Department of Dermatology, Emory University School of Medicine, Atlanta, GA, USA.
Department of Surgery, Division of Transplantation, Emory University School of Medicine, Atlanta, GA, USA.
Br J Dermatol. 2023 Jan 23;188(1):41-51. doi: 10.1093/bjd/ljac018.
BACKGROUND: Pain is rated by patients with hidradenitis suppurativa (HS) as the disease's most impactful symptom. HS therapies are often insufficient to control inflammatory disease activity and pain. A better understanding of patient experiences with pain may improve patient-provider relationships and help identify strategies for addressing HS pain. OBJECTIVES: This qualitative study sought to characterize lived pain experiences of those with HS. METHODS: English-speaking patients ≥ 18 years old with a dermatologist-confirmed diagnosis of HS and an average numerical rating scale pain score of ≥ 1 over the preceding week were recruited from a single academic medical centre in Atlanta, Georgia, USA. Semistructured interviews were conducted from November 2019 to March 2020 to explore participants' HS pain experiences and the subsequent impact on their lives. Thematic saturation was reached after interviewing 21 participants. Interviews were audio recorded, transcribed, and analysed using thematic analysis. RESULTS: Among 21 study participants, the median 7-day average pain score was 6 (interquartile range 3-7; scale ranges from 0 to 10, with 10 being most pain). Participants' descriptions of pain were consistent with nociceptive pain, neuropathic pain and itch. Pain impacted multiple life domains, including physical limitations (decreased mobility and impaired sleep), decreased psychological wellbeing (irritability, depression, loss of control, and difficulty communicating pain experiences) and impaired social relationships (social isolation, intimacy problems and difficulty fulfilling social responsibilities). Although participants reported chronic discomfort, acutely painful and unpredictable HS disease flares caused more distress and quality-of-life (QoL) burden. Participants frequently treated their pain without input from the medical team, sometimes with unsafe medication doses or combinations. Factors contributing to self-management of pain included difficulty accessing timely outpatient care during disease flares and fear of stigma from healthcare providers. CONCLUSIONS: When present, HS-related pain may impact not only physical wellbeing but also mental health and relationships. In addition to therapies that target the inflammatory disease burden, treating the symptom of pain may improve patients' QoL and wellbeing. Because patients with HS have difficulty explaining their pain, proactively asking them about pain may identify unmet needs, facilitate better pain control and improve QoL. Further, the influence of HS-related pain on numerous aspects of QoL suggests the need for multidisciplinary, patient-centred approaches to HS pain management.
背景:患有化脓性汗腺炎(HS)的患者将疼痛评为该疾病最具影响力的症状。HS 疗法通常不足以控制炎症性疾病活动和疼痛。更好地了解患者的疼痛体验可能会改善医患关系,并有助于确定解决 HS 疼痛的策略。 目的:本定性研究旨在描述患有 HS 的患者的疼痛体验。 方法:从美国佐治亚州亚特兰大市的一家学术医疗中心招募了年龄在 18 岁及以上、经皮肤科医生确诊为 HS 且过去一周平均数字评分量表疼痛评分≥1 的讲英语的患者。从 2019 年 11 月至 2020 年 3 月,进行半结构化访谈以探讨参与者的 HS 疼痛体验及其对生活的后续影响。在采访了 21 名参与者后达到了主题饱和度。对访谈进行了录音、转录,并使用主题分析进行了分析。 结果:在 21 名研究参与者中,中位 7 天平均疼痛评分 6 分(四分位距 3-7;范围 0-10,10 为最痛)。参与者对疼痛的描述与伤害感受性疼痛、神经性疼痛和瘙痒一致。疼痛影响了多个生活领域,包括身体活动受限(活动能力下降和睡眠受损)、心理健康下降(易怒、抑郁、失控和难以交流疼痛体验)以及社会关系受损(社会孤立、亲密问题和难以履行社会责任)。尽管参与者报告了慢性不适,但急性疼痛和不可预测的 HS 疾病发作会导致更大的痛苦和生活质量(QoL)负担。参与者经常在没有医疗团队参与的情况下自行治疗疼痛,有时会使用不安全的药物剂量或组合。自行管理疼痛的因素包括在疾病发作期间难以及时获得门诊治疗以及担心来自医疗保健提供者的耻辱感。 结论:当存在时,HS 相关的疼痛可能不仅会影响身体健康,还会影响心理健康和人际关系。除了针对炎症性疾病负担的治疗方法外,治疗疼痛症状可能会改善患者的 QoL 和幸福感。由于患有 HS 的患者难以解释他们的疼痛,主动询问他们的疼痛情况可能会发现未满足的需求,有助于更好地控制疼痛并提高 QoL。此外,HS 相关疼痛对生活质量众多方面的影响表明,需要采用多学科、以患者为中心的方法来管理 HS 疼痛。
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