Health-related quality of life, palliative care needs and 12-month survival among patients with end stage renal disease in Uganda: protocol for a mixed methods longitudinal study
Abstract Background The prevalence of chronic kidney disease is on the rise globally and in sub-Saharan Africa. Due to its “silent” nature, many patients often present with advanced disease. At this point options for care are often limited to renal replacement therapies such as hemodialysis and kidn...
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| Format: | Article |
| Language: | English |
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BMC
2020-12-01
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| Series: | BMC Nephrology |
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| Online Access: | https://doi.org/10.1186/s12882-020-02197-7 |
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| author | Peace Bagasha Mhoira Leng Elly Katabira Mila Petrova |
| author_facet | Peace Bagasha Mhoira Leng Elly Katabira Mila Petrova |
| author_sort | Peace Bagasha |
| collection | DOAJ |
| description | Abstract Background The prevalence of chronic kidney disease is on the rise globally and in sub-Saharan Africa. Due to its “silent” nature, many patients often present with advanced disease. At this point options for care are often limited to renal replacement therapies such as hemodialysis and kidney transplantation. In resource limited settings, these options are associated with catastrophic expenditures and increased household poverty levels. Early palliative care interventions, if shown to ensure comparable quality of life (QoL), can significantly mitigate this by focusing care on comfort, symptom control and QoL rather than primarily on prolonging survival. Methods A mixed methods longitudinal study, recruiting patients with End Stage Renal Disease (ESRD) on hemodialysis or conservative management and following them up over 12 months. The study aims are to: 1) measure and compare the health-related quality of life (HRQoL) scores of patients with ESRD receiving hemodialysis with those receiving conservative management, 2) measure and compare the palliative care needs and outcomes of patients in the two groups, 3) explore the impact of treatment modality and demographic, socio-economic and financial factors on QoL and palliative care needs and outcomes, 4) review patient survival over 12 months and 5) explore the patients’ lived experiences. The Kidney Disease Quality Of Life Short Form version 1.3 (KDQOL-SF) will be used to measure HRQoL; the African Palliative Care Association Palliative care Outcome Score (APCA POS) and the Palliative care Outcome Score for renal symptoms (POS-S Renal) will be used to assess palliative care needs and outcomes; and semi-structured in-depth interviews to explore the patients’ experiences of living with ESRD. Data collection will be carried out at 0, 3, 6, 9 and 12 months. Discussion To the best of our knowledge, no similar study has been conducted in sub-Saharan Africa. This will be an important step towards raising awareness of patients’ need and preferences and the strengths and limitations of available health care services for ESRD in resource limited settings. |
| first_indexed | 2024-12-14T15:02:59Z |
| format | Article |
| id | doaj.art-8965460a915048269773746af0231b59 |
| institution | Directory Open Access Journal |
| issn | 1471-2369 |
| language | English |
| last_indexed | 2024-12-14T15:02:59Z |
| publishDate | 2020-12-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Nephrology |
| spelling | doaj.art-8965460a915048269773746af0231b592022-12-21T22:56:46ZengBMCBMC Nephrology1471-23692020-12-0121111310.1186/s12882-020-02197-7Health-related quality of life, palliative care needs and 12-month survival among patients with end stage renal disease in Uganda: protocol for a mixed methods longitudinal studyPeace Bagasha0Mhoira Leng1Elly Katabira2Mila Petrova3Department of Internal medicine, Makerere University College of Health Sciences, School of MedicineDepartment of Internal medicine, Makerere University College of Health Sciences, School of MedicineDepartment of Internal medicine, Makerere University College of Health Sciences, School of MedicineCambridge Palliative and End of Life Care Research Group, Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge; Cambridge Institute of Public Health, Forvie SiteAbstract Background The prevalence of chronic kidney disease is on the rise globally and in sub-Saharan Africa. Due to its “silent” nature, many patients often present with advanced disease. At this point options for care are often limited to renal replacement therapies such as hemodialysis and kidney transplantation. In resource limited settings, these options are associated with catastrophic expenditures and increased household poverty levels. Early palliative care interventions, if shown to ensure comparable quality of life (QoL), can significantly mitigate this by focusing care on comfort, symptom control and QoL rather than primarily on prolonging survival. Methods A mixed methods longitudinal study, recruiting patients with End Stage Renal Disease (ESRD) on hemodialysis or conservative management and following them up over 12 months. The study aims are to: 1) measure and compare the health-related quality of life (HRQoL) scores of patients with ESRD receiving hemodialysis with those receiving conservative management, 2) measure and compare the palliative care needs and outcomes of patients in the two groups, 3) explore the impact of treatment modality and demographic, socio-economic and financial factors on QoL and palliative care needs and outcomes, 4) review patient survival over 12 months and 5) explore the patients’ lived experiences. The Kidney Disease Quality Of Life Short Form version 1.3 (KDQOL-SF) will be used to measure HRQoL; the African Palliative Care Association Palliative care Outcome Score (APCA POS) and the Palliative care Outcome Score for renal symptoms (POS-S Renal) will be used to assess palliative care needs and outcomes; and semi-structured in-depth interviews to explore the patients’ experiences of living with ESRD. Data collection will be carried out at 0, 3, 6, 9 and 12 months. Discussion To the best of our knowledge, no similar study has been conducted in sub-Saharan Africa. This will be an important step towards raising awareness of patients’ need and preferences and the strengths and limitations of available health care services for ESRD in resource limited settings.https://doi.org/10.1186/s12882-020-02197-7Quality of life [MeSH]Kidney failureChronic [MeSH]Palliative care [MeSH] renal Dialysis [MeSH]Developing countries [MeSH]Mixed methods |
| spellingShingle | Peace Bagasha Mhoira Leng Elly Katabira Mila Petrova Health-related quality of life, palliative care needs and 12-month survival among patients with end stage renal disease in Uganda: protocol for a mixed methods longitudinal study BMC Nephrology Quality of life [MeSH] Kidney failure Chronic [MeSH] Palliative care [MeSH] renal Dialysis [MeSH] Developing countries [MeSH] Mixed methods |
| title | Health-related quality of life, palliative care needs and 12-month survival among patients with end stage renal disease in Uganda: protocol for a mixed methods longitudinal study |
| title_full | Health-related quality of life, palliative care needs and 12-month survival among patients with end stage renal disease in Uganda: protocol for a mixed methods longitudinal study |
| title_fullStr | Health-related quality of life, palliative care needs and 12-month survival among patients with end stage renal disease in Uganda: protocol for a mixed methods longitudinal study |
| title_full_unstemmed | Health-related quality of life, palliative care needs and 12-month survival among patients with end stage renal disease in Uganda: protocol for a mixed methods longitudinal study |
| title_short | Health-related quality of life, palliative care needs and 12-month survival among patients with end stage renal disease in Uganda: protocol for a mixed methods longitudinal study |
| title_sort | health related quality of life palliative care needs and 12 month survival among patients with end stage renal disease in uganda protocol for a mixed methods longitudinal study |
| topic | Quality of life [MeSH] Kidney failure Chronic [MeSH] Palliative care [MeSH] renal Dialysis [MeSH] Developing countries [MeSH] Mixed methods |
| url | https://doi.org/10.1186/s12882-020-02197-7 |
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