Juvenile Idiopathic Arthritis PSP Question Verification Form

James Lind Alliance Priority Setting Partnership Question Verification Form

The purpose of this Question Verification Form is to enable Priority Setting Partnerships (PSPs) to describe clearly how they checked that their questions were unanswered, before starting the interim prioritisation stage of the process.

The JLA requires PSPs to be transparent and accountable in defining their own scope and evidence checking process. This will enable researchers and other stakeholders to understand how individual PSPs decided that their questions were unanswered, and any limitations of their evidence checking.

Name of the PSP

Juvenile Idiopathic Arthritis (JIA)

Please describe the scope of the PSP

The scope of the PSP is to elucidate the extent to which scientific evidence is available to answer the questions posed by the JIA patients, their parents and/or carers, and the clinicians involved. The question posed covered the following categories: symptoms in remission, fatigue/tiredness, pain, consequences, psychosocial aspects, nutrition, movement & sport, self-management, Methotrexate intolerance, treatment, injections & medication types, cure & relapse, prognosis, uveitis, systemic JIA, heredity, causes, diagnosis, future, prevention, and service provisions.

Please provide a brief overview of your approach to checking whether the questions were unanswered

3 year PubMed review: 2016 onwards
Methodology:
1. Coming up with appropriate keywords and MeSH terms for each category*
2. Reviewing the results based on title and abstract
3. Matching the articles to an appropriate question within the category, if the article appears to be relevant
4. Reviewing the articles in depth for each question.
a. If the article proves to be irrelevant to the question - removing it from the list
b. If the article proves to be relevant to the question - extracting the main findings and summarising them
5. Synthesising the findings and grading the evidence for each question using the labels:
a. “sufficiently answered” - if the question is fully answered
b. “partially answered” - if only one subquestion is answered, or if there is some evidence, but it is insufficient to provide a conclusive answer
c. “insufficiently answered” - if limited evidence is available, or if the available evidence does not even partially answer the question
d. “no relevant literature” - if no literature is available for this question
6. Performing a verification search for all systematic reviews and meta analysis on JIA from 2016 onwards to ensure they have all been noted and reviewed**
a. Employing an appropriate search strategy ***
b. Reviewing every publication and deciding on its relevance to any of the 53 questions
c. If relevant - adding the findings to the synthesised summary and evaluating the evidence again

*see the “Lit Review” document for every search strategy employed
**publications added in this way: 6
***see the “Additional Search” document for the search strategy

10 year PubMed review: 2009 onwards
Methodology:
7. Expanding the search to 10 years in order to ensure that no crucial research is missed ****
8. Employing a search strategy to find all the systematic reviews and meta analyses published on JIA from 2009 onwards
9. Reviewing every publication and deciding on its relevance to any of the 53 questions
10. If a publication is relevant - summarising its findings

****restricted to systematic reviews and meta analyses only due to time limitations

10 year PsycINFO search: 2009 onwards
Methodology:
1. Expanding the search to 10 years in order to ensure that no crucial research is missed
2. Employing a search strategy to find all papers published on JIA from 2009 onwards
3. Reviewing every publication and deciding on its relevance to any of the 53 questions
4. If a publication is relevant - summarising its findings

Please list the type(s) of evidence you used to verify your questions as unanswered

Systematic reviews, meta-analyses, longitudinal studies, RCTs, lab studies, qualitative studies, cross-sectional studies, questionnaires, etc.

Please list the sources that you searched in order to identify that evidence

PubMed, PsycINFO

What search terms did you use?

The search terms varied per each category (see “Full analysis” document)

Please describe the parameters of the search (eg time limits, excluded sources, country/language) and the rationale for any limitations

3 years PubMed: 2016 onwards; English language articles only, satisfactory methodology; sufficient sample size

10 years Pudmed: 2009 onwards; English language articles only; systematic review and meta-analyses only, satisfactory methodology; sufficient sample size

10 years PsychINFO search: 2009 onwards; English language articles only; satisfactory methodology; sufficient sample size

Names of individuals who undertook the evidence checking

Maria Certan, Soumaya Chemlal, Casper Schoemaker

On what date was the question verification process completed?

5^th July 2019

Any other relevant information

The steering group checked and discussed the evidence checking results. The steering group agreed with the reviewers on the grading of 48 of the 53 questions (91%). One question (Q34) could not be graded by the reviewers; the steering group formulated a grading. Based on the evidence checking results, the steering group rephrased two overlapping unfocused questions (Q18 and Q19). For two questions, (Q11 and Q13), the steering group decided to change the grading, from sufficiently answered to partially answered.