Children's Cancer PSP 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

Children’s Cancer Priority Setting Partnership

Please describe the scope of the PSP

The aim of the Children’s Cancer PSP is to identify gaps and unanswered questions in research about Children’s Cancer from patients, carers and professionals’ perspectives and then prioritise those that these groups agree are the most important for research to address.

The scope of the Children’s Cancer PSP includes questions about:

All types of cancer and cancer-like conditions.
Cancer in children aged 0 to 15 years at initial diagnosis (up to their 16th birthday).
Any aspect of the prevention or diagnosis of cancer in children.
Any aspect of the referral, treatment and management of childhood cancer, and the care of children who have or have had cancer.
Childhood cancer survivorship, including follow-up and late effects.
Questions relating to the families/carers of children with cancer.
Psychological, emotional and social aspects of childhood cancer.
Palliative and end of life care.

The PSP will exclude from its scope questions about:

Cancer in people who are 16 years and older at the time of initial diagnosis.

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

Questions submitted to the survey were collated and categorised into summary questions. Summary questions were agreed by the Steering Group: next step is to check which of the summary questions are unanswered by research to date. Given the extensive scope of our PSP, we will take a broad approach to checking uncertainties, identifying literature above systematic reviews, current and previous trials.

The following searches will be undertaken as relevant for each question:

National guidelines will be reviewed to determine whether they covered that question. If they do, then evidence behind the guidelines will be reviewed. Where this evidence is low-quality, this will be discussed with the Steering Group to determine whether to consider the question answered or unanswered.
Cochrane reviews will be searched using keywords specific to each question. Where a review calls for further research, the question will not be considered answered.
Database searches on MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Embase, Scopus, and Web of Science will be conducted using keywords specific to each question.
Ongoing and future trials will be reviewed on registries. These will be used to identify questions that may be answered in the coming years. An ongoing study may not mean that an uncertainty will definitely be addressed. Steering group members will discuss ongoing studies and document any decisions made as a result of information found.

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

Only publications which bring together evidence from multiple studies together will be considered. Single studies and third sector reports will be excluded. The types of evidence to be considered includes:

Systematic reviews
Other types of high-quality evidence synthesis (e.g. qualitative meta-synthesis)
National guidelines
Registry data
Relevant ongoing and future studies.

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

Systematic reviews – The Cochrane Database of Systematic Reviews, JBI Evidence Synthesis, database searches.
Other types of high-quality evidence synthesis (e.g. qualitative meta-synthesis) – database searches.
National guidelines - The National Institute for Health and Care Excellence (NICE) guidelines, Scottish Intercollegiate Guidelines Network (SIGN) clinical guidelines, relevant Royal Colleges’ guidance, professional association guidance.
Registry data - National Cancer Intelligence Network (NCIN) reports.
Relevant ongoing studies - Clinical trials databases.

What search terms did you use?

Keywords of each question will be used in each database and tailored to each question.
Examples of keywords are:

Education searches: education* OR school* OR learn* OR teach* OR classroom OR nursery OR preschool* OR "pre school*" OR kindergarten*

Fertility searches: fertility OR oncofertility OR onco-fertility OR infertility OR infertile OR reproduc*

End of life care searches: Dying OR Die OR Dies Or Died OR Death OR Bereave* OR Palliative OR Terminal* OR Incurable OR Life-limiting OR "Life limiting" OR Life-threatening OR "Life threatening" OR End-of-life OR "End of life" OR EoL OR End-stage OR "End stage"

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

Searches will be limited to evidence published in the last 5 years (since January 2017). Where we are aware that older evidence has answered a question and further research or an update may be unnecessary, this will be discussed with the Steering Group with a consensus reached on whether or not the question has been answered.

Searches will be limited to publication in English.

As the evidence we find may not be restricted to cancer in children aged 0 to 15 years at initial diagnosis, evidence which includes participants between these ages along with older participants will be considered. When reviewing this evidence, the Steering Group will consider whether further work focussing specifically on children aged 0 to 15 years at initial diagnosis is needed.

Evidence from outside the UK will be considered and reviewed to check that it is relevant for the UK population. Context will be particularly important for questions relating to service provision.

Names of individuals who undertook the evidence checking

Susie Aldiss with support from the Steering Group in their areas of expertise.

On what date was the question verification process completed?

26th May 2022

Any other relevant information

The Steering Group will be asked to confirm whether any additional evidence within their areas of expertise is available and whether they are aware of any ongoing studies focusing on the questions.