Methods: A systematic search was conducted across six databases (Social Work Abstracts, CINAHL, Health Source, MEDLINE, PsycARTICLES, and PsycINFO), dissertation abstracts, Cochrane Collaboration, and Google Scholar. The keywords for the search were “child* or pediatr* or paediatr* or adolescen* or teen* or infan*”, and “adheren* or complia* or non-adhere* or non-complia* or self-management”, and “transplant*”. The search included studies published after 1980 which sampled more than 10 pediatric solid organ transplant recipients and measured adherence quantitatively. The two authors reviewed each study for inclusion. Covidence web-based review software was used to facilitate the review. From 1,174 studies identified, 673 studies were excluded during title and abstract screening. Full-text review excluded an additional 453 studies to arrive at a final sample of 48 publications representing 43 unique studies.
Results: The 43 studies included a total of 8,257 pediatric transplant recipients (median sample size of 52) with 25 samples including kidney recipients, 13 with liver recipients, 10 with heart recipients, 2 with lung recipients, and 2 with heart-lung recipients. Ages of participants ranged from less than a month old through 24.9 years, as often pediatric transplant teams monitor patients transplanted as children past the age of 18. A majority of studies used prospective data collection (n=28, 65.1%) as opposed to retrospective medical records reviews.
Rates of medication adherence was estimated across studies and averaged 65.5% (SD=20.8). Methods of assessing medication adherence varied and included blood levels of medication (n=17, 39.5%), standard deviation scores of blood levels (n=11, 25.6%), patient or parent self-report (n=14, 32.6%), and physician report (n=10, 23.2%). Multiple measures of adherence were identified in 22 studies (51.2%). Findings regarding psychosocial predictors were inconsistent, however non-adherence was found to be associated with adolescence, gender (female), racial/ethnic minority status, and presence of mental health issues. Familial predictors of adherence problems included single-parent households, lower socio-economic status, lower family cohesion, family conflict, and poor family communication. Several studies reported an association between non-adherence and social pressures (e.g., peer social interaction, wanting to feel normal) among adolescent transplant recipients. Significant problems with study quality stemmed from sampling error, variation in adherence measurement, and lack of statistical power in the analyses.
Conclusions: The review synthesized literature to determine psychosocial predictors of medication adherence among pediatric transplant recipients and their families. Significant methodological and substantive gaps remain in this body of knowledge, however the findings of the review offers foundational evidence for assessment and targeting of services performed by transplant social workers.