A longitudinal cohort study of symptoms and other concerns among Nigerian people with stages 3-5 chronic kidney diseases: study protocol.

BACKGROUND: The burden of symptoms and other concerns in chronic kidney disease (CKD) is known to be high, adversely affecting the quality of life of the growing number of those with this condition in developing countries. In this paper, we describe the protocol of a longitudinal observational study among people living with CKD. The study is developed to assess the bio-psychosocial factors associated with palliative care symptoms and concerns, and pattern of health services usage among Nigerians with stages 3-5 CKD. The overall objective is to establish the evidence-base for advocacy and policy formulation, treatment guidelines, care and services, and future clinical trial studies. METHODS: This is a multi-center study to investigate the longitudinal course of symptoms and other concerns among patients with stages 3-5 CKD in Nigeria. Interviewer administered and self-report measures at baseline (T0) and 3-month (T1) address socio-demographic characteristics, clinical-illness related information, palliative care-related symptoms and other concerns, pattern of formal or informal service usage, and bio psychosocial measures including estimated glomerular filtration rate (eGFR), anxiety, depression, quality of life, functioning, social support and spiritual wellbeing. DISCUSSION: This study represents the first longitudinal investigation of palliative care symptoms and concerns among people with CKD in Nigeria. It includes early stages of CKD in compliance with best practices, and a comprehensive range of bio-psychosocial outcomes to understand how these factors are associated with symptoms. This study will provide evidence for how best to integrate palliative care into management of CKD to improve care and quality of life of people with CKD. The study team welcomes collaborations with both national and international researchers.

Perspective on Care at the End of Life at Hospice Africa Uganda.

BACKGROUND: Since its beginning in 1993, Hospice Africa Uganda (HAU) has become a leader in palliative care in Africa. Despite this, there remains a sparsity of research elucidating the priorities of patients in their care at the end of life. This study aimed to identify those priorities in three groups: patients with life-limiting illness, their caregivers, and their healthcare providers at HAU, and thus to identify differences in what these groups find important in the last month of life. METHODS: A Likert scale survey of 31 statements regarding end-of-life care was administered to 46 patients, 51 caregivers, and 25 healthcare providers at HAU in Kampala, Uganda and satellite locations. ANALYSIS: Variations in the responses of the groups were analyzed using the Kruskal-Wallis test of variance. RESULTS: Twelve of 31 items were significantly different, and frequency data were examined. Differences were found in categories of symptom management, future planning, and in preferred place of death. Of anxiety, pain, and shortness of breath (SOB), only control of SOB was widely agreed on as important by patients, although providers unanimously wanted to control symptoms. Many subjects in all groups found that funeral arrangements should be deferred. Most patients and caregivers felt as if dying in the hospital was preferable, whereas providers felt that home care was preferable. CONCLUSION: This study tells us that patients, caregivers, and healthcare providers often have different ideas concerning what is important in end-of-life care, differences that are unique to this population.