Health and Quality of Life Outcomes最新文献

{"title":"Development of a PROM to measure patient-centredness in chronic care consultations in primary care.","authors":"Anne Holm, Anna Bernhardt Lyhnebeck, Sussi Friis Buhl, Kristine Bissenbakker, Jette Kolding Kristensen, Anne Møller, Anders Prior, Zaza Kamper-Jørgensen, Sidsel Böcher, Mads Aage Toft Kristensen, Asger Waagepetersen, Anders Hye Dalsgaard, Volkert Siersma, Ann Dorrit Guassora, John Brandt Brodersen","doi":"10.1186/s12955-024-02327-x","DOIUrl":"10.1186/s12955-024-02327-x","url":null,"abstract":"<p><strong>Introduction: </strong>Validated patient-reported outcome measures (PROMs) are crucial for assessing patients' experiences in the healthcare system. Both clinically and theoretically, patient-centered consultations are essential in patient-care, and are often suggested as the optimal strategy in caring for patients with multimorbidity.</p><p><strong>Aim: </strong>To either identify or develop and validate a patient-reported outcome measure (PROM) to assess patient-centredness in consultations for patients with multimorbidity in general practice.</p><p><strong>Methods: </strong>We attempted to identify an existing PROM through a systematic literature review. If a suitable PROM was not identified, we planned to (1) construct a draft PROM based on items from existing PROMs, (2) conduct group and individual interviews among members of the target population to ensure comprehensibility, comprehensiveness and relevance, and (3) perform a psychometric validation in a broad sample of patients from primary care.</p><p><strong>Results: </strong>We did not identify an eligible PROM in the literature review. The item extraction and face validity meetings resulted in a new PROM consisting of 47 items divided into five domains: biopsychosocial perspective; `patient-as-person'; sharing power and responsibility; therapeutic alliance; and coordinated care. The interviews resulted in a number of changes to the layout and phrasing as well as the deletion of items. The PROM used in the psychometric validation consisted of 28 items. Psychometric validation showed high internal consistency, overall high reliability, and moderate fit indices in the confirmatory factor analysis for all five domains. Few items demonstrated differential item functioning concerning variables such as age, sex, and education.</p><p><strong>Conclusions: </strong>This study successfully developed and validated a PROM to measure patient-centredness in consultations for patients with multimorbidity. The five domains demonstrated high reliability and validity, making it a valuable tool for measuring patient-centredness of consultations in general practice.</p><p><strong>Trial registration: </strong>Trial registration number (data for psychometric validation): https://clinicaltrials.gov : NCT05676541 Registration Date: 2022-12-16.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"4"},"PeriodicalIF":3.2,"publicationDate":"2025-01-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11707913/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142948029","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Health-related quality of life and health state utility value in idiopathic pulmonary fibrosis: a systematic review and meta-analysis.","authors":"Guixiang Zhao, Siyuan Lei, Ya Li, Zhenzhen Feng, Jiansheng Li","doi":"10.1186/s12955-024-02326-y","DOIUrl":"https://doi.org/10.1186/s12955-024-02326-y","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Idiopathic pulmonary fibrosis (IPF) is associated with high mortality, heavy economic burden, limited treatment options and poor prognosis, and seriously affects the health-related quality of life (HRQoL) and life expectancy of patients. This systematic review and meta-analysis of HRQoL and health state utility value (HSUV) in IPF patients and the instruments used in this assessment aimed to provide information sources and data support for the future research on IPF HRQoL and HSUV.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;We searched the PubMed, EMBASE, Web of Science and Cochrane Library databases for studies reporting the HRQoL or HSUV of IPF patients, with the retrieval time from the establishment of each database to April 2024. After two researchers independently screened the literature, extracted the data, and evaluated the risk of bias in the included studies, pooled analysis was performed on the measurement tools adopted in more than two studies. Subgroup analysis was employed to explore the source of heterogeneity, and sensitivity analysis was used to assess the robustness of the results. Funnel-plot directed evaluation combined with Egger's test quantitative evaluation was conducted to detect publication bias.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Sixty-nine studies were ultimately included, covering eighteen measurement tools. The literature quality was generally excellent. The St. George's Respiratory Questionnaire (SGRQ), EuroQoL Five Dimensions Questionnaire (EQ-5D), Short Form-36 (SF-36) and the King's Brief Interstitial Lung Disease (KBILD) were the most common instruments, among which the EQ-5D included the HSUV and the visual analog scale (VAS). The results of the meta-analysis revealed that the pooled SGRQ total score was 45.28 (95% confidence interval [CI] 41.10-49.47), the mean EQ-5D utility score was 0.75 (95% CI: 0.72-0.79), the total EQ-5D VAS score was 66.88 (95% CI: 63.75-70.01), and the pooled SF-36 physical component summary (PCS) and mental component summary (MCS) score were 36.70 (95% CI: 32.98-40.41) and 48.99 (95% CI: 47.44-50.55), respectively. The total KBILD score was 58.31 (95% CI: 55.43-61.19), the IPF specific version of the SGRQ (SGRQ-I) was 40.38 (95% CI: 28.81-51.96) and the Leicester Cough Questionnaire (LCQ) score was 16.09 (95% CI: 15.45-16.74). The pooled result of the University of California San Diego Shortness of Breath Questionnaire (USCD-SOBQ) was 45.05 (95% CI: 41.56-48.55). The results of other instruments, such as the tool to assess quality of life in IPF (ATAQ-IPF), the World Health Organization Quality of Life assessment 100 (WHOQoL-100) and the 12-item short-form health survey (SF-12) were similar to those of the above measurement tools. Regretfully, subgroup analyses did not identify the source of heterogeneity, but sensitivity analyses demonstrated robustness of our results. Except for the SGRQ total, our results showed little possibility of publication bias.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"3"},"PeriodicalIF":3.2,"publicationDate":"2025-01-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142931617","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Lived experiences of dysphagia-related quality of life among esophageal cancer patients: a qualitative study.","authors":"Tseganesh Asefa, Winta Tesfaye, Gedamnesh Bitew, Hiwot Tezera","doi":"10.1186/s12955-024-02319-x","DOIUrl":"https://doi.org/10.1186/s12955-024-02319-x","url":null,"abstract":"<p><strong>Introduction: </strong>Esophageal cancer impairs basic functions such as eating and drinking frequently resulting in difficulty swallowing (dysphagia) and other problems such as weight loss, pain, fatigue, and taste alterations. There is still a research gap in understanding the impact of dysphagia on quality of life, as patients continue to bear significant physical and psychological burdens despite advances in treatment. This study attempted to address this gap by examining the lived experiences of dysphagia-related quality of life among esophageal cancer patients.</p><p><strong>Methods: </strong>A phenomenological study was employed to analyze the data provided by 14 patients with esophageal cancer at the Oncology Center of the University of Gondar Comprehensive Specialized Hospital from March to April 2023. An interview guide was employed to carry out in-depth interviews with purposively selected patients. The interviews were audio-taped, translated, transcribed, and analysed using thematic analysis.</p><p><strong>Results: </strong>Three main themes emerged from the analysis of the participant interviews: physical challenges related to difficulty swallowing, altered dietary habits, and struggle to maintain weight; psychosocial strain, including emotional distress and social isolation; and reliance on assistance, encompassing both dependency and financial burden.</p><p><strong>Conclusion and recommendations: </strong>This study underscores the significant physical, emotional, and social challenges experienced by esophageal cancer patients with dysphagia. To enhance support, healthcare providers should develop personalized care plans that address both the physical and emotional aspects of dysphagia, with sensitivity to cultural practices. Efforts should also be made to alleviate feelings of dependency and promote public awareness to reduce stigma and build a more supportive community.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"2"},"PeriodicalIF":3.2,"publicationDate":"2025-01-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142931620","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Childhood heart disease and parental emotional wellbeing: a predictive model to explain the perception of quality of life in children and adolescents.","authors":"Teresa Grimaldi Capitello, Cinzia Correale, Giulia Amodeo, Michela Balsamo, Leonardo Carlucci, Caterina Fiorilli","doi":"10.1186/s12955-024-02328-w","DOIUrl":"10.1186/s12955-024-02328-w","url":null,"abstract":"<p><strong>Background: </strong>The number of people living with congenital heart disease (CHD) in 2017 was estimated to be 12 million, which was 19% higher than that in 1990. However, their death rate declined by 35%, emphasizing the importance of monitoring their quality of life due to its impact on several patient outcomes. The main objective of this study is to analyze how parents' psychosocial factors contribute to children's and adolescents' perceptions of their QoL, focusing on their medical condition. More specifically, we explore how parental psychological dimensions, such as anxiety and depression, are related to patients' health-related quality of life (HRQoL).</p><p><strong>Methods: </strong>We recruited 447 children aged 5 to 18 years with a CHD diagnosis and their parents (319 mothers and 229 fathers) from January to December 2018. Patients were referred to the Cardiology Department of \"Bambino Gesù\" Children's Hospital and participated in multidisciplinary standardized follow-up. Children and adolescents were submitted to a comprehensive evaluation by different physicians, including pediatric cardiologists, surgeons, and psychologists, at preset time frames. A series of standardized questionnaires were administered during psychological assessment.</p><p><strong>Results: </strong>The main findings show a negative correlation between mothers' anxiety and three patients' HRQoL subscales (Treatment II, Treatment anxiety, and Communication). Similarly, mothers' depression correlates negatively with other patients' HRQoL subscales (heart problems, symptoms, perceived physical appearance, cognitive problems, and communication). Fathers' anxiety and depression show negative correlations with only the subscale of Treatment II. More generally, the perceived quality of life of children and adolescents with CHD is influenced by their medical conditions as well as the parents' psychological dimensions.</p><p><strong>Conclusions: </strong>Our findings suggest that the caregivers of pediatric patients with CHD are more exposed to psychological problems of anxiety and depression, which affect the perceived quality of life of their children. Longitudinal research with a healthy control group is recommended to further consolidate this evidence.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"1"},"PeriodicalIF":3.2,"publicationDate":"2025-01-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11699644/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142927236","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":"Use of advanced topic modeling to generate domains for a preference-based index in osteoarthritis.","authors":"Ayse Kuspinar, Eunjung Na, Stanley Hum, Allyson Jones, Nancy Mayo","doi":"10.1186/s12955-024-02331-1","DOIUrl":"10.1186/s12955-024-02331-1","url":null,"abstract":"<p><strong>Background: </strong>Health-related quality of life (HRQL) is an important endpoint when evaluating the effectiveness of interventions in people living with hip and knee osteoarthritis (OA). The aim of this study was to generate domains for a new OA-specific preference-based index of HRQL in people living with hip or knee OA.</p><p><strong>Methods: </strong>The proposed HRQL index was based on a formative measurement model. The study included people aged 50 years and older, who reported being diagnosed with hip or knee OA. Participants reported the most important areas of their lives affected by OA. BERTopic method was used for topic modeling as part of Natural Language Processing. Hierarchical topic modeling was applied to merge similar topics together.</p><p><strong>Results: </strong>A total of 102 people participated from across Canada. The participants had a mean age of 64.3 ± 7.6 years, and they reported having either knee (48.0%) or hip (16.7%) OA, or both (35.3%). Six major topics that affect the quality of life of people with OA emerged from the BERTopic analysis. Pain, going up and down stairs, walking, standing at home or work, sleep, and playing with grandchildren were the major concerns reported by people living with OA.</p><p><strong>Conclusion: </strong>This study used natural language processing to generate domains for a new OA-specific HRQL index that is based on the views of people living with hip or knee OA. Six domains important to people living with OA formed the construct of HRQL. The next steps will be to create items based on the topics generated from this analysis and elicit people's preferences for the different items.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"22 1","pages":"113"},"PeriodicalIF":3.2,"publicationDate":"2024-12-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11686952/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142906831","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":"Clinical usefulness of patient-reported-outcome-measurement information system in Pediatric Crohn's Disease: a cross-sectional study.","authors":"Sara Azevedo, Maria Miguel Oliveira, Paulo Nogueira, Ana Isabel Lopes","doi":"10.1186/s12955-024-02330-2","DOIUrl":"10.1186/s12955-024-02330-2","url":null,"abstract":"<p><strong>Objectives: </strong>This study evaluated the clinical utility of the Patient-Reported Outcomes Measurement Information System (PROMIS^®) by comparing it with objective clinical data and validated health-related quality of life (HRQOL) measures in pediatric Crohn's disease (CD) patients.</p><p><strong>Study design: </strong>Cross-sectional study. Pediatric CD patients (aged 8-17 years) were enrolled prospectively over eight months from an outpatient pediatric gastroenterology center. We assessed the associations between PROMIS^® Pediatric short-form measures, demographic and disease-related data, global clinical assessments, and HRQOL measures. A subanalysis according to the PCDAI (remission versus active disease) was also conducted.</p><p><strong>Results: </strong>Thirty-one patients (mean age: 15.3; 58% female) with a mean disease duration of 2.7 years were included; 80.6% were in remission or had mild disease. The PROMIS^® score was significantly correlated with several factors: age was negatively correlated with the PROMIS^® Global Health Scale (r=-0.399; p = 0.026) and Life Satisfaction (r=-0.359; p = 0.047); sex was associated with the PROMIS^® Cognitive Function Scale (t = 2.20; p = 0.038), favoring males; and school level was inversely related to the PROMIS^® Peer Relationships (F = 3.90; p = 0.003). Clinical assessments also revealed significant correlations between hemoglobin and PROMIS^® Global Health (r = 0.356; p = 0.049) and pain interference (r=-0.360; p = 0.046) and between ferritin and PROMIS^® Meaning and Purpose (r = 0.435; p = 0.016) and cognitive function (r = 0.450; p = 0.011). Disease activity assessments correlated significantly with multiple PROMIS^® measures, with better scores in patients in remission. Treatment changes, particularly corticosteroid treatment, negatively impacted the PROMIS^® Anxiety and Life Satisfaction scores. IMPACT-III scores correlated positively with PROMIS^® Global Health, Meaning and Purpose, Life Satisfaction, and peer relationships scores and negatively with Depression, Anxiety, Pain interference, and Fatigue scores. Group analysis indicated better PROMIS^® scores and HRQOL scores in remission than in active disease remission.</p><p><strong>Conclusion: </strong>Consistent with recent evidence, PROMIS^® scores reliably reflect disease activity and HRQOL. The meaningful associations with clinical assessment and treatment efficacy reinforce the clinical relevance and utility of PROs in the patient-centered management of pediatric IBD and highlight the importance of self-reports as a gold standard tool for assessing health status.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"22 1","pages":"112"},"PeriodicalIF":3.2,"publicationDate":"2024-12-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11686960/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142906766","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":"Defining the relationship between clinician-rated ECOG performance status and patient-reported health-related quality of life scores in men with metastatic hormone-naïve prostate cancer.","authors":"Ikenna I Nnabugwu, Eric N Obikeze, Chinwe A Nnabugwu, Solomon K Anyimba, Okwudili C Amu, Okezie M Mbadiwe, Kevin S N Echetabu, Ijeoma L Okoronkwo","doi":"10.1186/s12955-024-02318-y","DOIUrl":"10.1186/s12955-024-02318-y","url":null,"abstract":"<p><strong>Background: </strong>Performance status and health-related quality of life (HRQoL) are important parameters in the management of metastatic prostate cancer. The clinician-rated Eastern Cooperative Oncology Group performance status (ECOG-PS) may not relate with the patient-reported HRQoL because the later puts into consideration some aspects of health that are not captured by the former. The aim of this study is to define the relationship between clinician-rated ECOG-PS and the patient-reported HRQoL in men with metastatic hormone-naïve prostate cancer (mPCa).</p><p><strong>Methods: </strong>An analytical cross-sectional study recruiting patients presenting with mPCa in Enugu, southeast Nigeria. Two clinicians agreed on an ECOG-PS score for each study participant who in turn completed the Functional Assessment in Cancer Therapy - Prostate (FACT-P) and the EuroQol EQ-5D-5 L questionnaires with interviewer-assistance where necessary. Other medical information was retrieved from the records. ANOVA and chi-square tests were used to compare available data across ECOG-PS ratings and ordinal logistic regression was used to determine the FACT-P questionnaire items that related significantly with the ECOG-PS scores.</p><p><strong>Results: </strong>Of the 224 participants (mean age: 70.62 ± 7.34), about 60.7% had ≥ 12years of formal education and 84.9% had ISUP grade ≥ 3 cancer. In all, 22.8%, 55.8%, 21.0% and 0.4% were ECOG-PS 1, ECOG-PS 2, ECOG-PS 3 and ECOG-PS 4 respectively. The mean FACT-P score, health utility index (HUI) and visual analogue scale (VAS) scores were 80.18 ± 17.56, 0.524 ± 0.324 and 60.43 ± 9.91% respectively. The FACT-P score (p = 0.002), HUI (p < 0.001) and VAS score (p < 0.001) varied significantly across the ECOG-PS ratings. Within the FACT-P, only questionnaire items GP3 (p = 0.024) and GP7 (p < 0.001) of the PWB domain, and items GF5 (p = 0.009) and GF6 (p = 0.003) of the FWB domain related strongly with the ECOG-PS categories.</p><p><strong>Conclusion: </strong>There are indications that HRQoL questionnaire items that have to do with impairment in physical and role functioning relate strongly with ECOG-PS categories.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"22 1","pages":"111"},"PeriodicalIF":3.2,"publicationDate":"2024-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11669234/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142885663","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":"Clinical importance of patient-reported outcome measures in severe asthma: results from U-BIOPRED.","authors":"Roy Meys, Frits M E Franssen, Alex J Van 't Hul, Per S Bakke, Massimo Caruso, Barbro Dahlén, Stephen J Fowler, Thomas Geiser, Peter H Howarth, Ildikó Horváth, Norbert Krug, Annelie F Behndig, Florian Singer, Jacek Musial, Dominick E Shaw, Paolo Montuschi, Anke H Maitland-van der Zee, Peter J Sterk, Graham Roberts, Nazanin Z Kermani, Raffaele A Incalzi, Renaud Louis, Lars I Andersson, Scott S Wagers, Sven-Erik Dahlén, Kian Fan Chung, Ian M Adcock, Martijn A Spruit","doi":"10.1186/s12955-024-02321-3","DOIUrl":"10.1186/s12955-024-02321-3","url":null,"abstract":"<p><strong>Rationale: </strong>Knowledge about the clinical importance of patient-reported outcome measures (PROMs) in severe asthma is limited.</p><p><strong>Objectives: </strong>To assess whether and to what extent asthma exacerbations affect changes in PROMS over time and asthma-specific PROMs can predict exacerbations in adult patients with severe asthma in usual care.</p><p><strong>Methods: </strong>Data of 421 patients with severe asthma (62% female; mean age 51.9 ± 13.4 years; mean FEV₁ 67.5 ± 21.3%pred) from the U-BIOPRED cohort were analyzed. The included PROMs were: Asthma Control Questionnaire (ACQ5); Asthma Quality of Life Questionnaire (AQLQ); Hospital Anxiety and Depression scale (HADS); Epworth Sleepiness Scale (ESS); Medication Adherence Report Scale (MARS); Sino-Nasal Outcomes Test (SNOT20). Participants were assessed at baseline and after 12-18 months of usual care.</p><p><strong>Results: </strong>PROMs showed very weak to weak correlations with clinical characteristics such as age, body mass index, FEV₁, FeNO and eosinophilic cell count. Patients presenting no exacerbations during follow-up showed a statistically significant improvement in all PROMs (except for MARS), whereas individuals experiencing > 2 exacerbations showed a deterioration. Baseline ACQ5 was a predictor of exacerbations with an AUC of 0.590 (95%CI 0.514-0.666).</p><p><strong>Conclusions: </strong>The association of PROMs with clinical measures was poor in severe asthmatics. Moreover, PROMs were prone to changes in usual care, with exacerbations playing a key role. PROMs need to be systematically evaluated in severe asthma to improve clinical care based on specific patient's needs.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"22 1","pages":"109"},"PeriodicalIF":3.2,"publicationDate":"2024-12-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11662558/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142871865","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":"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}