Hrev_master [Healthcare in Low-resource Settings 2019; 7:7930] [page 1] Breaking the bottle neck to enhance pediatrics renal transplantation at Soba university hospital: Role of a non-governmental organization Ihab B. Abdalrahman,1 Shaima N. Elgenaid,2 Rashid Ellidir,3 Asma Nizar Mohammed Osman Abdallah,4 Safa Ahmed Hassan Hamid,4 Shahd H. A. Elwidaa,2 El-Tigani M. A. Ali5 1Faculty of Medicine, University of Khartoum, Soba University Hospital, Khartoum; 2Department of Internal Medicine, Faculty of Medicine, University of Khartoum, Khartoum; 3Department of Pediatric Nephrology, Soba University Hospital, Elnelien University; 4Soba Center for Audit and Research, Faculty of Medicine, University of Khartoum, Khartoum; 5Pediatric Nephrology Unit, Soba University Hospital, Khartoum, Sudan Abstract High cost and limited resources of pedi- atrics renal transplant in low-resource coun- tries limits the number of transplants. However, the collaboration between govern- ment and community sector provided high quality care for these patients. Here we high- light the impact of a non-governmental organization in facilitating pediatrics renal transplant. Data was collected from files of all pediatric patients withend stage renal dis- ease who received renal transplant between January 2010 and December 2017 at Soba University Hospital (77 patients). The 8-year period was divided into 16 intervals of 6 months each. The number of patients who received renal transplant ranged from 1 to 12 patients in each interval. There was a rise in 2017 when 21 (28.7%) patients received kid- ney transplant. In the last 6 months in 2017 there was a significant reduction in duration of hospital stay compared to the rest of the period; it dropped from 16.36 to 9.92 days (P=0.003). Partnership between governmen- tal and non-governmental sectors is a good strategy in low resource area to bridge some of the gaps of healthcare delivery system. Introduction The prevalence of renal replacement therapy in children under 19 years of age is 18-100 per million of age related popula- tion.1 The first successful renal transplant was done in 1945 and since then it has been considered the treatment of choice for patients with end stage renal disease.2 The long-term cost of renal transplant is less than that of the dialysis, particularly when the duration of the therapy is more than 16 months. The estimated cost of conventional dialysis at 40 months is more than 87,000 USD in compare to only 48,000 USD for transplant in 50 months.3 The cost of renal transplant in Sudan was equivalent to 10 months of hemodialysis. In developing countries, the prevalence of children kidney transplantation is less than 5 patients per million, due to low resources and minimal support by the gov- ernments. The high cost and far distance of specialized center contributes to limited number of transplants. For the same previ- ous reasons, the mortality rate due to end stage renal disease (ESRD)in low-resource area is high. Even those who received trans- plant cannot maintain their graft due to high cost of post-transplant medication, and in case of rejection only 2% of patients could pay for second graft but no more.4,5 Involvement of non-governmental sector in supporting renal transplantation to a level of cost-free service, led to an increase in the number of patients undergoing transplanta- tion and made it more socially acceptable.4 In Pakistan, the high cost of renal replace- ment therapy deprived more than 90% of ESRD patients from undergoing treatment,6 but the collaboration between government and community sector led to availability of free and high quality care for those patients.7 In health sector, Non-Governmental organizations (NGOs) target specific health problem and deliver comprehensive servic- es to manage it. A NGO delivers health services to vulnerable patients who cannot handle the cost of health care.8 The efficien- cy of NGOs in bridging service-delivery gaps, rely on knowledge, proficiency, abili- ty of these institute to tackle and focus on health needs in the community that not cov- ered by the government.9 In north Darfur state, Sudan, international NGOs provide about 70% of health services through train- ing of healthcare staff, funding and estab- lishment of new health centers.10 Sadaqaat Charity Organization (SCO) is non-profit, non-political, charity organiza- tion. It was established as an initiative in 2002 by Sudanese graduates doing their postgraduate training in USA. In 2012 it was registered officially in the Humanitarian Affairs Commission in Sudan. The vision of the organization is to promote the efficiency of social services in Sudan. SCO works in 4 domains: i) provi- sion of clean water in hardship areas, ii) food service for the needy, iii) improving general education and iv) improving health service. In health, SCO works in improving the health delivery environment by rehabil- itating or establishing facilities and provi- sion of needed equipment and supplies; capacity building by training health workers in both knowledge and skills; awareness programs like voluntary blood donation and screening for breast cancer among women. In children with renal failure, SCO provides free dialysis catheters and other consum- ables and some of the long-term medica- tions. Free transportation to treatment facil- ities is also provided to needy families. Some of Sadagaats’ volunteers tutor these children during their dialysis session so as not to miss academic development. Soba University Hospital is the only pediatrics renal transplantation center in Sudan. The first pediatrics renal transplant was done in May 2010. The facility has only 2 beds of high dependency unit (HDU) dedicated for pediatrics renal transplant. Many of the transplant recipients were com- ing from rural areas and they had no place to stay in the city. This led to prolonged hos- pital stay and blocking the hospital beds. Healthcare in Low-resource Settings 2019; volume 7:7930 Correspondence: Shaima N. Elgenaid, Department of Internal Medicine, Faculty of Medicine, University of Khartoum, Khartoum, Sudan. E-mail: Shema2690@gmail.com Key words: Non-governmental organization; Pediatrics; Renal transplantation; Low- resource; Sadagaat Charity Organization. Contributions: IBA designed the study, inter- preted data, managed literature search and wrote the first draft of the manuscript; SNE performed data analysis, interpreted data, managed literature search and wrote first draft of the manuscript; RE performed data collec- tion and wrote first draft of the manuscript; ANMOA, SAHH, SHAE performed data analysis and interpretation; ETMAA and all other authors read and approved the final ver- sion to be published. Received for publication: 10 November 2018. Revision received: 14 July 2019. Accepted for publication: 25 September 2019. This work is licensed under a Creative Commons Attribution 4.0 License (by-nc 4.0). ©Copyright: the Author(s), 2019 Licensee PAGEPress, Italy Healthcare in Low-resource Settings 2019; 7:7930 doi:10.4081/hls.2019.7930 Non -co mmerc ial us e o nly [page 2] [Healthcare in Low-resource Settings 2019; 7:7930] Once hospital stay was protracted, Sadagaat was requested by renal transplant team to help the families by renting apartment close to the hospitals. This used to occur sporadi- cally. After a brain storming session between transplant team and SCO leaders, Sadagaat leadership were convinced to pro- vide 4 apartments on continuous basis to facilitate early discharge of stable patient. This was thought to improve accessibility of the HDU beds and probably shorten the waiting list. To ensure safety and coordina- tion of medical care, Sadagaat hired a regis- tered nurse from the transplant team as a part timer to supervise these children and facilitate early and easy transfer to the hos- pital whenever it was needed. In this report we are exploring the impact of these simple interventions. Materials and Methods This is retrospective study was conduct- ed in January 2018 to determine the role of NGO in improving health care delivery in low resource area. Our inclusion criteria were all pediatric patients with ESRD who received renal transplant at Soba University hospital (Khartoum) and post-transplant care between January 2010 and December 2017. We selected all patients because of limited number of patients. Data was col- lected from patients’ files in the hospital, which included demographic data, duration of dialysis, duration till discharge and some of post-transplant complications. Data was analyzed using Excel software and SPSS statistics 22. We divided the mentioned period (from January 2010 to December 2017) into intervals, each of 6 months. The number of patients who underwent renal transplant surgery was determined in each interval along with mean duration of dialy- sis, mean days till discharge and number of patients who developed post-transplant complications in each interval. We did a comparison using independent t test between these variables in (January 2010- June 2017) and (July 2017-December 2017). P-value of 0.05 was considered sta- tistically significant. The proposal of this study was approved by Soba Center for Audit and Research. Consent was waived. Results Data was collected from 77 pediatric patients with ESRD who received renal transplant at Soba hospital in Khartoum from January 2010 to December 2017. Females and males were 43 (56%) and 34 (44%) respectively. Their age ranged from 8 to 18 years with mean age for male and female of 13.59 year and 13.81 year respec- tively. The graft for all patients came from related living donor, a significant propor- tion of 45.9% received allograft from their mothers while the rest received kidney from their fathers, brothers and sisters. The 8 years period was divided into 16 intervals with 6 months in each. The number of patients in each interval is shown in Table 1. The number of patients who received renal transplant in each six-month interval between January 2010 and December 2016 ranged from 1 to 6 patients. There was a considerable rise in the number of patients in 2017 with 9 (12.3%) patients and 12 (16.1%) patients who received kidney trans- plant in the first and second half respective- ly. Moreover, the number of transplants in the entire 2017 (21(28.7%)) represents the highest rate of transplant in compare to the previous years. This coincided with the facilitation of early discharge to residential apartment, thus improving accessibility of the HDU beds and probably shortening the waiting list. This was associated with sig- nificant reduction in duration of hospital stay as it dropped from 16.36 to 9.92 days (P=0.003) as shown in Table 2. Discussion In developing countries, scarcity of resources is major determinant of service availability and sustainability. In this report we are reflecting on role of NGO in improv- ing health care delivery in low-resource area. SCO participated actively by provid- ing medication and supplies to improve health care for renal transplant patients since the invention of this service. In Sudan, out of all patients with end stage renal fail- ure, only 3.9% had received transplant while about two third received either chron- ic hemodialysis or had intermittent peri- toneal dialysis.11 Creation of supervised residential home in 2017 helped to increase the number of patients who had renal transplant by 75% compared to 2016. In Pakistan, the collabo- Article Table 1. Number of patients who received renal transplant in the period between January 2010 and December 2017, and post-transplant complications. Date Number of patients DVT Death Jan-Jun 2010 1 (1.4%) 0 0 Jul-Dec 2010 2 (2.7%) 0 0 Jan-Jun 2011 4 (5.5%) 0 0 Jul-Dec 2011 3 (4.1%) 0 0 Jan-Jun 2012 4 (5.5%) 0 0 Jul-Dec 2012 3 (4.1%) 0 0 Jan-Jun 2013 3 (4.1%) 2 0 Jul-Dec 2013 2 (2.7%) 0 0 Jan-Jun 2014 3 (4.1%) 0 2 Jul-Dec 2014 6 (8.2%) 0 0 Jan-Jun 2015 5 (6.8%) 0 0 Jul-Dec 2015 4 (5.5%) 0 0 Jan-Jun 2016 6 (8.2%) 0 0 Jul-Dec 2016 6 (8.2%) 0 0 Jan-Jun 2017 9 (12.3%) 0 0 Jul-Dec 2017 12 (16.4%) 1 0 Total 73 (100%) 3 2 DVT, deep vein thrombosis. Table 2. The difference between January 2010-June 2017 and July 2017-December 2017. Item Jan 2010-Jun 2017 Jul 2017-Dec 2017 P-value Mean duration of dialysis (month) 22.8 15.08 0.270 Mean days till discharge 16.36 9.92 0.003 Haemorrhage 6 (10.2%) 2 (16.7%) 0.72 Wound infection 6 (10.2%) 1 (8.3%) 0.92 DVT 2 (3.4%) 1 (8.3%) 0.837 Infections (viral, bacterial) 13 (21.7%) 0 (0%) 0.4 DVT, deep vein thrombosis. Non -co mmerc ial us e o nly [Healthcare in Low-resource Settings 2019; 7:7930] [page 3] ration between government and community sector led to availability of free and high quality care for renal patients.7 Similarly in study done in Pakistan by Rizvi et al., the cooperation between government and com- munity organizations in providing free dial- ysis and renal transplantation led to increase in the number of dialysis and transplant patients from 380 and 103 in 1999 to 1350 and 544 in 2009, respectively.12 It seems that NOGs interventions are effective in bridging some of gaps in developing coun- tries. The partnership between private and public sectors is needed for better health- care services delivery regarding renal trans- plantation.13 In this report, the transplant team faced bottle-necks repeatedly. This was related to blockage of post-transplant renal beds by patients who developed some complications or required longer observa- tion. Another factor was the inability to dis- charge some patients who has no accommo- dation in the city. Sadagaat’s intervention is not a new concept in health delivery. This represents implementation of other coun- tries experience in a local context. To make the idea acceptable and matching the local context SCO rented 4 apartments, each with 2 rooms, electricity, water and cleaning services. Each room was dedicated to one family (transplant recipient and one family member). This has increased the number of renal transplants in children without signif- icant complications and might also helped in reducing the risk of acquiring health care associated infection. Creation of home like environment might have had a positive psy- chological impact of the wellbeing of the patients and their families. Non-govern- mental organization support of renal trans- plant is a recognized measure that have potential impact on provision of renal replacement therapy for larger number of patients in need, along with other measures such as development of local transplant pro- gram and use of local manufactured drugs and dialysis.14 Utilization of nurses or health care aid to deliver professional home care is well known method in many countries.15 This helped to reduce the cost of escalating med- ical care in acute care facilities.16 This model of care is used sporadically in Sudan by some medical professional in collabora- tion with family members. SCO utilized this concept of supervised care in the residential home. This created the opportunity to rec- ognize the medical needs of the residents coupled with professional ability to access and coordinate immediate care at the hospi- tal. Having a professional from the trans- plant team was based on the assumption that having such a nurse will help to build rela- tion and generate trust between the nurse and the family. Interestingly early discharge from hospital with supervised home care was not associated with significant adverse outcomes. Having a nurse from the same facility might have partially addressed the concern regarding system design.17 These simple measures led to an improvement in the flow of transplantations and significant reduction in hospital stay from 16.36 to 9.92 days (P=0.003) when comparing the last six months in 2017 and the rest of the period. This almost matched the number of hospi- talization days in other countries.18 A study by Hushie revealed that Partnership between government and community organization can improve service delivery and insure equity to all people in the target- ed population.9 NGOs play an important role in health care support in developing country. Transplant links community organization in UK conducted 10 years project in low resource country in Africa regarding renal transplant in adult and pediatric through continuous visit, skill transfer and monitor- ing of transplantation unit. They found that all those monitored by the program have made significant improvement toward sus- tainability but it can only be achieved when continuous financial support is also avail- able.19 Most of such studies regarding the effect of NGO in renal transplantation were conducted in middle-low income countries. 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