Psychosocial Challenges of Pediatric Heart and Lung Transplantation: A Systematic Review

Background and Purpose: The role of social work in the area of organ transplantation remains underrepresented both within the social work profession and research literature. Social workers on multidisciplinary transplant teams play a critical role in the transplant process when providing services to organ donors, transplant patients, and their families. Research on the psychosocial adjustment to transplantation as well as health and medical outcomes is critical to the advancement of pretransplant assessments and posttransplant social work services. The present study is a systematic review of the empirical research on the psychosocial challenges experienced by pediatric heart and lung transplant patients and their families.

Methods: A search for empirical articles was conducted through MEDLINE, PsycInfo, Psychology, Social Services Abstracts, and Applied Social Sciences Index and Abstracts. The primary search terms were “pediatric, child*, or adolesc*”, “transplant*”, “heart, lung, or cardiothoracic”, and “psychosocial, psych*, or social”. Only studies including measures of health, medical, and psychosocial factors were retained. An initial search of peer-reviewed articles and a review of secondary sources produced 13 empirical studies for review.

Results: The reviewed studies demonstrate a wide-range of results and study quality. The number of participants in the studies were small and varied with an average sample size of 39.5 (SD=19.9). While small sample sizes in the studies likely limited statistical power, the wide age range of participants (from several months to 18 years old in several studies) included transplant recipients of different developmental levels, possibly further limiting internal validity.

Methods of measurement included retrospective reviews of medical records, standardized measures, and structured and semi-structured interviews. Studies included measures of developmental and cognitive abilities, behavioral problems, depression, social support, social functioning, family functioning, and health and medical outcomes related to transplantation. A majority of the studies included multiple points of observation most often during the pretransplant assessment and a later follow-up assessment.

Significant amounts of psychosocial difficulties were reported by pediatric transplant patients and their families. Patients having significant developmental and cognitive delays were reported in five studies while significant behavioral problems contributing to poorer health outcomes were found in four studies. Social and family functioning of the patients were found to correlate significantly with low medical adherence and subsequently poor health outcomes. While significant amounts of depression were reported by patients in some studies, those with extended follow-up measurement beyond the first three years posttransplant noted more normal patient depression scores after several years. This finding suggests the critical period for intervention with pediatric heart and lung transplant patients may be within the first three years following transplantation.

Conclusions and Implications: Given the results of this systematic review, more research into the psychosocial difficulties experienced by pediatric transplant patients is needed especially done longitudinally and with larger samples. The psychosocial adjustment of both the patient and family during first three years after transplant appears to be a critical time for assessment and intervention, as suggested by this review. Further research will lead to the improvement of pretransplant psychosocial assessments and development of empirically-supported posttransplant interventions.