Opgroeien met een chronische aandoening: Levensloop en gevolgen in de jongvolwassenheid

Purpose: Optimal transition from paediatric to adult health care requires knowledge of the psychosocial history of patients grown up with a paediatric disease. The aim of this study was to compare the course of life of the young adults grown up with a chronic or life-threatening disease with that of peers from the general population. Patients and methods: A total of 508 young adults from the general Dutch population and 650 patients, aged 18-30 years, participated: 348 survivors of childhood cancer, 93 patients with anorectal malformations, 72 patients with Hirschsprung's disease, 61 patients with oesophageal atresia, and 76 patients with end-stage renal disease. They completed the Course of Life Questionnaire, which retrospectively assesses the achievement of developmental milestones (autonomy, psycho-sexual and social development), and risk behavior (anti-social behavior, substance use and gambling). Results: The young adults grown up with a chronic or life-threatening disease proved to have achieved significantly fewer milestones, or at older age than their peers, in all course-of-life-domains. The course of life of young adults grown up with oesophageal atresia was not delayed compared to that of their peers, while that of survivors of childhood cancer and patients with end-stage renal disease was delayed most. Conclusions: Health care providers should help to minimize the harm for children who grow up with a chronic or life-threatening disease by encouraging parents to stimulate social contacts and autonomy. Attention should especially be directed at children and adolescents growing up with childhood cancer or with end stage renal disease.