VERITAS‐Pro: a new measure of adherence to prophylactic regimens in haemophilia

Abstract

Prophylactic treatment is recommended for severe haemophilia. Non-adherence to a prophylactic regimen can limit treatment effectiveness and compromise outcomes. The aim of this study is to validate a new prophylactic treatment adherence scale entitled Validated Hemophilia Regimen Treatment Adherence Scale--Prophylaxis (VERITAS-Pro), a self-/parent-report questionnaire consisting of 24 questions on six (four-item) subscales (Time, Dose, Plan, Remember, Skip, Communicate) that takes approximately 10 min to complete and is currently available in English only. Participants were recruited to complete the VERITAS-Pro for validation and reliability analysis; and observers were recruited for inter-rater reliability analysis. Validation measures included subjective adherence ratings from participants and providers and the total number of recommended infusions administered as obtained from infusion logs. Data were evaluated for the entire sample and for parent-report and self-report subsamples. The study sample included 67 males, 53 (79.1%) diagnosed with severe FVIII deficiency. Internal consistency for the total VERITAS-Pro score and all subscales was good to excellent; test-retest reliability correlations were very strong. Validation measures were strongly correlated with VERITAS-Pro scores. The VERITAS-Pro is a reliable and valid measure of adherence to prophylactic treatment of haemophilia. The VERITAS-Pro has greater utility than a global or informal rating of adherence because it represents a quantified and validated measure of adherence from the patient's perspective and it divides adherence into specific areas, allowing insight into particular issues underlying non-adherence. This tool may increase sensitivity to adherence problems and allow more targeted interventions to enhance adherence.

Adherence to Prophylaxis in Adolescents and Young Adults with Severe Haemophilia: A Quantitative Study with Patients

“…The Validated Hemophilia Regimen Treatment Adherence Scale-Prophylaxis (VERITAS-Pro) [25] is a 24-item measure of self-reported adherence to prophylaxis among people with haemophilia. The scale consists of six sub-scales which examine the extent to which participants take their injections at the recommended time ( Timing ), use the recommended dose ( Dosing ), plan ahead to ensure they have enough supplies ( Planning ), remember to take their injections ( Remembering ), skip injections ( Skipping ) and communicate with the haemophilia centre appropriately ( Communicating ).…”

“…It is possible that there are different causes of these different types of adherence, but they have not been reliably separated in the literature on adherence to prophylaxis. Therefore, this study aimed to assess adherence reported by YPH themselves, using the VERITAS-Pro (Validated Hemophilia Regimen Treatment Adherence Scale—Prophylaxis [12]) that assesses different dimensions of adherence separately.…”

Report of the Fifth Meeting of the International Network for Pediatric Hemophilia: a focus on prophylaxis and immune tolerance induction

“…The adherence scale study led by Natalie Duncan and Amy Shapiro, both from Indiana Hemophilia and Thrombosis Center, Indianapolis, IN, USA has successfully moved forward with two published articles on the hemophilia regimen adherence scales VERITAS-PRN and VERITAS-PRO [1,2]. There are now new translations of the adherence scales completed in Spanish and Swedish as well as associated studies underway.…”

Women leaders in hematology: Inspirations & insights

“…I do speak to patients on that level. I hope they did not think I was angry at them when they experienced adherence issues, but I certainly did speak to them about their obstacles, and tried to help them understand that it was not really in their best interest or good for them to miss prophylactic infusions [56,57]. Most children rebel against their parents and their authority; oftentimes, it is easier for someone outside the family unit to say, "This is not what you should fight over-choose something else.…”