Participants in the qualitative interviews
| Participants | Patient (individual interviews) sex (F/M), age category, diagnoses, work | Patients (focus group) sex, age category, diagnoses, work | Partners (individual interviews) sex, age category, work | Healthcare professionals |
| Rehabilitation centre Klimmendaal, Arnhem | 1. F, 70–80 years, FSHD, not working 2. F, 60–70 years, IBM, not working | 1. F, 40–50 years, FSHD, not working 2. M, 60–70 years, HMSN, working 3. M, 60–70 years, MM, working | 1. M, 70–80 years, not working | Individual interviews: Rehabilitation physician (n=1) Occupational therapist (n=1) Physical therapist (n=1) |
| Community health centre Buitenlust, Venray | 3. F, 60–70 years, CPEO, not working, drop out from intervention group | 4. F, 60–70 years, MM, not working 5. F, 30–40 years, MM, working 6. M, 60–70 years, HMSN, not working 7. M, 40–50 years, FSHD, Working | – | Individual interviews: Occupational therapist (n=1) Physical therapist (n=1) |
| Radboud University Medical Centre, Nijmegen | 4. M, 50–60 years, MM, not working 5. F, 60–70 years, IBM, not working 6. F, 50–60 years, myasthenia gravis, working 7. M, 30–40 years, MM, not working dropped out from intervention group | 8. M, 60–70 years, FSHD, working 9. M, 40–50 years, MD, not working 10. F, 30–40 years, MD, working 11. F, 70–80 years, FSHD, working 12. F, 40–50 years, HMSN, not working | 2. F, 60–70 years, working | Individual interviews: Rehabilitation physician (n=1) Occupational therapists (n=2) Neurologist (n=1) Internist (n=1) Secretary (n=1) Physical therapist (n=1) Member patient support association (n=1) |
| Total interviews | n=7 | n=12 | n=2 | n=13 |
CPEO, chronic progressive external ophthalmoplegia; F, female; FSHD, facioscapulohumeral dystrophy; HMSN, hereditary motor sensory neuropathy; IBM, inclusion body myositis; M, male; MD, myotonic dystrophy type 1; MM, mitochondrial myopathy.