Wu Kyle, Larney Conor, Marshman Gill, Spelman Lynda, Rubel Diana, Mcmeniman Erin, Veysey Emma, Saunders Helen, Frew John W
St Vincent's Hospital, Melbourne, Victoria, Australia.
Flinders Medical Centre Adelaide, Bedford Park, South Australia, Australia.
Australas J Dermatol. 2024 Dec;65(8):630-635. doi: 10.1111/ajd.14370. Epub 2024 Oct 10.
Hidradenitis suppurativa (HS) is a debilitating chronic inflammatory disease with significant impact upon quality of life. Generic quality-of-life measures suffer from decreased face validity and content validity, leading to the development of disease-specific quality-of-life measures such as the Hidradenitis Suppurativa Quality of Life (HiSQOL) outcome measure. The aim of this study was to validate the use of the HiSQOL in the Australian population and evaluate the quality-of-life impact in HS patients in Australia.
A total of 301 patients were recruited and consented to be involved in this study. All participants were invited to complete the HiSQOL questionnaire along with basic demographic and disease information, the DLQI and HADS anxiety and depression scale. Participants were then asked to repeat the questionnaires 14 days later to assess test-retest reliability.
The mean HiSQOL score was 46.5 out of a possible total score of 76 (SD = 24.2) indicating a very large impact on quality of life. Based upon the published validity bands this corresponds to a very large impact on quality of life. Validation statistics indicated a high degree of internal consistency (Cronbach's alpha = 0.956) with expected levels of convergent validity and excellent test-retest reliability (p = 0.95). Multiple regression analysis indicated individuals with a younger age of onset and positive family history had significantly greater quality-of-life impact as measured by the HiSQOL.
The HiSQOL is a valid, reliable measure for assessing the quality-of-life impact of HS. Significant factors influencing quality of life include age of onset and family history. Longitudinal measurements will enable evaluation of the impact of therapy upon QOL in the Australian context.
化脓性汗腺炎（HS）是一种使人衰弱的慢性炎症性疾病，对生活质量有重大影响。通用的生活质量测量方法存在表面效度和内容效度降低的问题，因此导致了针对特定疾病的生活质量测量方法的发展，如化脓性汗腺炎生活质量（HiSQOL）结果测量法。本研究的目的是验证HiSQOL在澳大利亚人群中的应用，并评估其对澳大利亚HS患者生活质量的影响。
共招募了301名患者并征得他们同意参与本研究。所有参与者均被邀请填写HiSQOL问卷以及基本人口统计学和疾病信息、皮肤病生活质量指数（DLQI）和医院焦虑抑郁量表（HADS）。然后要求参与者在14天后重复填写问卷，以评估重测信度。
HiSQOL的平均得分为46.5分（满分76分，标准差=24.2），表明对生活质量有非常大的影响。根据已发表的效度范围，这对应于对生活质量有非常大的影响。效度统计表明内部一致性程度较高（Cronbach's α=0.956），具有预期水平的收敛效度和出色的重测信度（p=0.95）。多元回归分析表明，发病年龄较小且有阳性家族史的个体，通过HiSQOL测量，其生活质量受到的影响显著更大。
HiSQOL是评估HS对生活质量影响的一种有效、可靠的测量方法。影响生活质量的重要因素包括发病年龄和家族史。纵向测量将能够评估在澳大利亚背景下治疗对生活质量的影响。
