Impact of heart transplantation in infancy and adolescence on quality of life and compliance

INTRODUCTION: Young patients who undergo heart transplantation in their early childhood or adolescence are confronted with typical developmental problems, which affect their specific adjustment to heart transplantation. This study aims at evaluating patients’ health related quality of life and at determining the degree and sources of non-compliant behavior with its somatic and psychosocial consequences. METHODS: The study sample consists of 38 patients, who received heart transplantation between the age of 1 and 18 and are now between 16 and 34 years old. All participants received self-rating instruments: The Short-Form Health Survey (SF-36), Giessen Subjective Complaints List (GBB), Medication Experience Scale for Immunosuppressants (MESI), and Health Questionnaire for Children and Young People (KIDSCREEN-27). Patient´s scores were compared to the scores of the specific norm sample. Further assessment was done by semi-structured interviews directed at psychosocial outcome, compliance, relationship to family and peer-group and integration into the work environment. RESULTS: In comparison to healthy controls the patients showed a significantly reduced quality of life (SF-36) in all psychological and nearly all somatic domains. Patients emphasized a very close and satisfying relationship to their parents and pronounced overall social support. Almost 50% of the patients reported some reduced medical compliance and 20% are to be seen as a high risk group for noncompliance, simultaneously characterized by poor physical and mental status. CONCLUSION: Young adult transplant patients are to be carefully evaluated for psychosocial risks to avoid noncompliance and reduced quality of life in long-term follow up.