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      Palliative care needs of patients living with end-stage kidney disease not treated with renal replacement therapy: An exploratory qualitative study from Blantyre, Malawi

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          Abstract

          Background

          The burden of end-stage kidney disease (ESKD) in sub-Saharan Africa is increasing rapidly but the palliative care needs of patients living with ESKD are not well described. Resource limitations at both health system and patient level act as major barriers to patients receiving renal replacement therapy (RRT) in the form of dialysis. We undertook an exploratory qualitative study to describe the palliative care needs of patients with ESKD who were not receiving RRT, at a government teaching hospital in Blantyre, Malawi.

          Methods

          A qualitative, explorative and descriptive design was used. Study participants were adults aged > 18 years with an estimated glomerular filtration rate < 15 ml/min on two separate occasions, three months apart, who either chose not to have or were not deemed suitable for RRT. Data were collected by means of semi-structured interviews.

          Results

          In October and November 2013, interviews were conducted with 10 adults (7 women with median age of 60.5 years). All were hypertensive and four were on treatment for HIV. Four themes emerged from the data: changes in functional status because of physical symptoms, financial challenges impacting hospital care, loss of role within the family and the importance of spiritual and cultural beliefs.

          Conclusion

          This study reports on four thematic areas which warrant further quantitative and qualitative studies both in Malawi and other low-resource settings, where a growing number of patients with ESKD unable to access RRT will require palliative care in the coming years.

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          Most cited references 19

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          Symptoms in advanced renal disease: a cross-sectional survey of symptom prevalence in stage 5 chronic kidney disease managed without dialysis.

          Numbers of patients with stage 5 chronic kidney disease (CKD) managed conservatively (without dialysis) are increasing steadily but prevalence and severity of symptoms in this population are not yet known. To describe symptom prevalence, symptom severity, and total symptom burden in patients with stage 5 CKD managed conservatively. A cross-sectional survey of patients with stage 5 CKD managed conservatively, in three U.K. renal units. Symptoms were assessed using the patient-completed Memorial Symptom Assessment Scale Short Form (MSAS-SF), with additional renal symptoms. Sixty-six patients were recruited (response rate, 62%), with mean age 82 years (standard deviation [SD] +/- 6.6), and mean estimated glomerular filtration rate 11.2 mL/min (SD +/- 2.8). Symptoms reported by more than one third or 33% of patients were (95% confidence intervals shown in parentheses): lack of energy, 76% (66%-84%); pruritus, 74% (65%-82%); drowsiness, 65% (54%-74%); dyspnea, 61% (50%-70%); edema, 58% (47%-66%); pain, 53% (42%-63%); dry mouth, 50% (39%-60%); muscle cramps, 50% (39%-60%); restless legs, 48% (38%-58%); lack of appetite, 47% (37%-58%); poor concentration, 44% (34%-54%); dry skin, 42% (32%-53%); sleep disturbance, 41% (32%-51%); and constipation, 35% (26%-45%). Mean number of symptoms reported on MSAS-SF was 11.58 (SD +/- 5.2), with an additional 2.77 (SD +/- 1.7) renal symptoms. Symptoms were also most severe in the more prevalent symptoms. Pain was an exception, with disproportionately greater severity (32% of all patients reported moderate/severe pain). This study demonstrates that patients with stage 5 CKD have considerable symptom control needs, similar to advanced cancer populations, but with different patterns of individual symptoms and severity, particularly pain. Implications for palliative care, hospice, and nephrology services in planning and providing care are discussed.
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            Quality care at the end of life in Africa.

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              End-stage renal disease in sub-Saharan Africa

               S. NAICKER,  S Naicker (2009)
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                Author and article information

                Journal
                Afr J Prim Health Care Fam Med
                Afr J Prim Health Care Fam Med
                PHCFM
                African Journal of Primary Health Care & Family Medicine
                AOSIS
                2071-2928
                2071-2936
                29 May 2017
                2017
                : 9
                : 1
                Affiliations
                [1 ]College of Medicine, Blantyre, Malawi
                [2 ]Ministry of Health, Blantyre, Malawi
                [3 ]Barts Health NHS Trust, London, United Kingdom
                Author notes
                Corresponding author: Maya Bates, mjanebates@ 123456gmail.com
                Article
                PHCFM-9-1376
                10.4102/phcfm.v9i1.1376
                5458575
                28582995
                © 2017. The Authors

                Licensee: AOSIS. This work is licensed under the Creative Commons Attribution License.

                Categories
                Original Research

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