Top 10 areas voted for Acne Research
Author: Acne PSP
Date: MAR 2014
Tuesday’s workshop marked the culmination of 16 months hard work for the James Lind Alliance (JLA) Acne Priority Setting Partnership. After a day of lively but amicable debate, the 24 patients and health care professionals who came and batted hard for the uncertainties (unanswered questions) they felt were most important, finally reached agreement about the TOP TEN priority areas for acne treatment research to address.
The workshop was stage three of a priority setting process established by the JLA in 2004 to bring patients and healthcare professionals together as equal partners with equal voices.
In stage one, over 4,000 people from all over the world submitted questions about acne treatments that they would like to see answered by new research. The questions were very wide ranging and illustrated just how much we don’t know about how to treat acne effectively in children, teenagers or mature adults.
All of the questions submitted were collated into themes and the most commonly asked ones were compiled into a shortlist of 30. In stage 2, people were invited (via the Acne PSP website and also personally if they had taken part in stage 1) to rank the three questions they considered the most important ones for new research to answer. Votes from over 3,000 individuals were received and the 18 questions with the highest scores were brought to the priority setting workshop.
So what made it into the TOP TEN and what did delegates at the workshop decide was the most important unanswered question of all?
- What management strategy should be adopted for the treatment of acne in order to optimise short and long-term outcomes?
- What is the correct way to use antibiotics in acne to achieve the best outcomes with least risk?
- What is the best treatment for acne scars?
- What is the best way of preventing acne?
- What is the correct way to use oral isotretinoin (Roaccutane) in acne in order to achieve the best outcomes with least risk of potentially serious adverse effects?
- Which lifestyle factors affect acne susceptibility or acne severity the most and could diet be one of them?"
- What is the best way of managing acne in mature women who may/may not have underlying hormonal abnormalities?
- What is the best topical product for treating acne?
- Which physical therapies including lasers and other light based treatments are safe and effective in treating acne?
- How long do acne treatments take to work and which ones are fastest acting?
Dr Alison Layton, consultant dermatologist and clinical lead of the Acne PSP said ‘As a specialist who has been looking after patients suffering from acne for many years, it has been fascinating to understand what matters most to all those people with acne who I never see in my hospital-based clinic. It has also been revealing to see what my fellow healthcare professionals and those who treat acne outside the NHS regard as priorities for acne treatment research. We’ve listened to and learnt from all of them. It’s amazing how much we still don’t know about widely used treatments. Our number one priority might seem very broad but it reflects the fact that acne is a chronic condition that requires a radically new approach to long-term management if we are to meet people’s expectations of high quality care.’
Lester Firkins of the JLA, chairman of the Acne PSP Steering Group, ended the workshop by reminding everyone that the TOP TEN isn’t an end but a beginning. ‘The final workshop was a massive credit to all who took part. The larger than normal group was able to debate, argue and adapt without any form of bad feeling where compromises on people’s “favourites” had to be made. It was exciting for me to see so many younger people in the mix. Their insights and positive attitude were something I personally have not had the opportunity to experience on a previous PSP. Given that acne predominantly affects teenagers and young adults, it was essential that their voices were heard loud and clear. It’s now up to the research community to rise to the challenge and provide the answers patients and professionals want to increase the benefits and lower the risks of acne treatments. In addition, every single treatment uncertainty suggested, whether in the TOP TEN or not, will be recorded within the publicly available database, UK DUETs (http://www.library.nhs.uk/duets/), for future reference. Nothing will have been lost.’
It is only right we should leave the final word to one of the patient delegates who said ‘I found the free-ranging discussions with clinicians informative and rewarding. I felt we had a better understanding of each other’s priorities as a result.’
The Acne PSP is administered from the Department of Dermatology at Harrogate and District NHS Foundation Trust. It is funded by grants from the UK Dermatology Clinical Trials Network and the Society for Academic Primary Care. For further information go to www.acnepsp.org
More about the James Lind Alliance is available at www.jla.nihr.ac.uk
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