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西班牙和萨尔瓦多血友病患者的生活质量、疾病认知及应对策略:一项比较研究

Quality of Life, Perception of Disease and Coping Strategies in Patients with Hemophilia in Spain and El Salvador: A Comparative Study.

作者信息

Cuesta-Barriuso Rubén, Torres-Ortuño Ana, Nieto-Munuera Joaquín, López-Pina José Antonio

机构信息

Department of Physiotherapy, University of Murcia, Murcia, Spain.

Royal Victoria Eugenia Foundation, Madrid, Spain.

出版信息

Patient Prefer Adherence. 2021 Aug 21;15:1817-1825. doi: 10.2147/PPA.S326434. eCollection 2021.

Abstract

BACKGROUND

Hemophilia is characterized by the development of joint bleeds that cause long-term joint damage (hemophilic arthropathy). Joint damage leads to disability and affects psychosocial aspects in patients with hemophilia.

OBJECTIVE

To compare the clinical situation, perception of disease and quality of life, and coping strategies in adult patients with hemophilia in El Salvador and Spain.

METHODS

In this comparative clinical study, 43 patients with hemophilia aged between 18 and 50 years old from Spain and El Salvador participated. After obtaining the patients' consent, they completed the Illness Perception Questionnaire-Revised (IPQ-R), Hemophilia-QoL and Inventory of Coping strategies questionnaires. Joint status was assessed using the Hemophilia Joint Health Score and based on a record of clinical and treatment data.

RESULTS

Hemophilia patients from Spain showed an improved perception of quality of life (p <0.05), although there were only differences in the self-criticism variable (p = 0.04) for coping strategies. Joint damage and age correlated (p <0.05) negatively with perception of disease, perceived quality of life and coping strategies in both populations. There were differences (p <0.05) between the two populations based on HIV and HCV coinfections in perception of disease and perceived quality of life.

CONCLUSION

Patients with hemophilia in El Salvador exhibit a poorer perception of disease and quality of life. Despite differences in access to treatment from one country to the other, there is no difference in coping with the disease. Older patients are better able to adapt to the disease.

摘要

背景

血友病的特征是关节出血,可导致长期关节损伤(血友病性关节病)。关节损伤会导致残疾,并影响血友病患者的心理社会状况。

目的

比较萨尔瓦多和西班牙成年血友病患者的临床情况、疾病认知和生活质量以及应对策略。

方法

在这项比较性临床研究中,来自西班牙和萨尔瓦多的43名年龄在18至50岁之间的血友病患者参与其中。在获得患者同意后,他们完成了修订后的疾病认知问卷(IPQ-R)、血友病生活质量问卷和应对策略问卷。使用血友病关节健康评分并基于临床和治疗数据记录来评估关节状况。

结果

西班牙的血友病患者对生活质量的认知有所改善(p<0.05),尽管在应对策略的自我批评变量方面仅存在差异(p = 0.04)。在这两个人群中,关节损伤和年龄与疾病认知、感知生活质量和应对策略呈负相关(p<0.05)。基于HIV和HCV合并感染,两个人群在疾病认知和感知生活质量方面存在差异(p<0.05)。

结论

萨尔瓦多的血友病患者对疾病和生活质量的认知较差。尽管两国在获得治疗方面存在差异,但在应对疾病方面没有差异。年龄较大的患者更能适应疾病。

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本文引用的文献

1
WFH Guidelines for the Management of Hemophilia, 3rd edition.
Haemophilia. 2020 Aug;26 Suppl 6:1-158. doi: 10.1111/hae.14046. Epub 2020 Aug 3.
4
Life experience of the adult and ageing patient with haemophilia. Practical aspects for psychological support.
Vox Sang. 2017 May;112(4):301-309. doi: 10.1111/vox.12501. Epub 2017 Mar 15.
5
Pathophysiology of hemophilic arthropathy and potential targets for therapy.
Pharmacol Res. 2017 Jan;115:192-199. doi: 10.1016/j.phrs.2016.11.032. Epub 2016 Nov 24.
6
Haemophilia in the UK: past, present and future.
Haemophilia. 1995 Apr;1 Suppl 2:4-5. doi: 10.1111/j.1365-2516.1995.tb00113.x.
8
Benefits of prophylaxis versus on-demand treatment in adolescents and adults with severe haemophilia A: the POTTER study.
Thromb Haemost. 2015 Jul;114(1):35-45. doi: 10.1160/TH14-05-0407. Epub 2015 Apr 9.
9
The current status of prophylactic replacement therapy in children and adults with haemophilia.
Br J Haematol. 2015 Jun;169(6):777-86. doi: 10.1111/bjh.13365. Epub 2015 Mar 29.
10
Factors influencing illness representations and perceived adherence in haemophilic patients: a pilot study.
Haemophilia. 2015 Sep;21(5):598-604. doi: 10.1111/hae.12654. Epub 2015 Feb 16.

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