Can the inevitable be prevented? : an analysis of loss to follow-up among grown-ups with congenital heart disease in Malta

Aims: To investigate the prevalence of loss to follow-up, factors predisposing to loss to follow-up and the outcome of recall into specialist care among grown-ups with congenital heart disease (GUCH) of moderate or severe complexity prior to the introduction of formal transition in Malta. Methods: Medical documentation for all live patients with tetralogy of Fallot, aortic coarctation/interrupted aortic arch, partial and complete atrioventricular septal defect, Fontan-type circulation and transposition of the great arteries in our institutional database aged ≥16 years was analysed to determine follow-up status. Patients lost to follow-up were recalled through a postal appointment. Ordinal logistic regression was used to analyse the effect of gender, CHD complexity, consistency of paediatric cardiology follow-up during childhood, number of cardiac surgical/interventional procedures and use of long-term cardiac medications on loss to follow-up. Results: Forty-one of 187 patients (21.9%) (27 males; 34 with moderate disease) had been lost to follow-up. Limited paediatric cardiology input (OR, 5.08; 95% CI, 1.77-14.63) (p=0.003), £1 surgical/interventional procedures (OR, 3.34; 95% CI, 1.09-10.26) (p=0.035) and no long-term cardiac medications (OR 7.34; 95% CI, 1.74-31.02) (p=0.007) were associated with higher risk of loss to follow-up. A positive response to recall was obtained from 33/41 (80.5%) patients. Significant cardiac morbidity was found in 5/33 (15.2%) patients upon reassessment. Conclusions: Loss to specialist follow-up occurs even in health systems with little perceived barriers to medical care. Consistent specialist input during all stages and patient and family education through formal transition can help ensure a smoother transfer to GUCH care.peer-reviewe