Marta Aguilar Rodríguez , Sofía Pérez-Alenda , Juan J. Carrasco , Juan Eduardo Megías-Vericat , Santiago Bonanad , Felipe Querol , Ana Chimeno-Hernández
{"title":"成年血友病患者生活质量的心理、情感和社会层面及其与身体和功能状况的关系。","authors":"Marta Aguilar Rodríguez , Sofía Pérez-Alenda , Juan J. Carrasco , Juan Eduardo Megías-Vericat , Santiago Bonanad , Felipe Querol , Ana Chimeno-Hernández","doi":"10.1016/j.thromres.2024.109181","DOIUrl":null,"url":null,"abstract":"<div><h3>Introduction</h3><div>A comprehensive treatment for patients with haemophilia (PwH) should focus on how the disease interferes with their mental, emotional and social environment to analyse if all the therapeutic efforts invested in their physical status have positive impact on a life worth living.</div></div><div><h3>Aim</h3><div>To analyse the correlation between the physical status of a cohort of adults with haemophilia and their mental, emotional and social states regarding their treatment modality; Also, to investigate which variables are most related to quality of life (QoL), joint health and emotional, mental and social states.</div></div><div><h3>Methods</h3><div>In this cross-sectional, 102 adults with haemophilia divided into a prophylactic group (G1, <em>n</em> = 77) and on-demand group (G2, <em>n</em> = 25) were included. Demographic and clinical characteristics, health joint (HJHS), presence of synovitis with ultrasound, self-perceived functionality (HAL) and QoL (A36-HaemoQoL), were analysed.</div></div><div><h3>Results</h3><div>In G1 all the variables that defined the physical status correlated (rho: 0.33 to 0.72) to the mental and social spheres. The emotional state correlated with the self-perceived ones. In G2 physical status did not correlate with the three states. According to the regression models, HAL was the variable that most influenced the QoL (together with the bleedings in the last year, R<sup>2</sup> = 0.61), emotional (R<sup>2</sup> = 0.16), mental (together with HJHS, R<sup>2</sup> = 0.41) and social states (R<sup>2</sup> = 0.39). In addition, the HJHS was influenced by synovitis, HAL, mental health, age and the bleeding history (R<sup>2</sup> = 0.83).</div></div><div><h3>Conclusion</h3><div>Emotional, mental and social states of PwH in prophylaxis are correlated to their physical status, being the self-perceived functionality the variable that most influenced in their QoL.</div></div>","PeriodicalId":23064,"journal":{"name":"Thrombosis research","volume":"244 ","pages":"Article 109181"},"PeriodicalIF":3.7000,"publicationDate":"2024-10-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Mental, emotional and social dimensions of quality of life and their relationship with physical and functional status in adults with haemophilia\",\"authors\":\"Marta Aguilar Rodríguez , Sofía Pérez-Alenda , Juan J. Carrasco , Juan Eduardo Megías-Vericat , Santiago Bonanad , Felipe Querol , Ana Chimeno-Hernández\",\"doi\":\"10.1016/j.thromres.2024.109181\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Introduction</h3><div>A comprehensive treatment for patients with haemophilia (PwH) should focus on how the disease interferes with their mental, emotional and social environment to analyse if all the therapeutic efforts invested in their physical status have positive impact on a life worth living.</div></div><div><h3>Aim</h3><div>To analyse the correlation between the physical status of a cohort of adults with haemophilia and their mental, emotional and social states regarding their treatment modality; Also, to investigate which variables are most related to quality of life (QoL), joint health and emotional, mental and social states.</div></div><div><h3>Methods</h3><div>In this cross-sectional, 102 adults with haemophilia divided into a prophylactic group (G1, <em>n</em> = 77) and on-demand group (G2, <em>n</em> = 25) were included. Demographic and clinical characteristics, health joint (HJHS), presence of synovitis with ultrasound, self-perceived functionality (HAL) and QoL (A36-HaemoQoL), were analysed.</div></div><div><h3>Results</h3><div>In G1 all the variables that defined the physical status correlated (rho: 0.33 to 0.72) to the mental and social spheres. The emotional state correlated with the self-perceived ones. In G2 physical status did not correlate with the three states. According to the regression models, HAL was the variable that most influenced the QoL (together with the bleedings in the last year, R<sup>2</sup> = 0.61), emotional (R<sup>2</sup> = 0.16), mental (together with HJHS, R<sup>2</sup> = 0.41) and social states (R<sup>2</sup> = 0.39). In addition, the HJHS was influenced by synovitis, HAL, mental health, age and the bleeding history (R<sup>2</sup> = 0.83).</div></div><div><h3>Conclusion</h3><div>Emotional, mental and social states of PwH in prophylaxis are correlated to their physical status, being the self-perceived functionality the variable that most influenced in their QoL.</div></div>\",\"PeriodicalId\":23064,\"journal\":{\"name\":\"Thrombosis research\",\"volume\":\"244 \",\"pages\":\"Article 109181\"},\"PeriodicalIF\":3.7000,\"publicationDate\":\"2024-10-12\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Thrombosis research\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S004938482400313X\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"HEMATOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Thrombosis research","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S004938482400313X","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"HEMATOLOGY","Score":null,"Total":0}
Mental, emotional and social dimensions of quality of life and their relationship with physical and functional status in adults with haemophilia
Introduction
A comprehensive treatment for patients with haemophilia (PwH) should focus on how the disease interferes with their mental, emotional and social environment to analyse if all the therapeutic efforts invested in their physical status have positive impact on a life worth living.
Aim
To analyse the correlation between the physical status of a cohort of adults with haemophilia and their mental, emotional and social states regarding their treatment modality; Also, to investigate which variables are most related to quality of life (QoL), joint health and emotional, mental and social states.
Methods
In this cross-sectional, 102 adults with haemophilia divided into a prophylactic group (G1, n = 77) and on-demand group (G2, n = 25) were included. Demographic and clinical characteristics, health joint (HJHS), presence of synovitis with ultrasound, self-perceived functionality (HAL) and QoL (A36-HaemoQoL), were analysed.
Results
In G1 all the variables that defined the physical status correlated (rho: 0.33 to 0.72) to the mental and social spheres. The emotional state correlated with the self-perceived ones. In G2 physical status did not correlate with the three states. According to the regression models, HAL was the variable that most influenced the QoL (together with the bleedings in the last year, R2 = 0.61), emotional (R2 = 0.16), mental (together with HJHS, R2 = 0.41) and social states (R2 = 0.39). In addition, the HJHS was influenced by synovitis, HAL, mental health, age and the bleeding history (R2 = 0.83).
Conclusion
Emotional, mental and social states of PwH in prophylaxis are correlated to their physical status, being the self-perceived functionality the variable that most influenced in their QoL.
期刊介绍:
Thrombosis Research is an international journal dedicated to the swift dissemination of new information on thrombosis, hemostasis, and vascular biology, aimed at advancing both science and clinical care. The journal publishes peer-reviewed original research, reviews, editorials, opinions, and critiques, covering both basic and clinical studies. Priority is given to research that promises novel approaches in the diagnosis, therapy, prognosis, and prevention of thrombotic and hemorrhagic diseases.