Table 3.
Round 2 Survey Results by Stakeholder Group
| Domain | Score | Proportion of stakeholders scoring the domain ≥7 on a 9-point Likert scale | ||||
|---|---|---|---|---|---|---|
|
| ||||||
| Mean (SD) (n=75) |
All Panel Members (n=75) |
Clinical Researchers (n=35) |
Clinicians / Professional Associations (n=19) |
Patients and Caregivers (n=17) |
US Federal Research Funding Organizations (n=4) |
|
| Domains meeting consensus criteriaa | ||||||
|
| ||||||
| Physical function and symptoms | 8.4 (0.8) | 73 (97%) | 34 (97%) | 18 (95%) | 17 (100%) | 4 (100%) |
| Cognitive function and symptoms | 8.4 (0.9) | 71 (95%) | 34 (97%) | 18 (95%) | 15 (88%) | 4 (100%) |
| Mental health conditions and symptoms | 8.0 (0.8) | 70 (93%) | 33 (94%) | 18 (95%) | 15 (88%) | 4 (100%) |
| Survival | 8.2 (1.3) | 64 (85%) | 35 (100%) | 16 (84%) | 10 (59%) | 3 (75%) |
| Pulmonary function and symptoms | 7.3 (1.4) | 64 (85%) | 29 (83%) | 14 (74%) | 17 (100%) | 4 (100%) |
| Pain | 7.5 (1.1) | 63 (84%) | 29 (83%) | 17 (89%) | 14 (82%) | 3 (75%) |
| Muscle and/or nerve function | 7.3 (1.2) | 62 (83%) | 27 (77%) | 16 (84%) | 15 (88%) | 4 (100%) |
|
| ||||||
| Domains not meeting consensus criteriaa | ||||||
|
| ||||||
| Satisfaction with life, or personal enjoyment | 7.2 (1.2) | 52 (69%) | 22 (63%) | 14 (74%) | 14 (82%) | 2 (50%) |
| Impact on family and/or caregivers | 7.1 (1.4) | 50 (67%) | 23 (66%) | 12 (63%) | 13 (76%) | 2 (50%) |
| Fatigue | 6.9 (1.4) | 49 (65%) | 23 (66%) | 12 (63%) | 12 (71%) | 2 (50%) |
| Return to work or prior activities | 7.0 (1.3) | 48 (64%) | 23 (66%) | 13 (68%) | 10 (59%) | 2 (50%) |
| Swallowing function and symptoms | 6.7 (1.6) | 47 (63%) | 20 (57%) | 11 (58%) | 13 (76%) | 3 (75%) |
| Financial impact on patient | 6.7 (1.5) | 43 (57%) | 19 (54%) | 8 (42%) | 15 (88%) | 1 (25%) |
| Healthcare resource utilization | 6.6(1.2) | 41 (55%) | 20 (57%) | 7 (37%) | 12 (71%) | 2 (50%) |
| Sleep function and symptoms | 6.4 (1.4) | 38 (51%) | 17 (49%) | 7 (37%) | 12 (71%) | 2 (50%) |
| Social roles, activities or relationships | 6.6 (1.3) | 37 (49%) | 19 (54%) | 6 (32%) | 11 (65%) | 1 (25%) |
| Type of residence | 6.3 (1.6) | 30 (40%) | 12 (34%) | 9 (47%) | 8 (47%) | 1 (25%) |
| Gastrointestinal function and symptoms | 5.5 (1.5) | 16 (21%) | 4 (11%) | 5 (26%) | 6 (35%) | 1 (25%) |
| Sexual function and symptoms | 4.9 (1.2) | 7 (9%) | 3 (9%) | 0 (0%) | 4 (24%) | 0 (0%) |
|
| ||||||
| Domains suggested by stakeholders during Round 1 (none meeting consensus criteriaa) | ||||||
|
| ||||||
| Fatigability / endurance | 6.9 (1.4) | 47 (63%) | 19 (54%) | 12 (63%) | 14 (82%) | 2 (50%) |
| Susceptibility to repeated infections | 6.7 (1.5) | 46 (61%) | 17 (49%) | 12 (63%) | 14 (82%) | 3 (75%) |
| Renal Function | 6.5 (1.5) | 42 (56%) | 17 (49%) | 9 (47%) | 14 (82%) | 2 (50%) |
| Self-efficacy/management | 6.4 (1.7) | 36 (48%) | 16 (46%) | 7 (37%) | 10 (59%) | 3 (75%) |
| Management of Complex Medication Regimens | 6.2 (1.7) | 35 (47%) | 13 (37%) | 10 (53%) | 11 (65%) | 1 (25%) |
| Resilience | 6.4 (1.7) | 34 (45%) | 14 (40%) | 6 (32%) | 12 (71%) | 2 (50%) |
| Hearing | 5.8 (1.6) | 23 (31%) | 14 (40%) | 3 (16%) | 3 (18%) | 3 (75%) |
| Loss of Taste | 5.6 (1.6) | 18 (24%) | 10 (29%) | 3 (16%) | 4 (24%) | 1 (25%) |
Abbreviations: SD, Standard Deviation
a
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.