TABLE 2.
Outcome measures in pediatric and adolescent hEDS/HSD population
| Primary outcome variables |
||||
|---|---|---|---|---|
| Mean | SD | Healthya Mean |
Healthy SD |
|
| FDI | 19.1 | 13.2 | 1.7 | 3.2 |
| PedsQL multidimensional fatigue total score | 48.5 | 25.8 | 85.0 | 12.6 |
| General fatigue | 45.0 | 30.0 | 89.2 | 11.9 |
| Sleep/rest fatigue | 47.4 | 26.4 | 78.3 | 15.7 |
| Cognitive fatigue | 52.9 | 29.2 | 89.4 | 13.6 |
| PedsQL 4.0 generic core total score | 56.7 | 21.4 | 90.2 | 10.1 |
| Physical functioning | 49.5 | 23.5 | 91.9 | 9.4 |
| Emotional functioning | 54.7 | 25.1 | 84.8 | 17.4 |
| Social functioning | 70.2 | 21.2 | 95.2 | 8.9 |
| School functioning | 56.5 | 26.1 | 87.4 | 12.5 |
| Psychosocial functioning | 60.5 | 21.9 | 88.5 | 11.9 |
| Pain (PFSD) | 53.7 | 41.3 | b | |
| Herth Hope Index total | 37.6 | 6.87 | b | |
| BPQI | 45.8 | 11.8 | b | |
Note. BIPQ, Brief Illness Perception Questionnaire; FDI, Functional Disability Inventory; hEDS, hypermobile Ehlers-Danlos syndrome; HRQOL, health-related quality of life; HSD, hypermobility spectrum disorder; PedsQL: Pediatric Quality of Life; PFSD, Pain-Frequency- Severity-Duration.
Pediatric and adolescent participants with hEDS/HSD (n = 47) completed scales measuring functional impairment, psychosocial factors and quality of life.
Data for the healthy controls on the FDI, PedsQL, and the Peds QL Multidimensional Fatigue Scale represent responses from 48 healthy individuals age 10–20 years from the study by Rowe et al. (2014).
There are few studies on healthy control values for these measures.