Cite

The first study of its kind to look at the service, education and care offered by bleeding disorder camps in the US establishes their key role in bleeding disorder care and identifies further opportunities for growth and improvement.
The first study of its kind to look at the service, education and care offered by bleeding disorder camps in the US establishes their key role in bleeding disorder care and identifies further opportunities for growth and improvement.

Figure 1

Infusion teaching follow-up after campSurvey respondents were able to select more than one option.
Infusion teaching follow-up after campSurvey respondents were able to select more than one option.

Figure 2

Respondents’ estimate of the percentage of children who return to camp independent in self-infusion
Respondents’ estimate of the percentage of children who return to camp independent in self-infusion

Figure 3

Camp's adherence to state and national guidelines, accreditation, and licensure requirements (n=20 CAs)
Camp's adherence to state and national guidelines, accreditation, and licensure requirements (n=20 CAs)

Infusion education while at camp

WHO IS INFUSION EDUCATION OFFERED TO AT CAMP? (CHECK ALL THAT ARE APPROPRIATE) CAMP ADMINISTRATORS (N=20) HCPS (N=54 WHO TEACH INFUSION CLASSES)
N % N %
Those diagnosed with hemophilia 9 45.0% 44 81.5%
Anyone on infusion therapy 9 45.0% 46 85.2%
Anyone interested in learning 8 40.0% 29 53.7%
Those diagnosed with von Willebrand's Disease 7 35.0% 34 63.0%
Those on prophylaxis 7 35.0% 40 74.1%
Carriers 6 30.0% 19 35.2%

Guidelines/policy on storage and dispensing of medications at camp

CAS (N=20) HCPS (N=75)
N % N %
Does your Camp Health Center have guidelines or policy on the storage of controlled substances (ADHD medications/opioids/benzodiazepines/etc.)?
Yes 18 90.0 45 60.0
Don't know 2 10.0 26 34.7
No 0 0.0 4 5.3
Does your Camp Health Center have guidelines or policy on who can dispense medications?
Yes 19 95.0 49 65.3
Don't know 1 5.0 23 30.7
No 0 0.0 3 4.0
Does your Camp Health Center have guidelines or policy on who can dispense controlled substances (opioids/benzodiazepines/etc.)?
Yes 18 90.0 38 50.7
Don't know 2 10.0 31 41.3
No 0 0.0 6 8.0

CHC staffing (n=101 HCPs)Survey respondents were able to select more than one option.

N %

Medical HCPs from HTCs 86 85.1

Volunteers from HTCs and chapters 48 47.5

No affiliation with bleeding disorders community but PWBD are invited 9 8.9

Chapter personnel only 2 2.0

Other: 15 14.9
Other health care professionals 5
Unknown/not sure 4
Industry staff* 3
Home care staff** 2
Medical or nursing students/residents 2
Specialty pharmacy staff*** 1

Provision of factor, supplies, and medications during camp (n=20 CAs)Survey respondents were able to select more than one option.

CAMP CAMPER HTC DONATION CHAPTER
N % N % N % N % N %
Over-the-counter medication 13 65 8 40 6 30 6 30 1 5
Supplies 9 45 9 45 7 35 9 45 1 5
Prescribed medication 2 10 19 95 2 10 2 10 0 0
Factor 0 0 19 95 0 0 1 5 1 5

HCP barriers to attending camp (n=24)*

BARRIER N %
My HTC required I use personal/vacation time and I was not willing to do so 7 29.2
I did not have time to participate 4 16.7
The timing just hasn’t been right 4 16.7
I am not licensed in the state in which camp is held 4 16.7
I can’t leave my family for that length of time 3 12.5
My HTC would not allow for time off to participate 3 12.5
I don’t like going to camp 2 8.3
I don’t work with children, so I don’t go to camp 1 4.2
It is too far to travel 1 4.2
I can’t bring my family 1 4.2
Other 6 25.0

HCP employment outside of camp and compensation (n=75)

N %
Employment outside of camp
HTC 65 86.7
Hospital (not HTC) 5 6.7
Neither hospital nor HTC 5 6.7
Employment status
Full-time 66 88.0
Salaried 47 63.0
Hourly 28 37.0
20–35 hours/week 8 10.7
Less than 20 hours/week 1 1.3
Compensation while at camp
Camp counted as work time 61 81.3
Compensation time given 8 10.6
Used vacation time 4 5.3
Combination of work time and compensation time 1 1.3
Breakdown of those who used work time to participate at camp (n=62)
Allowed 8 hours/day 55 88.7
Allowed 12 hours/day 5 8.1
Allowed 24 hours/day 2 3.2
Breakdown of those who used compensation time to participate at camp (n=9)
Allowed 8 hours/day 8 88.9
Allowed 24 hours/day 1 11.1
Breakdown of those who used vacation time to participate at camp (n=5)
Allowed 8 hours/day 2 40.0
Allowed 24 hours/day 2 40.0
Allowed 12 hours/day 1 20.0
eISSN:
2055-3390
Language:
English
Publication timeframe:
Volume Open
Journal Subjects:
Medicine, Basic Medical Science, other, Clinical Medicine, Pharmacy, Pharmacology