title: Health-related quality of life and adverse late effects in adult (very) long-term childhood cancer survivors.
abstract: OBJECTIVE
  
  
  
  METHODS
  The RAND-36 was used to assess HRQoL in all adult (> or =18 years) survivors who had attended the long-term follow-up clinic since 1995. The survivors were divided into two groups based on the length of follow-up: Group LF (long term follow-up, follow-up > or =20 years, n=129) and Group VLF (very long-term follow-up, follow-up >20 years, n=184). Data on diagnosis, treatment and complications were obtained from medical records. Late effects were graded using the CTCAEv3.
  
  
  RESULTS
  The RAND-36 was completed by 313 (86.2%) out of 363 eligible patients. Except for higher scores on the subscale Bodily pain, LF patients did not differ significantly on the RAND-36 subscales from the population sample; VLF patients had significant lower scores on the subscales Physical functioning (P=0.003), Social functioning, Vitality and General health perception (P<0.001). Significantly more VLF patients (P<0.001) had severe (grade 3 and 4) late effects (47.8%) compared to LF patients (27.9%). Female gender and especially psycho-social late effects were inversely related to HRQoL.
  
  
  CONCLUSIONS
  Childhood cancer survivors who were diagnosed more than 20 years ago have lower scores on the RAND 36, and have significantly more severe late effects than those diagnosed more recently. Patients with longer follow-up are more likely to become lost to follow-up. Time has come to establish new models of care for adult childhood cancer survivors, which are more flexible and appropriate to the needs of adult childhood cancer survivors.
authors.affiliation: University Medical Center Groningen, Department of Paediatrics, Division of Paediatric Oncology, P.O. Box 30001, 9700 RB Groningen, The Netherlands. r.blaauwbroek@bkk.umcg.nl
authors.forename: R
authors.initials: R
authors.lastname: Blaauwbroek
authors.forename: A D
authors.initials: AD
authors.lastname: Stant
authors.forename: K H
authors.initials: KH
authors.lastname: Groenier
authors.forename: W A
authors.initials: WA
authors.lastname: Kamps
authors.forename: B
authors.initials: B
authors.lastname: Meyboom
authors.forename: A
authors.initials: A
authors.lastname: Postma
mesh_terms: D000328:Adult; D002648:Child; D005500:Follow-Up Studies; D006305:Health Status Indicators; D006801:Humans; D008875:Middle Aged; D009369:Neoplasms / Q000150:complications / Q000523:psychology* / Q000628:therapy; D009426:Netherlands; D011788:Quality of Life; D012044:Regression Analysis; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*