Torres-Ortuño Ana, Cuesta-Barriuso Rubén, Nieto-Munuera Joaquín, Castiello-Munuera Álvaro, Moreno-Moreno Manuel, López-Pina José Antonio
Department of Psychiatry and Social Psychology, Faculty of Medicine, University of Murcia, Murcia, Spain.
Association of Hemophilia, Murcia, Spain.
Patient Prefer Adherence. 2020 Mar 3;14:455-465. doi: 10.2147/PPA.S233601. eCollection 2020.
To build a multidimensional questionnaire of adherence for a patient with hemophilia that includes not only clinical but also psychosocial aspects.
One hundred and forty-six patients with haemophilia (A and B) were recruited from several Hemophilia Treatment Centers for this study. The recruitment was performed through a personal interview (20-25 mins for each patient). A literature review was carried out (different databases). In the first version (136 items), all items were subjected to an external judgment (experts in hemophilia) and also presented and discussed with a group of patients. It was made a study of content validity and homogeneity index and reliability coefficients of score were calculated with an alpha coefficient. Empirical validation was made with Pearson correlation.
The Haemo-Adhaesione scale was composed of 5 dimensions and 10 questions about basic haemophilia concepts. It was shown to be valid and reliable to assess adherence in the Spanish population. Its internal consistency was good in all dimensions. The Rasch model was used to confirm the multidimensional structure of the scale. Significant and negative correlations were observed with the VERITAS-Pro and VERITAS-PRN scale in all dimensions, and in the total score.
The Haemo-Adhaesione scale is a good measure of adherence for PWH. Its multidimensional structure favors the inclusion of the objective and subjective aspects implicit in its definition, as well as its dynamic nature. Patients with greater adherence are those who have more awareness of their disease, and as a result, they are more compliant with prescription and their self-care. It also discriminates between patients who follow one treatment or another.
构建一份针对血友病患者的多维依从性问卷，该问卷不仅涵盖临床方面，还包括社会心理层面。
本研究从多个血友病治疗中心招募了146例血友病（A 型和 B 型）患者。通过个人访谈（每位患者20 - 25分钟）进行招募。开展了文献综述（不同数据库）。在第一版（136项）中，所有条目都经过了外部评判（血友病专家），并向一组患者展示和讨论。进行了内容效度研究，计算了同质性指数，并使用α系数计算得分的可靠性系数。通过皮尔逊相关性进行实证验证。
血友病依从性量表由5个维度和10个关于血友病基本概念的问题组成。在西班牙人群中，该量表被证明在评估依从性方面有效且可靠。其在所有维度的内部一致性良好。使用拉施模型确认了量表的多维结构。在所有维度以及总分中，均观察到与VERITAS - Pro和VERITAS - PRN量表存在显著的负相关。
血友病依从性量表是评估血友病患者依从性的良好工具。其多维结构有利于纳入定义中隐含的客观和主观方面，以及其动态性质。依从性较高的患者是那些对自身疾病有更强认识的患者，因此他们更能遵守医嘱并进行自我护理。它还能区分接受不同治疗的患者。
