Early experiences of independent advocates for potential HIV+ recipients of HIV+ donor organ transplants.

BACKGROUND: HIV+ to HIV+ solid organ transplants in the United States are now legally permitted. Currently, these transplants must adhere to the HIV Organ Policy Equity (HOPE) Act Safeguards and Research Criteria that require the provision of an independent recipient advocate, a novel requirement for solid organ transplant programs. The objective of this study was to understand the experiences of the first advocates serving in this role. METHODS: We conducted semi-structured interviews with 15 HOPE independent recipient advocates (HIRAs) from 12 institutions. RESULTS: All HIRAs had a professional degree and experience in transplantation or infectious diseases. HIRAs' encounters with potential recipients varied in length, modality, and timing. The newness of the role and the lack of guidance were associated with unease among some HIRAs. Some questioned whether their role was redundant to others involved in transplantation and research since some potential recipients experienced informational fatigue. CONCLUSIONS: HOPE independent recipient advocates are ensuring the voluntariness of potential participants' decision to accept an HIV-infected organ. Many suggested additional guidance would be helpful and alleviate unease. Concerns about potential role redundancy raise the question of whether the HIRA requirement may be inadvertently increasing burden for potential recipients. Future work that captures the experiences of potential recipients is warranted.

Perspectives on implementing mobile health technology for living kidney donor follow-up: In-depth interviews with transplant providers.

BACKGROUND: United States transplant centers are required to report follow-up data for living kidney donors for 2 years post-donation. However, living kidney donor (LKD) follow-up is often incomplete. Mobile health (mHealth) technologies could ease data collection burden but have not yet been explored in this context. METHODS: We conducted semi-structured in-depth interviews with a convenience sample of 21 transplant providers and thought leaders about challenges in LKD follow-up, and the potential role of mHealth in overcoming these challenges. RESULTS: Participants reported challenges conveying the importance of follow-up to LKDs, limited data from international/out-of-town LKDs, and inadequate staffing. They believed the 2-year requirement was insufficient, but expressed difficulty engaging LKDs for even this short time and inadequate resources for longer-term follow-up. Participants believed an mHealth system for post-donation follow-up could benefit LKDs (by simplifying communication/tasks and improving donor engagement) and transplant centers (by streamlining communication and decreasing workforce burden). Concerns included cost, learning curves, security/privacy, patient language/socioeconomic barriers, and older donor comfort with mHealth technology. CONCLUSIONS: Transplant providers felt that mHealth technology could improve LKD follow-up and help centers meet reporting thresholds. However, designing a secure, easy to use, and cost-effective system remains challenging.

Use of Twitter in communicating living solid organ donation information to the public: An exploratory study of living donors and transplant professionals.

BACKGROUND: As transplant centers start leveraging Twitter for information dissemination and public engagement, it is important to understand current living solid organ donation-related Twitter use. METHODS: We identified public Twitter profiles available in 01/2017 that referenced living organ donation and analyzed the use of donation-related Twitter handles, names, or profile information. Tweets were manually abstracted and qualitatively analyzed for common themes. Social media influence of those tweeting about living donation was evaluated using Klout score. RESULTS: We identified 93 donors, 61 professionals, 12 hospitals, and 19 organizations that met eligibility criteria. Social media influence was similar across these groups (P = 0.4). Donors (16%) and organizations (23%) were more likely than professionals (7%) or hospitals (0%) to include transplant-related educational information in their profiles (P = 0.007). Living donation-related tweets were most commonly donation stories (33%), news reports (20%), reports about new transplant research (15%), and sharing transplant candidates' searches for donors (14%). CONCLUSIONS: This exploratory study of living donors and transplant professionals, hospitals, and organizations on Twitter provides insight into how the social media platform may be used to communicate about and disseminate information about living donation.

Development of a Patient Reported Measure of Experimental Transplants with HIV and Ethics in the United States (PROMETHEUS).

BACKGROUND: Transplantation of HIV-positive (HIV+) donor organs for HIV+ recipients (HIV D+/R+) is now being performed as research in the United States, but raises ethical concerns. While patient-reported outcome measures are increasingly used to evaluate clinical interventions, there is no published measure to aptly capture patients' experiences in the unique context of experimental HIV D+/R+ transplantation. Therefore, we developed PROMETHEUS (patient-reported measure of experimental transplants with HIV and ethics in the United States). To do so, we created a conceptual framework, drafted a pilot battery using existing and new measures related to this context, and refined it based on cognitive and pilot testing. PROMETHEUS was administered 6-months post-transplant in a clinical trial evaluating these transplants. We analyzed data from the first 20 patient-participants for reliability and validity by calculating Cronbach's alpha and reviewing item performance characteristics. RESULTS: PROMETHEUS 1.0 consisted of 29 items with 5 putative subscales: Emotions; Trust; Decision Making; Transplant; and Decision Satisfaction. Overall, responses were positive. Cronbach's alpha was > 0.8 for all subscales except Transplant, which was 0.38. Two Transplant subscale items were removed due to poor reliability and construct validity. CONCLUSIONS: We developed PROMETHEUS to systematically capture patient-reported experiences with this novel experimental transplantation program, nested it in an actual clinical trial, and obtained preliminary data regarding its performance.

Kidney Dyads: Caregiver Burden and Relationship Strain Among Partners of Dialysis and Transplant Patients.

BACKGROUND: Caring for dialysis patients is difficult, and this burden often falls on a spouse or cohabiting partner (henceforth referred to as caregiver-partners). At the same time, these caregiver-partners often come forward as potential living kidney donors for their loved ones who are on dialysis (henceforth referred to as patient-partners). Caregiver-partners may experience tangible benefits to their well-being when their patient-partner undergoes transplantation, yet this is seldom formally considered when evaluating caregiver-partners as potential donors. METHODS: To quantify these potential benefits, we surveyed caregiver-partners of dialysis patients and kidney transplant (KT) recipients (N = 99) at KT evaluation or post-KT. Using validated tools, we assessed relationship satisfaction and caregiver burden before or after their patient-partner's dialysis initiation and before or after their patient-partner's KT. RESULTS: Caregiver-partners reported increases in specific measures of caregiver burden (P = 0.03) and stress (P = 0.01) and decreases in social life (P = 0.02) and sexual relations (P < 0.01) after their patient-partner initiated dialysis. However, after their patient-partner underwent KT, caregiver-partners reported improvements in specific measures of caregiver burden (P = 0.03), personal time (P < 0.01), social life (P = 0.01), stress (P = 0.02), sexual relations (P < 0.01), and overall quality of life (P = 0.03). These improvements were of sufficient impact that caregiver-partners reported similar levels of caregiver burden after their patient-partner's KT as before their patient-partner initiated dialysis (P = 0.3). CONCLUSIONS: These benefits in caregiver burden and relationship quality support special consideration for spouses and partners in risk-assessment of potential kidney donors, particularly those with risk profiles slightly exceeding center thresholds.

Perceptions, Barriers, and Experiences With Successful Aging Before and After Kidney Transplantation: A Focus Group Study.

BACKGROUND: End-stage kidney disease (ESKD) patients are living longer, often into older age, and commonly pursue kidney transplantation. Successful aging, a multidimensional construct of physical and social wellbeing, has been expanded and adapted for patients with chronic disease. However, perceptions of, barriers to, and experiences with successful aging among adults with ESKD are unclear and likely differ based on whether they have received a kidney transplant. METHODS: Ten focus groups were held with 39 total ESKD patients aged ≥50 years (19 transplant candidates, 20 transplant recipients). Transcriptions were analyzed thematically by 2 independent coders using an inductive, constant comparative approach. RESULTS: The mean age was 64.8 (SD = 7.5); 51% were African American and 64% were males. Six themes were identified: familiarity with successful aging, perceptions of successful aging after ESKD diagnosis, barriers to successful aging, experiences with successful aging among transplant candidates, experiences with successful aging among transplant recipients, and suggested interventions. While all participants sought to achieve successful aging while living with ESKD, experiences with successful aging differed between candidates and recipients. Candidates struggled with the limitations of dialysis; some viewed transplantation as an opportunity to age successfully, while others were resigned to the drawbacks of dialysis. In contrast, transplant recipients were optimistic about their ability to age successfully, believing their transplant facilitated successful aging. Participants believed support groups for adults with ESKD and more thoughtful health care for aging adults would promote successful aging. CONCLUSIONS: Adults with ESKD may benefit from discussions with their clinicians and caregivers about goals, barriers, and strategies regarding successful aging.

The Impact of the mKidney mHealth System on Live Donor Follow-Up Compliance: Protocol for a Randomized Controlled Trial.

BACKGROUND: Every year, more than 5500 healthy people in the United States donate a kidney for the medical benefit of another person. The Organ Procurement and Transplantation Network (OPTN) requires transplant hospitals to monitor living kidney donors (LKDs) for 2 years postdonation. However, the majority (115/202, 57%) of transplant hospitals in the United States continue to fail to meet nationally mandated requirements for LKD follow-up. A novel method for collecting LKD follow-up is needed to ease both the transplant hospital-level and patient-level burden. We built mKidney-a mobile health (mHealth) system designed specifically to facilitate the collection and reporting of OPTN-required LKD follow-up data. The mKidney mobile app was developed on the basis of input elicited from LKDs, transplant providers, and thought leaders. OBJECTIVE: The primary objective of this study is to evaluate the impact of the mKidney smartphone app on LKD follow-up rates. METHODS: We will conduct a two-arm randomized controlled trial (RCT) with LKDs who undergo LKD transplantation at Methodist Specialty and Transplant Hospital in San Antonio, Texas. Eligible participants will be recruited in-person by a study team member at their 1-week postdonation clinical visit and randomly assigned to the intervention or control arm (1:1). Participants in the intervention arm will receive the mHealth intervention (mKidney), and participants in the control arm will receive the current standard of follow-up care. Our primary outcome will be policy-defined complete (all components addressed) and timely (60 days before or after the expected visit date) submission of LKD follow-up data at required 6-month, 1-year, and 2-year visits. Our secondary outcome will be hospital-level compliance with OPTN reporting requirements at each visit. Data analysis will follow the intention-to-treat principle. Additionally, we will collect quantitative and qualitative process data regarding the implementation of the mKidney system. RESULTS: We began recruitment for this RCT in May 2018. We plan to enroll 400 LKDs over 2 years and follow participants for the 2-year mandated follow-up period. CONCLUSIONS: This pilot RCT will evaluate the impact of the mKidney system on rates of LKD and hospital compliance with OPTN-mandated LKD follow-up at a large LKD transplant hospital. It will provide valuable information on strategies for implementing such a system in a clinical setting and inform effect sizes for future RCT sample size calculations. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/11000.

How Should Social Media Be Used in Transplantation? A Survey of the American Society of Transplant Surgeons.

BACKGROUND: Social media platforms are increasingly used in surgery and have shown promise as effective tools to promote deceased donation and expand living donor transplantation. There is a growing need to understand how social media-driven communication is perceived by providers in the field of transplantation. METHODS: We surveyed 299 members of the American Society of Transplant Surgeons about their use of, attitudes toward, and perceptions of social media and analyzed relationships between responses and participant characteristics. RESULTS: Respondents used social media to communicate with: family and friends (76%), surgeons (59%), transplant professionals (57%), transplant recipients (21%), living donors (16%), and waitlisted candidates (15%). Most respondents (83%) reported using social media for at least 1 purpose. Although most (61%) supported sharing information with transplant recipients via social media, 42% believed it should not be used to facilitate living donor-recipient matching. Younger age (P = 0.02) and fewer years of experience in the field of transplantation (P = 0.03) were associated with stronger belief that social media can be influential in living organ donation. Respondents at transplant centers with higher reported use of social media had more favorable views about sharing information with transplant recipients (P < 0.01), increasing awareness about deceased organ donation (P < 0.01), and advertising for transplant centers (P < 0.01). Individual characteristics influence opinions about the role and clinical usefulness of social media. CONCLUSIONS: Transplant center involvement and support for social media may influence clinician perceptions and practices. Increasing use of social media among transplant professionals may provide an opportunity to deliver high-quality information to patients.

Assessing the Attitudes and Perceptions Regarding the Use of Mobile Health Technologies for Living Kidney Donor Follow-Up: Survey Study.

BACKGROUND: In 2013, the Organ Procurement and Transplantation Network began requiring transplant centers in the United States to collect and report postdonation living kidney donor follow-up data at 6 months, 1 year, and 2 years. Despite this requirement, <50% of transplant centers have been able to collect and report the required data. Previous work identified a number of barriers to living kidney donor follow-up, including logistical and administrative barriers for transplant centers and cost and functional barriers for donors. Novel smartphone-based mobile health (mHealth) technologies might reduce the burden of living kidney donor follow-up for centers and donors. However, the attitudes and perceptions toward the incorporation of mHealth into postdonation care among living kidney donors are unknown. Understanding donor attitudes and perceptions will be vital to the creation of a patient-oriented mHealth system to improve living donor follow-up in the United States. OBJECTIVE: The goal of this study was to assess living kidney donor attitudes and perceptions associated with the use of mHealth for follow-up. METHODS: We developed and administered a cross-sectional 14-question survey to 100 living kidney donors at our transplant center. All participants were part of an ongoing longitudinal study of long-term outcomes in living kidney donors. The survey included questions on smartphone use, current health maintenance behaviors, accessibility to health information, and attitudes toward using mHealth for living kidney donor follow-up. RESULTS: Of the 100 participants surveyed, 94 owned a smartphone (35 Android, 58 iPhone, 1 Blackberry), 37 had accessed their electronic medical record on their smartphone, and 38 had tracked their exercise and physical activity on their smartphone. While 77% (72/93) of participants who owned a smartphone and had asked a medical question in the last year placed the most trust with their doctors, nurses, or other health care professionals regarding answering a health-related question, 52% (48/93) most often accessed health information elsewhere. Overall, 79% (74/94) of smartphone-owning participants perceived accessing living kidney donor information and resources on their smartphone as useful. Additionally, 80% (75/94) perceived completing some living kidney donor follow-up via mHealth as useful. There were no significant differences in median age (60 vs 59 years; P=.65), median years since donation (10 vs 12 years; P=.45), gender (36/75, 36%, vs 37/75, 37%, male; P=.57), or race (70/75, 93%, vs 18/19, 95%, white; P=.34) between those who perceived mHealth as useful for living kidney donor follow-up and those who did not, respectively. CONCLUSIONS: Overall, smartphone ownership was high (94/100, 94.0%), and 79% (74/94) of surveyed smartphone-owning donors felt that it would be useful to complete their required follow-up with an mHealth tool, with no significant differences by age, sex, or race. These results suggest that patients would benefit from an mHealth tool to perform living donor follow-up.