Table 1.

Data collection tools

• Kidney Disease Quality Of Life-Short Form (KDQOL-SF) Version 1.3	The KDQOL-SF questionnaire (version 1.3) is an internationally validated instrument for assessing the HRQoL of ESRD patients (41) and hemodialysis patients (42, 43). It consists of measures of general health and measures specific to ESRD organized in three domains: - Physical health Component Summary (PCS), 21 items; - Mental health Component Summary (MCS), 15 items; - Kidney Disease Component Summary (KDCS), 44 items. A total score and domain-specific PCS, MCS and KDCS will be calculated for each patient and a mean score calculated for each of the sub-samples. Total scores above 50 (max 100) are considered to represent good levels of quality of life.
• Socio-demographic data	Demographic data: age, sex and marital status Socio-economic data: educational level and employment status Financial data: (approximate) total yearly household income and expenditures on health care.
• The African Palliative Care Association Palliative care Outcome Scale (APCA-POS)	The APCA-POS, validated in Uganda, assesses patient palliative care needs and outcomes of care [22]. It contains 10 items, seven for the patient only and three for the family. The following aspects of holistic end of life care are explored: - Physical (pain and symptoms) - Psychological (patient and family worries) - Existential / Spiritual (worthiness of life, feeling at peace) - Social (confidence in caring for the patient). Each item is scored on a scale of 0 to 5.
• The Renal symptoms Palliative care Outcome Score (POS-S Renal).	The POS-S Renal assesses palliative care needs and outcomes specifically in patients with kidney disease [23]. It assesses how a patient feels across a range of symptoms specific to kidney failure (scale of 0 to 4). It also elicits which symptom a patient feels has affected them the most and which has improved the most.