Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors
Journal
International Journal of Cardiology
Journal Volume
251
Pages
34-41
Date Issued
2018
Author(s)
Moons P.
Kovacs A.H.
Luyckx K.
Thomet C.
Budts W.
Enomoto J.
Sluman M.A.
Jackson J.L.
Khairy P.
Cook S.C.
Subramanyan R.
Alday L.
Eriksen K.
Dellborg M.
Berghammer M.
Johansson B.
Mackie A.S.
Menahem S.
Caruana M.
Veldtman G.
Soufi A.
Fernandes S.M.
White K.
Callus E.
Kutty S.
Van Bulck L.
Apers S.
on behalf of the, APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD)
Abstract
Aims Geographical differences in patient-reported outcomes (PROs) of adults with congenital heart disease (ConHD) have been observed, but are poorly understood. We aimed to: (1) investigate inter-country variation in PROs in adults with ConHD; (2) identify patient-related predictors of PROs; and (3) explore standard of living and healthcare system characteristics as predictors of PROs. Methods and results Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease – International Study (APPROACH-IS) was a cross-sectional, observational study, in which 4028 patients from 15 countries in 5 continents were enrolled. Self-report questionnaires were administered: patient-reported health (12-item Short Form Health Survey; EuroQOL-5D Visual Analog Scale); psychological functioning (Hospital Anxiety and Depression Scale); health behaviors (Health Behavior Scale–Congenital Heart Disease) and quality of life (Linear Analog Scale for quality of life; Satisfaction With Life Scale). A composite PRO score was calculated. Standard of living was expressed as Gross Domestic Product per capita and Human Development Index. Healthcare systems were operationalized as the total health expenditure per capita and the overall health system performance. Substantial inter-country variation in PROs was observed, with Switzerland having the highest composite PRO score (81.0) and India the lowest (71.3). Functional class, age, and unemployment status were patient-related factors that independently and consistently predicted PROs. Standard of living and healthcare system characteristics predicted PROs above and beyond patient characteristics. Conclusions This international collaboration allowed us to determine that PROs in ConHD vary as a function of patient-related factors as well as the countries in which patients live. ? 2017 Elsevier B.V.
Subjects
Cross-cultural comparison; Healthcare system; Heart defects, congenital; Multilevel analysis; Patient-reported outcomes; Quality of life
SDGs
Other Subjects
adult; age; Argentina; Article; Australia; Belgium; Canada; congenital heart disease; cross-sectional study; female; France; functional status; gross national product; Health Behavior Scale; health care cost; health care system; health service; Hospital Anxiety and Depression Scale; human; human development; India; Italy; Japan; Linear Analog Scale for quality of life; major clinical study; male; Malta; Netherlands; Norway; observational study; patient-reported outcome; priority journal; questionnaire; Satisfaction with Life Scale; Short Form 12; socioeconomics; standard of living; Sweden; Switzerland; Taiwan; unemployment; United States; visual analog scale; clinical trial; congenital heart malformation; health care delivery; international cooperation; multicenter study; procedures; self report; standards; Adult; Cross-Sectional Studies; Delivery of Health Care; Female; Heart Defects, Congenital; Humans; Internationality; Male; Patient Reported Outcome Measures; Self Report; Socioeconomic Factors
Type
journal article