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
Pediatric Inflammatory Bowel Disease
Please describe the scope of the PSP
- Pediatric patients are defined as patients up to and including the age of 20 years.
- A broad scope of questions will fall within the scope of our PSP, including but not limited by the following subjects: causality, potential preventive measures, symptoms, follow-up regimen, treatment strategy (effectiveness, side effects), prognosis (e.g. likelihood of necessary surgery in the future), the effect of the disease on the development of the child (growth, puberty, psychosocial, educational, etc), psychosocial impact (job prospective, relations, depression, anxiety, etc), coping (helping patients in their independence and in taking charge, stimulating shared decision making), ‘choosing wisely’ (https://choosingwisely.org), the effect of decision aids, and the transition from pediatric to adult care. Our study will help researchers and research funders in their decision which study subject in this broad scope should take precedent.
Please provide a brief overview of your approach to checking whether the questions were unanswered
The following steps will be undertaken:
1. Checking whether the questions are unanswered in the current literature. The sources are written down below.
- First, the question will be checked in the current European and Dutch guidelines. If a question is determined as ‘answered’ in this guideline, the evidence on which this is based will be reviewed. Where this evidence is high-quality, the question will be categorized as ‘answered’. Where this evidence is low-quality, e.g. observational research or expert consensus, we will continue with step 2. If in the following steps no additional evidence is found, the evidence from the guideline will be discussed with the steering group to determine whether to consider the question answered or unanswered. Where there is no evidence in the current guidelines, we will continue with step 2.
- Secondly, the evidence on the question will be checked in the NICE pathways/guidance and Cochrane reviews. When the evidence is <5 years old, it is considered uptodate.
- When no conclusion can be drawn from the steps above, PubMed will be checked for recent (<5 years) high-level evidence: systematic reviews and/or meta-analyses
- When no high-quality evidence can be found in the steps above, the question will be categorized as ‘unanswered’.
2. Research recommendations will be added to the list of evidence uncertainties. Whenever the source of these recommendations was older than 2 years, the evidence for this uncertainty was checked following the procedure outlined above.
Please list the type(s) of evidence you used to verify your questions as unanswered
European and Dutch guidelines, NICE, Cochrane systematic reviews, PubMed
Please list the sources that you searched in order to identify that evidence
- NVK guideline (2008/2018)
- ECCO/ESPGHAN guideline ‘The Medical Management of Paediatric Crohn’s Disease’ (2014/update 2020)
- ECCO/ESPGHAN guideline ‘Management of Paediatric Ulcerative Colitis, Part 1 + Part 2.’ (2018)
- Porto guidelines (The complete list is published in the ‘ESPGHAN Paediatric IBD Porto Group and the Open IBD Interest Group annual report 2019’)
- Additional ECCO guidelines https://www.ecco-ibd.eu/publications/ecco-guidelines-science/published-ecco-guidelines.html
- NICE pathways and guidance
- Cochrane reviews
What search terms did you use?
No search terms were used to select Cochrane reviews. We exported all reviews from the category ‘child health’ in combination with ‘inflammatory bowel disease’ (n=38).
The search terms used in PubMed will vary per indicative question.
Please describe the parameters of the search (eg time limits, excluded sources, country/language) and the rationale for any limitations
- Guidelines are in English or Dutch. These were all updated in the last 4 years.
- The PubMed search is limited to the English literature. Also we decided for a time limit of 5 years, since the older studies are included in the guidelines.
Names of individuals who undertook the evidence checking
Jasmijn Jagt, Sophia Thoma
Specialist clinicians on the steering group will be consulted regarding their specialised topic area.
On what date was the question verification process completed?
Any other relevant information