Data from: Identifying acne treatment uncertainties via a James Lind Alliance Priority Setting Partnership

Objectives: The Acne Priority Setting Partnership (PSP) was set up to identify and rank treatment uncertainties by bringing together people with acne and professionals providing care within and beyond the NHS. Setting: The UK with international participation. Participants: Teenagers and adults with acne, parents, partners, nurses, clinicians, pharmacists, private practitioners. Methods: Treatment uncertainties were collected via separate online harvesting surveys, embedded within the PSP website, for patients and professionals. A wide variety of approaches were used to promote the surveys to stakeholder groups with a particular emphasis on teenagers and young adults. Survey submissions were collated using keywords and verified as uncertainties by appraising existing evidence. The 30 most popular themes were ranked via weighted scores from an online vote. At a priority setting workshop, patients and professionals discussed the 18 highest-scoring questions from the vote and reached consensus on the top ten. Results: In the harvesting survey, 2,310 people including 652 professionals and 1,456 patients (58% aged 24 y or younger) made submissions containing at least one research question. After checking for relevance and rephrasing, a total of 6,255 questions were collated into themes. Valid votes ranking the 30 most common themes were obtained from 2,807 participants. The top ten uncertainties prioritised at the workshop were largely focused on management strategies, optimum use of common prescription medications and the role of non-drug based interventions. More female than male patients took part in the harvesting surveys and vote. A wider range of uncertainties were provided by patients compared to professionals. Conclusions: Engaging teenagers and young adults in priority setting is achievable using a variety of promotional methods. The top ten uncertainties reveal an extensive knowledge gap about widely used interventions and the relative merits of drug versus non-drug based treatments in acne management.

研究目标：痤疮优先事项设定伙伴关系（Acne Priority Setting Partnership, PSP）旨在通过召集痤疮患者以及英国国家医疗服务体系（National Health Service, NHS）内外的医疗从业者，识别并排序痤疮治疗相关的不确定性。
研究场景：英国，且吸纳国际参与者。
参与对象：痤疮青少年与成年患者、父母、配偶、护士、临床医师、药师及私人执业医师。
研究方法：针对患者与医疗从业者，通过嵌入PSP官网的独立线上征集调研收集治疗相关不确定性；通过多元推广渠道触达利益相关群体，重点覆盖青少年与年轻成人人群。调研提交的内容通过关键词进行整理归类，并通过评估现有证据核实其确为治疗相关不确定性。随后针对30个最热门的主题，通过线上投票的加权得分完成排序。在优先事项设定研讨会上，患者与医疗从业者就投票得分最高的18个问题展开讨论，并就前十项优先级达成共识。
研究结果：本次线上征集调研共回收2310份有效提交，其中包含652名医疗从业者与1456名患者（58%的参与者年龄≤24岁），每份提交至少包含一项研究问题。经相关性核查与措辞优化后，共计6255个问题被整合为相关主题。共有2807名参与者为30个最常见主题的排名提供有效投票。研讨会最终确定的十大优先级不确定性，主要聚焦于治疗策略、常用处方药的优化使用，以及非药物干预手段的作用。参与本次线上征集调研与投票的女性患者数量多于男性。相较于医疗从业者，患者提出的不确定性覆盖范围更广。
研究结论：通过多样化的推广手段，吸纳青少年与年轻成人参与优先事项设定具备可行性。本次确定的十大优先级不确定性，揭示了痤疮治疗领域针对广泛使用的干预手段，以及药物与非药物治疗相对优劣的认知缺口。