Background & Aims

We now know that people with developmental disabilities can experience pain as much as the general population, and pain is a common problem affecting their well-being (1). There often are difficulties assessing pain in this population due to high rates of co-occurring intellectual and communication disabilities (2). With accumulated evidence of pain and developmental disabilities over time, it is time to reflect on the research landscape and the key players and collaborators in this field and identify emerging trends. The study aims to determine the conceptual and research collaboration structures of pain research in developmental disabilities over three decades. This includes identifying the evolving research themes and the collaboration patterns among countries in this domain from 1990 to 2024. The study’s overarching goal is to provide insights into the research landscape on pain in developmental disabilities, highlighting research gaps and further research priorities.

Methods

The literature search was done in Scopus, a multidisciplinary database, from January 1990 to February 2024. Broad terms such as pain and developmental disability and diagnosis-specific terms, e.g., cerebral palsy, were searched in the keywords and titles of the documents. The search was limited to published, in-press articles and review papers in health, social science, and multidisciplinary fields such as medicine, neuroscience, pharmacology, biochemistry, psychology, and nursing. Literature from all countries and in all languages was included. Title and abstracts were screened to remove articles out of scope. Duplicate records were removed using Mendeley. The bibliometric analyses were carried out in RStudio. Semantic network analysis was used to identify the research themes and the distinct time periods of evolving trends of research themes using Keywords Plus. Collaboration network analysis was applied to determine the clusters of countries that are active in this domain.

Results

Scopus search retrieved 1683 documents. After screening, 822 articles were included for analysis. Pain research in developmental disabilities has grown by an average of 7% per year. Most publications are collaborative works within countries. Seventy-two percent of the scientific literature is from eight countries: the United States (30%), Australia (8%), the United Kingdom (7%), Canada (7%), Sweden (6%), France (6%), Norway (4%), and the Netherlands (4%). Intercountry collaboration mainly occurred between these countries. Children and adolescents have mostly been studied. Clinical studies and treatment outcome research are the most common types of research. Evolving trends are identified in three periods: 1990-2011, 2012-2019, and 2020-2024. Themes around muscle spasticity, botulinum toxin A, and cerebral palsy dominate the research structure in all periods. Additionally, the research is more focused on gastrointestinal problems, and opiates and analgesics topics in the first and third periods. The remaining themes evolve over time: side effects and comorbidity in the first period; bone health, hip problems, scoliosis, meningomyelocele, and neuromuscular disease in the second period; and depression, mood disorder, fatigue, quality of life and chronic pain in the last period.

Conclusions

Over the past three decades, there has been a growing interest in the scientific community in understanding and managing pain in people with developmental disabilities. Themes around muscle spasticity, botulinum toxin A, and cerebral palsy have remained consistently dominant throughout the years and continue to be so in current research efforts. There has been a notable shift in interest from physical health towards mental and social dimensions of health after 2019, such as fatigue and quality of life. Moving forward, the scientific community should continue to push the boundaries of knowledge in pain across a wide spectrum of developmental disabilities and in a holistic approach within the biopsychosocial framework. Considering that most literature is from high-income countries and the research collaboration network is tightly knitted among certain regions, efforts should be made to promote inclusivity in pain research in the developmental disability field.

References

1. Barney CC, Andersen RD, Defrin R, Genik LM, McGuire BE, Symons FJ. Challenges in pain assessment and management among individuals with intellectual and developmental disabilities. Pain Reports. 2020;5(4). doi:10.1097/PR9.0000000000000822

2. Williams E, Coghill J. Understanding and managing pain in children with cerebral palsy. Paediatr Child Health (Oxford). 2023;33(1):17-22. doi:10.1016/J.PAED.2022.10.009

Presenting Author

May Phyu Sin

Poster Authors

May Phyu Sin

MD, MPH, MSc Medical Science

Lund University

Lead Author

E-mail

Topics

  • Pain in Special Populations: Intellectual, Developmental, and Functional Disability