Table 2.
Concepts elicited across all sources
| Concept | Participants, N = 29 | Clinician Experts, N = 3 | Qualitative Literature, N = 10* | Existing Instruments, N = 13** |
|---|---|---|---|---|
| Core self‐care activities | ||||
| Bathing/showering | 81% | 2 | 2 | 4 |
| Getting dressed/undressed | 73% | 1 | 2 | 7 |
| Hygiene/grooming | 65% | 3 | 1 | 6 |
| Walking in the home | 81% | 3 | – | 3 |
| Getting in/out of bed | 73% | 3 | – | 3 |
| Feeding yourself | 46% | 3 | 2 | 6 |
| Getting on/off the toilet | 42% | 2 | 1 | 3 |
| Other ADLs | ||||
| Driving | 92% | 3 | 1 | 2 |
| Shopping | 65% | 2 | 1 | 2 |
| Preparing food | 69% | 3 | 1 | 3 |
| Household activities | 62% | 1 | 2 | 6 |
| Working | 50% | 2 | – | – |
| Getting in/out of vehicle | 46% | – | – | 2 |
| Using a computer/tablet/phone | 54% | 3 | 1 | 2 |
| General activity | 38% | – | 6 | – |
| Interpersonal/social | ||||
| Relationship with others (not spouse/partner) | 81% | 2 | 1 | 2 |
| Relationship with spouse/partner | 62% | 2 | 1 | 2 |
| Social activities | 46% | 3 | 4 | 5 |
| Writing | 62% | – | 1 | 6 |
| Talking/communicating with others | 35% | 3 | 2 | 6 |
| Emotion | ||||
| Anxiety | 92% | 3 | 2 | 4 |
| Frustration | 73% | 2 | – | – |
| Depression | 46% | 2 | 4 | 2 |
| Isolation | 42% | 2 | – | 1 |
| Embarrassing | 38% | 2 | – | 1 |
| Fear of falling | 24% | – | – | 1 |
| Managing/living with PD | ||||
| Dependence | 65% | 2 | 3 | 5 |
| Slowness/taking longer | 62% | 2 | 3 | 6 |
| Unpredictability/planning | 27% | 3 | 1 | – |
*
These 10 articles plus another 11 on PRO instruments make up the 21 full‐text articles reviewed during the concept exploration stage.
**
8 of the 13 PROs reviewed during the concept exploration stage were further evaluated for fit‐for‐purpose adequacy for stated context of use; only 5 were found to be both motor and PD specific.
ADLs, activities of daily living; PD, Parkinson's disease; PROs, patient‐reported outcomes.