Data collection
EVENTS
At baseline, day seven and day 14, the EQ-5D-5L (After completing the baseline assessment, caregivers will daily self-complete a fluctuation diary for 14 days, documenting the frequency and intensity of health state fluctuations, affected dimensions, and underlying health events (see Health fluctuation diary (exemplary illustration for day 1).On day seven of the self-completion of the 14-day diary, the nurse will visit the caregiver at their home and will glance over the caregiver's documentation from day 1 to day 7. The study nurse will provide further assistance, discuss inconsistencies in the documented answers and be available for any questions about completing the diary. This could avoid entry errors and missings and, therefore, promotes the retention of protocols. Furthermore, instructions will be provided on how to fill out the diary.As an incentive for complete follow-up, the patient and caregiver receive a lump sum payment upon completion of the 14-day assessment period.Before the study roll-out, a pilot study will be implemented for 