Moons Philip, Kovacs Adrienne H, Goossens Eva, Luyckx Koen, Ladak Laila, Leye Mohamed, Van De Bruaene Alexander, Leong Ming Chern, Kaneva Anna, Manso Paulo Henrique, Araujo John Jairo, Sasikumar Navaneetha, Gabriel Harald, Yadeta Dejuma, Wang Jou-Kou, Enomoto Junko, Areias Maria Emilia, Kosmidis Diamantis, Coats Louise, Valente Anne Marie, Moon Ju Ryoung, Ladouceur Magalie, Thomet Corina, Jackson Jamie L, Sandberg Camilla, Callus Edward, Kim Yuli Y, Lykkeberg Birgitte, Alday Luis, Bredy Charlène, Saidi Arwa, Baraona Reyes Fernando, Menahem Samuel, de Hosson Michèle, Hlebowicz Joanna, Christersson Christina, Zaidi Ali N, Johansson Bengt, Andresen Brith, Ambassa Jean-Claude, Mattsson Eva, Constantine Andrew, Amedro Pascal, van Melle Joost P, Kutty Shelby, Ortiz Lucia, Demir Fatma, Khairy Paul, Windram Jonathan, Bouchardy Judith, Caruana Maryanne, Jameson Susan M, Mahadevan Vaikom S, McGrath Lidija B, Mwita Julius Chacha, Van Bulck Liesbet
University of Gothenburg, Gothenburg, Sweden
KU Leuven, Leuven, Belgium.
Heart. 2025 Aug 12;111(17):818-827. doi: 10.1136/heartjnl-2024-325296.
The global prevalence of congenital heart disease (CHD) is increasing. Research on patient-reported outcomes (PROs) predominantly originates from high-income countries, resulting in an incomplete understanding of the true global burden of CHD from the patient perspective. Therefore, we described perceived health, psychological distress and quality of life (QoL) in a large sample of adults with CHD from the globe and explored the relationship between PROs and the income level of the countries.
Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart Disease-International Study II (APPROACH-IS II) represents an international cross-sectional investigation of PROs in 8415 patients from 53 centres across 32 countries. Patients completed questionnaires to measure perceived health status (RAND-12 Health Survey; EuroQOL-5D Visual Analog Scale); depressive symptoms (Patient Health Questionnaire-8, PHQ-8); anxiety (Generalized Anxiety Disorder Scale-7) and QoL (Linear Analog Scale). Gross National Income per capita in US dollars was used for stratifying countries according to income levels.
Large intercountry disparities in PROs were observed. Switzerland demonstrated the highest mean scores for physical functioning, self-rated health and QoL, while Senegal had the lowest scores. Patients from Malta demonstrated the highest mean scores for mental health, and Senegal had the lowest scores. With regard to depressive symptoms and anxiety, Pakistan had the lowest mean scores, while Turkey had the highest scores. Patients from high-income nations reported significantly better physical functioning, mental functioning and QoL.
Large intercountry disparities in PROs were observed. APPROACH-IS II is a pioneering international endeavour that comprehensively evaluated PROs among adults with CHD, drawing participants from nations with different income levels.
NCT04902768.
先天性心脏病(CHD)的全球患病率正在上升。关于患者报告结局(PROs)的研究主要来自高收入国家,这使得我们无法从患者角度全面了解CHD的全球真实负担。因此,我们描述了来自全球的大量成年CHD患者的感知健康状况、心理困扰和生活质量(QoL),并探讨了PROs与各国收入水平之间的关系。
先天性心脏病成人患者报告结局模式评估国际研究II(APPROACH-IS II)是一项对来自32个国家53个中心的8415名患者进行的PROs国际横断面调查。患者完成问卷以测量感知健康状况(兰德12项健康调查;欧洲五维健康量表视觉模拟量表)、抑郁症状(患者健康问卷-8,PHQ-8)、焦虑(广泛性焦虑障碍量表-7)和生活质量(线性模拟量表)。以人均国民总收入(美元)为依据,根据收入水平对国家进行分层。
观察到各国在PROs方面存在巨大差异。瑞士在身体功能、自评健康和生活质量方面的平均得分最高,而塞内加尔得分最低。马耳他患者的心理健康平均得分最高,塞内加尔得分最低。在抑郁症状和焦虑方面,巴基斯坦的平均得分最低,而土耳其得分最高。来自高收入国家的患者在身体功能、心理功能和生活质量方面的报告明显更好。
观察到各国在PROs方面存在巨大差异。APPROACH-IS II是一项开创性的国际研究,全面评估了不同收入水平国家成年CHD患者的PROs。
NCT04902768。