Facilitators and barriers of medication adherence in pediatric liver and kidney transplant recipients: a mixed-methods study Objective—Many young transplant patients (≤11 years old) struggle to take their immunosuppressive and co-medications correctly, yet it remains unclear which factors positively or negatively affect medication adherence. Research studies on determinants in this age group are scarce, have methodological flaws, and focus exclusively on immunosuppressants or on barriers rather than on facilitators. Methods—This study used a consecutive mixed-methods (qualitative + quantitative) design. Semistructured interviews with parents of 10 pediatric liver or kidney transplant recipients 2 to 11 years old on adherence facilitators and barriers were conducted, complemented by quantification of adherence to the immunosuppressants and co-medications, and completion of the “immunosuppressive medication adherence barriers” self-report instrument. Results—A median of 19 (range, 10-29) barriers was reported: the most commonly encountered were forgetfulness (70%), vomiting (70%), bad taste (60%), and interruptions in routine (60%). Parents reported a median of 15 facilitators (range, 6-26), including using practical aids (100%), having medication with you at all times (100%), having to take fewer medications (80%), and experiencing fewer regimen changes over time (80%). No clear distinction between immunosuppressants or co-medications was made. Conclusions—This study provides several new insights based on peer experience to support future patients and their parents in medication adherence. (Progress in Transplantation. 2014;24:311-321) ©2014 NATCO, The Organization for Transplant Professionals doi: http://dx.doi.org/10.7182/pit2014873

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rgan transplant substantially improves survival and quality of life in young patients with terminal organ failure. Since the start of our pediatric program, a total of 37 liver transplants in 36 children and 151 kidney transplants in 135 children have been performed with 1-year patient survival rates of 92% and 97%, respectively. 1 Yet organ transplant does not offer a complete “cure”: pediatric transplant patients need to take immunosuppressants after transplant to avoid organ rejection, graft loss, and hence premature mortality. Evidence shows that many pediatric patients struggle to take their immunosuppressants correctly. More specifically, about 30% to 60% of pediatric kidney or liver transplant recipients are nonadherent to their immunosuppressive regimen.2-6 Most studies, however, focus exclusively on adolescent patients as they are the most vulnerable for nonadherence. Others include patients

Progress in Transplantation, Vol 24, No. 4, December 2014

Anouck Claes, MSN, Anneloes Decorte, MSN, Elena Levtchenko, MD, PhD, Noel Knops, MD, PhD, Fabienne Dobbels, MSc, PhD University of Leuven (AC, NK, FD) and University Hospitals of Leuven (AD, EL, NK), Leuven, Belgium Corresponding author: Fabienne Dobbels, MSc, PhD, Health Services and Nursing Research, University of Leuven, Kapucijnenvoer 35/4, B-3000 Leuven, Belgium (e-mail: fabienne.dobbels@med .kuleuven.be) To purchase electronic or print reprints, contact: American Association of Critical-Care Nurses 101 Columbia, Aliso Viejo, CA 92656 Phone (800) 899-1712 (ext 532) or (949) 448-7370 (ext 532) Fax (949) 362-2049 E-mail [email protected]

with a large age span, ranging from 0 to 25 years old. In early childhood or preadolescent pediatric transplant patients (ie, age