Journal of Patient-Reported Outcomes最新文献

{"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}

{"title":"Comparison of patient-reported outcomes between alternative care provider-led and physician-led care for severe sleep disordered breathing: secondary analysis of a randomized clinical trial.","authors":"Maria J Santana, Oyindamola Jaja, Qiuli Duan, Erika D Penz, Kristin L Fraser, Patrick J Hanly, Sachin R Pendharkar","doi":"10.1186/s41687-024-00747-3","DOIUrl":"10.1186/s41687-024-00747-3","url":null,"abstract":"<p><strong>Background: </strong>Previous research has suggested that alternative (respiratory) care providers (ACP) may provide affordable, accessible care for sleep-disordered breathing (SDB) that decreases wait-times and improves clinical outcomes. The objective of this study was to compare ACP-led and sleep physician-led care for SDB on patient reported outcome and experiences, with a focus on general and health-related quality of life, sleepiness, and patient satisfaction.</p><p><strong>Methods: </strong>We conducted a secondary analysis of a randomized trial in which participants with severe SDB were assigned to either ACP-led or physician-led management. We created longitudinal linear mixed models to assess the impacts of treatment arm and timepoint on total and domain-level scores of multiple patient-reported outcome measures and patient-reported experience measures.</p><p><strong>Results: </strong>Patients in both treatment arms (ACP-led n = 81; sleep-physician = 75) reported improved outcomes on the Sleep Apnea Quality of Life Index, Health Utilities Index, and Epworth Sleepiness Scale. Patients in each group had similar and clinically meaningful improvements on domains assessing cognition, emotion, and social functioning. The linear mixed models suggested no significant difference between treatment arms on the patient-reported outcomes. However, scores significantly improved over time.</p><p><strong>Conclusions: </strong>Management of SDB using ACPs was comparable to physician-led care, as measured bypatient-reported outcome and experience measures. While loss to follow-up limits our findings, these results provide some support for the use of this novel health service delivery model to improve access to high quality SDB care.</p><p><strong>Clinical trial registration: </strong>This is analysis of data from the study registered Clinicaltrials.gov (NCT02191085).</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"107"},"PeriodicalIF":2.4,"publicationDate":"2024-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11427643/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142355769","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":"Translation, cultural adaptation and validation of the Tamil version of the Cardiff Acne Disability Index (CADI) in Sri Lanka.","authors":"Shamini Prathapan, Achala Liyanage, Sailakshmi Logeeswaran, Wathsala Ratnayake, Lilangi Devapriya, Jennifer Perera","doi":"10.1186/s41687-024-00782-0","DOIUrl":"https://doi.org/10.1186/s41687-024-00782-0","url":null,"abstract":"<p><strong>Background: </strong>Assessment of QoL has become an essential component in the holistic care of patients with acne. The Cardiff Acne Disability Index (CADI) is used globally to assess quality of life (QoL) in patients with acne. This study was done to validate CADI in Tamil, as 90 million of the global population are native speakers and Tamil is an official language of several countries.</p><p><strong>Methods: </strong>CADI was translated and validated into Tamil according to published guidelines. The Tamil versions of both CADI and Dermatology Life Quality Index (DLQI), was administered to 150 Sri Lankan young adults with acne. The clinical severity was assessed using the Global Acne Grading System (GAGS). Discriminant validity was tested by comparing the results of CADI with those of GAGS and DLQI, using reliability, validity, Cronbach's alpha, and Spearman's correlation coefficient measurements. Construct validity was assessed by factor analysis.</p><p><strong>Results: </strong>70% were female, and the mean age was 25.1 (SD, 5.2). The majority (91.3%) had acne of mild to moderate severity when measured by GAGS. CADI-Tamil showed high internal consistency and reliability (Cronbach's alpha coefficient = 0.83). The CADI total score showed a strong correlation (0.86) with that of DLQI. The correlation between CADI and GAGS was low, whereas CADI had a high and significant correlations with the DLQI. The construct validity explained 61% of the variability.</p><p><strong>Conclusions: </strong>The CADI-Tamil is a reliable and valid tool for assessing the QoL of Tamil speaking patients with acne. This tool will help clinicians understand the patient's perspective on acne.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"109"},"PeriodicalIF":2.4,"publicationDate":"2024-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11427624/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142355676","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":"Characteristics of longitudinal changes in quality of life and associated factors in patients post cardiac and thoracic aortic surgery: insights from a prospective cohort study.","authors":"Masaaki Sato, Hitoshi Mutai, Shuhei Yamamoto, Daichi Tsukakoshi, Keisuke Furuhashi, Hajime Ichimura, Yuko Wada, Tatsuichiro Seto, Hiroshi Horiuchi","doi":"10.1186/s41687-024-00787-9","DOIUrl":"https://doi.org/10.1186/s41687-024-00787-9","url":null,"abstract":"<p><strong>Background: </strong>Although quality of life (QOL) is an outcome of postoperative cardiac rehabilitation (CR), its course and related factors from postoperative hospitalization to the post-discharge period have not been adequately investigated. Additionally, the EuroQol-5Dimension-5Level (EQ-5D-5L) index score has not been characterized over the same period. We aimed to characterize QOL changes assessed by the EQ-5D-5L, over the period from hospitalization to 1 year post-discharge, in patients post-cardiac and thoracic aortic surgery, and investigate the factors associated with these temporal changes.</p><p><strong>Methodology: </strong>This prospective, single-center study included 117 patients who underwent open cardiovascular surgery (median age, 72 years; men, 69%). Patients were assessed for QOL status when transferred to the general ward; at discharge; and at 6 and 12 months after discharge, using the EQ-5D-5L index score and a generalized linear mixed model with random intercepts. Patients were classified into two groups based on score changes post-discharge. Logistic regression analysis evaluated factors associated with QOL decrease post-discharge.</p><p><strong>Results: </strong>The EQ-5D-5L index score significantly increased over time, except between 6 and 12 months post-discharge; \"Common activities\" was the most common dimension showing score improvement. In 25 patients (21%), the EQ-5D-5L index scores were lower after discharge compared to their scores at discharge. In the logistic regression analysis, Barthel Index pre-admission, preoperative hemoglobin level, and Mini-Mental State Examination-Japanese scores pre-discharge were significantly associated with QOL decline after adjusting for the European System for Cardiac Operative Risk Evaluation II score.</p><p><strong>Conclusions: </strong>Most patients post-cardiac or thoracic aortic surgery experienced improved QOL from postoperative hospital stay to 1 year post-discharge. However, in patients with pre-operative basic activities of daily living, hemoglobin and post-operative cognitive decline may require ongoing comprehensive CR because of reduced QOL. Given the potential selection bias introduced by the relatively small sample size in this study, future research involving larger populations is necessary.</p>","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"8 1","pages":"111"},"PeriodicalIF":2.4,"publicationDate":"2024-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11427642/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142355768","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":"The psychometric properties of the Quality of Life in Neurological Disorders (Neuro-QoL) measurement system in neurorehabilitation populations: a systematic review","authors":"Rebecca Ataman, Rehab Alhasani, Line Auneau-Enjalbert, Adria Quigley, Henry Ukachukwu Michael, Sara Ahmed","doi":"10.1186/s41687-024-00743-7","DOIUrl":"https://doi.org/10.1186/s41687-024-00743-7","url":null,"abstract":"To systematically review the literature of existing evidence on the measurement properties of the Quality of Life in Neurological Disorders (Neuro-QoL) measurement system among neurorehabilitation populations. The Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) guided this systematic review in which we searched nine electronic databases and registries, and hand-searched reference lists of included articles. Two independent reviewers screened selected articles and extracted data from 28 included studies. COSMIN’s approach guided extraction and synthesizing measurement properties evidence (insufficient, sufficient), and the modified GRADE approach guided synthesizing evidence quality (very-low, low, moderate, high) by diagnosis. Neuro-QoL has sufficient measurement properties when used by individuals with Huntington’s disease, Multiple Sclerosis, Parkinson’s disease, stroke, lupus, cognitive decline, and amyotrophic lateral sclerosis. The strongest evidence is for the first four conditions, where test-retest reliability, construct validity, and responsiveness are nearly always sufficient (GRADE: moderate-high). Structural validity is assessed only in multiple sclerosis and stroke but is often insufficient (GRADE: moderate-high). Criterion validity is sufficient in some stroke and Huntington’s disease domains (GRADE: high). Item response theory analyses were reported for some stroke domains only. There is limited, mixed evidence for responsiveness and measurement error (GRADE: moderate-high), and no cross-cultural validity evidence Neuro-QoL domains can describe and evaluate patients with Huntington’s disease, multiple sclerosis, Parkinson’s disease, and stroke, but predictive validity evidence would be beneficial. In the other conditions captured in this review, a limited number of Neuro-QoL domains have evidence for descriptive use only. For these conditions, further evidence of structural validity, measurement error, cross-cultural validity and predictive validity would enhance the use and interpretation of Neuro-QoL.","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"27 1","pages":""},"PeriodicalIF":2.7,"publicationDate":"2024-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142262399","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Health-related quality of life among women diagnosed with in situ or invasive breast cancer and age-matched controls: a population-based study","authors":"Synne K. H. Bøhn, Karianne Svendsen, A. Balto, Ylva Maria Gjelsvik, Tor Åge Myklebust, Elin Børøsund, Hege R. Eriksen, A. Meland, K. Østby, L. Solberg Nes, Cecilie E. Kiserud, Kristin V. Reinertsen, G. Ursin","doi":"10.1186/s41687-024-00781-1","DOIUrl":"https://doi.org/10.1186/s41687-024-00781-1","url":null,"abstract":"A breast cancer (BC) diagnosis may negatively affect health-related quality of life (HRQoL). However, there are few comparisons of HRQoL at several time points for women with BC, and particular when subdivided into invasive and in situ tumors. The purpose of this study was to investigate various aspects of HRQoL in women recently diagnosed with invasive BC or ductal carcinoma in situ (in situ) compared to age-matched BC free controls in a population-wide sample recruited through the Cancer Registry of Norway. This cross-sectional study utilized HRQoL data collected in 2020–2022 from a digital survey including 4117 cases (3867 women with invasive BC and 430 with in situ) and 2911 controls. HRQoL was assessed ≥ 21 days after diagnosis, using EORTC QLQ-C30. This includes scores assessing global quality of life (gHRQoL) and HRQoL functions and symptoms. Multivariable regression analyses were used to compare HRQoL between cases and controls and to identify factors associated with gHRQoL and fatigue. Additionally, HRQoL 14 months after diagnosis was analyzed in 1989 of the included cases and in 1212 of the controls. Score differences of ≥ 10 points were considered clinically relevant and thus presented in the results. Invasive BC cases had lower gHRQoL, role- and social functioning in addition to more fatigue than controls. In situ cases had lower role—and social functioning than controls. Invasive BC cases scored worse than in situ on all domains, but the differences were not considered clinically relevant. Physical activity was associated with better gHRQoL and less fatigue in invasive BC, in situ and controls. Both invasive BC and in situ cases improved their role- and social functioning scores from diagnosis to 14 months follow-up, however no improvement was seen for fatigue. Women with invasive BC and in situ reported lower role- and social functioning scores than controls right after diagnosis with improvements 14 months after diagnosis. Physical activity was associated with better gHRQoL and less fatigue and should, whenever possible, play a key role in the care for BC patients.","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"104 1","pages":""},"PeriodicalIF":2.7,"publicationDate":"2024-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142269781","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Cross-cultural adaptation and psychometric validation of the Chichewa (Malawi) PedsQL™ 4.0 Generic Core Scales child self-report and PedsQL™ 4.0 GCS teen self-report","authors":"Lucky Gift Ngwira, Hendramoorthy Maheswaran, Stavros Petrou, Louis W. Niessen, Sarah C. Smith","doi":"10.1186/s41687-024-00761-5","DOIUrl":"https://doi.org/10.1186/s41687-024-00761-5","url":null,"abstract":"The PedsQL™ 4.0 Generic Core Scales (GSC) have been translated into over 60 languages, but use in the sub-Saharan African region is limited. This study aimed to cross-culturally adapt and validate the PedsQL™ 4.0 GCS child self-report and teen self-report versions into the Chichewa language for Malawi. The English (USA) versions were adapted (translation, back translation and cognitive interviews to evaluate conceptual equivalence) into Chichewa. We recruited 289 children (8–17 years) in Blantyre, Malawi. Classical psychometrics at the item level (missing data, endorsement frequencies, item redundancy) and scale level (internal consistency, convergent, discriminant and known groups validity) was used to evaluate the new Chichewa versions. Six items were found to need cultural adaptation for Malawi. There were problems with missing data (< 5%) and adjacent endorsement frequency (< 10%) among younger children. Internal consistency reliability was acceptable (Cronbach α > 0.7). Convergent validity was generally strong (correlations > 0.4). Discriminant validity (p > 0.05) was evident with respect to gender and age, but not for school grade (p < 0.05). Effect sizes indicating known groups validity were in the expected direction but of variable magnitude. We have successfully adapted the PedsQL™ 4.0 GCS child self-report and teen self-report into Chichewa for use in Malawi. Many aspects of the psychometric evaluation were promising, though some elements were more mixed and we have not yet been able to evaluate test-retest reliability or responsiveness. We suggest that the PedsQL™4.0 GCS child and teen self-reports should be used with caution among children and adolescents in Malawi.","PeriodicalId":36660,"journal":{"name":"Journal of Patient-Reported Outcomes","volume":"10 1","pages":""},"PeriodicalIF":2.7,"publicationDate":"2024-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142209934","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}