Adherence to on-demand treatment regimen and bleeding outcome

Abstract

Objectives: This study aims to evaluate self-reported/parent-reported adherence to on-demand therapy among persons with hemophilia. Material and Methods: A cross-sectional survey of 55 participants receiving on-demand therapy recruited during outpatient appointments in 5 hemophilia treatment centers (HTCs) across Nigeria using the validated Hemophilia Regimen Treatment Adherence Scale-on-demand (Validated Hemophilia Regimen Treatment Adherence Scale - PRN; VERITAS-PRN) with 24 questions on six (four-item) subscales (treat, time, dose, plan, remember, and communicate). The options of VERITAS -PRN were represented in 5 Likert scale and possible subscale ranged from 4 points (most adherent) to 20 points (least adherent) and possible total score ranging from 24 (most adherent) to 120 (least adherent). The cut-off for overall adherence is put at >61 to indicate non-adherence. Information on the presence of target joints and annualized bleeding rates were collected from medical files. Result: Of the 55 participants, 94.1% both had hemophilia A and target joints. The majority 51 (92.7%) had scores indicating non-adherence. The mean age of non-adherent and adherent participants was 19 (13.9) years and 24 (13.23) years, respectively. For the non-adherent, the overall mean score was 68.05 (8.54). Subscale scores range from 9.38 (treat) to 15.00 (remember). All subscales showed significant difference in the overall adherence between adherent and non-adherent participants with a P < 0.05. There was a significant association between the mean log of the number of target joints and the communicating subscale for the non-adherent group (r-0.61 P = 0.046). Conclusion: The findings indicate that adherence is generally poor and there is high frequency of target joints among them. Efforts should be made to improve adherence to treatment which may reduce target joints and ultimately improve joint health.