Background & Aims
Chronic pain disproportionately affects autistic children and young people (CYP), yet they are underrepresented in pain research. Research on the use of psychological, physical, and pharmacological therapies in autistic CYP suggests that modifications are required to ensure treatment accessibility and efficacy. However, it is unclear whether existing treatments that comprise the “gold-standard” treatment literature in pediatric chronic pain offer such adaptations, nor is it clear whether autistic CYP are represented in treatment studies. The aim of the present review was to review studies included in published Cochrane reviews of treatment for pediatric chronic pain to determine the representation and accommodation of autistic CYP. Specifically, we aimed to examine whether autistic CYP were explicitly or implicitly excluded from randomized controlled trials for pediatric chronic pain treatment, and whether prevalence and outcomes are reported separately for autistic CYP.
Methods
We reviewed studies from published Cochrane reviews of treatments for pediatric chronic pain. This included reviews of the following treatments: non-steroidal anti-inflammatory drugs (Eccleston et al. 2017), opioids (Cooper et al., 2017b), physical activity and education (Nascimento Leite et al., 2023), psychological therapies (Fisher et al. 2019; Fisher et al. 2018), antidepressants (Cooper et al. 2017c), antiepileptic drugs (Cooper et al. 2017d), and paracetamol/acetaminophen (Cooper et al. 2017a). Data was extracted by one reviewer regarding implicit and explicit exclusion criteria for autistic CYP, and whether any data was reported on autistic participants or trial modifications. Double-coding for reliability is underway.
Results
73 studies were included across the Cochrane reviews, with 72 included in the present review (one was not available for extraction as the manuscript was not in English). Thirteen studies (18.1%) had criteria that explicitly excluded autistic CYP (e.g., listing autism or developmental disability as an exclusion criteria). Of those that did not explicitly exclude autistic CYP, none reported separate data specific to this population. More than half of the studies (n=38, 52.8%) had criteria that implicitly excluded autistic CYP, such as requiring verbal communication, or excluding conditions that commonly co-occur in autistic CYP (e.g., learning disabilities, intellectual disabilities, psychiatric conditions, other health concerns).
Conclusions
Literature is emerging on unique pain experiences and considerations for autistic CYP. While substantial evidence exists for the treatment of pediatric chronic pain in neurotypical populations, this literature has poor representation of autistic CYP. Historically, clinical trials have outright excluded autistic young people, or have failed to consider necessary modifications for provide inclusive options for the care of autistic CYP. A lack of measurement of the prevalence of autism diagnoses amongst treatment samples was also apparent. There is an imperative for researchers to address issues of accessibility and neurodiversity in designing and delivering treatments for pediatric chronic pain.
References
Cooper TE, Fisher E, Anderson B, Wilkinson NMR, Williams DG, Eccleston C. Paracetamol (acetaminophen) for chronic non?cancer pain in children and adolescents. Cochrane Database of Systematic Reviews 2017, Issue 8. Art. No.: CD012539. DOI: 10.1002/14651858.CD012539
Cooper TE, Fisher E, Gray AL, Krane E, Sethna N, van Tilburg MAL, Zernikow B, Wiffen PJ. Opioids for chronic non?cancer pain in children and adolescents. Cochrane Database of Systematic Reviews 2017, Issue 7. Art. No.: CD012538. DOI: 10.1002/14651858.CD012538.pub2.
Cooper TE, Heathcote LC, Clinch J, Gold JI, Howard R, Lord SM, Schechter N, Wood C, Wiffen PJ. Antidepressants for chronic non?cancer pain in children and adolescents. Cochrane Database of Systematic Reviews 2017, Issue 8. Art. No.: CD012535. DOI: 10.1002/14651858.CD012535.pub2.
Cooper TE, Wiffen PJ, Heathcote LC, Clinch J, Howard R, Krane E, Lord SM, Sethna N, Schechter N, Wood C. Antiepileptic drugs for chronic non?cancer pain in children and adolescents. Cochrane Database of Systematic Reviews 2017, Issue 8. Art. No.: CD012536. DOI: 10.1002/14651858.CD012536.pub2.
Eccleston C, Cooper TE, Fisher E, Anderson B, Wilkinson NMR. Non?steroidal anti?inflammatory drugs (NSAIDs) for chronic non?cancer pain in children and adolescents. Cochrane Database of Systematic Reviews 2017, Issue 8. Art. No.: CD012537. DOI: 10.1002/14651858.CD012537.pub2.
Fisher E, Law E, Dudeney J, Eccleston C, Palermo TM. Psychological therapies (remotely delivered) for the management of chronic and recurrent pain in children and adolescents. Cochrane Database of Systematic Reviews 2019, Issue 4. Art. No.: CD011118. DOI: 10.1002/14651858.CD011118.pub3.
Fisher E, Law E, Dudeney J, Palermo TM, Stewart G, Eccleston C. Psychological therapies for the management of chronic and recurrent pain in children and adolescents. Cochrane Database of Systematic Reviews 2018, Issue 9. Art. No.: CD003968. DOI: 10.1002/14651858.CD003968.pub5
Han GT, Heavner HS, Rains TR, Hoang AH, Stone AL. Chronic Pain in Autistic Youth: Clinical Prevalence and Reflections on Tailoring Evidence-Based Interventions from an Interdisciplinary Treatment Team. Children (Basel). 2024 Mar 6;11(3):312. doi: 10.3390/children11030312.
Nascimento Leite M, Kamper SJ, O’Connell NE, Michaleff ZA, Fisher E, Viana Silva P, Williams CM, Yamato TP. Physical activity and education about physical activity for chronic musculoskeletal pain in children and adolescents. Cochrane Database of Systematic Reviews 2023, Issue 7. Art. No.: CD013527. DOI: 10.1002/14651858.CD013527.pub2.
Whitney DG, Shapiro DN. National Prevalence of Pain Among Children and Adolescents With Autism Spectrum Disorders. JAMA Pediatr. 2019;173(12):1203–1205. doi:10.1001/jamapediatrics.2019.3826
Presenting Author
Katelynn Boerner
Poster Authors
Katelynn Boerner
PhD
University of British Columbia
Lead Author
Aishwarya Heran
BC Children's Hospital Research Institute
Lead Author
Colleen Pawliuk
MLIS
BC Children's Hospital Research Instititute
Lead Author
Bethany Donaghy
Liverpool John Moores University
Lead Author
David Moore
Liverpool John Moores University
Lead Author
Kai Leong
University of British Columbia
Lead Author
Hemakumar Devan
Rehabilitation Teaching and Research Unit (RTRU), Department of Medicine, University of Otago, Welli
Lead Author
Tim Oberlander
MD FRCPC
University of British Columbia
Lead Author
Topics
- Pain in Special Populations: Intellectual, Developmental, and Functional Disability