Table 2

Validated instruments to determine specific caregiver outcomes collected at baseline: after completion of the 10-week treatment programme and 6 and 12 months postintervention in family caregivers from both randomised controlled trial arms

Scale/ ToolApproach takenOutcome evaluated
Caregiver Burden Scale12 30
  • 22 questions on the impact of the care recipient's disabilities on caregiver life

  • Total burden score calculated;12 31 higher scores indicate higher levels of caregiver burden

  • Assesses how the caregiver perceives the impact of the burden of caregiving (subjective caregiver burden). This is the primary outcome

  • Topics covered are: caregiver's health, psychological well-being, finances, social life and relationship between caregiver and care recipient

Centre for Epidemiologic Studies Depression Scale (CESD-10)32
  • 10 items; a score of ≥10 out of 30 indicates significant depressive symptoms32

  • Measures depressive feelings and behaviours experienced in the past week

General Self-Efficacy Scale33
  • 10 items; total score ranges between 10 and 40, with a higher score indicating more self-efficacy

  • Assess a general sense of perceived self-efficacy with the aim in mind to predict coping with daily hassles as well as adaptation after experiencing all kinds of stressful life events

Fatigue Severity Scale34
  • 9 items; a score of ≥4 generally means that the fatigue is severe

  • Questionnaire that rates the severity of fatigue symptoms in individuals.

EQ-5D-5L35
  • Defines health in terms of 5 dimensions: mobility, self-care, usual activities, pain/discomfort and anxiety/depression

  • Used to calculate utility weights and quality-adjusted life years during the duration of the trial

  • Generic instrument for describing and valuing health will be administered to caregivers

  • Used for cost–utility analysis