Quality of life in patients on chronic dialysis in South Africa: a comparative mixed methods study

Tannor et al. BMC Nephrology (2017) 18:4 DOI 10.1186/s12882-016-0425-1 RESEARCH ARTICLE Open Access Quality of life in patients on chronic dialysis in South Africa: a comparative mixed methods study Elliot K. Tannor1, Elize Archer2, Kenneth Kapembwa1, Susan C. van Schalkwyk2 and M. Razeen Davids1* Abstract Background: The increasing prevalence of treated end-stage renal disease and low transplant rates in Africa leads to longer durations on dialysis. Dialysis should not only be aimed at prolonging lives but also improve quality of life (QOL). Using mixed methods, we investigated the QOL of patients on chronic haemodialysis (HD) and peritoneal dialysis (PD). Methods: We conducted a cross-sectional study at Tygerberg Hospital in Cape Town, South Africa. All the PD patients were being treated with continuous ambulatory peritoneal dialysis. The KDQOL-SF 1.3 questionnaire was used for the quantitative phase of the study. Thereafter, focus-group interviews were conducted by an experienced facilitator in groups of HD and PD patients. Electronic recordings were transcribed verbatim and analysed manually to identify emerging themes. Results: A total of 106 patients completed questionnaires and 36 of them participated in the focus group interviews. There was no difference between PD and HD patients in the overall KDQOL-SF scores. PD patients scored lower with regard to symptoms (P = 0.005), energy/fatigue (P = 0.025) and sleep (P = 0.023) but scored higher for work status (P = 0.005) and dialysis staff encouragement (P = 0.019) than those on HD. Symptoms and complications were verbalised more in the PD patients, with fear of peritonitis keeping some housebound. PD patients were more limited by their treatment modality which impacted on body image, sexual function and social interaction but there were less dietary and occupational limitations. Patients on each modality acknowledged the support received from family and dialysis staff but highlighted the lack of support from government. PD patients had little opportunity for interaction with one another and therefore enjoyed less support from fellow patients. Conclusions: PD patients experienced a heavier symptom burden and greater limitations related to their dialysis modality, especially with regards to social functioning. The mixed-methods approach helped to identify several issues affecting quality of life which are amenable to intervention. Background Chronic kidney disease (CKD) is an important public health problem which is increasing in terms of incidence and prevalence. The worldwide prevalence is 10–13% [1, 2] and similar estimates are reported for Africa (13.9%) [3]. End-stage renal disease (ESRD) is a serious complication of CKD and requires renal replacement therapy (RRT) in the form of haemodialysis * Correspondence: 1 Division of Nephrology, Department of Medicine, Stellenbosch University and Tygerberg Hospital, Cape Town, South Africa Full list of author information is available at the end of the article (HD), peritoneal dialysis (PD) or transplantation as the mainstay of treatment. Of the more than 1.8 million patients worldwide on dialysis, less than 5% are in Africa where access to RRT is dependent on very limited government support [4, 5]. The dialysis rates across Africa are less than 20 per million population (pmp) as compared to a global prevalence of 223 pmp. In Africa, 97% of dialysis patients are on HD [6]. South Africa has a higher proportion of patients on PD. According to recent registry data 71.8% of patients receiving RRT are on HD and 13.5% on PD [7]. © The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Tannor et al. BMC Nephrology (2017) 18:4 RRT should not only prolong life but also sustain quality of life [5, 8]. Transplantation results in improved survival, lower costs and better quality of life [9–14] but transplant rates in Africa are very low, averaging only 4 pmp [15] and decreasing. In South Africa, the proportion of RRT patients with a functioning transplant has decreased from 55.5% in 1994 to 14.7% in 2014 [7, 16]. The low transplant rates and increasing numbers of patients requiring RRT result in longer durations on dialysis, emphasising the importance of assessing and optimizing the quality of life of our patients on chronic dialysis. Health-related quality of life (HRQOL) has become increasingly important as an outcome measure of RRT. The traditional focus on the improvement of survival has recently shifted to include a much stronger emphasis on quality of life [8]. HRQOL represents the impact of the disease or its treatment on the subjective feelings of patients about their physical, mental, spiritual, emotional, social and functional wellbeing [17]. HRQOL deteriorates as kidney function worsens [18] and is an independent risk factor for mortality in dialysis patients [19]. The Kidney Disease Quality of Life (KDQOL) questionnaire [20] has been validated for use as a diseasespecific measure of quality of life. It combines the SF-36 instrument with kidney disease specific items [21, 22]. Quality of life among dialysis patients has been shown to be lower as compared to pre-dialysis CKD patients [23], the general population [24] and other chronic diseases like congestive heart failure, diabetes, depression and even cancer [25]. In the large Dialysis Outcome and Practice Pattern study (DOPPS) in the United States [26] poor scores in the physical component of the HRQOL were associated with increased mortality and increased risk of future hospitalisation. The quality of life of patients on PD has been reported to be better than for those on HD in some studies [27–30] but others, including a systematic review [14, 28, 31, 32], have reported no difference between the two treatment modalities. PD patients tended to have lower scores in the role-physical and bodily pain domains whereas HD patients had lower scores in the emotional component [33]. Low quality of life at the initiation of RRT is associated with increased hospitalisation and higher mortality, emphasizing the need for early interventions [34, 35]. Very few studies have been conducted comparing the quality of life of HD and PD patients in South Africa [28, 36, 37]. A study in the Western Cape, South Africa, reported low HRQOL in both dialysis modalities with no difference between HD and PD [28]. Another South African study [37] which included dialysis patients from both the pr (...truncated)