the end of the observation period. A significant negative effect of immigration background on ePROs compliance was observed (p = 0.006). No other variables were significantly associated with ePROs compliance.</p><p><strong>Conclusions: </strong>In this study, ePROs were a feasible method to assess symptoms and QoL during the systemic cancer therapy of UC patients at our center. The compliance of patients with immigration backgrounds was the most significant barrier to using ePROs in this setting. However, the study is limited by the exclusion of patients without email access and the lack of assessment of physician compliance with the ePROs data, which may affect the generalizability and implementation of the findings.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"22 1","pages":"107"},"PeriodicalIF":3.2,"publicationDate":"2024-12-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11657869/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142854066","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":"How do children understand and respond to the EQ-5D-Y-3L? A mixed methods study in a community-based sample of 6-12-year-olds.","authors":"Diana Khanna, Kiri Lay, Jyoti Khadka, Christine Mpundu-Kaambwa, Julie Ratcliffe","doi":"10.1186/s12955-024-02320-4","DOIUrl":"10.1186/s12955-024-02320-4","url":null,"abstract":"<p><strong>Background: </strong>The EQ-5D-Y-3L is widely used for measuring and valuing HRQoL in paediatric populations. This mixed methods study used the EQ-5D-Y-3L measure and applied a retrospective think-aloud approach to examine the self-report validity in children of varying chronological age.</p><p><strong>Methods: </strong>A mixed methods study was conducted in a community-based sample of 39 children aged 6-12 years. In a semi-structured interview, children self-completed the EQ-5D-Y-3L and then engaged in retrospective think-aloud. Conversations were audio-recorded and transcribed for analysis in NVivo using the Tourangeau four-stage response model framework to assess comprehension, judgment, recall, and response mapping issues. Fisher's exact test was used to assess the differences between child-self reported HRQoL across subgroups. The inter-rater agreement between child-parent dyads was assessed with CCC for overall HRQoL and Gwet's AC₁ for dimension level HRQoL.</p><p><strong>Results: </strong>Overall, response issues were detected in n = 18 (46%) children. Comprehension issues were apparent in the \"having pain or discomfort\" dimension where children found it challenging to understand 'discomfort'. Recall-related issues were observed where children's responses were influenced by their typical tendencies (e.g., being usually worried) or past incidences (e.g., feeling pain sometimes). Judgement-related issues were the most common, particularly in the \"doing usual activities\" dimension, where children tended to respond based on their self-perceived ability to engage in activities rather than health-related limitations. None of the participants were found to have problems with response mapping. A healthy lifestyle that included diet and exercise was a notable consideration in EQ VAS ratings. The younger age groups had a higher proportion of response issues (6-7 years: 64%, 8-10 years: 62%), compared to older children (11-12 years: 20%). Moreover, children with response issues demonstrated significantly lower EQ-5D-Y-3L scores (mean = 0.78, se = 0.04) as compared to those without (mean = 0.95, se = 0.02) (p-value < 0.001). The overall inter-rater agreement was higher for those without any response issues (CCC = 0.33) than those with (CCC = 0.14). Additionally, higher agreement was noted across all the five dimensions in the subgroup with no response issues relative to those with.</p><p><strong>Conclusions: </strong>Children in the general community may have different perceptions of HRQoL when responding to the EQ-5D-Y-3L possibly due to their limited experience with health-related challenges. The retrospective think-aloud approach adopted highlighted the relatively higher prevalence of response issues in the younger children (ages < 11 years), indicating the need for careful interpretation of self-reported HRQoL using the current version of the EQ-5D-Y-3L in this population.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"22 1","pages":"105"},"PeriodicalIF":3.2,"publicationDate":"2024-12-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11619400/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142780195","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":"Comparing the contents of patient-reported outcome measures for fatigue: EORTC CAT Core, EORTC QLQ-C30, EORTC QLQ-FA12, FACIT, PRO-CTCAE, PROMIS, Brief Fatigue Inventory, Multidimensional Fatigue Inventory, and Piper Fatigue Scale.","authors":"Maria Rothmund, Micha J Pilz, Nathalie Egeter, Emma Lidington, Claire Piccinin, Juan I Arraras, Mogens Groenvold, Bernhard Holzner, Marieke van Leeuwen, Morten Aa Petersen, John Ramage, Heike Schmidt, Teresa Young, Johannes M Giesinger","doi":"10.1186/s12955-024-02316-0","DOIUrl":"10.1186/s12955-024-02316-0","url":null,"abstract":"<p><strong>Background: </strong>To assess fatigue in cancer patients, several patient-reported outcome measures (PROMs) are available that differ in content. To support the selection of suitable measures for specific applications and to evaluate possibilities of quantitative linking, the present study provides a content comparison of common fatigue measures, scales, and item banks. We included the EORTC CAT Core, EORTC QLQ-FA12, EORTC QLQ-C30, FACIT-F, PROMIS Fatigue (Cancer item bank v1.0), Brief Fatigue Inventory (BFI), Multidimensional Fatigue Inventory (MFI-20), Piper Fatigue Scale (PFS-12), and PRO-CTCAE.</p><p><strong>Methods: </strong>All items of the included measures were linked to the International Classification of Functioning, Disability and Health (ICF). Additionally, they were categorized as assessing general, physical, emotional, or cognitive fatigue. Descriptive statistics were used to display the contents covered in each measure and to allow for a qualitative comparison.</p><p><strong>Results: </strong>The measures consist of 160 items in total and covered primarily contents of the ICF components 'Body functions', 'Activities and participation', and 'Environmental Factors'. Most ICF codings refer to 'b1300 Energy level' (9-67% of the codings per instrument; 47% of all coded content). Within the broad categorization of types of fatigue, most items were classified as general fatigue (33-100% of the codings per instrument; 49% of the overall item pool). While the EORTC CAT Core focuses exclusively on physical and general fatigue, FACIT and BFI additionally assess emotional fatigue. The EORTC QLQ-FA12, PROMIS, MFI-20, and PFS-12 cover all fatigue components, including cognitive fatigue.</p><p><strong>Discussion: </strong>The review provides an in-depth content comparison of PROMs assessing cancer-related fatigue. This can inform the selection of suitable measures in different clinical contexts. Furthermore, it will inform quantitative analyses to facilitate comparison of scores obtained with different PROMs.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"22 1","pages":"104"},"PeriodicalIF":3.2,"publicationDate":"2024-12-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11613840/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142768552","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":"EQ-5D-5L population norms and health inequality for Trinidad and Tobago in 2022-2023 and comparison with 2012.","authors":"Henry Bailey, Marcel F Jonker, Eleanor Pullenayegum, Fanni Rencz, Bram Roudijk","doi":"10.1186/s12955-024-02323-1","DOIUrl":"10.1186/s12955-024-02323-1","url":null,"abstract":"<p><strong>Background: </strong>The use of EQ-5D instruments in clinical, policy and economic applications continues to grow internationally. Population norms studies provide baseline values against which demographic and patient groups are compared and inequality is assessed. This study presents updated EQ-5D-5L population norms for 2022-2023, evaluates inequality and compares the results with those of 2012.</p><p><strong>Methods: </strong>Demographic and EQ-5D-5L data were obtained from mutually exclusive, representative samples of adults in three studies conducted from July 2022 through May 2023. EQ-5D-5L index values, EQ VAS scores, and ceilings (all dimensions at level 1) were calculated for age-sex groups and stratifiers including education, income, ethnicity, marital status, and employment status. For inequality, the Kakwani index was calculated for the EQ VAS scores and index values, and ordered logit models were used to obtain odds ratios for reporting higher levels of problems on each dimension for demographic groups. The results were compared with those from 2012 which included applying the value set that had been used for the 2022-2023 population norms to the 2012 states.</p><p><strong>Results: </strong>Data were obtained form 2,989 respondents. The mean index value was 0.921, EQ VAS was 79.6 and the ceiling was 31.5%. The dimensions with the highest rates of reported problems at any level (2-5) were pain/discomfort (43%) and anxiety/depression (39%). The Kakwani index was 0.113 for EQ VAS and 0.058 for index values, with sex accounting for the largest relative contribution. Mean index values, EQ VAS scores, and ceilings were lower across all demographic groups in 2022-2023 compared to 2012.</p><p><strong>Conclusions: </strong>This is the first study to investigate how EQ-5D-5L population norms have changed within a country over time. Significant changes were observed in the EQ-5D-5L measures and the relative frequencies of reported problems on the dimensions. Inequality increased, and there were changes in the levels of reported problems on the dimensions for demographic groups. Such changes suggest that national population norms should be updated periodically to capture changes in health status, perceptions of health, and health inequality.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"22 1","pages":"103"},"PeriodicalIF":3.2,"publicationDate":"2024-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11606218/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142750788","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":"EQ‑5D‑Y-3L population norms for children and adolescents in Jiangsu, China.","authors":"Junyan Liang, Huibin Dong, Juan Yang, Xinpeng Xu, Qifeng Wu, Li Liu, Hua You","doi":"10.1186/s12955-024-02322-2","DOIUrl":"10.1186/s12955-024-02322-2","url":null,"abstract":"<p><strong>Objective: </strong>This study aims to establish EQ-5D-Y-3L population norms in Jiangsu, China by conducting a large-scale cross-sectional survey.</p><p><strong>Methods: </strong>Children and adolescents aged 9-17 from three cities of Jiangsu Province were selected by multistage stratified random sampling to complete the EQ-5D-Y-3L instrument independently. Population norms for Jiangsu, China were determined by calculating statistics based on age and gender. Logistic and Tobit regression models were employed to explain the relationship between HRQoL and factors such as sociodemographic characteristics/recent acute symptoms (experienced fever/cough/sore throat/diarrhea in the past two weeks).</p><p><strong>Results: </strong>Three cities yielded 37,574 valid samples (a sample validity rate of 95.4%). The EQ-5D-Y-3L utility values (mean ± SD) were 0.964 ± 0.085 for males and 0.958 ± 0.077 for females. Males scored 85.94 ± 19.62 and females scored 84.83 ± 18.45 on the VAS (mean ± SD), while the percentages of respondents reporting full health ranged from 58.3 to 78.8%. The dimension in which most respondents reported having no problems was \"feeling worried, sad, or unhappy\" (23.0%). And the lowest HRQoL was shown in the 14-year-old age group. Gender, age, board at school, and BMI were found to have an association with HRQoL. In addition, recent acute symptoms also correlate with some aspects of HRQoL.</p><p><strong>Conclusions: </strong>This study established EQ-5D-Y-3L population norms in Jiangsu, China for the first time. These norms will support resource allocation decision-making and be used as a reference for health evaluation studies.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"22 1","pages":"102"},"PeriodicalIF":3.2,"publicationDate":"2024-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11603884/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142750790","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 use of patient-reported outcome measures to improve patient-related outcomes - a systematic review.","authors":"Joshua M Bonsel, Ademola J Itiola, Anouk S Huberts, Gouke J Bonsel, Hannah Penton","doi":"10.1186/s12955-024-02312-4","DOIUrl":"10.1186/s12955-024-02312-4","url":null,"abstract":"<p><strong>Background: </strong>Patient-reported outcome measures (PROMs) provide invaluable information on patients' health outcomes and can be used to improve patient-related outcomes at the individual, organizational and policy levels. This systematic review aimed to a) identify contemporary applications and synthesize all evidence on the use of PROMs in these contexts and b) to determine characteristics of interventions associated with increased effectiveness.</p><p><strong>Methods: </strong>Five databases were searched for studies providing quantitative evidence of the impact of PROM interventions. Any study design was permitted. An overall benefit (worsening) in outcome was defined as a statistically significant improvement (deterioration) in either a PROM, patient-reported experience measure or clinical outcome. Study quality was assessed using the Effective Public Healthcare Panacea Project's Quality Assessment Tool for Quantitative Studies. A narrative synthesis was conducted.</p><p><strong>Results: </strong>Seventy-six studies of the 11,121 articles identified met the inclusion criteria. At the individual level, 10 (43%) of 23 studies that fed back PROMs to the patient or healthcare provider showed an improvement in outcome. This percentage increased in studies which used PROMs to monitor disease symptoms and linked these to care-pathways: 17 (68%) of 25 studies using this mechanism showed an improvement. Ten (71%) of 14 studies using PROMs to screen for disease found a benefit. The monitoring and screening approach was most effective using PROMs covering cancer-related, depression and gastro-intestinal symptoms. Three studies found that the mere collection of PROMs resulted in improved outcomes. Another three studies used PROMs in decision aids and found improved decision quality. At the organizational/policy level, none of the 4 studies that used PROMs for benchmarking found a benefit. The three studies that used PROMs for in-depth performance analyses and 1 study in a plan-do-study-act (PDCA) cycle found an improvement in outcome. Studies employing disease-specific PROMs tended to observe improved outcomes more often. There are concerns regarding the validity of findings, as studies varied from weak to moderate quality.</p><p><strong>Conclusions: </strong>The use of PROMs at the individual level has matured considerably. Monitoring/screening applications seem promising particularly for diseases for which treatment algorithms rely on the experienced symptom burden by patients. Organizational/policy-level application is in its infancy, and performance evaluation via in-depth analyses and PDCA-cycles may be useful. The findings of this review may aid stakeholders in the development and implementation of PROM-interventions which truly impact patient outcomes.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"22 1","pages":"101"},"PeriodicalIF":3.2,"publicationDate":"2024-11-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11600902/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142727883","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 effect of positive mental well-being on patient reported outcome (PRO): finding from a cross-sectional multi-disease study in China.","authors":"Zhihao Yang, Nan Luo, Yanming Hong","doi":"10.1186/s12955-024-02314-2","DOIUrl":"10.1186/s12955-024-02314-2","url":null,"abstract":"<p><strong>Purpose: </strong>This study aims to investigate the potential impact of positive mental well-being on responses of patient-reported outcome measures (PROMs), such as EQ-5D-5L.</p><p><strong>Methods: </strong>This study utilized the data collected in a cross-sectional study in a sample consisted of individuals with different health conditions. Spearman's rank correlations were employed to investigate the relationship between the responses to the dimensions of EQ-5D-5L and the Short Warwick-Edinburgh Mental Well-being Scale (SWEMWBS). A binary logistic regression analysis and ordered logistic multivariable regression were utilized to examine how SWEMWBS scores could impact the responses to EQ-5D-5L dimensions, while controlling for variables such as age, gender, education level, health conditions, caring experience, and data collection methods. The effects of SWEMWBS on EQ-VAS and utility values were also examined.</p><p><strong>Results: </strong>One thousand nine individuals participated in the survey. Spearman's rank correlation revealed that all dimensions of EQ-5D-5L, except for the anxiety/depression dimension, exhibited weak correlations with all dimensions of SWEMWBS. Binary logistic regression and ordered logistic multivariable regression indicated that age, SWEMWBS scores, gender, health conditions, data collection methods, and caring experience significantly influenced the likelihood of reporting problems in EQ-5D-5L responses. Notably, better SWEMWBS outcomes increased the likelihood of reporting no or fewer problems across all EQ-5D-5L dimensions. Spearman's rank correlation suggested a moderate or strong positive correlation between SWEMWBS scores and EQ-5D-5L utility values and EQ-VAS. The results of multiple linear regression analysis revealed that SWEMWBS scores, health conditions, caring experience, and data collection methods were significantly associated with EQ-5D utility values and EQ-VAS.</p><p><strong>Conclusions: </strong>Individuals with better positive mental well-being results are more likely to report better results in PROMs like EQ-5D-5L. Future study is needed to understand the thought process and to explore strategies to cope with the response heterogeneity that led by the status of mental well-being.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"22 1","pages":"100"},"PeriodicalIF":3.2,"publicationDate":"2024-11-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11568534/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142644013","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}