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.,Acne PSP harvesting survey patient version no identifiers 230315Acne PSP harvesting survey professional version no identifiers 220315The raw unedited submissions to the Acne PSP harvesting survey for the collection of treatment uncertainties are contained in the following Excel files: Acne PSP harvesting survey patient version no identifiers 230315 Acne PSP harvesting survey professional version no identifiers 230315 All potential personal identifiers have been removed (age range, gender, ethnicity, first part of postcode) but could be made available on request for anyone who wishes to use them in their analyses and has the necessary ethical and, if required, NHS governance approvals. For each data set, null entries (i.e. those submissions which did not contain any entries in the columns to collect treatment uncertainties) have been removed. The submissions are listed in the order they were received. In the patient version, treatment uncertainties could be entered into any of columns D through to K. In the professional version, treatment uncertainties could be entered into any of columns B, D, F, H and J. At the close of the survey, submitted text was rephrased as required in order to separate out individual questions. Many submissions were not written as questions; where one or more questions could reasonably be inferred from the submitted text, they were extracted and included in totals. The total number of questions in the journal article refers to the number of questions in scope after rephrasing. An unlimited number of keywords (MesH descriptors wherever possible) were added to each separate question to enable collation by theme and/or by intervention type. Further information can be obtained from: Dr E Anne Eady, [email protected] Tel: 01943 608823 OR Dr Alison Layton, [email protected] Tel: 01423 553364 Fax: 01423 553401,