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 National Health Service (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 10. Results: In the harvesting survey, 2310 people, including 652 professionals and 1456 patients (58% aged 24 y or younger), made submissions containing at least one research question. After checking for relevance and rephrasing, a total of 6255 questions were collated into themes. Valid votes ranking the 30 most common themes were obtained from 2807 participants. The top 10 uncertainties prioritised at the workshop were largely focused on management strategies, optimum use of common prescription medications and the role of nondrug 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 10 uncertainties reveal an extensive knowledge gap about widely used interventions and the relative merits of drug versus non-drug based treatments in acne management

Identifying and prioritizing uncertainties: patient and clinician engagement in the identification of research questions

Background To arrive at an agreed, prioritized ranking of treatment uncertainties in asthma that need further research, by developing a collaboration of patients, carers and clinicians, facilitated by the James Lind AllianceWorking Partnership between Asthma UK and the British Thoracic Society. Methods A four-step procedure: (1) establish a collaborative Working Partnership; (2) identify and collect treatment uncertainties by using a patient survey and analysing existing systematic reviews, clinical guidelines and query-answering services; (3) categorize uncertainties; and (4) convene a workshop using a nominal group process to establish a ranked prioritization of treatment uncertainties in asthma. Findings Agreement and rankings were reached for 10 treatment uncertainties. The highest was given to the uncertainty surrounding the adverse effects of inhaled and oral steroids. The top three priorities dealt with clinical management issues, where uncertainties still exist, namely concerns about the side effects of inhaled and oral steroids, how to manage asthma when other illnesses exist or how to rely on personal decisions in an ever-changing illness (self-management). Interpretation The key outcome is the generation of a prioritized list of treatment uncertainties in asthma, agreed by a collaboration of patients and health professionals, to inform the commissioning of new research. Such a large number of patient-identified treatment uncertainties had not previously been identified in the literature, an indication perhaps that asthma self-management is a neglected research area. Whether the results have an influence of research funding decisions is not yet known

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

Design and Fabrication of RESURF MOSFETs on 4H-SiC(0001), (1120), and 6H-SiC(0001)

Background: Skin diseases are very common and can have a large impact on the quality of life of patients and caregivers. This programme addressed four diseases: (1) eczema, (2) vitiligo, (3) squamous cell skin cancer (SCC) and (4) pyoderma gangrenosum (PG). Objective: To set priorities and reduce uncertainties for the treatment and prevention of skin disease in our four chosen diseases. Design: Mixed methods including eight systematic reviews, three prioritisation exercises, two pilot randomised controlled trials (RCTs), three feasibility studies, two core outcome initiatives, four funding proposals for national RCTs and one completed national RCT. Setting: Secondary care, primary care and the general population. Participants: Patients (and their caregivers) with eczema, vitiligo, SCC and PG, plus health-care professionals with an interest in skin disease. Interventions: Our three intervention studies included (1) barrier enhancement using emollients from birth to prevent eczema (pilot RCT); (2) handheld narrowband ultraviolet light B therapy for treating vitiligo (pilot RCT); and (3) oral ciclosporin (Neoral®, Novartis Pharmaceuticals) compared with oral prednisolone for managing PG (pragmatic national RCT). Results: Systematic reviews included two overarching systematic reviews of RCTs of treatments for eczema and vitiligo, an umbrella review of systematic reviews of interventions for the prevention of eczema, two reviews of treatments for SCC (one included RCTs and the second included observational studies), and three reviews of outcome measures and outcome reporting. Three prioritisation partnership exercises identified 26 priority areas for future research in eczema, vitiligo and SCC. Two international consensus initiatives identified four core domains for future eczema trials and seven core domains for vitiligo trials. Two pilot RCTs and three feasibility studies critically informed development of four trial proposals for external funding, three of which are now funded and one is pending consideration by funders. Our pragmatic RCT tested the two commonly used systemic treatments for PG (prednisolone vs. ciclosporin) and found no difference in their clinical effectiveness or cost-effectiveness. Both drugs showed limited benefit. Only half of the participants’ ulcers had healed by 6 months. For those with healed ulcers, recurrence was common (30%). Different side effect profiles were noted for each drug, which can inform clinical decisions on an individual patient basis. Three researchers were trained to PhD level and a dermatology patient panel was established to ensure patient involvement in all aspects of the programme. Conclusions: Findings from this programme of work have already informed clinical guidelines and patient information resources. Feasibility studies have ensured that large national pragmatic trials will now be conducted on important areas of treatment uncertainty that address the needs of patients and the NHS. There is scope for considerable improvement in terms of trial design, conduct and reporting for RCTs of skin disease, which can be improved through wider collaboration, registration of trial protocols and complete reporting and international consensus over core outcome sets. Three national trials have now been funded as a result of this work. Two international initiatives to establish how best to measure the core outcome domains for eczema and vitiligo are ongoing

Acne PSP harvesting survey professional version no identifiers 220315

The 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 55340