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爱尔兰血友病个性化治疗方法(iPATH)研究中中重度血友病成年患者的疼痛与功能障碍

Pain and functional disability amongst adults with moderate and severe haemophilia from the Irish personalised approach to the treatment of haemophilia (iPATH) study.

作者信息

Kennedy Megan, O' Mahony Brian, Roche Sheila, McGowan Mark, Singleton Evelyn, Ryan Kevin, O' Connell Niamh M, Pipe Steven W, Lavin Michelle, O' Donnell James S, Turecek Peter L, Gormley John

机构信息

Discipline of Physiotherapy, Trinity Centre for Health Sciences, Trinity College Dublin, St. James's Hospital, Dublin, Ireland.

Irish Haemophilia Society, Dublin, Ireland.

出版信息

Eur J Haematol. 2022 Jun;108(6):518-527. doi: 10.1111/ejh.13763. Epub 2022 Mar 30.

Abstract

OBJECTIVES

To establish the prevalence of pain and functional disability in Irish adults with moderate and severe haemophilia, and to examine demographic and lifestyle influences.

METHODS

Males ≥18 years with moderate or severe haemophilia participated. Pain and function were examined using the PROBE questionnaire.

RESULTS

Of 49 participants [median age 44 (IQR 32, 52) years], most had severe haemophilia (Factor VIII = 30; Factor IX = 13) and were on regular prophylaxis (88%). Those with moderate haemophilia (Factor VIII = 5; Factor IX = 1) treated on demand (12%). Acute (72%) and chronic pain (71%), functional difficulties (58%), and analgesic requirements (92%) were prevalent. Age was significantly associated with more advanced haemophilic arthropathy (p = .002), chronic pain (p = .029) and functional difficulties (p = .036). Adults who reported chronic pain commenced prophylaxis significantly later in life [32 (20, 51) vs. 8 (1, 23) years; p = .004]. Physical activity was significantly lower in those with functional difficulties (p < .05). A disparity between self-perceived 'target joints' and clinically defined target joints was also identified (76% vs. 23%).

CONCLUSION

Haemophilic arthropathy, pain and functional disability were prevalent amongst Irish adults with moderate and severe haemophilia. Age-dependent lifestyle, analgesic and treatment influences on pain and function warrant further investigation.

摘要

目的

确定爱尔兰中重度血友病成年患者疼痛和功能障碍的患病率,并研究人口统计学和生活方式的影响。

方法

纳入年龄≥18岁的中重度血友病男性患者。使用PROBE问卷对疼痛和功能进行评估。

结果

49名参与者[中位年龄44(四分位间距32,52)岁],大多数患有重度血友病(凝血因子VIII = 30;凝血因子IX = 13),且接受规律预防治疗(88%)。中度血友病患者(凝血因子VIII = 5;凝血因子IX = 1)按需治疗(12%)。急性疼痛(72%)、慢性疼痛(71%)、功能困难(58%)和镇痛需求(92%)普遍存在。年龄与更严重的血友病性关节病(p = 0.002)、慢性疼痛(p = 0.029)和功能困难(p = 0.036)显著相关。报告有慢性疼痛的成年人开始预防治疗的时间明显晚于同龄人[32(20,51)岁对8(1,23)岁;p = 0.004]。有功能困难的患者身体活动水平显著较低(p < 0.05)。还发现自我感知的“目标关节”与临床定义的目标关节之间存在差异(76%对23%)。

结论

中重度血友病的爱尔兰成年患者中,血友病性关节病、疼痛和功能障碍普遍存在。年龄相关的生活方式、镇痛和治疗对疼痛和功能的影响值得进一步研究。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/e1bb/9311204/f7bea9dc6c7f/EJH-108-518-g001.jpg

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