The burden of kidney disease worldwide is substantial, growing and poses significant challenges for governments responding to the health of their populations, particularly in low and middle income countries (LMIC).(1) In middle and eastern Africa, access to renal replacement therapy (RRT) is estimated at 1–3% (7), and the outcome of dialysis patients is poor, and marked by premature mortality in the first year after dialysis initiation.(8)(9) A high mortality rate following initiation of dialysis may be related to late presentation to a nephrologist or kidney care center, affordability, lack of access to treatment for metabolic complications and poor education.(9)
Rwanda is one of the smallest central African countries with an approximately 13 million population and only about 17.6% living in urban areas.(10) The gross domestic product per capita is approximately 820 US dollars.(11) Over 92% of Rwandans access health care using community based health insurance (CBHI) linked to four socioeconomic life standing of Rwandan households, also named “Ubudehe categories”.(12)(13) Patients in category 1, are exempt from premiums; category 2,3 and 4 pay a fixed co-pay for health center and hospital visits.(14) Approximately 6% of the total population have civil servant health insurance and military medical insurance (MMI).(12)(13)(14) In addition, there are private health insurance schemes available for purchase, and funds that cover medical care for vulnerable groups, such as genocide victim funds (GVF).
Based on estimates from World Health Organization, noncommunicable diseases (NCDs) including renal diseases were predominant cause of mortality in Rwanda, accounting for 58% of the mortality burden since 2016.(15) There are insufficient data on the prevalence of kidney diseases in Rwanda but kidney failure was among the top 10 leading cause of death from non-communicable diseases and injuries in Rwanda in 2016.(15)(16) Hemodialysis is the predominant renal replacement therapy available in Rwanda, very few patients are currently on peritoneal dialysis and renal transplantation is not performed in the country. Patients access transplantation through the Ministry of Health funded transplantation performed out of country or through out-of-pocket payments abroad.(16)
Access to dialysis is limited by its cost, a shortage of specialized medical staff with training in nephrology and renal replacement therapy and geographic distribution of in-centre hemodialysis units.(16)(17) The annual cost of hemodialysis per patient in Rwanda ranges between Int$13,260 and Int$20,592. CBHI covers hemodialysis for only six weeks for patients with acute kidney injury (AKI) and does not cover costs associated with chronic RRT for CKD.(18) Maintenance dialysis is covered by employer and private health insurances or special funds (eg GVF) at 85 to 100% of HD cost, thus, for the majority of Rwandans, there are substantial out of pocket costs and financial hardship associated with hemodialysis.(16)
Same as other specialized care centered in urban areas, dialysis centers are located in cities, particularly Kigali City; however, the majority of Rwandans live in rural areas.(10). Currently, in-centre maintenance hemodialysis is available at three public, university affiliated tertiary referral centers, Kigali University Teaching Hospital (CHUK), Rwanda Military hospital (RMH) located in the capital city, Kigali and Butare University Teaching Hospital (CHUB) built in the south province, and at King Faisal Hospital (KFH), which is a public-private quaternary hospital also located in Kigali. Community based hemodialysis is provided by African Health Network, a private company with three unities located at Kimihurura (Kigali), Rubavu and Rusizi (Western province) with relatively similar cost, insurance coverage and out of pocket expenses as in-centre hemodialysis.(16)
Between 2014 and 2017, approximately 47% of hemodialysis patients died within four months of initiation of dialysis at CHUK.(18)(19) There are dialysis dependent and non-dialysis dependent factors that impact patient experience and outcomes beyond dialysis adequacy including socioeconomic status, age, comorbidities, vascular access, dialysis session duration and adequacy, dialysis session frequency, and symptoms associated with dialysis.(20)(21)(22)(23)(24)(25)(26)
To promote high-quality services in renal dialysis facilities, routine measurement of patient reported outcomes measures such health related quality of life (HRQOL) in dialysis patients using the KDQOL-36™ is now mandatory in high income countries. For example, In the United States, these measurements are typically done four months after initiation of dialysis and at least every year.(27)(28) The Kidney Disease Quality of Life (KDQOL) instrument designed by RAND Health Care and validated by the National Kidney Foundation for patients with kidney diseases may provide a reasonable metric of quality of life of adult patients living with ESKD in resource limited settings.(29)(30)(31) In Africa, there are few studies that assessed the QOL of patients with CKD, less again of dialysis patients. Masina et al. (32) in Malawi and Kamau et al. (33) in Kenya reported reduced HRQOL of dialysis patients.
In this study, we aim to determine the health related quality of life of patients with ESKD undergoing in-centre maintenance hemodialysis in Rwanda, describe demographic and clinical features of those patients and the factors associated with their quality of life. This is the first study in Rwanda and will provide baseline data that can help inform improvement strategies for ESKD patients on hemodialysis in Rwanda and other settings with similar contexts.