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.