Finalising the long list of indicative questions

This process can be time consuming and labour intensive. The indicative questions (the evidence uncertainties) that are created at this stage are the ones that are likely to go into the interim prioritisation survey, to be discussed at the priority setting workshop, and ultimately to go on to become the published results of the PSP.

While the Steering Group should have had oversight of and input to the data management from an early stage, it is recommended that time is allocated for members to review the long list of questions, ideally in person. In doing this, they should keep in mind that the questions need to be clearly understood, unambiguous, and accessible to members of the public who will see them in the interim prioritisation survey and at the priority setting workshop.

The questions should contain wording for the topic area of the PSP, so that they can stand alone and be searchable on websites. They should also be worded neutrally and avoid personalised language, such as 'we' or 'I'.

These questions will ultimately become the outputs of the PSP and cannot be changed once they have gone into the interim prioritisation survey, so it is important that they have been considered carefully. Steering Group members representing patients and clinicians will need to be content that they faithfully reflect the original survey submissions and that they will also be valuable to the research community. It is also important to consider the research and funding community at this point. If the aim of the PSP is to influence the research agenda, it is important to consider what that research funding community might need to know and understand to fund research in this area. PSPs often create broad thematic questions at this point, but it is helpful to bear in mind how the research community will be able to respond to them and the translation activity that may be required after the priorities have been agreed.

The JLA's experience suggests that participants at the priority setting workshop may want to debate or even dispute the shortlisted uncertainties, for example the wording, or whether any questions could be considered duplicates of each other. It is essential that the Steering Group is confident that it can defend the shortlist that goes out to prioritisation. It is worth the Steering Group reflecting on the following questions:

• How confident are we that the questions will be understood?
• Is there scope for confusion or variation of interpretation?
• Are any of the questions too similar?
• Are there any that may be better combined into one question? Or separated into more than one question?

It is important that the Information Specialist considers how to make sure that rephrased and reformatted questions can always be traced back to previous versions of the question and to the original submitted uncertainties.

In the Asthma PSP, over 100 survey responses asked about the side effects of both medication to 'relieve symptoms' and 'prevent symptoms developing' used in asthma treatment. These 100+ questions were made into two indicative questions:

• What are the adverse effects associated with long term use of short and long acting bronchodilators (medication to relieve symptoms); inhaled and oral steroids (medication to prevent symptoms developing); and combination and additive therapies (combinations of the two types of medication) in adults? (N.B. this includes children aged 12 years and over)
• What are the adverse effects associated with long-term use of short and long acting bronchodilators; inhaled and oral steroids; and combination and additive therapies in children?

In the Childhood Disability PSP, the indicative question 'What is the safety and effectiveness of drugs compared to talking therapies (e.g. Cognitive Behavioural Therapy) to treat anxiety in children and young people with Autistic Spectrum Disorders?' came from the following originally submitted questions:

'Do medications aimed at reducing anxiety (and thereby aggression) work long term in children with severe autism? / Is the management of anxiety with medication in children beneficial and what are the side effects? / Long term impact and side effect of risperidone vs sertraline vs fluoxetine for associated anxiety, comparative effectiveness and long-term side effects, is mono or multiple therapy best? / Which medication helps best for anxiety in autism / CBT is recognised as an effective treatment for ASD especially if it has been specifically modified for them. Why then can I not access this for my ASD children? / Use of CBT for repetitive behaviours in autism / What CBTs work in children with intellectual disabilities? / what is the evidence for CBT to treat anxiety in adolescents with autism?'

The Urinary Incontinence PSP gathered a total of 519 submissions, of which 102 came from existing sources and 417 were submitted by partner organisations which had gathered them internally and from their members.

These were refined to remove duplicates and non-uncertainties, leaving a total of 226. Of these:

• 79 came solely from patients and carers
• 37 came solely from clinicians
• Six were submitted by patients and clinicians simultaneously
• Two were from patients and research recommendations
• 102 were derived solely from research recommendations

For the Diabetes (Type 1) PSP:

• 583 people submitted 1,141 uncertainties
• 890 were true uncertainties
• 118 uncertainties came from research recommendations/literature
• After combining duplicates there were 350 verified uncertainties