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Background: Treatment burden refers to the work involved in managing one's health and its impact on well-being and has been associated with nonadherence in patients with chronic illnesses. No kidney transplant (KT)-specific measure of treatment burden exists. The aim of this study was to develop a KT-specific supplement to the Patient Experience with Treatment and Self-Management (PETS), a general measure of treatment burden.Methods: After drafting and pretesting KT-specific survey items, we conducted a cross-sectional survey study involving KT recipients from Mayo Clinic in Minnesota, Arizona, and Florida. Exploratory factor analysis (EFA) was used to identify domains for scaling the KT-specific supplement. Construct and known-groups validity were determined.Results: Survey respondents (n = 167) had a mean age of 61 years (range 22-86) and received a KT on average 4.0 years ago. Three KT-specific scales were identified (transplant function, self-management, adverse effects). Higher scores on the KT-specific scales were correlated with higher PETS treatment burden, worse physical and mental health, and lower self-efficacy (p < 0.0001). Patients taking more medications reported higher transplant self-management burden.Conclusions: We developed a KT-specific supplement to the PETS general measure of treatment burden. Scores may help providers identify recipients at risk for nonadherence. [ABSTRACT FROM AUTHOR]

Background: The objective is to assess cardiovascular (CV), malignancy, infectious, graft outcomes and tacrolimus levels for the Indigenous patients compared to Whites after kidney transplant (KTx). Methods: 165 Indigenous and 165 White patients matched for the KTx year at Mayo Clinic Arizona from 2007–2015 were studied over a median follow-up of 3 years. Propensity score was calculated to account for baseline differences. Results: Compared to Whites, Indigenous patients had the following characteristics: younger age, more obesity, diabetes, hypertension, and required dialysis prior to KTx (p<0.01). Indigenous patients had longer hospital stay for KTx, shorter follow-up and lived further from the transplant center (p<0.05). 210 (63.6%) received deceased donor KTx and more Whites received a living donor KTx compared to Indigenous patients (55.2% vs 17.6%, p<0.0001). Post-KTx, there was no difference in the CV event rates. The cumulative incidence of infectious complications was higher among the Indigenous patients (HR 1.81, p = 0.0005, 48.5% vs 38.2%, p = 0.013), with urinary causes as the most common. Malignancy rates were increased among Whites (13.3% vs 3.0%, p = 0.001) with skin cancer being the most common. There was a significant increase in the dose normalized tacrolimus level for the Indigenous patients compared to Whites at 1 months, 3 months, and 1 year post-KTx. After adjustment for the propensity score, there was no statistical difference in infectious or graft outcomes between the two groups but the mean number of emergency room visits and hospitalizations after KTx was significantly higher for Whites compared to Indigenous patients. Conclusions: Compared to Whites, Indigenous patients have similar CV events, graft outcomes and infectious complications after accounting for baseline differences. [ABSTRACT FROM AUTHOR]

Background: Kidney transplant recipients face a lifelong regimen of medications, health monitoring and medical appointments. This work involved in managing one's health and its impact on well-being are referred to as treatment burden. Excessive treatment burden can adversely impact adherence and quality of life. The aim of this study was to develop a conceptual framework of treatment burden after kidney transplantation. Qualitative interviews were conducted with kidney transplant recipients (n = 27) from three Mayo Clinic transplant centers. A semi-structured interview guide originally developed in patients with chronic conditions and tailored to the context of kidney transplantation was utilized. Themes of treatment burden after kidney transplantation were confirmed in two focus groups (n = 16). Results: Analyses confirmed three main themes of treatment burden after kidney transplantation: 1) work patients must do to care for their health (e.g., attending medical appointments, taking medications), 2) challenges/stressors that exacerbate felt burden (e.g., financial concerns, health system obstacles) 3) impacts of burden (e.g., role/social activity limitations). Conclusions: Patients describe a significant amount of work involved in caring for their kidney transplants. This work is exacerbated by individual, interpersonal and system-related factors. The framework will be used as a foundation for a patient-reported measure of treatment burden to promote better care after kidney transplantation. [ABSTRACT FROM AUTHOR]

Several studies report a high prevalence of non-adherence to prescribed immunosuppressive (IS) medications among kidney transplant recipients (KTRs), yet few interventions have been effective for helping patients sustain appropriate post-transplant adherence. We describe a multifaceted, evidence-based, medication adherence monitoring strategy ('TAKE IT') that leverages available transplant center resources to identify potential medication non-adherence and other concerns earlier to prevent complications that could result from inadequate IS adherence. The TAKE IT strategy includes: 1) medication adherence mobile application; 2) routine, online patient self-reported adherence assessments; 3) care alert notifications via the electronic health record (EHR) directed to transplant coordinators; 4) quarterly adherence reports to monitor IS values and summarize adherence trends; 5) deployment of adherence support tools tailored to specific adherence concerns. To test the TAKE IT intervention, we will conduct a two-arm, patient-randomized controlled trial at two large, diverse transplant centers (Northwestern University, Mayo Clinic, AZ) with planned recruitment of 450 KTRs (n = 225 per site) within 2 years of transplantation and 2 years of follow-up. Study assessments will take place at baseline, 6 weeks, 6, 12, 18 and 24 months. The primary effectiveness outcome is medication adherence via pill count, secondary outcomes include self-reported adherence and clinical outcomes. Process outcomes and cost-effectiveness will also be examined. The TAKE IT trial presents an innovative approach to monitoring and optimizing medication adherence among a population taking complex medication regimens. This trial seeks to evaluate the effectiveness and feasibility of this strategy compared to usual care. [ABSTRACT FROM AUTHOR]