Table 3.
Primary and secondary healthcare encounters in TSC+E and Comparator cohorts during the most recent 3-year period
| TSC+E (n=209) | Comparator (n=1045) | |||||
| <18 years (n=81) |
=18 years (n=128) |
Overall (n=209) |
<18 years (n=405) |
=18 years (n=640) |
Overall (n=1045) |
|
| Mean number of GP visits per patient, by category of consultation (95% CI) | ||||||
| All GP visits* | 43.6 (33.5 to 53.7) | 71.7 (56.3 to 87.2) | 60.8 (50.5 to 71.2) | 18.3 (15.9 to 20.7) | 29.9 (26.8 to 33.0) | 25.4 (23.3 to 27.5) |
| Clinic visits | 24.2 (18.5 to 30.0) | 45.6 (35.7 to 55.4) | 37.3 (30.8 to 43.9) | 11.6 (10.1 to 13.1) | 18.5 (16.6 to 20.5) | 15.9 (14.5 to 17.2) |
| Home visits | 0.1 (0 to 0.2) | 0.3 (0.1 to 0.6) | 0.2 (0.1 to 0.4) | 0 (0) | 0.1 (0 to 0.1) | 0 (0 to 0.1) |
| Telephone consultations | 1.0 (0.3 to 1.8) | 1.5 (0.7 to 2.3) | 1.3 (0.7 to 1.9) | 0.6 (0.5 to 0.8) | 1.0 (0.7 to 1.3) | 0.8 (0.7 to 1.0) |
| Out of hours | 0.3 (0.1 to 0.5) | 0.5 (0.1 to 0.8) | 0.4 (0.2 to 0.6) | 0.3 (0.2 to 0.4) | 0.2 (0.1 to 0.2) | 0.2 (0.2 to 0.3) |
| Other† | 18.0 (13.1 to 22.9) | 23.9 (17.7 to 30.2) | 21.6 (17.4 to 25.9) | 5.7 (4.6 to 6.8) | 10.2 (9.0 to 11.3) | 8.4 (7.6 to 9.3) |
| Mean number of inpatient admissions per patient, by category of admission (95% CI) | ||||||
| All admissions | 4.3 (1.0 to 7.5) | 2.9 (2.2 to 3.5) | 3.4 (2.1 to 4.7) | 0.8 (0.5 to 1.1) | 1.5 (1.2 to 1.7) | 1.2 (1.0 to 1.4) |
| Elective admission | 3.3 (0.1 to 6.4) | 1.1 (0.8 to 1.5) | 2.0 (0.7 to 3.2) | 0.3 (0.2 to 0.4) | 0.7 (0.6 to 0.9) | 0.6 (0.5 to 0.7) |
| A&E admission | 1.0 (0.4 to 1.7) | 1.6 (1.1 to 2.1) | 1.4 (1.0 to 1.8) | 0.3 (0.2 to 0.4) | 0.5 (0.4 to 0.6) | 0.4 (0.3 to 0.5) |
| Other admission | 0 (0) | 0.2 (0 to 0.4) | 0.1 (0 to 0.2) | 0.2 (0 to 0.4) | 0.3 (0.2 to 0.3) | 0.2 (0.1 to 0.3) |
| Mean length of stay in hospital (days) per patient (95% CI) | ||||||
| All admissions | 2.7 (2.3 to 3.0) | 7.2 (3.1 to 11.4) | 5.0 (2.9 to 7.2) | 2.2 (1.9 to 2.6) | 4.8 (3.7 to 6.0) | 4.2 (3.3 to 5.1) |
| Elective admission | 2.1 (1.9 to 2.2) | 8.4 (0 to 18.8) | 4.3 (0.7 to 7.9) | 2.0 (1.5 to 2.5) | 4 (2.2 to 5.8) | 3.6 (2.1 to 5.0) |
| A&E admission | 4.5 (3.1 to 6.0) | 6.8 (5.0 to 8.7) | 6.1 (4.8 to 7.5) | 2.8 (2.0 to 3.5) | 7.4 (5.3 to 9.5) | 6.1 (4.6 to 7.6) |
| Other admission | 0 (0) | 2.9 (1.8 to 4.0) | 2.9 (1.8 to 4.0) | 1.8 (1.4 to 2.1) | 2.3 (2.1 to 2.6) | 2.1 (1.9 to 2.4) |
| Top five most frequently visited outpatient specialties in TSC (mean visits, 95% CI) | ||||||
| All outpatient visits | 16.8 (13.9 to 19.7) | 14.4 (11.1 to 17.7) | 15.3 (13.0 to 17.6) | 3.3 (2.7 to 3.9) | 5.3 (4.7 to 6.0) | 4.5 (4.1 to 5.0) |
| Neurology/neurosurgery | 2.9 (2.1 to 3.7) | 2.6 (1.8 to 3.4) | 2.7 (2.2 to 3.3) | 0.1 (0 to 0.1) | 0.1 (0.1 to 0.2) | 0.1 (0.1 to 0.2) |
| Paediatrics | 5.6 (4.5 to 6.6) | 0.5 (0.2 to 0.7) | 2.4 (1.9 to 3.0) | 0.6 (0.4 to 0.7) | 0 (0) | 0.2 (0.2 to 0.3) |
| Psychiatry/mental disorders | 1.0 (0.1 to 2.0) | 2.9 (1.0 to 4.8) | 2.2 (0.9 to 3.4) | 0.1 (0 to 0.3) | 0.3 (0.1 to 0.5) | 0.2 (0.1 to 0.4) |
| Allied health professional | 1.4 (0.4 to 2.5) | 0.7 (0.4 to 1.1) | 1.0 (0.6 to 1.5) | 0.2 (0.1 to 0.4) | 0.4 (0.3 to 0.6) | 0.4 (0.3 to 0.5) |
| Ophthalmology | 1.7 (1.1 to 2.3) | 0.5 (0.2 to 0.8) | 1.0 (0.7 to 1.3) | 0.2 (0.1 to 0.4) | 0.3 (0.2 to 0.5) | 0.3 (0.2 to 0.4) |
A&E, accident and emergency; GP, general practitioner; TSC, tuberous sclerosis complex; TSC+E, TSC with epilepsy.
*Analyses exclude administration encounters. With administration, GP visits are: 53.9 (41.9–66.0) for paediatric TSC+E, 89.6 (70.9–108.4) for adult TSC+E, 75.8 (63.2–88.3) for overall TSC+E populations. For Comparator: 22.4 (19.5–25.3) paediatric, 37.5 (33.7–41.4) adult, 31.7 (29.0–34.3) overall.
†Other includes: non-consultation data, non-consultation medication data, radiology result, hospital inpatient report, third-party consultation, mail to patient, results recording, letter from outpatients, discharge details, mail from patient.