Haemophilia's Heartland: Pain, Poverty and Patient Care in Faisalabad

IF 3 2区医学 Q2 HEMATOLOGY

Haemophilia Pub Date : 2025-02-21 DOI:10.1111/hae.70009

Eesha Yaqoob, Shiza Aftab, Noor-ul-Ain Shah, Nimirta Sahitia, Saad Javed

{"title":"Haemophilia's Heartland: Pain, Poverty and Patient Care in Faisalabad","authors":"Eesha Yaqoob, Shiza Aftab, Noor-ul-Ain Shah, Nimirta Sahitia, Saad Javed","doi":"10.1111/hae.70009","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Introduction</h3>\n \n <p>Haemophilia is an inherited bleeding disorder that causes significant pain and disability. Haemophilia A and B are the most common, with HemA affecting more men and being four times more prevalent.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>A cross-sectional study was conducted in Faisalabad, Pakistan, to assess pain severity in haemophilia patients based on sociodemographic factors and management approaches. Data were collected through structured interviews and analysed using SPSS version 27.0, examining associations between variables and pain severity.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>A sample of 200 patients was selected from the 800 registered patients at a haemophilia treatment centre (HTC) in Faisalabad. All participants had severe haemophilia, with 65.5% residing in rural areas. Severe pain was reported by 58% of patients, with higher prevalence among rural residents (35% vs. 22.5% urban, <i>p</i> = 0.004) and those with monthly income below Rs. 15,000 (21%, <i>p</i> < 0.001). Plasma transfusion significantly reduced severe pain risk (OR = 0.59, 95% CI: 0.42–0.83, <i>p</i> = 0.003), while self-management methods increased it (OR = 1.79, 95% CI: 1.06–3.02, <i>p</i> = 0.03). Distance from treatment centres significantly impacted pain severity, with 21.5% of patients living within 10–50 miles reporting severe pain. Management practices significantly influenced patient outcomes (<i>p</i> < 0.001).</p>\n </section>\n \n <section>\n \n <h3> Conclusion</h3>\n \n <p>Patients face significant pain management challenges owing to sociodemographic factors, low income and limited access to specialized care. Addressing these gaps requires early diagnosis, better access to treatment centres and multidisciplinary pain management strategies. While geographic and economic barriers are considered, future research should include detailed data on rural healthcare quality, assimilate longitudinal data and delve into the links between mental health, pain severity and treatment ease of access.</p>\n </section>\n </div>","PeriodicalId":12819,"journal":{"name":"Haemophilia","volume":"31 2","pages":"231-238"},"PeriodicalIF":3.0000,"publicationDate":"2025-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Haemophilia","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/hae.70009","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"HEMATOLOGY","Score":null,"Total":0}

引用次数: 0

Abstract

Introduction

Haemophilia is an inherited bleeding disorder that causes significant pain and disability. Haemophilia A and B are the most common, with HemA affecting more men and being four times more prevalent.

Methods

A cross-sectional study was conducted in Faisalabad, Pakistan, to assess pain severity in haemophilia patients based on sociodemographic factors and management approaches. Data were collected through structured interviews and analysed using SPSS version 27.0, examining associations between variables and pain severity.

Results

A sample of 200 patients was selected from the 800 registered patients at a haemophilia treatment centre (HTC) in Faisalabad. All participants had severe haemophilia, with 65.5% residing in rural areas. Severe pain was reported by 58% of patients, with higher prevalence among rural residents (35% vs. 22.5% urban, p = 0.004) and those with monthly income below Rs. 15,000 (21%, p < 0.001). Plasma transfusion significantly reduced severe pain risk (OR = 0.59, 95% CI: 0.42–0.83, p = 0.003), while self-management methods increased it (OR = 1.79, 95% CI: 1.06–3.02, p = 0.03). Distance from treatment centres significantly impacted pain severity, with 21.5% of patients living within 10–50 miles reporting severe pain. Management practices significantly influenced patient outcomes (p < 0.001).

Conclusion

Patients face significant pain management challenges owing to sociodemographic factors, low income and limited access to specialized care. Addressing these gaps requires early diagnosis, better access to treatment centres and multidisciplinary pain management strategies. While geographic and economic barriers are considered, future research should include detailed data on rural healthcare quality, assimilate longitudinal data and delve into the links between mental health, pain severity and treatment ease of access.

查看原文本刊更多论文

血友病的心脏地带：费萨拉巴德的痛苦、贫穷和病人护理。

血友病是一种遗传性出血性疾病，可引起明显的疼痛和残疾。血友病A和B是最常见的，HemA影响更多的男性，患病率是血友病A的四倍。方法：在巴基斯坦费萨拉巴德进行了一项横断面研究，根据社会人口统计学因素和管理方法评估血友病患者的疼痛严重程度。通过结构化访谈收集数据，并使用SPSS 27.0版本进行分析，检查变量与疼痛严重程度之间的关联。结果：从费萨拉巴德血友病治疗中心（HTC）的800名注册患者中选择200名患者作为样本。所有参与者均患有严重血友病，其中65.5%居住在农村地区。58%的患者报告有严重疼痛，农村居民（35%对22.5%的城市居民，p = 0.004）和月收入低于15,000卢比的患者（21%,p < 0.001）的患病率更高。血浆输注显著降低了严重疼痛风险（OR = 0.59, 95% CI: 0.42 ~ 0.83, p = 0.003），而自我管理方法增加了严重疼痛风险（OR = 1.79, 95% CI: 1.06 ~ 3.02, p = 0.03）。距离治疗中心的距离显著影响疼痛严重程度，居住在10-50英里范围内的21.5%的患者报告严重疼痛。管理实践显著影响患者预后（p < 0.001）。结论：由于社会人口因素、低收入和获得专业护理的机会有限，患者面临着重大的疼痛管理挑战。解决这些差距需要早期诊断、更好地获得治疗中心和多学科疼痛管理战略。在考虑地理和经济障碍的同时，未来的研究应包括农村医疗保健质量的详细数据，吸收纵向数据，并深入研究心理健康、疼痛严重程度和治疗可及性之间的联系。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊

Haemophilia 医学-血液学

CiteScore

6.50

自引率

28.20%

发文量

226

审稿时长

3-6 weeks

期刊介绍： Haemophilia is an international journal dedicated to the exchange of information regarding the comprehensive care of haemophilia. The Journal contains review articles, original scientific papers and case reports related to haemophilia care, with frequent supplements. Subjects covered include: clotting factor deficiencies, both inherited and acquired: haemophilia A, B, von Willebrand''s disease, deficiencies of factor V, VII, X and XI replacement therapy for clotting factor deficiencies component therapy in the developing world transfusion transmitted disease haemophilia care and paediatrics, orthopaedics, gynaecology and obstetrics nursing laboratory diagnosis carrier detection psycho-social concerns economic issues audit inherited platelet disorders.