Pediatric Cancer (Canada) 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

Canadian Pediatric Cancer Priority Setting Partnership

Please describe the scope of the PSP

Because of the wide variation in childhood cancer diagnoses, treatments, and experiences, this Priority-Setting Partnership will be kept purposefully broad. Included participants in all Steps of the project will be English- and French-speaking and/or reading and writing:

• Canadian children (up to age 18 years) who are receiving cancer treatment at the time of Priority-Setting Partnership involvement,
• survivors (i.e., a person of any age who has treatment for a cancer that was diagnosed when they were less than 18 years),
• family members (e.g., parents, grandparents, siblings, partners) and bereaved family members of children with cancer and survivors as defined an,
• clinicians providing direct care to children with cancer and/or survivors.

For all study steps, we will rely on participants to self-identify as fulfilling one of the above classifications. We will not conduct any process to verify classification membership.

Questions related to any aspect of pediatric cancer including the pre-diagnosis period, diagnosis, treatment, relapse, survivorship, palliative care, and end-of-life care will be acceptable.

The following submissions were excluded and deemed to be outside of the scope of the PSP:

1. The submission was a personal anecdote or unique situation
2. The submission was vague or ambiguous
3. The submission inquired about cancer care resources (e.g., services, tests, or service gaps rather than research questions)
4. The submission inquired about research (as opposed to providing a research question)
5. The submission was an opinion or political statement

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

To conduct a literature search of existing evidence, a hospital librarian (LR) developed comprehensive search strategies that were ran on bibliographic databases (i.e., PubMed). Searches were conducted to identify questions that have previously been researched. Searches were undertaken between September-October 2021 and, following the JLA Guidebook, database results were restricted to the last 5 years (i.e., 2016-2021). For each unique question from the register, three team members (KH, SS, and WL) conducted PubMed searches using the search strategies developed by the librarian to determine if the question had been adequately answered by the literature.

Following the results of the literature review, Project Lead (LJ) & Project Coordinator (EH) verified and screened each source of evidence listed under each question and came to a consensus on the relevance of the paper and whether it adequately or partially answered the uncertainty. Questions that were considered partially answered were moved forward for prioritization as it was agreed that certain papers did not adequately answer the research question in its entirety.

Following this process, Project Lead (LJ) and Project Coordinator (EH) verified each original submissions from the initial survey to ensure they were accurately reflected in the summary questions prior to moving forward in the interim prioritization process. Through this process, certain summary questions were refined (e.g., reworded) or collapsed in a second question refinement process to ensure rigour and accuracy.

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

Publications were deemed relevant if they collated evidence from multiple studies, for example, systematic reviews and qualitative meta-synthesis, or were based on large, nationally representative cohort studies.

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

PubMed database

What search terms did you use?

Search Strategies for Evidence Check

Basic search structure (that can be paired with any theme)
PubMed:
(Concept 1) AND (Concept 2) AND (Concept 3) AND (Theme)

Concept 1: Type of evidence

"Systematic Reviews as Topic"[mesh] or "Systematic Review"[Publication Type] or "Meta-Analysis as Topic"[Mesh] or "Guideline" [Publication Type] or "Guidelines as Topic"[Mesh] or "systematic review*"[tiab] or "scoping review*"[tiab] or "rapid review*"[tiab] or "meta-analys*"[tiab] or overview*[ti] or guideline*[tiab]

Concept 2: Pediatrics

"child"[MeSH Terms] OR "infant"[MeSH Terms] OR "child, exceptional"[MeSH Terms] OR "adolescent"[MeSH Terms] OR "pediatrics"[MeSH Terms] OR "child, abandoned"[MeSH Terms] OR "child, orphaned"[MeSH Terms] OR "child, unwanted"[MeSH Terms] OR "minors"[MeSH Terms] OR "congenital, hereditary, and neonatal diseases and abnormalities"[MeSH Terms] or pediatri*[tw] OR paediatri*[tw] OR child*[tw] OR newborn*[tw] OR congenital*[tw] OR infan*[tw] OR baby[tw] OR babies[tw] OR neonat*[tw] OR "pre term"[tw] OR preterm*[tw] OR "premature birth"[tw] OR "nicu"[tw] OR preschool*[tw] OR "pre school*"[tw] OR kindergarten*[tw] OR "elementary school*"[tw] OR "nursery school*"[tw] OR schoolchild*[tw] OR toddler*[tw] OR "boy"[tw] OR boys[tw] OR girl*[tw] OR "middle school*"[tw] OR pubescen*[tw] OR juvenile*[tw] OR teen*[tw] OR youth*[tw] OR "high school*"[tw] OR adolesc*[tw] OR prepubesc*[tw] OR "pre pubesc*"[tw] or child*[Journal] or adolesc*[Journal] or pediat*[Journal] or paediat*[Journal]

Concept 3: Childhood cancer

"Cancer Survivors"[Mesh] or "Neoplasms"[Mesh] or cancer*[tw] or neoplasm*[tw] or oncology[tw] or tumor*[tw] or tumour*[tw] or malignanc*[tw] or leukemia*[tw] or neuroblastoma*[tw] or lymphoma*[tw] or reticulolymphosarcoma*[tw] or germinoblastoma*[tw] or rhabdomyosarcoma*[tw] or retinoblastoma*[tw] or "retinal glioma*"[tw] or "retinal glioblastoma*"[tw] or osteosarcoma*[tw] or sarcoma*[tw] or adenoma*[tw] or carcinoma*[tw] or germinoma*[tw]
Themes:

COVID-19

((wuhan[All Fields] AND ("coronavirus"[MeSH Terms] OR "coronavirus"[All Fields])) AND 2019/12[PDAT] : 2030[PDAT]) OR 2019-nCoV[All Fields] OR 2019nCoV[All Fields] OR COVID-19[All Fields] OR SARS-CoV-2[All Fields]

Long-term Effects

"Time"[Mesh] or "long term effect*"[tw] or "longterm effect*"[tw] or "late effect*"[tw] or "late morbidity"[tw]

Psychosocial Health

"Health Services"[Mesh] or "Social Support"[Mesh] or "Mental Health Services"[Mesh] or "Peer Group"[Mesh] or "Psychosocial Intervention"[Mesh] or "Psychosocial Support Systems"[Mesh] or "Health Services"[Mesh] or "social support"[tw] or "peer support"[tw] or "peer group*"[tw] or "community support"[tw] or "support system*"[tw] or psychosocial[tw] or "mental health"[tw] or "health service*[tw]

Physical Health

"Health Status"[Mesh] or "Exercise"[Mesh] or "Rest"[Mesh] or "Sleep"[Mesh] or "Celiac Disease"[Mesh] or "Postural Orthostatic Tachycardia Syndrome"[Mesh] or exercis*[tw] or "self care"[tw] or "physical health"[tw] or rest*[tw] or sleep*[tw] or celiac[tw] or "gluten sensitiv*"[tw] or sprue[tw] or "gluten enteropath*"[tw] or "postural tachycardia"[tw] or "postural orthostatic tachycardia"[tw]

Access to Novel Therapies

"Precision Medicine"[Mesh] or "precision medicine"[tw] or "precision health"[tw] or "p health"[tw] or "personalized medicine"[tw] or "individualized medicine"[tw] or "predictive medicine"[tw] or "personalized health"[tw] or ((experiment*[[tw] or novel[tw] or new[tw] or target[tw] or personalized[tw]) AND (therap*[tw] or innovation*[tw] or innovative[tw] or treatment*[tw] or intervention*[tw] or program*[tw] or drug[tw] or drugs[tw]))

Access to Clinical Trials

"Compassionate Use Trials"[Mesh] or "compassionate use trial*"[tw] or "expanded access trial*"[tw] or ((access[tw] or barrier*[tw] or recruit*[tw]) AND (trial[tw] or trials[tw] or experiment*[tw]))

Relapse

"Recurrence"[Mesh] or relaps*[tw] or recurrence*[tw] or recrudescence*[tw] or refractory[tw]

Etiology

"etiology" [Subheading] or "Incidence"[Mesh] or "Causality"[Mesh] or OR "risk"[MeSH:noexp] OR risk[tiab] or “early detection”[tw] or screening[tw] OR cohort[tiab] OR etiolog*[tw] or prevention[tw] or preventive[tw] or incidence*[tw] or causation*[tw] or casualit*[tw]

Access to Medical Information

"Health Records, Personal"[Mesh] or "Access to Information"[Mesh] or “access to information”[tw] or “health information”[tw] or “health data”[tw] or “medical record*”[tw] or “patient access”[tw]

Symptomatology

("Neoadjuvant Therapy"[Mesh] or "Chemotherapy, Adjuvant"[Mesh] or "Neoadjuvant Radiation"[tw] or Chemoradiotherap*[tw] or Chemoradiation*[tw] or "radiation therap*"[tw] or "radiation treatment*"[tw] or chemotherap*[tw] or "Adjuvant Drug Therap*"[tw] or "Neoadjuvant Therap*"[tw] or "Neoadjuvant treatment*"[tw] or radiotherap*[tw]) AND ("Signs and Symptoms"[Mesh] or "Long Term Adverse Effects"[Mesh] or "Time"[Mesh] or symptom*[tw] or "adverse effect*"[tw] or "long term effect*"[tw])

Survivor Support

("Cancer Survivors"[Mesh] or survivor*[tw]) AND ("Social Support"[Mesh] or support*[tw] or program*[tw] or service*[tw] or care[tw])

Family/Caregiver Support

("Caregivers"[Mesh] or "Family"[Mesh] or family[tw] or families[tw] or parent*[tw] or sibling*[tw] or father*[tw] or mother*[tw] or grandparent*[tw] or carer*[tw] or caregiv*[tw] or "care giv*”[tw]) AND ("Caregiver Burden"[Mesh] or exhaustion[tw] or sleep*[tw] or burden*[tw] or burnout*[tw] or “burned out”[tw]) OR ("Social Support"[Mesh] or support*[tw] or program*[tw] or service*[tw] or care[tw])

Cancer Care Advancement

Part 1

"Feeding Methods"[Mesh] OR "Nutritional Support"[Mesh] or “nutritional support”[tw] or “enteral nutrition”[tw] or ((diet*[tiab] or feeding[tiab] or food[tiab]) AND (solution*[tiab] or tube[tiab] or tubes[tiab]) or “food intake”[tw]

Part 2

(("Pediatrics"[Mesh] or pediatr*[tw] or paediatr*[tw] or child*[tw]) AND (“Adult”[Mesh] or adult*[tw])) AND ("Transition to Adult Care"[Mesh] or "Transitional Care"[Mesh] or transition*[tw])

Clinical Advancement

"Quality Improvement"[Mesh] or “clinical advanc*”[tw] or “advancement of clinical”[tw] or improve*[tw] or progress*[tw]

Financial Support

"Financial Support"[Mesh] or “financial support”[tw] or “funding”[tw]

Cancer Screening/Diagnosis

("diagnosis"[MeSH] or “early detection”[tw] or “cancer screening”[tw] or diagnos*[tw])

Current Cancer Intervention

"Complementary Therapies"[Mesh] or "Molecular Targeted Therapy"[Mesh] or “alternative medicine”[tw] or “alternative therap*”[tw] or “complementary medicine”[tw] or “complementary therap*”[tw] or ((“molecular targeted therap*”[tw] or “molecular therap*”[tw]) and ("Chemotherapy, Adjuvant"[Mesh] or Chemoradiotherap*[tw] or Chemoradiation*[tw] or "radiation therap*"[tw] or "radiation treatment*"[tw] or chemotherap*[tw]))

Education

"Patient Education as Topic"[Mesh] or "Health Communication"[Mesh] or ((communicat*[tw] or educat*[tw]) AND (patient*[tw] or famil*[tw] or parent*[tw])) or “patient information”[tw] or “information for patient*”[tw] or misinformation[tw] or “health communication”[tw]

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

Following the JLA Guidebook, database results were restricted to the last 5 years (i.e., 2016-2021). No restrictions on country and language were set.

Names of individuals who undertook the evidence checking

Kyobin Hwang, Surabhi Sivaratnam, William Liu, Elham Hashemi, Lindsay Jibb

On what date was the question verification process completed?

November 3, 2021

Any other relevant information

n/a