TABLE 1c.
Impact of individual symptoms and perceived effectiveness of available treatment options: Feeding, respiratory, and sleep issues.
| Impact | Worry | Treatment option | Ideal treatment | ||||
|---|---|---|---|---|---|---|---|
| Age [years] | Symptom | Very high/most important | Very high/most important | Used | Effective | Very/most important | |
| Feeding problems/inability to eat independentlya | 0–3 | 88.5% | 57.7% | 65.4% | 61.5% | 61.5% | N/A |
| 4–10 | 68.8% | 56.3% | 40.6% | 43.8% | 43.8% | N/A | |
| 11–18 | 82.4% | 52.9% | 41.2% | 64.7% | 64.7% | N/A | |
| >18 | 50.0% | 50.0% | 50.0% | 16.7% | 16.7% | N/A | |
| Gastrointestinal problems/chronic constipationb | 0–3 | 80.8% | 50.0% | 46.2% | 69.2% | 69.2% | 50.0% |
| 4–10 | 68.8% | 50.0% | 34.4% | 56.3% | 53.1% | 46.9% | |
| 11–18 | 76.5% | 64.7% | 52.9% | 70.6% | 64.7% | 64.7% | |
| >18 | 66.7% | 66.7% | 50.0% | 100.0% | 100.0% | 83.3% | |
| Sleep problemsc | 0–3 | 65.4% | 53.8% | 46.2% | 26.9% | 26.9% | 65.4% |
| 4–10 | 84.4% | 78.1% | 56.3% | 53.1% | 50.0% | 81.3% | |
| 11–18 | 82.4% | 82.4% | 82.4% | 23.5% | 23.5% | 82.4% | |
| >18 | 66.7% | 66.7% | 50.0% | 16.7% | 16.7% | 83.3% | |
| Breathing problemsd | 0–3 | 42.3% | 50.0% | 46.2% | 34.6% | 34.6% | N/A |
| 4–10 | 37.5% | 46.9% | 40.6% | 34.4% | 28.1% | N/A | |
| 11–18 | 35.3% | 47.1% | 58.8% | 17.6% | 17.6% | N/A | |
| >18 | 33.3% | 33.3% | 66.7% | 16.7% | 16.7% | N/A | |
| Hyperphagia | 0–3 | 11.5% | 19.2% | 23.1% | N/A | N/A | N/A |
| 4–10 | 12.5% | 9.4% | 9.4% | N/A | N/A | N/A | |
| 11–18 | 35.3% | 17.6% | 29.4% | N/A | N/A | N/A | |
| >18 | 16.7% | 50.0% | 33.3% | N/A | N/A | N/A | |
Note: The perceived severity of feeding, respiratory and sleep issues, and effectiveness of applied treatments for use differ between age groups. n (0–3 years) = 26, n (4–10 years) = 32, n (11–18 years) = 17, n (>18 years) = 6. Therapeutic options: aG‐tube/NG‐tube, bGI‐medication, ctonsillectomy, dCPAP.
Abbreviation: N/A, not asked.