Health and Quality of Life Outcomes最新文献

{"title":"Assessing the validity and reliability of the Indonesian version of Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health Scale v1.2.","authors":"Vitriana Biben, Farida Arisanti, Efi Fitriana, Erika Maklun, Vindy Margaretha Miguna, Nabilla Fikria Alviani","doi":"10.1186/s12955-025-02336-4","DOIUrl":"10.1186/s12955-025-02336-4","url":null,"abstract":"<p><strong>Background: </strong>The assessment of Health-Related Quality of Life (HRQoL) is essential in clinical outcomes, focusing on the subjective perception of individuals regarding the physical, mental, and social aspects of health status. However, conducting a large-scale HRQoL assessment poses various challenges that necessitate the development of a non-burdensome instrument. One promising solution is adapting Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health Scale v1.2 through translation, validation, and cross-cultural testing for non-English populations. Therefore, this study aimed to evaluate the validity and reliability of the Indonesian version of PROMIS Global Health Scale for comprehensive HRQoL assessment.</p><p><strong>Method: </strong>This cross sectional study involved a total of 343 participants, comprising patients, caregivers, and residents of Physical Medicine and Rehabilitation. PROMIS Global Health Scale v1.2 was subjected to translation and cultural adaptation using the Functional Assessment of Chronic Illness Therapy (FACIT) method. Content validity was tested by five experts using the Scale-Content Validity Index (S-CVI), and structural validity was evaluated through Confirmatory Factor Analysis (CFA). Internal consistency and test-retest reliability were examined using Cronbach's Alpha and intraclass correlation coefficient (ICC), respectively.</p><p><strong>Result: </strong>The Indonesian version of PROMIS Global Health Scale v1.2 showed strong validity and reliability. Content validity analysis produced a S-CVI/Universal Agreement of 0.90 with item analysis factor loading's of > 0.3. Structural validity results were χ2/df (1.53), RMSEA (0.04), RMR (0.03), and CFI (0.99). The reliability results showed that Cronbach's Alpha for Global Physical Health (GPH) and Global Mental Health (GMH) was 0.61 and 0.77, respectively. Test-retest reliability assessment performed using intraclass correlation coefficients generated values of 0.72 for GPH (95% CI, [0.65,0.78])and 0.70 (95% CI [0.63,0.76]) for GMH.</p><p><strong>Conclusion: </strong>The Indonesian version of PROMIS Global Health Scale v1.2 showed sufficient content validity, structural validity, internal consistency, and reliability, which supported the application of this tool for HRQoL assessment in clinical and research settings.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"9"},"PeriodicalIF":3.2,"publicationDate":"2025-01-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11783922/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143074737","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":"Relationship between social support, functional outcomes and health-related quality of life in working-aged adults at three months after ischemic stroke: results from the FRAILTY study.","authors":"Elena Gurková, Daniela Bartoníčková, Daniel Šaňák, Šárka Šaňáková, Jana Zapletalová, Lenka Štureková","doi":"10.1186/s12955-025-02337-3","DOIUrl":"10.1186/s12955-025-02337-3","url":null,"abstract":"<p><strong>Background: </strong>The relationship between social support and functional outcomes and health-related quality of life (HRQoL) after ischemic stroke (IS) remains unclear, especially in working-aged patients.</p><p><strong>Aim: </strong>To assess the relationship between perceived social support, functional outcomes, post-stroke psychosocial symptoms, and HRQoL in working-aged adults three months after IS.</p><p><strong>Methods: </strong>A prospective and correlational design was used. Patients of working age (18-65 years) admitted for first-ever IS were enrolled in the prospective FRAILTY (Factors Affecting the Quality of Life After Ischemic Stroke in Young Adults) study (NCT04839887). HRQoL (using the Stroke Impact Scale, Quality of Life in Neurological Disorders), social support (using the Multidimensional Scale of Perceived Social Support), functional outcomes (using a modified Rankin Scale-mRS), and post-stroke psychosocial symptoms were assessed three months after IS. Descriptive statistics, Wilcoxon signed-rank test, Spearman's correlations and multiple linear regression were used for analysis.</p><p><strong>Results: </strong>A total of 121 (54.5% males, mean age 51.7 ± 8.4 years) IS patients were analyzed. Of those, 87.7% had excellent clinical outcomes (mRS 0-1) after three months. Patients reported significant improvement in all domains of self-reported HRQoL except memory and communication after three months. The overall perceived social support was not associated with HRQoL domains. Post-stroke depression was negatively associated with all domains of HRQoL. Living arrangements (living alone) and post-stroke depression were negatively associated with perceived social support after IS.</p><p><strong>Conclusions: </strong>More insight into the relationship between variables of HRQoL in working-aged adults might increase their social participation, strengthen supportive relationships, and promote their recovery and rehabilitation process. Focusing on the management of emotional problems and supporting functional outcomes may be modifiable factors that may represent targets for strategies to improve the HRQoL. Further research is needed to clarify the relationship between pre-stroke perceived social support and its types and post-stroke psychosocial symptoms in the long term.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"8"},"PeriodicalIF":3.2,"publicationDate":"2025-01-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11773794/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143052294","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":"Estimating health state utilities for aromatic L-amino acid decarboxylase deficiency (AADCd) in the United States.","authors":"Berrin Monteleone, Katie Forster, Gin Nie Chua, Rongrong Zhang, Andrew Lloyd, Paul Castellano, Ioannis Tomazos","doi":"10.1186/s12955-025-02335-5","DOIUrl":"https://doi.org/10.1186/s12955-025-02335-5","url":null,"abstract":"<p><strong>Background: </strong>AADCd is a rare neurometabolic disorder presenting in infancy. Children with AADCd have motor dysfunction and development delays that result in the need for lifelong care; quality of life is greatly impacted. Current characterizations of health-related quality of life and associated health state utilities (HSUs) may be underestimated in AADCd. Accurate characterization of AADCd burden is important when evaluating the benefits of treatment, especially the improvements observed with the recently approved disease-modifying therapy eladocagene exuparvovec. Time-trade-off (TTO) vignette methods may be used to elicit HSUs in AADCd for assessing the value of new treatments. This study aimed to first update previously published health state vignettes, then estimate AADCd HSUs in the United States (US).</p><p><strong>Methods: </strong>Existing vignettes for five AADCd health states were updated based on the review of published literature and clinician/caregiver input. Health states included: \"bedridden/no motor function,\" \"head control,\" \"sitting unassisted,\" \"standing with support,\" \"walking with assistance.\" Online composite TTO interviews were conducted 1:1 with adults from the US general public. Participants ranked health states in order of preference using a visual analog scale, then were presented with health state vignettes to elicit utilities using TTO. Mean TTO scores were calculated for each health state, and regression models were used to estimate disutility associated with use of feeding tube.</p><p><strong>Results: </strong>Following revision of the vignettes, 120 participants completed the TTO task (mean age: 47 years; 50% female; 70% White); characteristics were not significantly different from US population norms in terms of age, sex, race or ethnicity. Six participants who appeared to misunderstand the exercise were excluded. Mean (SD) HSUs were: -0.258 (0.534) for bedridden state, -0.155 (0.569) for head control, 0.452 (0.523) for sitting unassisted, 0.775 (0.242) for standing with support, and 0.796 (0.235) for walking with assistance. The need for a feeding tube was associated with a disutility of 0.07.</p><p><strong>Conclusions: </strong>This study implemented TTO methods to estimate utilities for five health states which reflect the burden and impact of AADCd. The range in values from the most to least severe health state suggests that there is potential for effective treatments to substantially improve quality of life in these patients.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"7"},"PeriodicalIF":3.2,"publicationDate":"2025-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11756132/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143058949","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":"Voice-related quality of life after total laryngectomy: a scoping review of recent evidence.","authors":"Tatiana Pourliaka, Efcharis Panagopoulou, Vassiliki Siafaka","doi":"10.1186/s12955-025-02334-6","DOIUrl":"10.1186/s12955-025-02334-6","url":null,"abstract":"<p><strong>Background: </strong>Laryngeal cancer often leads to total laryngectomy (TL), which results in the loss of natural voice, necessitates voice rehabilitation and affects the individuals Quality of Life (QoL). Despite advancements in treatment, Voice-Related QoL (VRQoL) post TL remains a neglected area in the field of rehabilitation. This study seeks to fill this gap by evaluating though a scoping review the impacts of TL on patients' voice-related QoL.</p><p><strong>Methods: </strong>A scoping review was conducted to assess the impact of total laryngectomy (TL) on voice-related quality of life (VRQoL). The search was performed across various electronic databases-PubMed, Scopus, Embase, Cohrane Library, Google scholar and Web of Science- using a broad set of keywords to capture studies addressing total laryngectomy and voice-related quality of life (VRQoL). Articles were screened using predefined inclusion and exclusion criteria, focusing on studies that directly addressed TL and VRQoL outcomes.</p><p><strong>Results: </strong>A total of eleven papers were finally selected to respond to the research question. The review indicates that TL significantly impacts VRQoL. Common issues included difficulties with communication in noisy environments, social interactions, anxiety about being understood, and physical challenges related to voice production. These difficulties were reflected in lower scores on various assessment tools. Patients reported declines in socio-emotional functioning and faced challenges in physical activities requiring voice use.</p><p><strong>Conclusions: </strong>This scoping review highlights the profound impact of TL on patients' voice-related QoL. Despite advances in surgical techniques and rehabilitation methods, patients continue to experience significant challenges in communication and social integration, which are crucial components of overall well-being. The persistent lower scores across various QoL assessment tools underscore the necessity for enhanced supportive care and innovative rehabilitation strategies tailored to the specific needs of this population.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"6"},"PeriodicalIF":3.2,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11748315/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143004533","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 utility scores of six common cancers in China measured by SF-6Dv2.","authors":"Yuchun Tao, Yiyin Cao, Lijun Xu, Jiaxuan Shi, Lei Leng, Hongbin Yang, Tiemin Zhai, Weidong Huang","doi":"10.1186/s12955-025-02332-8","DOIUrl":"10.1186/s12955-025-02332-8","url":null,"abstract":"<p><strong>Purpose: </strong>Given the recent update of SF-6Dv2, detailed data on utility scores for cancer patients by cancer type remain scarce in China and other regions, which limits the precision of cost-utility analyses (CUA) in cancer interventions. The aim of the study was to systematically evaluate utility scores of six common cancers in China measured using SF-6Dv2, and identify the potential factors associated with utility scores.</p><p><strong>Methods: </strong>A hospital-based cross-sectional survey was conducted from August 2022 to December 2023. It recruited 896 cancer patients from three tertiary hospitals in China, including 270 with lung cancer, 96 with stomach cancer, 88 with liver cancer, 71 with oesophagus cancer, 142 with colorectum cancer, and 160 with breast cancer. The validated Simplified Chinese version of the SF-6Dv2 was used to calculate utilities based on the Chinese value set, and the utility values were described using the mean and standard deviation (SD). Participants' socio-demographic, behavioral and clinical characteristics were also obtained from the survey. Univariate and multivariate linear regression models were performed to explore the impact of these three categories of characteristics on utility scores derived from SF-6Dv2 for the total cancer patients and each cancer group.</p><p><strong>Results: </strong>The mean utility score was 0.66 (SD = 0.26) for the total cancer sample, 0.66 (SD = 0.25) for lung cancer, 0.75 (SD = 0.23) for stomach cancer, 0.69 (SD = 0.24) for liver cancer, 0.69 (SD = 0.24) for oesophagus cancer, 0.65 (SD = 0.31) for colorectum cancer, and 0.57 (SD = 0.24) for breast cancer. Multivariate linear regression analysis indicated that patients who were older, from larger families, under greater economic pressures, undergoing fewer health examinations, smoking, and in advanced cancer stages had lower utility scores in the total cancer sample (p<0.05), with variations observed across different cancer types.</p><p><strong>Conclusions: </strong>This study is one of the first to apply the SF-6Dv2 to a heterogeneous group of cancer patients, providing evidence for conducting CUA with SF-6Dv2 across six common cancers in China. In addition, the study provides a basis for improving interventions for different cancer types.</p>","PeriodicalId":12980,"journal":{"name":"Health and Quality of Life Outcomes","volume":"23 1","pages":"5"},"PeriodicalIF":3.2,"publicationDate":"2025-01-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11725192/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142970575","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":"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}