title: 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.
  
  
  METHODS
  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.
  
  
  METHODS
  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.
authors.affiliation: Department of Cardiology, Great Ormond Street Hospital, London, UK. jo.wray@gosh.nhs.uk
authors.forename: Jo
authors.initials: J
authors.lastname: Wray
authors.forename: Alessandra
authors.initials: A
authors.lastname: Frigiola
authors.forename: Catherine
authors.initials: C
authors.lastname: Bull
mesh_terms: D000293:Adolescent; D000328:Adult; D001291:Attitude of Health Personnel; D006348:Cardiac Surgical Procedures / Q000009:adverse effects / Q000401:mortality; D002648:Child; D002675:Child, Preschool; D003266:Continuity of Patient Care; D005260:Female; D005500:Follow-Up Studies; D015438:Health Behavior; D007722:Health Knowledge, Attitudes, Practice; D019918:Heart Valve Prosthesis Implantation; D006801:Humans; D007223:Infant; D008131:London; D059012:Lost to Follow-Up; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care; D011183:Postoperative Complications / Q000209:etiology / Q000601:surgery; D011664:Pulmonary Valve / Q000601:surgery; D012017:Referral and Consultation; D012086:Reoperation; D013222:State Medicine; D017741:Survivors / Q000523:psychology; D013771:Tetralogy of Fallot / Q000175:diagnosis / Q000401:mortality / Q000628:therapy*; D013997:Time Factors; D060305:Transition to Adult Care; D016896:Treatment Outcome; D055815:Young Adult