DOI: 10.5061/dryad.gf1k0
title: Data from: Identifying acne treatment uncertainties via a James Lind Alliance Priority Setting Partnership

description: 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.
description: 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, eaeady@gmail.com Tel: 01943 608823
 OR Dr Alison Layton, alison.layton@hdft.nhs.uk Tel: 01423 553364 Fax:
 01423 553401