Table 1 Primary and secondary outcomes and outcomes related to family caregivers
Outcome | Assessment | Test tool | Assessment time: | ||
|---|---|---|---|---|---|
Baseline | End | 6-month FU | |||
Primary outcome | Hours at work/study per week | Register-based or by interviews | X | X | X |
Secondary outcomes | Proficiency on functional task | The Mayo-Portland Adaptability Inventory (MPAI-4) (participation index – rating will be done separately by the patient, relatives, and staff) | X | X | X |
Functional status | Glasgow Outcome Scale Extended (GOSE) | X | X | X | |
Health-related quality of life | EuroQol Five Dimensions Questionnaire EQ-5D-3 L | X | X | X | |
Anxiety and depression | Hospital Anxiety and Depression Scale (HADS) | X | X | X | |
Fatigue | Dutch Multifactor Fatigue Scale (DMFS) | X | X | X | |
Physical functioning | Timed Up and Go (dual task) (TUG) | X | X | X | |
Self-perceived burden to others | Self-Perceived Burden Scale (SPB) | X | X | X | |
Socio-demographic, employment, and clinical data | Structured interviews | X | X | X | |
Working ability | Work Ability Index™ (version 2007) | X | X | X | |
Assessment of intelligence | Wechsler Adult Intelligence Scale (subtest) | X | X | X | |
Executive functioning | TRAIL Making Test A and B | X | |||
Cognitive functioning | Paced Auditory Serial Addition Task (PASAT) | X | X | X | |
Working memory | Connors Continuous Performance Test | X | X | X | |
Outcome family caregivers | Quality of life | EuroQol Five Dimensions Questionnaire EQ-5D-3L, SF-12 | X | X | X |
The adaptability and cohesion dimensions in family interactions | Family Adaptability and Cohesion Scale (FACES-IV) | X | X | X | |
Problem-solving ability | Problem Solving Inventory (PSI) | X | X | X | |
Assess perceived burden among caregivers | Caregiver Burden Scale (CBS) | X | X | X | |
Hospital Anxiety and Depression Scale | X | X | X | ||