Table 2.
Round 1 Survey Results by Stakeholder Group
| Domain | Score | Proportion of stakeholders rating the domain ≥7 on a 9-point Likert scale | ||||
|---|---|---|---|---|---|---|
|
| ||||||
| Mean (SD) (n=74) |
All Panel Members (n=74) |
Clinical Researchers (n=33) |
Clinicians / Professional Associations (n=19) |
Patients and Caregivers (n=18) |
US Federal Research Funding Organizations (n=4) |
|
| Domains meeting consensus criteriaa | ||||||
|
| ||||||
| Cognitive function and symptoms | 8.1 (1.1) | 68 (92%) | 32 (97%) | 18 (95%) | 14 (78%) | 4 (100%) |
| Physical function and symptoms | 8.1 (1.0) | 66 (89%) | 30 (91%) | 17 (89%) | 15 (83%) | 4 (100%) |
| Mental health conditions and symptoms | 7.9 (1.0) | 64 (86%) | 30 (91%) | 16 (84%) | 14 (78%) | 4 (100%) |
| Survival | 7.9 (1.6) | 56 (76%) | 31 (94%) | 14 (74%) | 9 (50%) | 2 (50%) |
| Pain | 7.2 (1.5) | 54 (73%) | 23 (70%) | 15 (79%) | 13 (72%) | 3 (75%) |
| Muscle and/or nerve function | 7.3 (1.5) | 52 (70%) | 23 (70%) | 12 (63%) | 13 (72%) | 4 (100%) |
| Pulmonary function and symptoms | 7 (1.6) | 52 (70%) | 20 (61%) | 14 (74%) | 15 (83%) | 3 (75%) |
|
| ||||||
| Domains not meeting consensus criteriaa | ||||||
|
| ||||||
| Satisfaction with life, or personal enjoyment | 7.1 (1.4) | 51 (69%) | 21 (64%) | 14 (74%) | 14 (78%) | 2 (50%) |
| Return to work or prior activities | 6.9 (1.6) | 45 (61%) | 24 (73%) | 11 (58%) | 8 (44%) | 2 (50%) |
| Fatigue | 6.8 (1.7) | 44 (59%) | 20 (61%) | 11 (58%) | 11 (61%) | 2 (50%) |
| Impact on family and/or caregivers | 6.7 (1.7) | 40 (54%) | 17 (52%) | 11 (58%) | 11 (61%) | 1 (25%) |
| Swallowing function and symptoms | 6.4 (1.8) | 37 (50%) | 15 (45%) | 9 (47%) | 11 (61%) | 2 (50%) |
| Financial impact on patient | 6.2 (1.9) | 35 (47%) | 13 (39%) | 7 (37%) | 14 (78%) | 1 (25%) |
| Healthcare resource utilization | 6.3 (1.7) | 35 (47%) | 16 (48%) | 5 (26%) | 12 (67%) | 2 (50%) |
| Sleep function and symptoms | 6.3 (1.6) | 35 (47%) | 16 (48%) | 7 (37%) | 10 (56%) | 2 (50%) |
| Social roles, activities or relationships | 6.3 (1.8) | 34 (46%) | 17 (52%) | 7 (37%) | 9 (50%) | 1 (25%) |
| Type of residence | 6.2 (1.8) | 32 (43%) | 13 (39%) | 10 (53%) | 8 (44%) | 1 (25%) |
| Gastrointestinal function and symptoms | 5.5 (1.8) | 21 (28%) | 7 (21%) | 5 (26%) | 7 (39%) | 2 (50%) |
| Sexual function and symptoms | 4.8 (1.8) | 11 (15%) | 3 (9%) | 2 (11%) | 5 (28%) | 1 (25%) |
Abbreviations: SD, Standard Deviation
The consensus criteria for inclusion as a core domain was defined as ≥70% of all panel members rating a domain ≥7 and no more than 15% rating the domain ≤3 on a 9-point scale. Domains are ordered by the proportion of panel members rating the domain ≥7.
A total of 7 of 74 (9%) unique panel members ever selected “Unable to Score.” The number of panel members selecting “Unable to Score” by domain: Physical function and symptoms (1), Mental health conditions and symptoms (1), Survival (3), Muscle and/or nerve function (1), Pulmonary function and symptoms (1), Return to work or prior activities (3), Impact on family and/or caregivers (3), Swallowing function and symptoms (2), Healthcare resource utilization (1), Sleep function and symptoms (1), and Social roles, activities or relationships (1).