Objective: Our purpose was to review the literature with respect to issues of adherence to treatment among children with congenital and acquired cardiac disease.
Materials and methods: Databases used for this review included MEDLINE, Pub Med's Single Citation Manager, Cochrane Library, Cochrane Central Register of Controlled Trials, Scopus, and Google Scholar. We did not use any restrictions on date when locating peer-reviewed articles published worldwide through December of 2008.
Results: There exists a lack of published research regarding adherence to medical treatment for children with cardiac conditions. Of the few published studies, rates of adherence for children with congenital and acquired cardiac disease ranged from a high of 96% for an in-patient exercise programme, to a low of 33% among those who made all of their medical appointments. Risk factors for nonadherence included older age, one as opposed to two parents in the home, lack of emotional availability of parents, smoking, sedentary lifestyle, use of illicit drugs, presence of tattoos, and multiple body piercings. Clinical outcomes associated with non adherence in the population of children undergoing transplantation included mortality, acute episodes of rejection, lower levels of Cyclosporine A, and lower values for the International Normalised Ratio of prothrombin.
Conclusions: For children with congenital and acquired heart disease, the challenges of adherence to treatment can often be overwhelming. Recommendations designed to maximize the impact and scientific rigour of future studies include obtaining quantitative and qualitative measures of adherence, identifying primary and secondary endpoints, emphasizing factors of interest, planning studies with sufficient power to impact on the adherence to treatment, and developing epidemiologic foundations.