Promoting medication adherence from the perspective of adolescent and young adult kidney transplant recipients, parents, and health care professionals: A TAKE‐IT TOO study

Abstract

Medication non‐adherence is an important factor limiting allograft survival after kidney transplantation in AYA. Some interventions, including the TAKE‐IT, showed some success in promoting adherence but the potential for scalability and use in routine clinical practice is limited. We applied user‐centered design to gather the perspectives of recipients, parents, and health professionals concerning their needs, challenges, and potential intervention strategies to design an optimal, multi‐component medication adherence intervention. The qualitative study was conducted at four Canadian and three American kidney transplant programs. Separate focus groups for recipients, parents, and health professionals were convened to explore these stakeholders' perspectives. Directed content analysis was employed to identify themes that were shared vs distinct across stakeholders. All stakeholder groups reported challenges related to taking medications on time in the midst of their busy schedules and the demands of transitioning toward independence during adolescence. The stakeholders also made suggestions for the multi‐component behavioral intervention, including an expanded electronic pillbox and companion website, education materials, and customized digitized features to support shared responsibility and communication among recipients, parents, and health professionals. Several suggestions regarding the functionality and features of the potential intervention reported in this early stage will be explored in more depth as the iterative process unfolds. Our approach to actively involve all stakeholders in the process increases the likelihood of designing an adherence intervention that is truly user‐informed and fit for the clinical setting.

Perspectives of solid organ transplant recipients on medicine-taking: Systematic review of qualitative studies

“…Data saturation was reported in 53 (45%) studies, and use of qualitative software and member checking (providing preliminary findings to the participants for review) were reported in 40 (34%) and 28 (24%) studies, respectively. These studies performed member checking but did not report if and how patients contributed as co‐authors with exception of two studies where relevant stakeholders were co‐investigators 19,20 …”

“…Some felt transplantation replaced one life with another different set of rules including the routine and regime of taking medications 23,40,51,56,66,84,93,95,99,103,120‐123 . Although patients often adjusted to the new medication regimens, some found it difficult to adjust and accept the need to take medications 19,20,21,29,32,33,52,54,57,60,65‐67,70,93,94,96,97,102,118,124,125 . They struggled with the “larger size” of pills, and the “avalanche of medicines” taken each day 56 .…”

“…These studies performed member checking but did not report if and how patients contributed as co-authors with exception of two studies where relevant stakeholders were co-investigators. 19,20…”

“…Over time, some established a habit of taking medications by i ntegrating this into their schedule-"just like an automatic thing." 19,21,56,66,68,74,77,87,88,89,[93][94][95][96][97] They felt that this gave them selfagency, confidence, and autonomy in taking medication, and once it became "routine" they were no longer "bothered" by having to take medications regularly." 21,22,29,37,40,42,57,63,68,87,91,94,[98][99][100][101] Some identified "convenient timing" and for example took medications between brushing their teeth and sleeping.…”

“…23,40,51,56,66,84,93,95,99,103,[120][121][122][123] Although patients often adjusted to the new medication regimens, some found it difficult to adjust and accept the need to take medications. 19,20,21,29,32,33,52,54,57,60,[65][66][67]70,93,94,96,97,102,118,124,125 They struggled with the "larger size" of pills, and the "avalanche of medicines" taken each day. 56 The burden of the medication regimen and sourcing medications caused some to be "exhausted" and "sick of these pills and fed up."…”