An observational study of pediatric healthcare burden in Angelman syndrome: results from a real-world study

Table 2 Healthcare utilization among individuals with AS by age

Descriptive	0–1	2	3	4	5	6	7	8	9	10	11	12
N¹	301	282	260	234	208	179	155	134	114	92	77	65
Hospitalization summary measures
Had hospitalization, %	43	24	21	18	14	13	13	10	12	7	8	11
Hospitalization per year, mean	1.5	1.3	1.3	1.6	1.4	1.1	1.1	1.2	1.4	1.2	1.3	1.1
LOS, mean	6.5	3.1	2.5	2.6	4.7	3.6	3.1	2.7	2.9	1	3.4	1.5
Most common reasons for hospitalization
Seizures, %	10	11	10	6	7	5	5	4	3	0	3	1
Lower respiratory infection, %	10	5	1	3	1	1	1	2	3	1	0	0
Surgery, %	5	3	2	2	1	0	1	2	0	0	0	0
Surgery summary measure
Had surgery, %	29	21	15	17	9	9	14	8	9	4	8	5
Most common reasons for surgery
Tympanostomy tubes, %	10	5	5	3	4	1	2	0	2	0	1	0
Strabismus, %	7	9	2	3	1	2	2	1	1	0	0	0
Tonsillectomy & adenoidectomy, %	2	2	5	5	2	2	1	0	1	0	0	0
Medication summary measures
Number of prescription medications, mean	2.1	2.0	2.1	2.3	2.3	2.1	2.2	2.2	2.3	2.5	2.5	2.7
At least one prescription medication, %	51	59	69	71	76	78	81	81	83	77	78	77
Anti-epileptic drugs, %	32	50	61	64	67	69	73	71	72	71	70	69
Anti-gastroesophageal reflux medication, %	27	15	12	13	12	13	11	12	13	10	12	9
Asthma and Allergy medication, %	5	5	7	9	7	6	7	7	8	5	4	6
Antibiotic, %	3	1	4	2	1	1	2	1	1	2	0	2
Sleep medication, %	3	6	9	12	15	18	17	19	18	16	20	26
Psychotropic medication, %	1	1	2	6	9	9	13	15	17	22	20	23
Other, %	2	1	6	5	6	5	8	6	5	7	10	11
Number of non-prescription medications, mean	1.6	1.9	1.8	1.9	1.9	2.0	2.0	2.1	2.1	2.2	2.1	1.8
Asthma and Allergy, %	3	5	5	6	7	7	8	5	5	5	7	8
Laxative, %	11	14	15	15	14	14	18	19	17	19	16	19
Sleep medication, %	18	30	31	35	37	33	33	34	31	29	25	23

Notes: ¹Age is rounded down to the nearest year. The event counts for each age are based on the participants reported age at a specific event. Participant are included in the overall N (denominator) for each age group until their age at last visit (the oldest age recorded). Participants are only counted once per age. For ages 0–1 Year, the sum of the number of unique prescription/non-prescription medications taken at age 0 and at age 1 is summarized

ISSN: 1750-1172