Department of Haematology and Immunology, Southeast Haemophilia Treatment Centre, College of Medicine, University of Nigeria Ituku-Ozalla Campus, Enugu, Nigeria.
Department of Haematology and Blood Transfusion, Gombe State University/Federal Teaching Hospital Gombe, Gombe, Nigeria.
PLoS One. 2023 Feb 2;18(2):e0264600. doi: 10.1371/journal.pone.0264600. eCollection 2023.
In Nigeria, low-dose prophylaxis is the standard of care as it reduces bleeding, development of target joints, arthropathy, and improvement of quality of life. Non-adherence or poor adherence can prevent the achievement of these outcomes. The levels and determinants of (non-)adherence among persons with haaemophilia (PWH) in Sub-Saharan Africa have not been evidenced. We aimed to evaluate self-reported adherence among PWH, provide evidence of determinants/predictors of adherence, and establish the associations between nonadherence and presence of target joints and annualized bleed rate. A cross-sectional survey of 42 participants on low-dose prophylaxis recruited during outpatient appointments in 5 haemophilia treatment centers in Nigeria. We used the validated Haemophilia Regimen Treatment Adherence Scale- Prophylaxis (VERITAS -Pro), 24 questions on six subscales (time, dose, plan, remember, skip, and communicate) questionnaire. The options of VERITAS -Pro were represented in a 5 Likert scale and the possible subscale ranged from 4 points (most adherent) to 20 points (least adherent) and the possible total score ranged from 24 (most adherent) to 120 (least adherent) the cutoff for overall adherence put at > 61 to indicate nonadherence. Information on the presence of target joints, the number of target joints, and annualized bleeding rates were collected from medical files. The mean age of the participants was 9.79 (6.29) years, with 96.6% having hemophilia A and 79.3% having target joints. Overall adherence to the prophylaxis regimen was 81.0%. The mean total VERITAS-Pro for the adherent group and the non-adherent group was 37.35 ±9.08 and 63.0± 6.37, respectively. The mean subscale scores for the adherent group ranged from 0.67 (communication) to 8.68 (planning), while the mean subscale scores range from 1.0 communication to 13.88 (planning) for the nonadherent group. The mean difference of all except the dosing subscale was statistically significant with p<0.05. Only the skipping subscale showed a statistically significant positive correlation with ABR in the non-adherent group p = 0.02. The findings indicate that adherence was very good, and most were in communication with their treatment centers. The skipping subscale was significantly associated with ABR for the nonadherent group. Interventions aimed at improving adherence are the key to better treatment outcomes. A multicenter study was needed to assess the reason for poor adherence.
在尼日利亚,低剂量预防是标准的治疗方法,因为它可以减少出血、目标关节的发展、关节病和生活质量的改善。不遵守或不遵守规定可能会妨碍实现这些结果。在撒哈拉以南非洲地区,血友病患者(PWH)的(不)遵医嘱的程度和决定因素尚未得到证实。我们旨在评估 PWH 的自我报告的遵医嘱情况,提供遵医嘱的决定因素/预测因素的证据,并确定不遵医嘱与目标关节的存在和年化出血率之间的关联。这是一项在尼日利亚 5 个血友病治疗中心的门诊就诊期间招募的 42 名低剂量预防参与者的横断面调查。我们使用了经过验证的血友病治疗方案治疗依从性量表-预防版(VERITAS -Pro),该量表有 6 个分量表(时间、剂量、计划、记忆、跳过和沟通)共 24 个问题。VERITAS -Pro 的选项以 5 点李克特量表表示,可能的分量表范围从 4 分(最遵守医嘱)到 20 分(最不遵守医嘱),可能的总分范围从 24 分(最遵守医嘱)到 120 分(最不遵守医嘱),总体遵医嘱的截断值设定为>61 表示不遵医嘱。从病历中收集了目标关节的存在、目标关节的数量和年化出血率的信息。参与者的平均年龄为 9.79(6.29)岁,96.6%为血友病 A,79.3%有目标关节。总体而言,预防方案的遵医嘱率为 81.0%。在遵守医嘱组和不遵守医嘱组中,VERITAS -Pro 的平均总分分别为 37.35±9.08 和 63.0±6.37。在遵守医嘱组中,各分量表的平均得分为 0.67(沟通)至 8.68(计划),而在不遵守医嘱组中,各分量表的平均得分为 1.0(沟通)至 13.88(计划)。除了剂量分量表外,其余分量表的平均差异均具有统计学意义(p<0.05)。只有跳过分量表在不遵守医嘱组中与 ABR 呈显著正相关(p = 0.02)。研究结果表明,依从性非常好,大多数人都与治疗中心保持沟通。跳过分量表与不遵守医嘱组的 ABR 显著相关。提高依从性的干预措施是实现更好治疗效果的关键。需要进行多中心研究以评估依从性差的原因。