Journal of Patient-Reported Outcomes最新文献

{"title":"The patient-reported outcome measure for older people living with frailty receiving acute care (PROM-OPAC): field-testing and validation.","authors":"James D van Oppen, Simon P Conroy, Jagruti Lalseta, Nicola Mackintosh, Peter Riley, Vivien Richardson, Jose M Valderas, Timothy J Coats","doi":"10.1186/s41687-024-00796-8","DOIUrl":"https://doi.org/10.1186/s41687-024-00796-8","url":null,"abstract":"<p><strong>Background: </strong>Current acute healthcare service metrics are not meaningful for older people living with frailty. Healthcare knowledge, situational security, and physical and psychosocial function are important outcomes typically not collected. The use of patient-reported outcome measures (PROMs) could support these assessments. Existing instruments are not comprehensive as they typically consider function, while older people with frailty also value enablement (self-determination and security in health and healthcare). This study field-tested and validated a PROM for older people with frailty receiving acute care (PROM-OPAC) to measure enablement.</p><p><strong>Methods: </strong>People aged 65+ with Clinical Frailty Scale 5-8 were recruited within seventy-two hours of an emergency attendance. Iterations of the novel instrument were administered over three stages: (1) preliminary field-testing for reliability (response distribution and internal consistency) and structure (exploratory factor analysis, EFA); (2) intermediate field-testing of an improved instrument for reliability and structure; (3) final draft validation assessing reliability, structure (confirmatory factor analysis, CFA), and construct validity based on a priori hypotheses. Feasibility was appraised throughout using data completeness and response rates and times.</p><p><strong>Results: </strong>241 people participated. Three items of a preliminary seven-item measure had poor response distribution or loading and were accordingly improved. The intermediate instrument had interpretability issues and three items required further improvement. The final eight-item draft had acceptable reliability (Cronbach's alpha: 0.71), structure (two factors for self-determination and security; RMSEA: 0.065; TLI: 0.917; CFI: 0.944), and construct validity (lower scores from respondents waiting longer and requiring admission). Feasibility was promising (response rate 39%; 98% responses complete; median completion time 11 (IQR: 12) minutes).</p><p><strong>Conclusions: </strong>Administration of the PROM-OPAC appeared feasible and the instrument had acceptable psychometric properties. Further evaluation is required to assess generalisability.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"119"},"PeriodicalIF":2.4,"publicationDate":"2024-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11484973/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142476746","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Psychometric evaluation of the Adelphi Adherence Questionnaire (ADAQ©) in adults with osteoarthritis.","authors":"Nathan Clarke, Andrew Trigg, Rob Arbuckle, Jan Stochl, Victoria Higgins, Sarah Bentley, James Piercy","doi":"10.1186/s41687-024-00789-7","DOIUrl":"https://doi.org/10.1186/s41687-024-00789-7","url":null,"abstract":"<p><strong>Background: </strong>Medication non-adherence is a common issue in chronic illness. The World Health Organization has recognized a need for a valid and reliable method of measuring adherence to understand and mitigate non-adherence. This study aimed to psychometrically evaluate the English version of the Adelphi Adherence Questionnaire (ADAQ©), a questionnaire designed to assess patient-reported medication adherence across multiple therapy areas, in patients with Osteoarthritis (OA).</p><p><strong>Methodology: </strong>Data from the Adelphi OA Disease Specific Programme™, a survey of physicians and their consulting adult patients with OA conducted in the United States, November 2020 to March 2021, was used to assess the psychometric properties of the ADAQ. Patients completed the ADAQ, Adherence to Refills and Medication Scale (ARMS), Western Ontario and McMaster Universities Arthritis Index (WOMAC), and EQ-5D-3L. The measurement model of the 13-item ADAQ was assessed and refined using latent variable modelling (Multiple Indicator Multiple Cause, confirmatory and exploratory factor analyses, item response theory, Mokken scaling, and bifactor analyses). Correlational analyses (Spearman's rank and polyserial as appropriate) with ARMS, WOMAC, and EQ-5D-3L scores assessed construct validity. Anchor- and distribution-based analyses were performed to estimate between-group clinically important differences (CID).</p><p><strong>Results: </strong>Overall, 723 patients were included in this analysis (54.5% female, 69.0% aged ≥ 60). Latent variable modelling indicated a unidimensional reflective model was appropriate, with a bifactor model confirming an 11-item essentially unidimensional score. Items 12 and 13 were excluded from scoring as they measured a different concept. The ADAQ had high internal reliability with omega hierarchical and Cronbach's alpha coefficients of 0.89 and 0.97, respectively. Convergent validity was supported by moderate correlations with items of the ARMS, and physician-reported adherence and compliance. Mean differences in ADAQ score between high and low adherence groups yielded CID estimates between 0.49 and 1.05 points, with a correlation-weighted average of 0.81 points.</p><p><strong>Conclusion: </strong>This scoring model showed strong construct validity and internal consistency reliability when assessing medication adherence in OA. Future work should focus on confirming validity across a range of disease areas.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"118"},"PeriodicalIF":2.4,"publicationDate":"2024-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11473480/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142476745","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Roles of different organizations in implementing patient-reported measures in routine maternity care in Finland.","authors":"Kirsi Marja-Leena Väyrynen, An Chen, Seppo Heinonen, Aydin Tekay, Paulus Torkki","doi":"10.1186/s41687-024-00793-x","DOIUrl":"10.1186/s41687-024-00793-x","url":null,"abstract":"<p><strong>Background: </strong>The integration of patient-centered care (PCC) and value-based healthcare (VBHC) principles, emphasizing personalized, responsive care and cost efficiency, is crucial in modern healthcare. Despite advocation from the International Consortium for Health Outcomes Measurement (ICHOM) for the global adoption of these principles through patient-reported measures (PRMs), their implementation, especially the pregnancy and childbirth (PCB) set, remains limited in maternity care. This study focuses on understanding the optimal organizational entity for integrating standard ICHOM-PCB-PRMs into routine maternity care in Finland. It aims to clarify the distribution of tasks among stakeholders and gather Finnish maternity healthcare professionals' perspectives on organizational responsibility in PRM collection. The emphasis was on identifying the optimal organizational framework for managing PRMs in maternity care.</p><p><strong>Results: </strong>A total of 66 maternity healthcare professionals participated in the study, reaching a consensus that public maternity care centers in Finland should be the primary entity responsible for managing PRMs in the maternity sector. Key aspects such as confidence with the role as a mother, maternal confidence with breastfeeding, and satisfaction with the result of care were identified as crucial and should be inquired about in both public maternity care centers and hospital maternity wards. The findings highlight the importance of comprehensive and consistent attention to these PRMs across public maternity care centers and hospital maternity settings to ensure holistic and effective maternal care.</p><p><strong>Conclusions: </strong>The study highlights the central role of public maternity care centers in the collection and management of PRMs within Finnish maternity care, as agreed upon by the professional consensus. It underscores the importance of a consistent and holistic approach to PRM inquiry across different care settings to enhance the quality and effectiveness of maternity care. This finding is crucial for policymakers and healthcare practitioners, suggesting that reinforcing the collaborative efforts between public maternity care centers and hospital maternity wards is vital for a patient-centric, efficient healthcare system. Aligning with PCC and VBHC principles, this approach aims to improve healthcare outcomes for pregnant and postpartum women in Finland, emphasizing the need for a unified strategy in managing maternity care.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"117"},"PeriodicalIF":2.4,"publicationDate":"2024-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11450123/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142366813","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Psychometric characteristics of the Spanish version of the HIV Symptom Index.","authors":"Olatz Ibarra-Barrueta, Oihana Mora-Atorrasagasti, Itziar Palacios-Zabalza, Urko Aguirre-Larracoechea, Maria Jose Legarreta, Nerea González-Hernández","doi":"10.1186/s41687-024-00780-2","DOIUrl":"10.1186/s41687-024-00780-2","url":null,"abstract":"<p><strong>Background: </strong>The aim of this study was to determine the psychometric properties of the Spanish-language version of the HIV-Symptom Index (HIV-SI) questionnaire in Spanish patients undergoing antiretroviral therapy.</p><p><strong>Methods: </strong>Between 2014 and 2016, an observational, multicenter, prospective cohort study was conducted in seventeen Spanish hospitals to validate HIV-SI questionnaire in terms of: construct validity (confirmatory factor analysis), internal consistency (Cronbach's alpha), convergent validity (Pearson's correlation coefficient) and Known-group validity. In addition, a sensitivity to change analysis was also performed.</p><p><strong>Results: </strong>A total of 232 patients were included in the study. They had a mean age of 46.17 (SD9.82) and were 75% male. The median overall score for the HIV-SI was 10 (IQR 4- 19.5) and the most common symptoms reported were feelings of nervousness or anxiety, fatigue or energy loss, feeling sad or depressed, stomach pain or bloating, and difficulty sleeping. In the current study, the Spanish HIV-SI questionnaire showed a high internal consistency (α = 0.89) and adequate construct validity (CFI and TLI > 0.90). When contrasted with the MOS-HIV questionnaire, an inverse correlation was found. It showed a good association with the mental (r=-0.61; P < 0.0001) and physical score (r=-0.60; P < 0.0001). In a multivariate analysis, the age of the patient, female condition, hepatitis C coinfection, concomitant treatment and non-adherence resulted in a higher HIV-SI score.</p><p><strong>Conclusions: </strong>Our study has shown that the Spanish HIV-SI is a valid and reliable self-administered PROM for routine measurement of patient- reported symptoms among Spanish patients on antiretroviral treatment.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"116"},"PeriodicalIF":2.4,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11445215/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142355674","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Top 100 most cited articles on Patient Reported Experience Measures (PREM): insights and perspectives.","authors":"Asiya Attar, Kasturi Shukla, Preeti Mulay","doi":"10.1186/s41687-024-00791-z","DOIUrl":"10.1186/s41687-024-00791-z","url":null,"abstract":"<p><strong>Purpose: </strong>Patient experience is fundamental to Patient-Centered Care (PCC). Although prior bibliometric research studies have focused on various aspects of PCC, a comprehensive analysis of PREM articles is required to understand its impact on the clinical practices. This study aims to analyze the top 100 most-cited PREM articles to examine the critical studies and related trends.</p><p><strong>Methods: </strong>The 100 most cited articles on PREM were gathered from the Web of Science using a combination keyword search approach. The following information was extracted: study design, sample size, topic, number of citations, authorship, country, year of publication, journal title, and dimensions included in these PREM instruments. The VOSviewer software was used to generate graphical bibliometric networks.</p><p><strong>Results: </strong>The citation count of the top 100 PREM articles varied from 20 to 775 citations. 21 articles had received a minimum of 100 citations. All the articles were in English, and out of these 45% were from the USA. The cross-sectional study (69%) was the most common study design, and the impact of treatment (44%) was the most frequent topic. The common PREM instruments used were customized PREM questionnaires (16%) and HCAHPS (10%).</p><p><strong>Conclusion: </strong>This bibliometric research showed that the area of PREM is far from being saturated. The authors have attempted to provide an overview of global PREM research. Future research should focus on studies from underdeveloped and developing countries to develop condition-specific PREM tools. Longitudinal researches among special populations and studies in day-care and outpatient settings are recommended in future.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"114"},"PeriodicalIF":2.4,"publicationDate":"2024-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11442728/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142355675","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient-reported outcome measures for lupus nephritis: content validity of LupusQoL and FACIT-Fatigue.","authors":"Mona L Martin, Jennifer N Hill, Jennifer L Rogers, Deven Chauhan, Wen-Hung Chen, Kerry Gairy","doi":"10.1186/s41687-024-00783-z","DOIUrl":"10.1186/s41687-024-00783-z","url":null,"abstract":"<p><strong>Background: </strong>Lupus nephritis (LN), a severe organ manifestation of systemic lupus erythematosus (SLE), significantly impacts health-related quality of life (HRQoL). Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-Fatigue) and Lupus Quality of Life (LupusQoL) have been validated to measure HRQoL in SLE, but not specifically in LN. Patient-reported symptoms of LN are not well-reported. We assessed the content validity and relevance of these measures in evaluating patients with LN and their LN-related experiences.</p><p><strong>Methods: </strong>This qualitative, interview-based study enrolled patients with LN from three US sites from a larger, retrospective survey study. The interview comprised an open-ended concept elicitation part and a more structured cognitive part. Concept elicitation was used to identify relevant themes describing the patients' experiences. Patients were asked to describe their LN-related symptoms, the severity and impact of those symptoms and their satisfaction with treatment. A cognitive interview approach evaluated the appropriate understanding of the items, instructions, and response options and asked patients about their understanding of the FACIT-Fatigue or LupusQoL measures, their relevance to the condition, and any aspects of confusion or need for better clarity of the questionnaires. All interviews were recorded and transcribed. The concept elicitation data were coded, while the cognitive interview data were tabulated to present the participants' responses next to the interview questions to support the evaluation of their understanding of the questionnaire items.</p><p><strong>Results: </strong>Overall, 10 patients participated in FACIT-Fatigue and another 10 in LupusQoL interviews; 18 patients were female, 10 were Black (self-reported) and 17 were receiving maintenance treatment for LN with stable disease activity. When patients recalled their symptoms, 670 expressions of varying symptoms were reported. All patients described pain, discomfort, and energy-related symptoms. Urinary frequency and non-joint swelling were most frequently attributed to LN rather than SLE. Patients felt the questions asked in the FACIT-Fatigue and LupusQoL surveys were relevant to their LN experience.</p><p><strong>Conclusions: </strong>The symptoms reported by patients with LN were consistent with symptoms reported by the overall SLE population. However, patients indicated that some symptoms of LN were more profound than symptoms of SLE alone, affecting a broad range of areas of daily life activity and resulting in a higher burden on their HRQoL. FACIT-Fatigue and LupusQoL demonstrated content relevance as meaningful tools for patients with LN. However, further quantitative data collection is needed to ensure that these patient-reported outcome tools demonstrate good measurement properties in an LN population.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"115"},"PeriodicalIF":2.4,"publicationDate":"2024-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11442872/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142355673","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Educating patients about patient-reported outcomes-are we there yet?","authors":"Elizabeth Unni, Maud M van Muilekom, Kate Absolom, Bishnu Bajgain, Lotte Haverman, Maria Santana","doi":"10.1186/s41687-024-00745-5","DOIUrl":"10.1186/s41687-024-00745-5","url":null,"abstract":"<p><strong>Background: </strong>Using Patient Reported Outcome Measures (PROMs) in clinical settings can improve patient outcomes by enhancing communication between patient and provider. There has been significant improvements in the development of PROMs, their implementation in routine patient clinical care, training physicians and other healthcare providers to interpret the PROMs results to identify any issues reported by the patient, and to use the PROMs results to provide or modify the treatment.</p><p><strong>Main body: </strong>Despite the increased use of PROMs, the lack of PROM completion by patients is a major concern in the optimal use of PROMs. Studies have shown several reasons why patients do not complete PROMs and one of the reasons is their lack of understanding of the significance of PROMs and their utility in their clinical care. While examining the various strategies that can be used to improve the uptake of PROM completion by patients, educating patients about the use of PROMs has been recommended. There is less evidence on how patients are trained or educated about PROMs. It may also be possible that the patient education strategies are not reported in the publications. This brings up the question of evaluation of the educational strategies used.</p><p><strong>Conclusion: </strong>Our symposium at the 2023 ISOQOL conference brought together a range of experiences and learning around patient-centered PROMs educational activities used in the Netherlands, Canada, and the UK. This commentary is aimed to describe the lay of the land about educational activities around the use of PROMs in clinical care for patients, recognizing the gaps, and posing questions to be considered by the research and clinical community.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"113"},"PeriodicalIF":2.4,"publicationDate":"2024-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11442418/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142355771","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring the factors influencing the health-related quality of life in patients experiencing adverse drug reactions: a cross-sectional study.","authors":"Garapati Pavan, Manish Kumar, Krishna Murti, Sameer Dhingra, V Ravichandiran","doi":"10.1186/s41687-024-00790-0","DOIUrl":"https://doi.org/10.1186/s41687-024-00790-0","url":null,"abstract":"<p><strong>Background: </strong>This study aimed to assess the factors influencing health-related quality of life (HRQoL) in patients experiencing adverse drug reactions (ADRs) at a tertiary care public sector hospital. A cross-sectional study was conducted over a period of 18 months, and included both male and female patients aged 18 years and above. Patients who visited the outpatient and inpatient departments with complaints associated with ADRs were included in this study. HRQoL data were collected using the EuroQol-5 Dimension-5 Level (EQ-5D-5L) questionnaire to assess five dimensions of health on a five-level scale. Descriptive statistics, t-tests, and analysis of variance were used to analyze the data. Multivariate regression analysis was performed to identify the potential determinants of HRQoL.</p><p><strong>Results: </strong>A total of 316 patients were included in the study among these participants, of which 54% were female, and 65% were from rural areas. The majority (68%) of the patients had moderately severe ADRs, and 63% of the participants had an income < 2.5 lakh Indian rupees (3009 USD). The mean EQ-5D-5L and EuroQoL Visual Analog Scale (EQ VAS) scores of the study participants were 0.714 and 69.73, respectively. The variables ADR severity, income, and age showed a significant difference (p < 0.05) in HRQoL.</p><p><strong>Conclusion: </strong>This study provides insights into HRQoL among patients with ADRs and identifies the determinants of HRQoL. The findings of this study will contribute to improving patient-centered care and optimizing patient outcomes.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"112"},"PeriodicalIF":2.4,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11436490/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142355672","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Can the different versions of the Shirom-Melamed Burnout Measure be used to measure burnout among healthcare professionals? A systematic review of psychometric properties.","authors":"Sabrina Figueiredo, Jacques Arrieux, Samia Abdallah, Timothy C McCall, Ulrich Koch, Eliezer Oliveira","doi":"10.1186/s41687-024-00788-8","DOIUrl":"https://doi.org/10.1186/s41687-024-00788-8","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;The prevalence of Occupational Burnout is high among healthcare professionals (HCP). Hence, it is crucial to have robust measures for ascertaining burnout in this population. The Shirom-Melamed Burnout Measure is a prevalent tool used in the diagnosis of burnout, and in the delivery planning of mental health services. The 14-item Shirom-Melamed Burnout Measure (SMBM) was developed after a methodological revision of the 22-item Shirom-Melamed Burnout Questionnaire (SMBQ). Studies on the psychometric properties of the SMBM and SMBQ exist, but there remains a need for thorough evaluation to assess the methodological quality of individual studies. To address this gap, this systematic review aimed to critically appraise the measurement properties of the different versions of the Shirom-Melamed Burnout Measure/Questionnaire (SMBM/Q) used among healthcare professionals.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methodology: &lt;/strong&gt;Four databases (PubMed, CINAHL, PsychINFO, and Scopus) were searched for studies on the psychometric properties of all versions of the SMBM/Q among HCP. The methodological quality of the studies was evaluated using the COSMIN Risk of Bias checklist. Evidence supporting the measurement properties (EMP) of the SMBM was synthesized using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Our final pool consisted of five research articles. One study on the 12-item SMBM was included to estimate content validity, two studies reported on the 14-item SMBM, while the other two employed the 22-item version. Interestingly, each study used the SMBM in a different language, namely English/Hebrew, Chinese, French, Serbian, and Swedish. Structural validity, internal consistency, and construct validity are the SMBM's most assessed measurement properties. The Hebrew and French versions demonstrated high levels of structural validity and internal consistency, and the remaining reports on validity demonstrated low levels due to methodological flaws.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;Per COSMIN guidelines, the SMBM should not be utilized for clinical purposes due to insufficient content validity, but has promising potential with ongoing research. Engaging critical stakeholders for concept elicitation will ensure the relevance, comprehensiveness, and comprehensibility of the PRO items. Likewise, establishing an MIC will allow capturing change over time, which will benefit longitudinal experimental studies. Occupational burnout is a significant problem among healthcare professionals, and it is crucial to have a reliable tool to measure it. The Shirom-Melamed Burnout Measure (SMBM) is commonly used to diagnose burnout and plan mental health services. Studies on the psychometric properties of the SMBM exist, but there remains a need for thorough evaluation to assess the methodological quality of individual studies. To address this gap, this systematic review critically appr","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"108"},"PeriodicalIF":2.4,"publicationDate":"2024-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11427641/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142355767","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Economic burden and quality of life of caregivers of patients with sickle cell disease in the United Kingdom and France: a cross-sectional study.","authors":"Martin Besser, Sian Bissell O'Sullivan, Siobhan Bourke, Louise Longworth, Giovanna Tedesco Barcelos, Yemi Oluboyede","doi":"10.1186/s41687-024-00784-y","DOIUrl":"https://doi.org/10.1186/s41687-024-00784-y","url":null,"abstract":"<p><strong>Background: </strong>Sickle cell disease (SCD), a genetic blood disorder that affects red blood cells and oxygen delivery to body tissues, is characterized by haemolytic anaemia, pain episodes, fatigue, and end-organ damage with acute and chronic dimensions. Caring for patients with SCD imposes a high burden on informal caregivers. This study aims to capture the impact on health-related quality of life (HRQoL) and economic burden of caregiving for patients with SCD.</p><p><strong>Methods: </strong>Validated instruments of HRQoL (EQ-5D-5L, Carer Quality of Life-7 dimensions [CarerQol-7D]) and productivity (Work Productivity and Activity Impairment Questionnaire: Specific Health Problem [WPAI: SHP]) were administered via a cross-sectional online survey to caregivers in the United Kingdom (UK) and France. Demographics, HRQoL, and economic burden data were analyzed using descriptive statistics. Economic burden was determined using country-specific minimum and average wage values. Subgroup analysis examined caregivers with and without SCD.</p><p><strong>Results: </strong>Sixty-nine caregivers were recruited (UK, 43; France, 26), 83% were female, and 22% had SCD themselves. The mean (SD) caregiver EQ-5D-5L score was 0.66 (0.28) (UK, 0.62; France, 0.73), and the mean CarerQol-7D score was 80.69 (24.40) (UK, 78.72 [25.79]; France, 83.97 [22.01]). Mental health problems were reported in 72% and 70% of caregivers measured using the EQ-5D-5L and CarerQol-7D, respectively. Financial problems were reported by 68% of caregivers, with mean annual minimum wage productivity losses of £4209 and €3485, increasing to £5391 and €9319 for average wages. Sensitivity analysis determined additional HRQoL decrements for caregivers with and without, SCD.</p><p><strong>Conclusion: </strong>Caring for patients with SCD impacts the HRQoL and economic burden of caregivers. Further research to support the complex needs of SCD caregivers is required.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"110"},"PeriodicalIF":2.4,"publicationDate":"2024-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11427640/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142355770","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}