Assessing barriers to adherence in routine clinical care for pediatric kidney transplant patients

Abstract

Patient-identified barriers to immunosuppressive medications are associated with poor adherence and negative clinical outcomes in transplant patients. Assessment of adherence barriers is not part of routine post-transplant care, and studies regarding implementing such a process in a reliable way are lacking. Using the Model for Improvement and PDSA cycles, we implemented a system to identify adherence barriers, including patient-centered design of a barriers assessment tool, identification of eligible patients, clear roles for clinic staff, and creating a culture of non-judgmental discussion around adherence. We performed time-series analysis of our process measure. Secondary analyses examined the endorsement and concordance of adherence barriers between patient-caregiver dyads. After three methods of testing, the most reliable delivery system was an EHR-integrated tablet that alerted staff of patient eligibility for assessment. Barriers were endorsed by 35% of caregivers (n=85) and 43% of patients (n=60). The most frequently patient-endorsed barriers were forgetting, poor taste, and side effects. Caregivers endorsed forgetting and side effects. Concordance between patient-caregiver dyads was fair (k=0.299). Standardized adherence barriers assessment is feasible in the clinical care of pediatric kidney transplant patients. Features necessary for success included automation, redundant systems with designated staff to identify and mitigate failures, aligned reporting structures, and reliable measurement approaches. Future studies will examine whether barriers predict clinical outcomes (eg, organ rejection, graft loss).

Does a multimethod approach improve identification of medication nonadherence in adolescents with chronic kidney disease?

“…Indeed, once nonadherence is correctly identified, the next step is to develop interventions to address barriers to adherence with the goal of ultimately improving adherence. There is existing literature focused on the need for a multidisciplinary team to intervene and address barriers to adherence in real time [33]; however, little to no successful interventions for patients with CKD exist and therefore more study is needed. We suggest that both a multimethod approach to identifying nonadherence and a multimethod approach to addressing nonadherence is essential to improving medication adherence in patients with chronic disease, such as CKD.…”

<p>Effect and features of information technology-based interventions on self-management in adolescent and young adult kidney transplant recipients: a systematic review</p>

“…Cochrane Collaboration’s evaluation tool was used to assess the quality of clinical trials 26. This tool evaluates6 areas including random sequence generation, allocation concealment, blinding participants and personnel, blinding outcome assessor, incomplete outcomes data, and selective outcome reporting. The first and second items are to prevent selection bias, while others are designed to prevent performance bias, detection bias, attrition bias, and reporting bias, respectively.…”

“…Quasi-experimental studies were assessed by using the Quality Assessment Tool for Pre- and Post-Intervention Designs by Brown et al, which is adopted from Estabrooks et al27,28 This tool evaluates6 areas including sampling, design, control of confounders, data collection and outcome measurement, statistical analysis, and conclusions and dropouts. Each study was evaluated independently by the two reviewers (RG, MRMH), and a consensus was reached on the disagreements by holding a bilateral discussion.…”

“…The survival rate of allograft in child and young adult kidney transplant recipients is low as compared to the elderly population, in whom up to 30% of all allografts fail in the first 5 years 6. The risk of graft rejection increases significantly during the transition from childhood to adolescence and reaches its peaks at the age of 19 so that during this period, it is almost three times more likely than younger children and the elderly 7.…”

Meeting report: Consensus recommendations for a research agenda to address immunosuppressant nonadherence in organ transplantation

“…These types of programs may be even more effective if employed in smartphones. For example, in pediatric kidney transplantation, Varnell and colleagues created an electronic health record‐enabled questionnaire to track adherence barriers than can flag patients appropriate for intervention as well as inform what types of intervention might be most successful …”