ReviewThe Lancet. Child & adolescent health2023
Pain research and children and adolescents with severe intellectual disability: ethical challenges and imperatives.
Review in The Lancet. Child & adolescent health, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
9 citing papers in PubMed, 1 synthesis or guideline pooled it, 13 citations in OpenAlex.
- Invisible Harms, Visible Benefits? Adverse Event Reporting in Physical Activity Interventions for Neurodevelopmental Disorders: A Meta-analysis and Critical Appraisal.Sports medicine - open · 2026Pooled it
- Vulnerability and Pediatric Pain.Paediatric & neonatal pain · 2026Article
- Equitable inclusion of people with disabilities in clinical trials: a scoping review.BMJ open · 2026Article
- Experimental Pain Research in Individuals with Intellectual Developmental Disorder: A Scoping Review.Journal of pain research · 2026Review
- The comprehensibility and feasibility of the modified brief pain inventory and fear of pain questionnaire adapted for children and young people with cerebral palsy.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Syndromic gingival fibromatosis associated with pathogenic variation in the voltage-gated potassium channel gene KCNH1: a case report and proposed treatment protocol.BMC oral health · 2025Article
- Chronic pain in children and young people with cerebral palsy: a narrative review of challenges, advances, and future directions.BMC medicine · 2024Review
- Ethical guidelines for human research on children and adolescents: A narrative review study.Journal of research in medical sciences : the official journal of Isfahan University of Medical Sciences · 2024Review
- Pain assessment in autism: updating the ethical and methodological challenges through a state-of-the-art review.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2023Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 2 countries.
Funding
Abstract
Children with severe intellectual disabilities encounter inequities in pain-related care, yet little pain research involves this population. A considerable issue with pain research in this population is its ethical complexity. This Viewpoint delineates the ethical challenges of pain research involving children (aged 2-12 years) and adolescents (aged 13-21 years) with severe intellectual disabilities. There are two main issues. First, some of the standard methods for assessing pain and pain sensitivity are not suitable for individuals with severe intellectual disability, who are often non-verbal and unable to understand or follow instructions. Second, children and adolescents with severe intellectual disability cannot provide informed consent or assent to participate in pain research, and their dissent is not always recognised. The existing ethical guidelines for pain research by the International Association for the Study of Pain provide helpful, but general, guidance. This Viewpoint supplements these guidelines and uses a well established framework for assessing the ethics of clinical research to highlight points relevant to designing, doing, reviewing, and evaluating research involving children and adolescents with severe intellectual disability, focusing on issues that are unaddressed in existing guidance.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.