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 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.

Prevalence and Severity of Lower Gastrointestinal Symptoms amongst Non-Dialysis Chronic Kidney Disease Patients: A Systematic Review and Meta-Analysis

“…This will include broader search methods to include areas not fully covered in this review and will take advantage of emerging methods for meta-analyses. We anticipate the results of a study currently occurring in Uganda [ 90 ], and also one in Australia [ 91 ], and a full-text article detailing data for non-dialysis CKD patients from a study conducted in Malaysia [ 92 ]. Moreover, we will update the meta-analytical methods to provide results that are as reliable as possible.…”

The Suffering of Advanced Chronic Renal Patients and Their Relationship with Symptoms in Loja, Ecuador

“…Whereas palliative care is indeed integrated in developed countries, there are still a few developing countries that have implemented it [ 32 ]. For this, it is necessary to perform a symptomatic control that allows for the early development of a palliative care plan [ 2 , 33 ]. Chronic kidney disease has been associated with a low quality of life [ 34 , 35 ]; however, it has been proven that palliative care can enhance it [ 36 , 37 ].…”

“…It is known that this treatment is not curative, which is why patients undergo a constant adaptation process to the frequent changes in their health status; therefore, the need to establish palliative care can be a reality. However, there are no well-established palliative care pathways [ 2 ].…”

“…An alternative is comprehensive care centered on the patients’ and their needs, and not on the life prognosis. The choice should be joint work between the specialist in kidney disease and the palliative care team, that is to say, early and comprehensive palliative care [ 2 , 10 , 11 ].…”

Global Dialysis Perspective: Uganda

“…Many are quite debilitated by the time they present for dialysis because of lack of access to basic preventive CKD care, and even when on chronic renal replacement therapy, they are plagued by ongoing uremic symptoms and anemia. Though the Ugandan population with CKD is quite young and would be expected to be more resilient, the possibility of long life on dialysis and the ability to get kidney transplant is overshadowed by the poor ill health and poor quality of life even among the few that make it to hospital for dialysis 13 .…”