Torres-Ortuño A, Cuesta-Barriuso R, Nieto-Munuera J, Galindo-Piñana P, López-Pina J-A
Department of Psychiatry and Social Psychology, Faculty of Medicine, University of Murcia, Murcia, Spain.
Department of Physiotherapy, School of Biomedical and Health Sciences, European University of Madrid, Madrid, Spain.
Vox Sang. 2018 May 24. doi: 10.1111/vox.12669.
The recommended treatment in patients with severe haemophilia is prophylaxis. This prevents bleedings and reduces or delays the haemophilic arthropathy. Adherence defined as the follow-up of the patient to the prescriptions of the health professional to his treatment, both pharmacological and modifications in habits or stylelifes. Adherence rates in haemophilia are better than in other chronic diseases, but there remain reasons for nonadherence. The aim was to see if disease behaviour and disease perception together with coping strategies modulate adherence to treatment.
Multicenter cross-sectional descriptive study. Patients recruited in Units of Hemophilia Hospitals and Regional Haemophilia Associations. Twenty-three patients participated The instruments used are as follows: data sheet, SF-36, A36 Hemophilia-Qol, Illness Perception Questionnaire-Revised (IPQ-R), Illness Behavior Questionnaire (IBQ) and Coping Strategies Inventory (CSI) and VERITAS-Pro.
We found that 56% of patients with haemophilia are adherent. The most relevant clinical variables were hemarthrosis, diagnosis of arthropathy and presence of any coinfection, as well as family history, labour status and sociodemographic variables. Age was not a relevant variable in adherence. The worst adherence coincides with poorer quality of life and inadequate coping style. Nonadherent patients show greater conviction of disease, perception of cyclicity, more hypochondriacal behaviour towards the illness and perception concern about possible side effects of medication.
Adherence in haemophilia requires a more experiential approach and individualized education. It is important that professionals take into account the patient's perception, behaviour and attitude towards the disease to achieve a better adaptation of their coping resources.
重度血友病患者的推荐治疗方法是预防治疗。这可预防出血，并减少或延缓血友病性关节病。依从性定义为患者遵循医疗专业人员对其治疗的处方，包括药物治疗以及生活习惯或生活方式的改变。血友病患者的依从率高于其他慢性病，但仍存在不依从的原因。目的是探讨疾病行为、疾病认知以及应对策略是否会调节治疗依从性。
多中心横断面描述性研究。在血友病医院科室和地区血友病协会招募患者。23名患者参与研究。使用的工具如下：数据表、SF - 36、A36血友病生活质量量表、修订版疾病认知问卷（IPQ - R）、疾病行为问卷（IBQ）、应对策略量表（CSI）和VERITAS - Pro。
我们发现56%的血友病患者具有依从性。最相关的临床变量是关节积血、关节病诊断、是否存在任何合并感染，以及家族史、劳动状况和社会人口统计学变量。年龄在依从性方面不是一个相关变量。依从性最差的情况与较差的生活质量和不适当的应对方式相吻合。不依从的患者对疾病表现出更强的信念、周期性认知、对疾病更多的疑病行为以及对药物可能的副作用的认知担忧。
血友病的依从性需要更具经验性的方法和个性化教育。专业人员考虑患者对疾病的认知、行为和态度，以更好地调整其应对资源，这一点很重要。
