van Os Sandra B, Troop Nick A, Sullivan Keith R, Hart Daniel P
Psychology and Sport Sciences Department, School of Life and Medical Sciences, University of Hertfordshire, Hatfield, United Kingdom.
The Royal London Hospital Haemophilia Centre, Barts Health NHS Trust, London, United Kingdom.
PLoS One. 2017 Jan 19;12(1):e0169880. doi: 10.1371/journal.pone.0169880. eCollection 2017.
haemophilia is an inherited bleeding disorder caused by a deficiency in one of the blood coagulation factors. For people affected by severe haemophilia, the deficiency can cause spontaneous internal bleeding. Most young people with severe haemophilia in the UK follow a preventative treatment regimen (prophylaxis) consisting of several intravenous injections of factor concentrate each week. There is good evidence that prophylaxis reduces bleeds whilst also improving quality of life. However, levels of adherence among young people with haemophilia reported in the existing literature vary widely and are predominately based on estimations made by healthcare professionals and parents. Additionally, drivers of (non)adherence among young people specifically have not been evidenced.
to assess self-reported adherence among young people with haemophilia, provide evidence of psychosocial predictors of adherence, and to establish the associations between non-adherence and number of bleeds and hospital visits.
91 participants were recruited during outpatient appointments in 13 haemophilia centres across England and Wales, and invited to complete a questionnaire assessing self-reported adherence (VERITAS-Pro), Haemophilia-related pain and impact of pain, Illness Perceptions, Beliefs about Medications, Self-efficacy, Outcome expectations, Positive and Negative Affect, and Social support. Number of hospital visits and bleeds during the previous six months were collected from medical files.
Of 78 participants with complete data, just 18% had scores indicating non-adherence. Psychosocial predictors differed between intentional (skipping) and un-intentional (forgetting) non-adherence. Overall, however, better adherence was reported where participants perceived the need for prophylaxis was greater than their concern over taking it as well as having a positive expectancy of its effectiveness, good social support and a stronger emotional reaction to having haemophilia.
The findings indicate that adherence is generally good, and that assessing illness and treatment beliefs, social support and outcome expectations may play a valuable role in identifying which individuals are at risk of non-adherence. Interventions aimed at improving adherence should particularly consider improving social support, reducing patients' concerns about prophylaxis, increasing their belief in the necessity of prophylaxis, and increasing positive outcome expectations.
血友病是一种遗传性出血性疾病，由血液凝固因子之一的缺乏引起。对于受严重血友病影响的人来说，这种缺乏会导致自发性内出血。英国大多数患有严重血友病的年轻人遵循预防性治疗方案（预防），即每周进行几次静脉注射凝血因子浓缩物。有充分证据表明，预防措施可减少出血，同时提高生活质量。然而，现有文献报道的血友病年轻人的依从性水平差异很大，且主要基于医疗保健专业人员和家长的估计。此外，尚未有证据证明年轻人（不）依从的驱动因素。
评估血友病年轻人自我报告的依从性，提供依从性的心理社会预测因素的证据，并确定不依从与出血次数和医院就诊次数之间的关联。
在英格兰和威尔士的13个血友病中心的门诊预约期间招募了91名参与者，并邀请他们完成一份问卷，评估自我报告的依从性（VERITAS-Pro）、与血友病相关的疼痛及疼痛影响、疾病认知、对药物的信念、自我效能感、结果期望、积极和消极情绪以及社会支持。从医疗档案中收集前六个月的医院就诊次数和出血次数。
在78名有完整数据的参与者中，只有18%的得分表明不依从。有意（漏用）和无意（忘记）不依从的心理社会预测因素有所不同。然而，总体而言，当参与者认为预防的必要性大于对接受预防的担忧，对其有效性有积极期望、获得良好的社会支持以及对患有血友病有更强烈的情绪反应时，报告的依从性更好。
研究结果表明依从性总体良好，评估疾病和治疗信念、社会支持及结果期望可能在识别哪些个体有不依从风险方面发挥重要作用。旨在提高依从性的干预措施应特别考虑改善社会支持、减少患者对预防的担忧、增强他们对预防必要性的信念以及提高积极的结果期望。
