Survey of Fever Management Practices Among Sickle Cell Disease Management Programs in Malarial Regions
A. Demographic information
1. Years in practice after completion of medical/nursing school (please circle one):
0-2 3-5 6-10 11-19 20+ N/A
2. Type of formal training (select all that apply):
___ Physician ___ Nursing ____ Public Health ___ General medicine ___ Pediatrics
___ Adult hematology ___ Pediatric hematology ___ General Hematology
___Other (specify ______)
3. In what country do you currently work?
______
4. Clinical job title(s):
______
5. Name of sickle cell disease clinic or program:
______
B. General Program Characteristics
6. How many sickle cell clinic sessions are held each week? Include clinics when only patients with sickle cell are seen and general hematology clinics. Count one full calendar day as 2 half-day sessions.
Select one: 1 2 3 4 5 6 7 8 9 10 11 12 13 14 Other ______
7. How many patients are typically seen at each clinic session? Select one.
0-10 11-20 21-50 51-100 101-200 200+
8. Approximately how many patients with sickle cell disease does your program serve? Select one.
0-100 101-250 251-500 501-1000 1001-5000 5000+
9. Please estimate the distribution of patients by age in your program:
Age of patient / % of sickle cell population0-4
5-9
10-17
18+
10. Is your program located in a teaching hospital? Select one.
Yes No
11. How many of the following work for your sickle cell program. Please write in number next to each type of health worker and count each person once only.:
____ Pediatric Hematologists
____ Hematologists
____ Pediatricians
____ General medical physicians
____ Nurses
____ Community Health Workers
____ Social Workers
____ Nurse Practitioners
____ Physician Assistant
____ Other ______
12. Is your program associated with a neonatal screening program for sickle cell disease? Select one.
Yes No
12a. If yes, what region does it cover? Select one.
Hospital City Regional National
12b. If yes, how long has your your neonatal screening program been in operation? Select one.
< 6months 6 months–2 years 2–5 years 5-10 years 10+ years
13. When children are diagnosed with sickle cell disease, what method or methods are used? Select all that apply.
__ Quantitative hemoglobin electrophoresis
__ Qualitative hemoglobin electrophoresis
__ High-pressure liquid chromatography (HPLC)
__ Sickling test
__ Genotyping
__ Isoelectric focusing (IEF)
__ Other ______
Counseling
14. For newly diagnosed patients with sickle cell disease, who is most likely to give counseling on preventive care and when to seek care in your program? Select one.
___ Attending/Consultant physician
___ Fellow/Registrar
___ Resident/House officer
___ Nurse
___ Community Health Worker
___ Other: ______
15. If a patient has a fever while your clinic is open, which first step do you advise them to take? Select one.
___ Call someone associated with your program
___ Go to the closest hospital
___ Go to the closest clinic
___ Come to the clinic where your program is located
___ Buy an antibiotic at a pharmacy and self-administer it.
___ Buy an antimalarial at a pharmacy and self-administer it.
Other: ______
16. If a patient has a fever when the clinic is closed (i.e., overnight and weekends), which first step do you advise them to take? Select one.
___ Call someone associated with your program
___ Go to the closest hospital
___ Come to the hospital where your program is located
___ Buy an antibiotic at a pharmacy and self-administer it.
___ Buy an antimalarial at a pharmacy and self-administer it.
Other: ______
17. How often do you advise patients how to use a thermometer? Select one.
Never Almost Never Half the time Almost Always Always
18. How often do you give patients a thermometer? Select one.
Never Almost Never Half the time Almost Always Always
Case Definition
19. What temperature is the definition you use for a fever in sickle cell patients >3 months old? Select all that apply.
37.5
38.0 one time
38.0 twice separated by an hour
38.5
39.0
Other: ______
20. Are thermometers widely available for use during your clinic sessions? Select one.
Never Almost Never Half the time Almost Always Always
21. How are patients usually diagnosed with malaria at your clinic/hospital? Select all that apply.
Rapid diagnostic test Smear Clinical diagnosis
Treatment
22. Does your program or facility have a written management protocol/guideline for patients with sickle cell disease who present with fever? Select one.
Yes No Don’t know
22a If yes, How are individuals trained to use your treatment protocol? Include all individuals working in the emergency department, clinics and wards. Select all that apply.
___ Protocol is posted in hospital locations that receive sickle cell patients
___ New clinicians get an initial training on how to implement the protocol
___ Clinicians get an initial training on how to implement the protocol and follow-up training on a set schedule
___ Clinicians get an initial training on how to implement the protocol and follow-up training on an as-needed basis
23. How often do you treat every newly febrile patient with sickle cell disease with antibiotics? Select one.
Never Almost Never Half the time Almost Always Always
24. How often do you hospitalize febrile patients with sickle cell disease? Select one.
Never Almost Never Half the time Almost Always Always
25. How often do you treat newly febrile patients with sickle cell disease with antimalarials? Select one.
Never Almost Never Half the time Almost Always Always
26. How often are blood cultures available for your patients when febrile? Include blood cultures available at your facility or at a community laboratory. Select one.
Never Almost Never Half the time Almost Always Always
27. Do you obtain a blood culture when a child with sickle cell disease presents to your facility with a fever? Select one.
Never Almost Never Half the time Almost Always Always
28. Do you have data on organisms grown from blood cultures in sickle cell patients during febrile episodes?
Yes No
29. In a newly febrile sickle cell patient with a negative malaria test (if applicable to your region) and NO OBVIOUS SOURCE, what is your first-line antibiotic of choice? Select one.
Drug / IV / IM / OralAmpicillin/amoxicillin
Ampicillin/amoxicillin and gentamicin
Amoxicillin-clavulanate (or alternative penicillin plus beta lactamase inhibitor)
Ceftriaxone
Ciprofloxacin
Metronidazole
Co-trimoxazole (Trimethoprim-sulfamethoxazole)
Cefixime
Other ______
29a. Excluding patients who are worsening clinically, how long do you treat empirically for? Select the closest estimate.
2 days 5 days 7 days 10 days 14 days More than 14 days
30. If your initial antibiotic is IV or IM, do you switch to oral antibiotics if the patient improves? Select one.
No Yes, after 24 hours Yes, after 48 hours Other ______
30a. If yes, what is your oral antibiotic of choice to complete a course of empiric treatment? Select one.
___ Amoxicillin/ampicillin
___ Amoxicillin-clavulanate (or alternative penicillin plus beta lactamase inhibitor)
___ Ciprofloxacin
___ Metronidazole
___ Co-trimoxazole (Trimethoprim-sulfamethoxazole)
___ Cefixime
___ Other______
30b. If yes, how long is the total course of antibiotics? Include IV/IM and oral antibiotics. Select one.
2 days 5 days 7 days 10 days 14 days More than 14 days
31. Would you treat a newly febrile patient with sickle cell disease with oral antibiotics only? Select all that apply.
__ Yes, as first line
__ Yes, only if very well-appearing
__ Yes, only if parenteral (IV/IM) options not available
__ Yes, other reason ______
__ No
31a. If yes, what antibiotic would you use? Select one.
___ Never use oral antibiotics
___ Amoxicillin/ampicillin
___ Amoxicillin-clavulanate (or alternative penicillin plus beta lactamase inhibitor)
___ Ciprofloxacin
___ Metronidazole
___ Co-trimoxazole (Trimethoprim-sulfamethoxazole)
___ Cefixime
___ Other______
31b. If yes, how long is the treatment course? Select one.
2 days 5 days 7 days 10 days 14 days
32. A patient with sickle cell disease presents to your program with a new fever and a positive malaria test. He is well-appearing and has no other obvious source of infection. Do you treat with antibiotics?
Yes No
32a. If no, do you treat with antibiotics if ill-appearing?
Yes No
33. What portion of your patients with new fevers have received ANTIBIOTICS (other than prophylactic penicillin) in the 24 hours prior to presentation at your program or facility? Select one best estimate.
___ >90%
___ 75% - 90%
___ 50%-74%
___ 25-49%
___ <25%
34. What portion of your patients with new fevers have received ANTIMALARIALS in the 24 hours prior to presentation at your program or facility? Select one best estimate.
___ >90%
___ 75% - 90%
___ 50% - 74%
___ 25-49%
___ <25%
Prophylaxis:
35. Do you routinely administer a pneumococcal CONJUGATE vaccine (PCV) in your clinic? Select one.
__Yes, PCV-7 (Prevenar 7)
__Yes, PCV-10 (Synflorix)
__Yes, PCV-13 (Prevenar 13)
__Only if they don’t receive it through the national immunization program
__No, it is not available
__Other ______
36. Do you recommend a pneumococcal POLYSACCHARIDE vaccine (PPV) to patients with sickle cell disease in your clinic?
Yes No Only a subset of patients
37. Who receives penicillin prophylaxis in your patient population? Check one.
__We do not prescribe penicillin prophylaxis
__All children under 5 years old
__Patients under 5 years old and children who have suffered multiple bouts of sepsis, meningitis or pneumonia/acute chest syndrome
__All patients regardless of age
__Patients under 5 years old with certain criteria, specify:
__ Other criteria ______
38. How is penicillin prophylaxis provided? Check one.
__ Given by the sickle cell program or clinic at no cost
__ Purchased by patient or patient’s parent
__ Other ______
39. Do you routinely prescribe pharmaceutical malaria prophylaxis to patients in your sickle cell program?
Yes No
39a. If yes, what do you prescribe?
___ Proguanil (Paludrine)
___ Atovaquone/proguanil (Malarone)
___ Pyrimethamine (Daraprim)
___ Sulfadoxine/pyrimethamine (Fansidar)
___ Mefloquine (Lariam, Mephaquin or Mefliam)
___ Chloroquine
___ Other______
39b. Who do you prescribe it to?
__ All children under 5 years old
__ All children under 5 years old and children who have suffered 1 or more bouts of severe malaria
__ All patients regardless of age
__ Other criteria ______