Protocol - Adherence to Prophylactic Clotting Factor Treatment Regimens in Hemophilia
The Validated Hemophilia Regimen Treatment Adherence Scale - Prophylaxis (VERITAS-Pro™) is a 24-item, self-administered questionnaire that includes measures adherence to a prophylactic treatment regimen of infused Factor VIII or Factor IX concentrate.
The Validated Hemophilia Regimen Treatment Adherence Scale - Prophylaxis (VERITAS-Pro™) is a copyrighted instrument. Investigators should contact Natalie A. Duncan at the Indiana Hemophilia and Thrombosis Center to obtain a copy of the scale (see "Source").
Summary of the Validated Hemophilia Regimen Treatment Adherence Scale - Prophylaxis (VERITAS-Pro™)
The Validated Hemophilia Regimen Treatment Adherence Scale - Prophylaxis (VERITAS-Pro™) is a 24-item self-administered questionnaire that includes six subscales: Time, Dose, Plan, Remember, Skip, and Communicate. Each subscale includes four items which are rated on a 5-point Likert scales ranging from "Always" to "Never." Items can be scored in different directions depending on whether their wording reflects adherence or non-adherence. Each rating on the 5-point scale has a numeric score; the response indicating the "best" adherence is 1 point and the response indicating the "worst" adherence is 5 points. Subscale scores range from four points (most adherent) to 20 points (least adherent). Total scores range from 24 (most adherent) to 120 (least adherent).
The Validated Hemophilia Regimen Treatment Adherence Scale - Prophylaxis (VERITAS-Pro™) is a copyrighted instrument. Investigators should contact Natalie A. Duncan at the Indiana Hemophilia and Thrombosis Center to obtain a copy of the scale (see "Source").None
Personnel and Training Required
|Specialized requirements for biospecimen collection||No|
|Average time of greater than 15 minutes in an unaffected individual||No|
Mode of Administration
Self- or proxy-administered questionnaire
Infant, Toddler, Child, Adolescent, Adult, Senior, Pregnancy
Patient or parent/caregiver with the primary responsibility for administering prophylactic Factor VIII or Factor IX infusions.
The VERITAS-Pro™ is a valid, reliable, self-administered questionnaire that is easy to use, score, and interpret.
Process and Review
Protocol Name from Source
Validated Hemophilia Regimen Treatment Adherence Scale - Prophylaxis (VERITAS-Pro(TM))
The Validated Hemophilia Regimen Treatment Adherence Scale - Prophylaxis (VERITAS-Pro™) may be obtained by contacting:
Natalie A. Duncan, MPH
Indiana Hemophilia and Thrombosis Center
8402 Harcourt Road
Indianapolis, IN 46260, USA
Telephone: +1 317 871 0011 (ext. 273)
Fax: +1 317 829 7786
Duncan, N. A., Kronenberger W. G., Roberson C. P., & Shapiro A. D. (2010). VERITAS-Pro™: A new measure of adherence to prophylactic regimens in haemophilia. Haemophilia, 16, 247-255.
Thornburg, C. D., & Duncan, N. A. (2017). Treatment adherence in hemophilia. Patient Preference and Adherence, 11, 1677-1686.
van Os, S. B., Troop, N. A., Sullivan, K. R., & Hart, D. P. (2017). Adherence to prophylaxis in adolescents and young adults with severe haemophilia: A quantitative study with patients. PLoS One, 12(1), e0169880.
|Variable Name||Variable ID||Variable Description||dbGaP Mapping|
|PX911601000000||Protocol 911601 - proprietary. Check DCW for more||N/A|
Patient Recall of Clotting Factor Administration
May 7, 2019
Patient-reported adherence to a recommended self-administered prophylactic treatment regimen of clotting factor concentrate.
In hemophilia, adherence to recommended prophylactic treatment regimens has been shown to increase treatment effectiveness and is associated with better clinical outcomes (e.g., annual bleeding rate) and quality of life.
adherence to prophylactic clotting factor treatment regimens in hemophilia, hemophilia, prophylactic treatment, hemophilia A, hemophilia B, Factor VIII, FVIII, Factor IX, FIX, episodic treatment, adherence
|Protocol ID||Protocol Name|
|911601||Adherence to Prophylactic Clotting Factor Treatment Regimens in Hemophilia|
|911602||Adherence to Episodic Clotting Factor Treatment Regimens in Hemophilia|
Zdziarska, J., et al. (2022) Adherence to prophylactic treatment in adult patients with severe hemophilia in Poland. Polish Archives of Internal Medicine-Polskie Archiwum Medycyny Wewnetrznej. 2022 August; 132(8-Jul): 9. doi: 10.20452/pamw.16280