Original article
Young Adult Patients with a History of Pediatric Disease: Impact on Course of Life and Transition into Adulthood

https://doi.org/10.1016/j.jadohealth.2005.03.011Get rights and content

Abstract

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.

Section snippets

Procedures

The course of life was examined in several patient groups participating in studies at the academic children’s hospitals in The Netherlands: survivors of childhood cancer (SCC), patients with anorectal malformations (ARM), patients with Hirschsprung disease (HD), patients with esophageal atresia (EA), and patients with end-stage renal disease (ESRD). Norm data of the Course of Life Questionnaire were available for young adults aged 18–30 years [19]. Therefore, patients either less than 18 years

Patients

The datasets provided information about the course of life of 1158 young adults aged 18–30 years: 348 SCC, 93 patients with ARM, 72 patients with HD, 61 patients with EA, 76 patients with ESRD (62 transplanted and 14 on chronic dialysis at the time of investigation), and 508 young adults from the general Dutch population (reference group). Four patients suffering from both HD and EA were included in both patient samples. The patients with ARM, HD, or ESRD represent a national sample.

Mean ages

Discussion

To achieve optimal transition from pediatric to adult health care, physicians should have knowledge of the medical as well as the psychosocial history of patients grown up with a chronic disease. Therefore, the course of life of young adults grown up with diverse diseases (CC, ARM, HD, EA, ESRD) was investigated and compared with that of a reference group of young adults from the general Dutch population.

The young adults grown up with a chronic disease (as a whole) reported a delayed course of

Acknowledgments

The research reported in this article has been supported and financed by the Dutch Cancer Society, the Netherlands Digestive Diseases Foundation, and the Dutch Kidney Association. We thank Dr. D.C. Aronson, Prof. Dr. H.N. Caron, Dr. B.F. Last, and Prof. Dr. M.A.G. Sprangers for their supervision and counseling on the several studies.

References (34)

  • J. Garber

    Classification of childhood psychopathologya developmental perspective

    Child Dev

    (1984)
  • M. Lewis et al.

    Handbook of Developmental Psychopathology

    (1990)
  • H. Calsbeek et al.

    Social position of adolescents with chronic digestive disorders

    Eur J Gastroenterol Hepatol

    (2002)
  • K. Vannatta et al.

    Social functioning of children surviving bone marrow transplantation

    J Pediatr Psychol

    (1998)
  • A.M. La Greca

    Social consequences of pediatric conditionsfertile area for future investigation and intervention

    J Pediatr Psychol

    (1990)
  • B.D. Miller et al.

    Childhood asthma in interaction with family, school, and peer systemsa developmental model for primary care

    J Asthma

    (1991)
  • V.L. Tyc et al.

    Predictors of intentions to use tobacco among adolescent survivors of cancer

    J Pediatr Psychol

    (2001)
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