Layton Alison M, Whitehouse Heather, Eady E Anne, Cowdell Fiona, Warburton Katharine L, Fenton Mark
Department of Dermatology, Harrogate and District NHS Foundation Trust, Harrogate, UK.
Faculty of Health, Education and Life Sciences, Birmingham City University, Birmingham, UK.
J Evid Based Med. 2017 Aug;10(3):163-170. doi: 10.1111/jebm.12249. Epub 2017 May 24.
To collect information about how people with acne make day-to-day decisions concerning the effectiveness of their treatment.
Between May and August 2013, an optional question was embedded in the James Lind Alliance Acne Priority Setting Partnership's online survey to collect treatment uncertainties. The question asked people with acne to "Tell us in your own words how you decide if your treatment has been effective."
A total of 742 respondents specified at least one outcome or means of assessing change (outcome measure). Fewer spots were the most commonly cited outcome, identified by 272 respondents (36.7%). Other frequently mentioned outcomes were in descending order: less redness (19.4%), reduction in spot size (12.1%), and less pain/discomfort (11.4%). Signs were much more commonly used than symptoms and surrogate outcomes such as changes in aspects of life quality were infrequently mentioned. Visual inspection of the skin was the most widely adopted outcome measure (16.3%).
Although the most frequently used methods map well onto the outcome measures adopted in the majority of acne trials, namely physician-assessed changes in lesion counts and global acne severity, people with acne often take into account several factors that cannot be assessed by a third party at a single point in time. The minimal use of changes in psychosocial wellbeing and mood may reflect that these are regarded as secondary consequences of improvements in appearance. The robustness of these findings now requires independent evaluation. If confirmed, they could form the basis of a new patient-reported outcome measure.
收集有关痤疮患者如何就其治疗效果做出日常决策的信息。
2013年5月至8月期间，在詹姆斯·林德联盟痤疮优先事项设定合作伙伴关系的在线调查中嵌入了一个可选问题，以收集治疗方面的不确定性。该问题要求痤疮患者“用你自己的话告诉我们你如何判断你的治疗是否有效”。
共有742名受访者明确指出了至少一种评估变化的结果或方式（结果指标）。痘痘减少是最常被提及的结果，272名受访者（36.7%）提到了这一点。其他经常提到的结果按降序排列为：泛红减轻（19.4%）、痘痘尺寸减小（12.1%）、疼痛/不适减轻（11.4%）。体征比症状更常被使用，而生活质量等方面变化的替代结果很少被提及。皮肤的目视检查是采用最广泛的结果指标（16.3%）。
尽管最常用的方法与大多数痤疮试验采用的结果指标很好地对应，即医生评估的皮损计数和整体痤疮严重程度的变化，但痤疮患者通常会考虑几个第三方无法在单一时间点评估的因素。心理社会幸福感和情绪变化的使用最少，这可能反映出这些被视为外观改善的次要结果。这些发现的稳健性现在需要独立评估。如果得到证实，它们可以构成一种新的患者报告结果指标的基础。
