Quality‐of‐life research in adult patients with congenital heart disease: current status and the way forward

Abstract

Over the past four decades, the number of papers on quality of life (QoL) in congenital heart disease (CHD) has grown exponentially. However, firm conclusions have been hard to draw, because conceptual issues occurred and methodological differences prevented direct comparisons of studies. In general, QoL in CHD patients is good and it can be even better than in healthy peers when measured as life satisfaction. When QoL is measured as physical functioning, patients with complex CHD do worse than patients with moderate or mild defects or healthy individuals. APPROACH-IS was a large-scale international project that confirmed international variations in QoL, with Australian patients reporting the best QoL. Poor QoL was predicted by older age, being a job seeker, unemployed or disabled, never having married and those with worse functional status. Perceived illness and religion and spirituality were also significant predictors for QoL. On the other hand, country-specific characteristics and healthcare system factors did not play a significant role in explaining variances in QoL of patients with CHD around the globe. Future studies should rely on a sound conceptual basis, use longitudinal research designs, be conducted in international, multi-centre settings and evaluate interventions that promote patients' QoL.

Neurodevelopmental Outcomes Among Children With Congenital Heart Disease: At-Risk Populations and Modifiable Risk Factors

“…1 Although several studies report positive outcomes for adolescents and adults living with CHD, there remains a subset of patients at risk for neurodevelopmental delays that may impact quality of life (QOL). [2][3][4] Patients, parents, and providers alike have demanded increased attention to long-term medical, psychosocial, developmental, and QOL outcomes in children with cCHD.…”

Quality of life of adult Fontan patients

“…The SF-36 questionnaire was used to evaluate SHS, and a linear analog scale score for assessment of PeQoL, i.e., personal and individual patient perception of their own QoL. 18,19 Patients were invited to participate via telephone or postal mail. The SF-36 was administered by telephone or included along with the invitation letter if sent by post.…”

“…14 The New York Heart Association (NYHA) classification, the social status, the psychological health or the SHS have been interchangeably used to evaluate HRQoL of patients with a previous Fontan surgery, [14][15][16] but these approaches may not provide a satisfactory assessment of HRQoL in this population. 17,18 An individual appraisal of perceived quality of life (PeQoL) by the patient may provide a more reliable and realistic evaluation of HRQoL than objective parameters. 19,20 In QoL research, the linear analog scale has robust psychometric properties and had been used in adult CHD surveys 21 to assess PeQoL.…”

“…The main objective of this study was to assess HRQoL in adults with Fontan circulation using both SF-36 SHS and linear analog scale PeQoL assessment, to compare the results to those of the general French population and to determine whether demographic or medical variables were related to SHS and PeQoL. 22,23…”

Highlights in this issue

“…Hanson reviewed the literature on the inheritance of cardiovascular disease, and Brida and Gatzoulis explored the past, present and future of adult congenital heart disease. Moons and Luychx provide an insight into research on the quality of life of adult patients with congenital heart disease and discuss the current situation and way forward.…”