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多中心白癜风支持小组与生活质量病例对照研究。

A Multi-Centered Case-Control Study of Vitiligo Support Groups and Quality of Life.

出版信息

J Drugs Dermatol. 2021 Jun 1;20(6):672-675. doi: 10.36849/JDD.2021.5706.

DOI:10.36849/JDD.2021.5706
PMID:34076392
Abstract

BACKGROUND

There is limited research on the association between vitiligo support group membership and patient quality of life (QoL).

OBJECTIVES

To explore the association between support groups and QoL in those with vitiligo by evaluating and comparing the QoL of vitiligo support group members and non-support group members.

METHODS

Support group members (n=135) and non-support group members (n=129) were recruited from the Global Vitiligo Foundation (GVF), and three academic medical centers respectively. Patients completed the Vitiligo-Specific Quality of Life (VitiQoL) instrument and a demographic survey.

RESULTS

Mean VitiQoL scores for support group members were higher than non-support group members (48.6 ± 23.6 vs 33.0 ± 23.8; P-value < 0.0001), highlighting more negatively impacted QoL. Support group members were less likely to be undergoing treatment (27.4% vs 53.5%; P-value = <0.0001) and were more likely to report duration of vitiligo for >20 years (38.5% vs 19.4%; P-value = 0.0007).

CONCLUSIONS

Vitiligo support group membership is associated with worse QoL. Individuals with vitiligo who have worse QoL, chronic, and/or untreated vitiligo may be more likely to seek out vitiligo support groups. Support group referral should be considered in the therapeutic management of vitiligo, particularly in patients whose QoL is more significantly impacted, who fail or are who are without access to treatment or have longstanding disease. J Drugs Dermatol. 2021;20(6):672-675. doi:10.36849/JDD.5706.

摘要

背景

关于白癜风支持小组的参与与患者生活质量(QoL)之间的关联,研究甚少。

目的

通过评估和比较白癜风支持小组成员和非支持小组成员的生活质量,探究支持小组与白癜风患者 QoL 之间的关系。

方法

分别从全球白癜风基金会(GVF)和三家学术医疗中心招募支持小组成员(n=135)和非支持小组成员(n=129)。患者完成白癜风特异性生活质量(VitiQoL)量表和人口统计学调查。

结果

支持小组成员的 VitiQoL 评分均值高于非支持小组成员(48.6±23.6 对 33.0±23.8;P 值<0.0001),提示其 QoL 受到更大的负面影响。支持小组成员更有可能未接受治疗(27.4%对 53.5%;P 值<0.0001),且更有可能患有白癜风 20 年以上(38.5%对 19.4%;P 值=0.0007)。

结论

参与白癜风支持小组与更差的 QoL 相关。QoL 较差、慢性、且/或未得到治疗的白癜风患者,可能更倾向于寻求白癜风支持小组的帮助。在白癜风的治疗管理中,应考虑推荐患者加入支持小组,特别是在 QoL 受影响更显著、对治疗无反应或无法获得治疗、或疾病持续时间较长的患者中。J 皮肤病药物学杂志。2021;20(6):672-675。doi:10.36849/JDD.5706.

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