Van Creveldkliniek, University Medical Center Utrecht, Utrecht, The Netherlands.
Dutch Association for Haemophilia Patients (NVHP), Nijkerk, The Netherlands.
Haemophilia. 2021 Jul;27(4):e434-e440. doi: 10.1111/hae.14320. Epub 2021 May 7.
Adherence to prophylactic treatment (prophylaxis) in persons with haemophilia is challenging and has been reported at only ±50%. Acceptance problems are one of the main reasons for non-adherence in haemophilia. An evidence-based intervention was developed based on an acceptance and commitment therapy (ACT) approach.
To evaluate a tailored intervention focused on illness acceptance in adults with haemophilia who were prescribed prophylaxis.
A pre-post study was executed in adults with haemophilia who were prescribed prophylaxis. A series of 8 2-hour group trainings were held, including 3-8 participants/series. Adherence (VERITAS-Pro, optimum 0), health-related quality of life (HRQoL, SF-36, optimum 100) and illness perception (BIPQ, optimum 0) were measured at start, after six months and 12 months and analysed using Wilcoxon signed-rank test.
Twenty-four patients (median age 47 years, range 27-74) were included. After 12 months, adherence improved in 68% of patients, quality of life in 48% and illness perception in 31%. Adherence (total score) improved from 35 to 25 (P<0.01). HRQoL showed clinically relevant improvement in domains of social-functioning (P = 0.04), role-emotional, physical-functioning, role-physical and bodily pain. Illness perception improved statistically significant on domains of affect (P = 0.01), concern (P = 0.01) and understanding (P = 0.04). Patients evaluated the training useful, an eye-opener, a personal enrichment and insightful.
The tailored group intervention resulted in significant improvement of adherence, quality of life and illness perception. Based on our current experience, we have implemented it in clinical practice and collaborate with the patient association to make it available for all Dutch people with haemophilia.
在患有血友病的人群中，坚持预防性治疗（预防）具有挑战性，据报道只有±50%的患者能够坚持治疗。接受问题是血友病患者不依从的主要原因之一。本研究基于接受与承诺疗法（ACT）方法，开发了一种循证干预措施。
评估针对接受预防性治疗的血友病成人患者的疾病接受度的定制干预措施。
对接受预防性治疗的血友病成人患者进行了一项预-后研究。共进行了 8 次 2 小时的小组培训，每次培训包括 3-8 名参与者/系列。在开始时、6 个月和 12 个月时测量了依从性（VERITAS-Pro，最佳 0）、健康相关生活质量（SF-36，最佳 100）和疾病认知（BIPQ，最佳 0），并使用 Wilcoxon 符号秩检验进行分析。
共纳入 24 例患者（中位年龄 47 岁，范围 27-74 岁）。12 个月后，68%的患者依从性提高，48%的患者生活质量提高，31%的患者疾病认知提高。依从性（总分）从 35 提高到 25（P<0.01）。HRQoL 在社会功能（P=0.04）、角色情感、身体功能、角色身体和躯体疼痛等领域有显著的临床改善。疾病认知在情感（P=0.01）、关注（P=0.01）和理解（P=0.04）等方面有统计学意义的改善。患者认为培训有用、开眼界、个人充实和有见地。
定制的小组干预措施显著提高了依从性、生活质量和疾病认知。基于我们目前的经验，我们已经将其纳入临床实践，并与患者协会合作，使所有荷兰血友病患者都能受益。
