survivorship
In the US alone, there are approximately 180 transplant programs. These centers are unique in several aspects: number of transplants performed per year, the type of transplants performed, the type of institution performing the transplant, the geographic area served by the transplant center, the socioeconomic status of the population served, as well as the existence of a LTFU transplant survivorship care clinic or not. All these factors contribute to outcome differences reported among the centers.
In a recent survey of 200 HCT transplant programs in the US and Canada, among the 77% that responded only 45% indicated the presence of a dedicated LTFU clinic [33]. Most programs with an established LTFU clinic reported benefit in regards to delivery of preventative guidelines for surveillance and management of late transplant effects care as recommended by the American Society of Blood and Marrow Transplantation, currently named as the American Society of Transplantation and Cellular Therapy (ASTCT).
A survey of 441 HCT survivors in Australia found that 62% of them preferred a single provider for their LTFU care rather than a shared‐care model [22]. Furthermore, most of these survivors preferred having their transplant physician, rather than their local hematologist or general practitioner, to provide their LTFU care. When asked about preferences for the location of LTFU care, 74% preferred follow‐up at the transplant center or through a satellite clinic closer to their home attended by the transplant physician (27%) or through telemedicine service linked to the transplant center (21%). In this study, survivors preferring telehealth in LTFU care tended to have higher educational status, increased sexual morbidity, and participated less in exercise (possibly reflecting less motility).
In other studies, a dedicated, multidisciplinary LTFU clinic appeared to be associated with improved overall survival [34] and overcame the adverse impact of geographic distance from the transplant center to the patient’s residence [35]. This is significant as previous studies showed that rural residence and long driving distance was associated with worse survival following autologous [36] and allogeneic HCT [37].
Access to a dedicated, multidisciplinary LTFU clinic would appear optimal for all transplant survivors, but this is only available for a minority of centers and services vary between centers. However, when centers offer a LTFU‐dedicated program as an extension of primary HCT care, travel to the transplant center for long‐term care can be a challenge for many survivors who return to their residence at rural or distant regional areas after completion of their acute posttransplant care. Additional barriers such as economic hardship, lack of local experts familiar with long‐term posttransplant care, and poor communication between local healthcare providers and HCT specialists may lead to increased mortality and morbidity [36,38,39]. In response, there have been increased efforts among the transplant community to improve communication and coordination of care with the local provider(s) once the patient returns home [40].
Telemedicine is a promising care modality for improving access to long‐term care following HCT with potential to improve outcomes of HCT survivors. For instance, in a study cohort of 2849 survivors of allogeneic HCT, performed at Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance, there was no negative association between longer distance between patients’ primary residence and the transplant center, nor rural/urban type of residence, on mortality and other clinical outcomes [41]. This finding is possibly explained by the availability of telemedicine consultative services as part of a dedicated HCT survivorship multidisciplinary LTFU program. This HCT survivorship care model, detailed below, provides transplant‐specific expertise to local health providers and patients through free‐of‐charge telemedicine techniques by transplantation staff with expertise in LTFU care without the requirement of having the patient evaluated at the transplant center. Patients are encouraged to re‐establish care with their local physician early after discharge from their acute posttransplant phase and maintain care continuum through telemedicine consultative services for life. The study by Khera et al. [41] supports the finding that a dedicated long‐term HCT care model, even if performed remotely through telecommunication, can help overcome the adverse effect of geographic distance and rural residence on survival.
Telemedicine may contribute to improved overall survival (OS) and decreased non‐relapse mortality (NRM) in patients with cGVHD as indirectly supported by the findings of a study by Inamoto et al. [42] that validated the Center for International Blood and Marrow Transplant Registry (CIBMTR) risk score for NRM and OS for patients with cGVHD [43]. In the Inamoto et al. study [42], performance of the risk score in 376 consecutive patients transplanted for leukemia or myelodysplastic syndrome, who received systemic treatment for cGVHD between 2006 and 2010 at two individual HCT centers (one center that offers access to telemedicine as part of a multidisciplinary LTFU survivorship care model [center A] and another smaller center without a telemedicine LTFU care model [center B]). As compared to CIBMTR results, OS for patients at risk group 2 was slightly higher for center A and slightly lower for those at center B; OS for risk group 3 was higher at center A and much lower for those at center B, despite favorable demographics at center B. As compared to CIBMTR results, NRM for patients at risk group 2 was similar at both centers A and B, but NRM for patients at risk group 3 was lower at center A and much higher for the those at center B. In summary, patients with high‐risk cGVHD who have access to telemedicine at their center had lower NRM and higher OS compared to a center without telemedicine and to the conglomerate centers reported to the CIBMTR.
Telemedicine has proven to be a useful strategy for preventive care [44] and management of acute and chronic diseases [45–51] that are also commonly found in long‐term HCT survivors. It is an attractive option for many transplant centers who may not have the financial resources, personnel, or clinic space to meet this demand, or conversely, have too few survivors to warrant establishment of a dedicated LTFU care clinic. Telemedicine may also fill the gaps in care that result from provider shortages outside of metropolitan transplant centers and for the overall decrease in the HCT professional workforce. Special populations, such as adolescents and young adults (AYA) or geriatric transplant survivors, whose unique life stage often makes it difficult to travel for frequent follow‐up may find telemedicine convenient. Furthermore, HCT survivors who are technologically savvy or who have integrated successfully back into the work force may find telemedicine and distance care more appealing for its efficiency. On a global perspective, telemedicine may provide a means for patients in underserved countries to receive long‐term care remotely either from a regional transplant center or from a major academic institution with a vested interest in international health services. Other potential benefits of telemedicine include increased satisfaction among local providers as a result of improved communication and patient care coordination and, most importantly, improved health outcomes and quality of life among transplant survivors due to early access and interventions. Telemedicine helps to identify patients who may benefit from returning to the transplant center for in‐person evaluation for more appropriate assessment and management. Table 4.3 summarizes overall benefits and challenges associated with the LTFU telemedicine model for HCT survivors.
Table 4.3 Benefits and challenges of the telemedicine LTFU model for HCT survivors
| Benefits | Challenges |
|---|---|
| Convenient for survivors who cannot or prefer not to travel to the TC for follow‐up; reduced wait times Cost‐effective Increased communication and coordination with local provider Fill in gaps of care resulting from provider shortages May be useful in underdeveloped countries Does not require large staff or personnel May decrease morbidity and mortality late after HCT; reduce ED visits and hospitalizations |
Both TC and local provider require proper equipment and technical support Telemedicine reimbursement not uniform across the country Unable to perform PE by the TP; requires training in virtual PE Careful organization of telemedicine clinics to meet the demands of a high‐volume service Training required for telemedicine and potential technology
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