activity continues to increase in developing countries which constitute majority of the low‐ and middle‐income countries [39]. The recent uptrend in donor availability for haploidentical HSCT has been instrumental in increasing numbers of allogeneic HSCT in these areas [40]. The trends in allogeneic HSCT increase are found in both Asia and Africa, though there is wide variation in the HSCT practices among countries. Allogeneic and autologous HSCT survivors face challenges in long‐term follow‐up and survivorship care that are unique in resource‐limited countries. Herein, we describe the essential need of LTFU clinic for recipients of HSCT in resource‐limited countries and also touch upon current challenges and potential solutions.
Essential need for a LTFU clinic in resource limited countries
As described above, transplant activity in developing countries has increased tremendously in this millennium, but data on the long‐term complications are scarce. There are certain differences in the HSCT practices in developing countries compared to developed countries (from Europe and North America). Specifically, indications for transplantation in the developing countries comprise of nonmalignant conditions in about half of the cases, whereas data from the US indicates that more than two‐thirds of the HSCT are done for cancers [41]. For instance, the HSCT activity for hemoglobinopathies in India, China, Pakistan and Iran has increased by six‐fold in a decade [42]. The conditioning regimens and GVHD prophylaxis used for nonmalignant conditions is very different from that for malignant conditions, thus changing the natural history of late complications in HSCT survivors [43]. The long‐term survival in HSCT recipients with malignant conditions is generally less compared to nonmalignant conditions, primarily due to increase in relapse of the cancer. Moreover, the risk of developing GVHD varies, not only due to prolonged immunosuppression used in patients with non‐malignant diseases, but also due to increased use of serotherapy for GVHD prophylaxis in the developing countries compared to the US. Due to the above‐mentioned reasons, the risks of having early mortality post‐allogeneic HSCT due to relapse or GVHD may be higher as a whole in the developed countries, however, there is no reason to believe that the risks of having late effects would be different in the developing countries compared to developed countries.
Another aspect which dictates an increased emphasis for need of formal survivorship clinics is the age spectrum of HSCT recipients. In developing countries, the population pyramid differs compared to Europe and the US, as the majority is comprised of children and the ratio of pediatric to adult HSCT is higher in the developing countries. Since the very late effects e.g. (cardiac, subsequent cancers etc.) may occur after 10 years post‐HSCT, taking care of the patients who received HSCT during their childhood is of utmost importance for surveillance and prevention of the late complications [22].
Unique challenges for survivorship in the resource limited countries
The risk of certain late conditions may be relatively higher in developing countries, which needs special consideration compared to developed countries. This includes a higher risk of certain infections e.g. tuberculosis, malaria, hepatitis B and C, and invasive fungal infections. Thus, late‐effect monitoring should ideally include surveillance for endemic infections. Another neglected area of survivorship care is the risk of dying from road traffic accidents. Unfortunately, road traffic injuries are the leading cause of death for children and young adults aged 5–29 years and 93% of the world's fatalities on the roads occur in low‐ and middle‐income countries [44]. Thus, education on risk‐reduction strategies for accidents can be one of the aims of survivorship education. Another challenge peculiar to developing countries is the near complete absence of effective primary care setting which poses additional burden on the LTFU clinic team for screening for common preventable conditions in HSCT survivors (e.g. routine mammograms and bone densitometry scans). Potential solutions to this issue would include computerized checklists for the entire preventative screening panels, and also provision, not only of these preventive services (e.g. mammogram machines), but also of social workers who can try to potentially get the preventive screening covered.
The affordability issue does impact the long‐term care significantly and thus mechanisms should be in place to alleviate this issue else the effectiveness of a LTFU clinic will be low. Though most developing countries have a universal healthcare provision regulation, the quality of healthcare provision at governmental institutions may not be appropriate in some countries. Additionally, buying private healthcare insurance is beyond the reach of majority of the population in the developing countries, thereby, before one establishes an LTFU clinic, the priorities for screening of most prevalent late effects should be clearly delineated since many patients will still be paying out of pocket for all healthcare visits, tests and medications.
Another challenge for HSCT survivors stems from medical tourism. Many patients travel to Europe or the US for receipt of HSCT. When they come back, they are prone to face many difficulties in longitudinal care since, quite often, it is hard to travel back to the original transplant center for follow‐up visits. Thus, an ideal LTFU clinic should be prepared to deal with HSCT survivors returning from foreign countries and have effective mechanisms of communication with the primary transplant teams in the foreign countries.
Thus, to summarize, there are many unique concerns pertaining to long‐term care in the developing countries but potential solutions exist. There is very little published data on long‐term outcomes, and these data are essential to prioritize the essentials of a fully functional LTFU clinic. There remains an essential and unmet need for establishment of such LTFU clinics in these countries as the transplant activity continues to increase.
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