title: Survivors of childhood cancer lost to follow-up can be re-engaged into active long-term follow-up by a postal health questionnaire intervention.
abstract: Lifelong long-term follow-up (LTFU) is recommended for all survivors of childhood cancer. National guidelines recommend risk-stratified levels of follow-up by a multidisciplinary team, in an age-appropriate environment. Many survivors do not participate in long-term follow-up.
  
  
  OBJECTIVE
  To re-engage childhood cancer survivors lost to follow-up in late effects programmes by means of postal questionnaire.
  
  
  METHODS
  Retrospective cohort study of all children (<19 years) diagnosed with cancer in a single institution in the UK between 1971 and 2003. All lost to follow-up survivors (not seen in clinic >2 years) were sent a postal health and well-being questionnaire.
  
  
  RESULTS
  831 patients were diagnosed with childhood cancer between 1971 and 2003, with 575 long-term survivors (overall survival rate 69%). Information was available on 550 survivors (males 290 (53%), median age (range) at review 18.8 (5.4-44.2) years and at diagnosis 5.0 (0.0-18.8) years, and disease free survival (range) was 10.8 (1.0-37.4) years. Of the 550 survivors, 256 (46%) were lost to follow-up. 99 (39%) of lost to follow-up survivors returned completed postal questionnaires (58% female). 45% of responders reported at least one late effect, 36% mild-moderate, and 8% severe-life threatening. 19% reported two or more late effects. 74% of all childhood cancer survivors are now in active follow-up.
  
  
  CONCLUSIONS
  Almost half (46%) of all long-term survivors of childhood cancer are lost to follow-up, Postal follow-up is an effective means of re-engaging more than one third of survivors of childhood cancer in active long-term follow-up, half of whom had at least one late effect.
authors: Department of Oncology, Royal Hospital for Sick Children, Edinburgh, UK. angela.edgar@luht.scot.nhs.uk
authors: A B
authors: AB
authors: Edgar
authors: S
authors: S
authors: Borthwick
authors: K
authors: K
authors: Duffin
authors: P
authors: P
authors: Marciniak-Stepak
authors: W H B
authors: WH
authors: Wallace
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D018572:Disease-Free Survival; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D059012:Lost to Follow-Up; D008297:Male; D011177:Postal Service; D011795:Surveys and Questionnaires; D017741:Survivors