Loss to specialist follow-up in congenital heart disease; out of sight, out of mind

Abstract

Objective: To evaluate the scale and clinical importance of loss to follow-up of past patients with serious congenital heart disease, using a common malformation as an example. To better understand the antecedents of loss to specialist follow-up and patients' attitudes to returning.

Design: Cohort study using NHS number functionality. Content and thematic analysis of telephone interviews of subset contacted after loss to follow-up. PATIENTS, INTERVENTION AND SETTING: Longitudinal follow-up of complete consecutive list of all 1085 UK patients with repair of tetralogy of Fallot from single institution 1964-2009.

Main outcome measures: Survival, freedom from late pulmonary valve replacement, loss to specialist follow-up, shortfall in late surgical revisions related to loss to follow-up. Patients' narrative about loss to follow-up.

Results: 216 (24%) of patients known to be currently alive appear not to be registered with specialist clinics; some are seen in general cardiology clinics. Their median age is 32 years and median duration of loss to follow-up is 22 years; most had been lost before Adult Congenital services had been consolidated in their present form. 48% of the late deaths to date have occurred in patients not under specialist follow-up. None of those lost to specialist follow-up has had secondary pulmonary valve replacement while 188 patients under specialist care have. Patients lost to specialist follow-up who were contacted by telephone had no knowledge of its availability.

Conclusions: Loss to specialist follow-up, typically originating many years ago, impacts patient management.

Figure 1

Flow diagram showing outcomes and background of patients contacted by telephone.

Figure 2

Cumulative proportion by age of patients having pulmonary valve replacement (PVR). The two curves represent the results obtained if (A) patients are only included while under active follow-up and (B) if all patients contribute in their lifetime whether or not they are under specialist follow-up. ‘Lost’ patients will not have had a PVR. Patients are censored if they died or moved abroad. In curve A, ‘lost’ patients are censored on the date last seen alive by a specialist hospital.