Purpose: To assess the course of life of young adults who grew up with a chronic or life-threatening disease, and to compare their course of life with that of peers from the general population. Optimal transition from pediatric to adult health care requires knowledge of the psychosocial history of patients grown up with a pediatric disease.
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, 76 patients with end-stage renal disease. They completed the Course of Life Questionnaire, which retrospectively assesses the achievement of developmental milestones (autonomy, psychosexual and social development), and risk behavior (antisocial 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 esophageal atresia was not delayed compared with that of their peers, whereas 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.