Healthcare Utilization and Absenteeism

HTC Utilization

Among male Registry participants with hemophilia A, 95% received care at a primary HTC location, 6% received care at an HTC outreach clinic, and less than 1% received care at an HTC telemedicine session or clinic. Among male Registry participants with hemophilia B, 90% received care at a primary HTC location, 11% received care at an HTC outreach clinic, and 1% received care at an HTC telemedicine session or clinic (Table 7).

Table 7. Healthcare utilization: Care received by male Registry participants with hemophilia, by HTC location and diagnosis
Table 7. Healthcare utilization: Care received by male Registry participants with hemophilia, by HTC location and diagnosis
Hemophilia A Hemophilia B
HTC outreach clinic 455 6.3% 208 11.0%
HTC telemedicine session or telemedicine clinic 26 0.4% 22 1.2%
HTC’s primary location 6,913 95.0% 1,716 90.5%

Emergency Room Visits

Male Registry participants with hemophilia A had approximately 3,842 visits to the emergency room (ER), a mean of two episodes per person (1–26 range). When broken down by age, younger participants frequented the ER more than older participants, with 2,502 visits and 1,340 visits, respectively.

Table 8 shows that males with severe hemophilia A who were age 18 years or younger had the most ER visits among all age groups and levels of hemophilia severity.

Table 8. ER Visits among male Registry participants with hemophilia A, by severity and age group
Table 8. ER Visits among male Registry participants with hemophilia A, by severity and age group
Number (%) patients reporting at least 1 ER visit # of visits Mean Median Range
>18 years Mild 186 (20%) 264 1.42 1 1–8
Moderate 123 (19%) 230 1.87 1 1–12
Severe 401 (19%) 834 2.08 1 1–26
Unknown 7 (26%) 12 1.71 2 1–3
≤18 years Mild 231 (30%) 373 1.61 1 1–7
Moderate 191 (31%) 467 2.45 2 1–25
Severe 681 (31%) 1,649 2.42 2 1–26
Unknown 7 (39%) 13 1.86 2 1–3

Male Registry participants with hemophilia B had approximately 878 visits to the ER, with a mean of two visits per person (1–24 range). When broken down by age, younger participants had more ER visits than older participants (487 vs. 391, respectively).

Table 9 shows that the male Registry participants with severe hemophilia B who were age 18 years or younger had the most ER visits and the highest proportion of participants visiting the ER at least one time, compared to participants with other age and severity levels. Among the older participants, those with severe hemophilia B had more visits to the ER overall, but the older participants with mild hemophilia B had the highest proportion of participants visiting the ER at least one time, when compared with other severity levels.

Table 9. ER visits among male Registry participants with hemophilia B, by severity and age group
Table 9. ER visits among male Registry participants with hemophilia B, by severity and age group
Number (%) patients reporting at least 1 ER visit # of visits Mean Median Range
>18 years Mild 46 (26%) 68 1.48 1 1–4
Moderate 77 (23%) 138 1.79 1 1–12
Severe 71 (20%) 183 2.58 1 1–24
Unknown 2 (100%) 2 1 1 1–1
≤18 years Mild 50 (19%) 85 1.7 1 1–8
Moderate 90 (24%) 141 1.57 1 1–6
Severe 123 (33%) 260 2.11 1 1–11
Unknown 1 (11%) 1 1 1 1–1

Inpatient Admissions and Nights

Among the male Registry participants with hemophilia A or B, there were 1,479 inpatient admissions among 926 males and 320 inpatient admissions among 202 males, respectively.

Among male Registry participants with hemophilia A, those older than 18 years of age had similar admission rates as those 18 years of age or younger (both had 1.6 mean admissions). For male Registry participants with hemophilia B, those older than 18 years of age had more admissions (mean=1.7) than those 18 years of age and younger (mean=1.5). Male Registry participants with severe hemophilia A or B had the most hospital admissions in both age groups (Table 10 and Table 11).

Table 10. Inpatient admissions among male Registry participants with hemophilia A, by severity and age group
Table 10. Inpatient admissions among male Registry participants with hemophilia A, by severity and age group
Number (%) of patients reporting at least 1 inpatient admission # of visits Mean Median Range
>18 years Mild 92 (10%) 118 1.28 1 1–7
Moderate 73(11%) 103 1.41 1 1–5
Severe 241 (12%) 432 1.79 1 1–25
Unknown 6 (22%) 8 1.33 1 1–3
≤18 years Mild 65 (9%) 91 1.4 1 1–7
Moderate 71 (12%) 93 1.31 1 1–5
Severe 374 (17%) 629 1.68 1 1–20
Unknown 4 (22%) 5 1.25 1 1–2
Table 11.  Inpatient admissions among male Registry participants with hemophilia B, by severity and age group
Table 11. Inpatient admissions among male Registry participants with hemophilia B, by severity and age group
Number (%) of patients reporting at least 1 inpatient admission # of visits Mean Median Range
>18 years Mild 20 (11%) 44 2.2 1 1–20
Moderate 31 (9%) 42 1.35 1 1–7
Severe 48 (13%) 84 1.75 1 1–8
Unknown 2 (100%) 2 1 1 1–1
≤18 years Mild 14 (5%) 22 1.57 1 1–4
Moderate 28 (7%) 31 1.11 1 1–3
Severe 59 (16%) 95 1.61 1 1–5
Unknown 0 (0%) . . . .

Within the 12 months preceding their enrollment, male Registry participants with hemophilia A or B (187) spent 5,767 and 1,121 nights, respectively, admitted to a hospital. Male participants with severe hemophilia, regardless of age and hemophilia type, spent the most nights in the hospital (means ranged from 7-8 nights) and had the highest proportion with at least one night hospitalized (range 10-15%). Inpatient hospital stays were fairly comparable for older versus younger participants with severe hemophilia. The older participants with moderate hemophilia A or B averaged slightly more nights in the hospital than the younger participants with moderate hemophilia A or B.  However, among the participants with mild hemophilia A, older participants averaged approximately three more nights in the hospital than the younger participants. Among those with mild hemophilia B, the older participants averaged approximately two more nights in the hospital than the younger participants (Table 12 and Table 13).

Table 12.  Inpatient hospital stay among male Registry participants with hemophilia A, by severity and age group
Table 12. Inpatient hospital stay among male Registry participants with hemophilia A, by severity and age group
Number (%) of patients that spent at least 1 night as a hospital inpatient # of nights Mean Median Range
>18 years Mild 82 (9%) 489 5.96 3 1–45
Moderate 67 (10%) 409 6.1 4 1–49
Severe 213 (10%) 1,685 7.91 3 1–90
Unknown 3 (11%) 23 7.67 2 1–20
≤18 years Mild 62 (8%) 184 2.97 2 1–16
Moderate 65 (11%) 367 5.65 2 1–89
Severe 341 (15%) 2,598 7.62 3 1–117
Unknown 4 (22%) 12 3 1 1–9
Table 13.  Inpatient hospital stay among male Registry participants with hemophilia B, by severity and age group
Table 13. Inpatient hospital stay among male Registry participants with hemophilia B, by severity and age group
Number (%) of patients that spent at least 1 night as a hospital inpatient # of nights Mean Median Range
>18 years Mild 16 (9%) 74 4.63 2.5 1–20
Moderate 29 (9%) 141 4.86 3 1–43
Severe 42 (12%) 306 7.29 4 1–82
Unknown 2 (100%) 5 2.5 2.5 1–4
≤18 years Mild 13 (5%) 37 2.85 2 1–7
Moderate 28 (7%) 105 3.75 2 1–26
Severe 57 (15%) 453 7.95 4 1–90
Unknown 0 (0%) . . . .

Absenteeism

Older male Registry participants with hemophilia missed an additional 0.5–3 days of school or work than the younger male participants, regardless of severity level. Male participants with severe hemophilia A had the most school or work absences, regardless of age. Among male participants with hemophilia B ≤18 years of age, those classified as severe missed the most days; however, among male participants >18 years of age, those classified as moderate missed the most days. Among the hemophilia A patients, the proportion of mild patients with 1 or more absences was highest when compared with other severities (Tables 14 and 15).

Table 14.  School or work absences among male Registry participants with hemophilia A, by severity and age group
Table 14. School or work absences among male Registry participants with hemophilia A, by severity and age group
Number (%) of patients that had 1 or more absences # of days Mean Median Range
>18 years Mild 549 (60%) 1,374 2.5 0 0–95
Moderate 339 (52%) 2,154 6.35 0 0–365
Severe 1,107 (54%) 5,186 4.68 0 0–365
Unknown 14 (52%) 65 4.64 0 0–42
≤18 years Mild 537 (71%) 1,027 1.91 0 0–80
Moderate 374 (61%) 1,136 3.04 0 0–100
Severe 1,286 (58%) 4,764 3.7 0 0–120
Unknown 6 (33%) 4 0.67 0.5 0–2
Table 15.  School or work absences among male Registry participants with hemophilia B, by severity and age group
Table 15. School or work absences among male Registry participants with hemophilia B, by severity and age group
Number (%) of patients that had 1 or more absences # of days Mean Median Range
>18 years Mild 163 (93%) 204 1.25 0 0–40
Moderate 258 (77%) 1,087 4.21 0 0–365
Severe 186 (51%) 960 5.16 0 0–115
Unknown 2 (100%) 3 1 0 0–3
≤18 years Mild 122 (47%) 252 2.07 0 0–100
Moderate 219 (58%) 368 1.68 0 0–60
Severe 197 (52%) 595 3.02 0 0–50
Unknown 0 (0%) . . . .

Over the 12 months preceding Registry enrollment, more than 60% of male participants with hemophilia, ages 6–17 years, had zero missed days of school due to their hemophilia; an additional 19% only missed 1–3 days. In comparison, data from the 2016 National Survey of Children’s Health1 indicate that 38% of children with special healthcare needs (CSHCN) and 49% of children without special needs (non-CSHCN) missed 1–3 days of school (Figure 19).

Figure 19. Number of school days missed due to illness (CSHCN/non-CSHCN) or hemophilia A or B (Registry) during the last 12 months among CSHCN/non-CSHCN children and male Registry participants ages 6–17 years
Figure 19. Number of school days missed due to illness (CSHCN/non-CSHCN) or hemophilia A or B (Registry) during the last 12 months among CSHCN/non-CSHCN children and male Registry participants ages 6–17 years

CSHCN = children with special healthcare needs (National Survey of Children’s Health)
Non-CSHCN = children without special healthcare needs (National Survey of Children’s Health)

Figure 19. Number of school days missed due to illness (CSHCN/non-CSHCN) or hemophilia A or B (Registry) during the last 12 months among CSHCN/non-CSHCN children and male Registry participants ages 6–17 years
Non-CSHCN CSHCN Hemophilia A Hemophilia B
0 Days 33.0% 22.3% 1087 60.1% 278 65.4%
1–3 Days 48.5% 38.0% 346 19.1% 87 20.5%
4–6 Days 12.2% 18.8% 138 7.6% 21 4.9%
7–10 Days 4.4% 10.4% 101 5.6% 14 3.3%
11 or more days 1.9% 10.5% 136 7.5% 25 5.9%