Table 1 Data collection instruments

Demography form

Once, at start

Ethnicity, educational level, home and employment circumstances (adapted from [27])

Tasks questionnaire

3 monthly

15 dialysis related tasks (Table 2)

Think Kidneys questionnaire

6 monthly

POS-S Renal symptom score [16], quality of life (EQ-5D-5L [15]), patient activation measure [14]

SHAREHD uptake indicators form

6 monthly

Meta-cognition (memory & concentration [28]), Health literacy [29], dialysis access and attitudes to self-needling

Health economic form

6 monthly

Transport, dependants, arrangements made and duration of attendance for patient and companions who also attend dialysis

Status change form

Event Driven

Transplantation, mortality, changes in dialysis modality & location