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• W2509877332 abstract "Transplant professionals recognize that the long-term follow-up of living organ donors is a priority, yet there has been no implemented solution to this problem. This critical gap is essential, because the transplant field is now emphasizing living donation as a means to address the organ shortage. We detail our living donor initiative, which sets several priorities we recognize as fundamental to persons who have donated organs at our transplant center. This intervention attempts to mitigate the donor and center factors that are known to contribute to the lack of long-term follow-up. Beyond that, our goals are aimed at providing ongoing engagement, wellness, clinical data accrual, laboratory follow-up, and social support for our living donors, in continuity. Our ultimate goal is to nurture the development of local living donor community networks by providing social engagement for current and past donors, which also serves as a platform for greater population education on the societal importance of living donation. This initiative is based on joint recognition by our transplant team and our hospital leadership that supporting the long-term welfare of living donors is essential to accomplishing the goal of expanding living donor transplantation. The transplant team and hospital missions are aligned, and both contribute resources to the initiative. Transplant professionals recognize that the long-term follow-up of living organ donors is a priority, yet there has been no implemented solution to this problem. This critical gap is essential, because the transplant field is now emphasizing living donation as a means to address the organ shortage. We detail our living donor initiative, which sets several priorities we recognize as fundamental to persons who have donated organs at our transplant center. This intervention attempts to mitigate the donor and center factors that are known to contribute to the lack of long-term follow-up. Beyond that, our goals are aimed at providing ongoing engagement, wellness, clinical data accrual, laboratory follow-up, and social support for our living donors, in continuity. Our ultimate goal is to nurture the development of local living donor community networks by providing social engagement for current and past donors, which also serves as a platform for greater population education on the societal importance of living donation. This initiative is based on joint recognition by our transplant team and our hospital leadership that supporting the long-term welfare of living donors is essential to accomplishing the goal of expanding living donor transplantation. The transplant team and hospital missions are aligned, and both contribute resources to the initiative. The altruism of living organ donors is essential to increasing the quality and length of life for patients with end-stage renal and end-stage liver disease (1.Wolfe RA Ashby VB Milford EL Comparison of mortality in all patients on dialysis, patients on dialysis awaiting transplantation, and recipients of a first cadaveric transplant.N Engl J Med. 1999; 341 (et al): 1725-1730Crossref PubMed Scopus (3952) Google Scholar, 2.Olthoff KM Smith AR Abecassis M Defining long-term outcomes with living donor liver transplantation in North America.Ann Surg. 2015; 262 (et al discussion 73–75): 465-475Crossref PubMed Scopus (96) Google Scholar, 3.Rana A Gruessner A Agopian VG Survival benefit of solid-organ transplant in the United States.JAMA Surg. 2015; 150 (et al): 252-259Crossref PubMed Scopus (281) Google Scholar). According to United Network for Organ Sharing (UNOS), there have been 133 800 living kidney donors and 5804 living liver donors in the United States since 1988 (4.Organ Procurement and Transplantation Network. Transplant by donor type 2015 [cited 2016 Jun 17]. Available from: http://optn.transplant.hrsa.gov/converge/latestData/rptData.asp.Google Scholar). One of the critical gaps in the care of this population, particularly in the United States, is long-term, prospective medical and psychological monitoring for the sequelae of donation. Current practice of postdonation follow-up concentrates on medical data accrual. However, there is an increasing recognition that living donors have important emotional, social, and psychiatric considerations that need to be addressed (5.Allen MB Abt PL Reese PP. What are the harms of refusing to allow living kidney donation? An expanded view of risks and benefits.Am J Transplant. 2014; 14: 531-537Crossref PubMed Scopus (51) Google Scholar, 6.Abecassis MM Fisher RA Olthoff KM Complications of living donor hepatic lobectomy—A comprehensive report.Am J Transplant. 2012; 12 (et al): 1208-1217Crossref PubMed Scopus (237) Google Scholar). In recognition of these deficiencies and because we believe that it is our ethical responsibility to monitor and preserve the health of living donors, Yale-New Haven Hospital has developed a center-based initiative dedicated to living donors’ long-term follow-up, support, and welfare. Our initiative is intended to address the following priorities:1Provide long-term follow-up and monitoring for living organ donors to facilitate preventive health measures.2Address and preempt any unanticipated clinical and psychological risks associated with living organ donation.3Engage prior living organ donors in the creation of a social architecture that will support prior and future living donors.4Raise local public awareness of the importance and realities of living organ donation directed at potential new donors. It is now evident that recipient outcomes following living donor transplantation are superior to those following deceased donor transplantation for both kidney and liver transplantation (2.Olthoff KM Smith AR Abecassis M Defining long-term outcomes with living donor liver transplantation in North America.Ann Surg. 2015; 262 (et al discussion 73–75): 465-475Crossref PubMed Scopus (96) Google Scholar, 7.Chang P Gill J Dong J Living donor age and kidney allograft half-life: Implications for living donor paired exchange programs.Clin J Am Soc Nephrol. 2012; 7 (et al): 835-841Crossref PubMed Scopus (57) Google Scholar). The need for kidney and liver transplantation is expected to escalate globally in an environment in which deceased donor organ quality is declining as a result of increasing age and morbidity in the population at large. The growing prevalence of fatty liver disease is likely to have a negative impact on livers suitable for transplantation (8.Orman ES Mayorga ME Wheeler SB Declining liver graft quality threatens the future of liver transplantation in the United States.Liver Transpl. 2015; 21 (et al): 1040-1050Crossref PubMed Scopus (73) Google Scholar, 9.Rodrigue JR Schold JD Mandelbrot DA. The decline in living kidney donation in the United States: Random variation or cause for concern?.Transplantation. 2013; 96: 767-773Crossref PubMed Scopus (94) Google Scholar). For several reasons, the number of living donor transplants has plateaued over the past several years in the United States (9.Rodrigue JR Schold JD Mandelbrot DA. The decline in living kidney donation in the United States: Random variation or cause for concern?.Transplantation. 2013; 96: 767-773Crossref PubMed Scopus (94) Google Scholar), and the anticipated future need has prompted organizations like the American Society of Transplantation to intensify efforts to increase awareness of living donation (10.Organ Procurement and Transplantation Network. OPTN Strategic Plan 2015-2018. 2015 [cited 2015 Nov 3]. Available from: http://optn.transplant.hrsa.gov/governance/strategic-plan/.Google Scholar, 11.Salomon DR Langnas AN Reed AI Bloom RD Magee JC Gaston RS. AST/ASTS workshop on increasing organ donation in the United States: Creating an “arc of change” from removing disincentives to testing incentives.Am J Transplant. 2015; 15: 1173-1179Crossref PubMed Scopus (47) Google Scholar). An emerging consensus is that the safe and ethical expansion of living donation is likely the most expedient method to address the organ shortage (12.Tushla L Rudow DL Milton J Rodrigue JR Schold JD Hays R. Living-donor kidney transplantation: Reducing financial barriers to live kidney donation—Recommendations from a consensus conference.Clin J Am Soc Nephrol. 2015; 10: 1696-1702Crossref PubMed Scopus (73) Google Scholar, 13.Levy GA Selzner N Grant DR. Fostering liver living donor liver transplantation.Curr Opin Organ Transplant. 2016; 21: 224-230Crossref PubMed Scopus (21) Google Scholar). For kidney donors, this has coincided with greater flexibility and the tolerance of health conditions that were previously thought to represent contraindications to kidney donation. For example, in the past 15 years the number of approved kidney donors with obesity, kidney stones, prediabetes, and hypertension has increased (14.Taler SJ Messersmith EE Leichtman AB Demographic, metabolic, and blood pressure characteristics of living kidney donors spanning five decades.Am J Transplant. 2013; 13 (et al): 390-398Crossref PubMed Scopus (85) Google Scholar, 15.Reese PP Boudville N Garg AX. Living kidney donation: Outcomes, ethics, and uncertainty.Lancet. 2015; 385: 2003-2013Abstract Full Text Full Text PDF PubMed Scopus (150) Google Scholar). In addition, between 2002 and 2009 the number of kidney donors aged 55 years and older doubled (16.Lam NN Garg AX. Acceptability of older adults as living kidney donors.Curr Opin Nephrol Hypertens. 2016; 25: 245-256Crossref PubMed Scopus (14) Google Scholar). As patient-centered models of healthcare continue to be emphasized, greater shared decision making among living organ donor candidates (17.Thiessen C Gordon EJ Reese PP Kulkarni S. Development of a donor-centered approach to risk assessment: Rebalancing nonmaleficence and autonomy.Am J Transplant. 2015; 15: 2314-2323Crossref PubMed Scopus (32) Google Scholar) may further extend the bounds of future medical eligibility. The convergence of increasing living organ donation to address the organ shortage with the greater acceptance of medically complex donors is ethically justifiable only with dedicated programs that address the long-term medical, social, and psychiatric health of living donors. Several international models of care aim to address the long-term follow-up of living donors. However, most have limitations in long-term compliance. One successful program is the Swiss Organ Living Donor Health Registry, which has provided data on postdonation incidence of hypertension and microalbuminuria (18.Thiel GT Nolte C Tsinalis D Steiger J Bachmann LM. Investigating kidney donation as a risk factor for hypertension and microalbuminuria: Findings from the Swiss prospective follow-up of living kidney donors.BMJ Open. 2016; 6: e010869Crossref PubMed Scopus (21) Google Scholar). Despite the government-mandated coverage of biennial medical follow-up testing and a funded central donor registry, 10-year follow-up data were reported for only 65% of living donors (18.Thiel GT Nolte C Tsinalis D Steiger J Bachmann LM. Investigating kidney donation as a risk factor for hypertension and microalbuminuria: Findings from the Swiss prospective follow-up of living kidney donors.BMJ Open. 2016; 6: e010869Crossref PubMed Scopus (21) Google Scholar). The Australia/New Zealand Dialysis and Transplant Living Kidney Donor Registry is another program that has collected long-term data on living kidney donors since 2004. However, a recent study on donors who had medical risk factors that were previously considered contraindications to donation identified significant issues with missing data, which hindered a true assessment of the donors’ long-term risks (19.Clayton PA Saunders JR McDonald SP Risk-factor profile of living kidney donors: The Australia and New Zealand dialysis and transplant living kidney donor registry 2004–2012.Transplantation. 2016; 100 (et al): 1278-1283Crossref PubMed Scopus (17) Google Scholar). In the United States, in 2013 the Organ Procurement and Transplantation Network (OPTN) set forth regulations regarding the oversight of living donor follow-up. The current policy requires that transplant centers obtain clinical and laboratory data at 6 months, 1 year, and 2 years following donation (20.Organ Procurement and Transplantation Network. Policy 18: Data submission requirements. [cited 2016 August 27]. Available from: http://optn.transplant.hrsa.gov/policiesAndBylaws/policies.asp.Google Scholar). However, this mandate was not accompanied by funding to assist transplant centers with the costs of data collection, nor did it establish incentives or penalties for centers that collect or fail to report these data (21.Ommen ES LaPointe Rudow D Medapalli RK Schröppel B Murphy B. When good intentions are not enough: Obtaining follow-up data in living kidney donors.Am J Transplant. 2011; 11: 2575-2581Crossref PubMed Scopus (31) Google Scholar). Studies to date suggest that 2-year follow-up does not cover the time period in which donors will likely need intervention. For example, a prospective study by Kasiske et al. showed that kidney donors exhibit improved renal function compared to matched controls 3 years from donation; a 2-year follow-up period would be unlikely to capture medically relevant information pertaining to donors’ long-term risk of developing renal insufficiency (22.Kasiske BL Anderson-Haag T Israni AK A prospective controlled study of living kidney donors: Three-year follow-up.Am J Kidney Dis. 2015; 66 (et al): 114-124Abstract Full Text Full Text PDF PubMed Scopus (115) Google Scholar). Furthermore, kidney donors’ primary long-term risk is the development of hypertension, which is often diagnosed 5–10 years postdonation (23.Ibrahim HN Foley R Tan L Long-term consequences of kidney donation.N Engl J Med. 2009; 360 (et al): 459-469Crossref PubMed Scopus (819) Google Scholar, 24.Boudville N Prasad GV Knoll G Meta-analysis: Risk for hypertension in living kidney donors.Ann Intern Med. 2006; 145 (et al): 185-196Crossref PubMed Scopus (314) Google Scholar). The acuity and severity of living liver donor morbidity are greater than those of kidney donors. Although most complications are resolved within 1 year of donation, living liver donors may experience longer-term psychiatric or social complications (6.Abecassis MM Fisher RA Olthoff KM Complications of living donor hepatic lobectomy—A comprehensive report.Am J Transplant. 2012; 12 (et al): 1208-1217Crossref PubMed Scopus (237) Google Scholar). Thus, current regulatory standards fail to provide the necessary long-term monitoring and social support necessary for early detection and intervention. Performance improvement initiatives have been successful in improving mandated living donor UNOS reporting at 2 years following donation (25.Keshvani N Feurer ID Rumbaugh E Evaluating the impact of performance improvement initiatives on transplant center reporting compliance and patient follow-up after living kidney donation.Am J Transplant. 2015; 15 (et al): 2126-2135Crossref PubMed Scopus (9) Google Scholar). Nevertheless, only 50% of transplant centers complied with OPTN clinical data reporting and only 30% with laboratory testing requirements (26.Schold JD Buccini LD Rodrigue JR Critical factors associated with missing follow-up data for living kidney donors in the United States.Am J Transplant. 2015; 15 (et al): 2394-2403Crossref PubMed Scopus (37) Google Scholar). Younger donor age, poor socioeconomic status, and distance from the transplant center were associated with worse compliance. In addition to donor factors, 30–40% of the missing data were explained by center deficiencies, suggesting this is a complex, multilevel problem that can only be rectified with dedicated resources and an infrastructure designed to specifically address the needs of living organ donors. Although transplant centers engage in an exhaustive process of informed consent for living donor evaluation and surgery (27.Thiessen C Kim YA Yoo PS Rodriguez-Davalos M Mulligan D Kulkarni S. Written informed consent for living liver donor evaluation: Compliance with Centers for Medicare and Medicaid Services and Organ Procurement and Transplantation Network Guidelines and alibi offers.Liver Transpl. 2014; 20: 416-424Crossref PubMed Scopus (2) Google Scholar, 28.Thiessen C Kim YA Formica R Bia M Kulkarni S. Written informed consent for living kidney donors: Practices and compliance with CMS and OPTN requirements.Am J Transplant. 2013; 13: 2713-2721Crossref PubMed Scopus (23) Google Scholar), potential and past living donors still report experiencing a variety of unmet needs centering on a lack of social support. Former living donors have occasionally reported feeling “abandoned” by the transplant center after their donations, perceiving a shift in focus of the transplant team to the recipient, which has led some former donors to state, “Living donors are people, too” (29.Smith MD Kappell DF Province MA Living-related kidney donors: A multicenter study of donor education, socioeconomic adjustment, and rehabilitation.Am J Kidney Dis. 1986; 8 (et al): 223-233Abstract Full Text PDF PubMed Scopus (105) Google Scholar, 30.Schover LR Streem SB Boparai N Duriak K Novick AC. The psychosocial impact of donating a kidney: Long-term follow-up from a urology based center.J Urol. 1997; 157: 1596-1601Crossref PubMed Scopus (146) Google Scholar, 31.Wright C. Living donors are people too.Narrat Inq Bioeth. 2012; 2: E9-E11Crossref PubMed Scopus (2) Google Scholar). Narratives from living donors point to a lack of support and understanding, particularly from friends and family, of the decision to consider organ donation (32.Altobelli L. An altruistic living donor’s story.Narrat Inq Bioeth. 2012; 2: 7-9Crossref PubMed Google Scholar). Although support tends to improve following donation, some instances, such as failed transplants, predict worse psychosocial status for both kidney and liver donors (33.Ladner DP Dew MA Forney S Long-term quality of life after liver donation in the Adult to Adult Living Donor Liver Transplantation Cohort Study (A2ALL).J Hepatol. 2015; 62 (et al): 346-353Abstract Full Text Full Text PDF PubMed Scopus (64) Google Scholar, 34.Jacobs CL Gross CR Messersmith EE Emotional and financial experiences of kidney donors over the past 50 years: The RELIVE Study.Clin J Am Soc Nephrol. 2015; 10 (et al): 2221-2231Crossref PubMed Scopus (56) Google Scholar). To address this social support vacuum, many potential donors have used personal connections or external programs (eg the National Kidney Foundation peer program) to learn more about the donation experience directly from former living donors (35.Rock1Kidney. Donor stories [cited 2015 Dec 15]. Available from: http://www.rock1kidney.org.Google Scholar, 36.National Kidney Foundation. NFK peers [cited 2015 Dec 15]. Available from: https://www.kidney.org/patients/peers.Google Scholar). Donors also now participate in online support groups to obtain information and support from other donors, suggesting that there is a need for greater community development specific to this population (37.The Living Bank. The Living Donor Forum. [cited 2016 Jun 17]. Available from: http://www.livingbank.orgGoogle Scholar, 38.Living Donors Online. Living Donors Online message board. [cited 2016 Jun 17]. Available from: http://www.livingdonorsonline.com.Google Scholar). To date, living donor follow-up programs have focused on medical data accrual; donors in need of social and psychiatric support are not identified. As one donor notes, “As time moves along and there are more living donors (and they are increasing every day) they can work together to create acceptance and understanding for themselves and for other future donors” (32.Altobelli L. An altruistic living donor’s story.Narrat Inq Bioeth. 2012; 2: 7-9Crossref PubMed Google Scholar). The Patient Protection and Affordable Care Act (commonly termed the Affordable Care Act [ACA]) is a federal statue signed into law in 2010 that represents the most significant change in the US healthcare system since implementation of Medicare and Medicaid. One of the features of the ACA is that it promotes the implementation of care models based on improving overall population health (39.Shaw FE Asomugha CN Conway PH Rein AS. The Patient Protection and Affordable Care Act: Opportunities for prevention and public health.Lancet. 2014; 384: 75-82Abstract Full Text Full Text PDF PubMed Scopus (84) Google Scholar). The novel approaches of the Health Research and Educational Trust (HRET) aim to achieve greater efficiency in healthcare delivery and coordination by transforming healthcare, with the ultimate goal of creating a culture of health (40.Health Research and Educational Trust. Hospital-based strategies for creating a culture of health. Chicago, IL; 2014.Google Scholar). These strategies encourage hospitals and hospital care systems to collaborate with community stakeholders to enhance preventive healthcare in culturally sensitive ways and to promote the overall health of a defined group of people. An important component is to track health metrics, which, as outlined above, is a critical gap in the current long-term management of living organ donors. In regard to overall population health needs, health systems understandably prioritize the most prevalent medical conditions in a broad and comprehensive manner. We suggest that traction may be gained by defining focused populations, such as living donors, and by providing targeted strategies to close established gaps, such as the lack of long-term donor follow-up and management. This initiative was formulated in recognition that population engagement and education are key elements necessary to expand living donation. The HRET proposal provides a foundation for living donor community development based on ongoing local engagement with donors, which also creates an opportunity to provide long-term monitoring and social support. The implementation of this donor initiative utilizes our established hospital outreach efforts that have heretofore been directed primarily to provide education and relationship building for referring physicians. We have restructured the position of our outreach coordinator to be a Living Donor Community of Health Coordinator who is now involved with our living donors in all phases of the donation process, engages community partners, and conducts living donor outreach programs that are based on HRET strategies of creating a culture of health (Table 1) (40.Health Research and Educational Trust. Hospital-based strategies for creating a culture of health. Chicago, IL; 2014.Google Scholar).Table 1Living donor outreach initiative: HRET strategy translation, process, and outcome measuresHRET strategic considerations1Strategies derived from “HRET: Hospital-Based Strategies for Creating a Culture of Health” (40).Living donor outreach initiativeProcess measuresOutcome measuresHospital/health care systemMission alignmentHospital and transplant leadership prioritize posttransplant outreachAnnual support increases to account for total increase in donors over time–Leadership commitmentUse of established institutional community relationships to prioritize living donor monitoring and population educationNumber of newly identified community stakeholders annually that actively participate in intervention–Core competencies/resourcesTransplant faculty dedicate time for donor preventive health and monitoring of clinical/laboratory dataNumber of donors identified needing additional care per yearAnnual percent compliance with UNOS clinical and laboratory dataPayment/care delivery alignmentFinancial coverage for outreach and laboratory costsTotal annual cost/eventAnnualized cost/donor Annual change in out-of-pocket costs per donor for follow-up careLevel of community influenceUse established outreach platform for donor outreachNumber of newly identified community stakeholders involved in outreachNumber of new potential donors attending outreach events per year Percent increase in donor engagement outside of outreach eventsCommunityClear understanding of needsObtain donor feedback and adapt outreach to donors needsNumber of newly implemented donor-directed process changes per yearNumber of identified unmet needs Annual percent resolution of needs addressed by programReadiness/urgencyAssess donors’ social and psychiatric needNumber of donors identified in need of social or psychiatric supportPercentage of addressed social and psychiatric cases per year Annual percent of reported improvement in social and psychiatric statusShared goalsFacilitate donor engagement to increase public awareness of living donationNumber of reported instances of new donor assistance by previous donorsPercent increase in living donor evaluations per year Percent increase in donor engagement outside of outreach eventsStakeholders/partnersPartner availability/readinessDedicated living donor community health coordinator to develop joint outreaches with community stakeholdersNumber of newly participating community stakeholders per yearNumber of new potential donors attending outreach events per yearCore competencies/resourcesDedicated associate coordinator to obtain clinical, social and laboratory dataNumber of donors identified needing additional care per yearIncident cases of medical or psychiatric diagnoses per year Annual percent of reported improvement in social and psychiatric statusShared goalsFacilitate ongoing population education on living donationNumber of previous donor to potential donor interactionsPercent increase in living donor evaluations per year stratified to socioeconomic status and ethnicity Annual donor perception of engagement with transplant center and center initiativeHRET, Health Research and Educational Trust; UNOS, United Network for Organ Sharing.1 Strategies derived from “HRET: Hospital-Based Strategies for Creating a Culture of Health” (40.Health Research and Educational Trust. Hospital-based strategies for creating a culture of health. Chicago, IL; 2014.Google Scholar). Open table in a new tab HRET, Health Research and Educational Trust; UNOS, United Network for Organ Sharing. Our intent is to provide additional support not only by expanding preventive health strategies and long-term monitoring but also by establishing opportunities for peer education and the creation of social support networks among past, current, and future donors. The ultimate goal is to foster local donor community networks. Our model is based on delivering local access, information on overall health/wellness, selective intervention, lifelong basic clinical and laboratory monitoring, peer support, and population education. Local outreach to donors provides access and ongoing engagement and addresses a major barrier to donor follow-up (26.Schold JD Buccini LD Rodrigue JR Critical factors associated with missing follow-up data for living kidney donors in the United States.Am J Transplant. 2015; 15 (et al): 2394-2403Crossref PubMed Scopus (37) Google Scholar) because clinical and laboratory data are obtained during these events. Fostering new community partnerships with religious groups, community hospitals, secondary schools, dialysis networks, and medical group practices provides opportunities for community education on the public health crisis for patients with end-stage organ failure. This program emphasizes donor preventive health, largely focusing on HRET priority health initiatives of mitigating obesity, hypertension, and diabetes, and identifying donors in need of social and psychiatric support (Table 1). A natural extension of this type of outreach is that it fosters an engaged population that has already demonstrated altruism and interest in assisting public health, which ultimately assists in providing ongoing population education on the importance of living organ donation. Figure 1 shows a schematic representation of our outreach platform and how donors are engaged to accomplish our long-term goal of donor community development and population education. Many healthcare interventions do not translate into meaningful or sustained changes in patient outcomes (41.Damschroder LJ Aron DC Keith RE Kirsh SR Alexander JA Lowery JC. Fostering implementation of health services research findings into practice: A consolidated framework for advancing implementation science.Implement Sci. 2009; 4: 50Crossref PubMed Scopus (5932) Google Scholar). Some estimates suggest that up to two-thirds of proposed healthcare interventions fail in this respect (41.Damschroder LJ Aron DC Keith RE Kirsh SR Alexander JA Lowery JC. Fostering implementation of health services research findings into practice: A consolidated framework for advancing implementation science.Implement Sci. 2009; 4: 50Crossref PubMed Scopus (5932) Google Scholar, 42.Ferlie EB Shortell SM. Improving the quality of health care in the United Kingdom and the United States: A framework for change.Milbank Q. 2001; 79: 281-315Crossref PubMed Scopus (837) Google Scholar). Evaluation of the effectiveness of program initiatives includes assessing the characteristics of the intervention, the context (outer and inner settings), the individuals involved, and the overall process (41.Damschroder LJ Aron DC Keith RE Kirsh SR Alexander JA Lowery JC. Fostering implementation of health services research findings into practice: A consolidated framework for advancing implementation science.Implement Sci. 2009; 4: 50Crossref PubMed Scopus (5932) Google Scholar). Although scientific evaluation of interventions requires the assessment of several constructs within each of these areas and more comprehensive data than are currently available, we point to several features of our intervention that appear favorable to our program's probability of long-term success. First, this is an internally driven concept that has strong support within our transplant faculty and that is aligned with our hospital's leadership. Addressing the long-term management of living donors is viewed as a responsibility and, thus, has the “internal efficacy” necessary for the intervention to start successfully and the adaptive qualities to refine itself over time through donor feedback (41.Damschroder LJ Aron DC Keith RE Kirsh SR Alexander JA Lowery JC. Fostering implementation of health services research findings into practice: A consolidated framework for advancing implementation science.Implement Sci. 2009; 4: 50Crossref PubMed Scopus (5932) Google Scholar). Second, the intervention is not complex. It effectively uses our established outreach organizational structure with modifications related to obtaining long-term follow-up data. We have refocused our outreach coordinator role to focus solely on this program, so no additional personnel costs were incurred. Our living donor associate coordinators participate in these outreach programs and assist organizing testing, clinical data accrual, and data entry. Transplant faculty dedicate their time on a rotational basis to provide updates on living donation at our center and education on preventive health. The laboratory cost incurred by our hospital is $14 per donor, which covers a complete metabolic panel and spot urine protein/albumin. Future analysis of attributable costs will require careful accounting of contributed effort and venue costs, which currently have significant variability. Third, the implementation climate has an underlying “tension for change” and is prioritized within our institution (41.Damschroder LJ Aron DC Keith RE Kirsh SR Alexander JA Lowery JC. Fostering implementation of health services research findings into practice: A consolidated framework for advancing implementation science.Implement Sci. 2009; 4: 50Crossref PubMed Scopus (5932) Google Scholar, 43.Simpson DD Dansereau DF. Assessing organizational functioning as a step toward innovation.Sci Pract Perspect. 2007; 3: 20-28Crossref PubMed Scopus (64) Google Scholar, 44.Greenhalgh T Robert G Macfarlane F Bate P Kyriakidou O. Diffusion of innovations in service organizations: Systematic review and recommendations.Milbank Q. 2004; 82: 581-629Crossref PubMed Scopus (4294) Google Scholar). Expanding living organ transplantation is now recognized as a critical component of a larger strategy to address the public health crisis of end-stage organ failure (11.Salomon DR Langnas AN Reed AI Bloom RD Magee JC Gaston RS. AST/ASTS workshop on increasing organ donation in the United States: Creating an “arc of change” from removing disincentives to testing incentives.Am J Transplant. 2015; 15: 1173-1179Crossref PubMed Scopus (47) Google Scholar). Investment in greater outreach, public awareness, and local advocacy are important steps to achieve this goal. However, to do so without an appropriate structure to address the long-term welfare of living organ donors would ignore our fundamental responsibility and limit the internal and external validity of any donor-centered initiative. Last, the process undertaken relies on the engagement of all stakeholders, particularly living donors. The ultimate goal is to facilitate the development of living donor community networks, which may include current donors, donors determined to be ineligible, prior donors, potential new donors, or persons simply interested in the concept of living donation. An important premise that underlies this effort is that individuals who come forward to be evaluated as potential donors, regardless of whether they donate, represent a unique cohort whose altruistic nature further supports other donors and facilitates education of individuals who desire additional information on living donation. The ultimate expression of this ideal will require several years to mature; however, the goal is to provide local peer support and development of a social architecture that supports long-term health and well-being of living donors. Living organ donation is an important component of a needed larger solution to the healthcare crisis for patients with end-stage kidney and end-stage liver disease, but focusing on living organ donation without a comprehensive plan to address the long-term needs of donors ignores an essential obligation of the transplant community. We provided an overview of our initiative, which restructures existing outreach resources to specifically address comprehensive living donor monitoring and creates a mechanism to attain the necessary prospective data that will be used to care for donors and attain greater granularity on the long-term medical and social risks of living kidney and liver donation. We intend for these efforts to develop into a community-based program aimed at achieving greater peer support and population-based education to increase awareness of living donor transplantation." @default.
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• W2509877332 date "2016-12-01" @default.
• W2509877332 modified "2023-10-14" @default.
• W2509877332 title "The Long-Term Follow-up and Support for Living Organ Donors: A Center-Based Initiative Founded on Developing a Community of Living Donors" @default.
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