Table 1.
Descriptive statistics of mean standardised PETS scoresa
| Domain | Mean score (95% CI) | SD | Missing domain data, n/N (%) |
|---|---|---|---|
| Medical information | 43.4 (39.5 to 47.2) | 4.2 | 9/123 (7.3) |
| Medications | 29.1 (24.3 to 34.0) | 5.2 | 8/123 (6.5) |
| Medical appointments | 56.0 (39.2 to 56.5) | 8.4 | 1/123 (0.8) |
| Monitoring health | 53.8 (46.6 to 60.9) | 0.8 | 3/123 (2.4) |
| Role and social activity limitations due to self-management | 64.0 (60.3 to 67.6) | 3.5 | 0 |
| Physical and mental exhaustion due to self-management | 79.5 (75.5 to 83.6) | 3.3 | 0 |
| Exercise and physical therapy | 61.4 (36.2 to 86.5) | 15.8 | 0 |
| Difficulties with medical equipment | 22.3 (21.5 to 23.0) | 0.3 | 32/123 (26.0) |
| Interpersonal challenges | 53.2 (28.7 to 77.7) | 15.4 | 0 |
| Difficulty with healthcare services | 57.9 (42.3 to 73.6) | 16.9 | 8/123 (6.5) |
| Medication reliance bother | 47.6 (39.7 to 55.6) | 43.0 | 6/123 (4.9) |
| Medication side effect bother | 23.0 (16.7 to 29.4) | 34.4 | 6/123 (4.9) |
| Workload summary score | 45.8 | 12.5 | — |
| Impact summary score | 71.8 | 11.0 | — |
a
Scores are 0–100 with 100 being the highest treatment burden. Missing domain data are number of participants who answered >50% of the items as ‘n/a’ or did not provide an answer. PETS = Patient Experience with Treatment and Self-management. SD = standard deviation.