Research consultant

Physical activity and the prevention of chronic diseases: where is the research on people living with a disability?

KEY POINTS
  • For the general population, extensive high-quality research has established the link between physical activity and reduced risk of chronic disease, and has been used to formulate policies, programs and clinical practice guidelines for physical activity around the world.

  • Virtually no research has evaluated physical activity and chronic disease prevention in people with disabilities, hampering the development of best practices to address health differences and disparities in this vulnerable population.

  • Research on physical activity and the prevention of chronic diseases in people with disabilities can be advanced by engaging in coordinated international efforts to collect and disaggregate data at the level of the population of people with disabilities, ending exclusionary scientific practices and promoting scientific and clinical appreciation of differences and disparities.

More than one billion people, or 15% of the world’s population, live with some form of disability.1 Disability is not simply the presence of a medical condition. Rather, disability occurs when impairments (physical, mental, sensory, intellectual) interact with personal and environmental barriers to prevent a person from fully participating in society.1 For example, a patient with arthritis is not necessarily “disabled”, but if they have impaired physical functioning and architectural barriers (eg stairs instead of elevators) or policies (eg , mobility scooters banned from public transportation) restrict their ability to work or move freely in their community, that person would be considered disabled.1

People with disabilities are more at risk of developing chronic diseases than the general population.1 For the general population, extensive high-quality evidence from population-level observational studies and randomized controlled trials (RCTs) has shown that physical activity is associated with a lower risk of developing chronic diseases, including cardiovascular disease, type 2 diabetes and localized cancers. 2,3 This evidence has been put into practice around the world in the form of physical activity policies, programs and clinical practice guidelines. In contrast, there is virtually no research on the role of physical activity in preventing chronic disease in people with disabilities.24

Through separate physical activity guideline development processes, scientists from the United States Department of Health and Human Services3 and the World Health Organization (WHO)5,6 reviewed research on 9 common disabling conditions: osteoarthritis, intellectual disabilities, multiple sclerosis, Parkinson’s disease, history of stroke, major clinical depression, attention deficit/hyperactivity disorder, schizophrenia and spinal cord injury . Each organization found insufficient research to determine the relationship between physical activity and the risk of developing chronic diseases for people with any of these conditions. 3,5,6 In our search for articles published from 1999 to 2019 in 5 high-impact medical journals (The BMJ, The Lancet, JAMA, JAMA Internal Medicine and The New England Journal of Medicine), using search terms for 55 conditions (e.g. chronic pain, autism spectrum disorder, epilepsy) and impairments (e.g. hearing, sight, intellectual) that can lead to disability, only 0.3% of the approximately 27 000 articles dealt with chronic disease prevention, health promotion or health factors in people with these conditions or impairments4 and less than 0.001% related to physical activity.

It is clear that an insufficient body of research (population-level observational studies, RCTs) assesses physical activity to prevent chronic disease in people living with disabilities. Without data, it is impossible to develop evidence-based physical activity policies, programs and guidelines to address the health differences and disparities experienced by these vulnerable populations. What is the solution?

Coordinated efforts are needed to collect population-level data on physical activity and chronic disease among people with disabilities. Currently, no existing international surveillance system at the population level monitors and assesses physical activity and chronic disease among people with disabilities, unlike the general population. In most national health surveillance systems, disability is either an exclusion criterion or it is not measured.4 This limitation can be overcome by implementing standardized and valid measures of disability (for example, the WHO Disability Assessment Schedule, which measures disability as the impact of health conditions on functioning in 6 domains of life) in ongoing data collection systems at the population level.4 and disaggregate data on disability status. Resources should be dedicated to the deliberate inclusion of people living with disabilities in these systems to ensure adequate statistical power for analyses. Population-level assessment of the physical activity of people living with disabilities requires more attention and effort. Scientists need to develop better measures of physical activity that are valid and reliable for people with different types of impairments.4

Additionally, scientific practices that prevent people with disabilities from participating in research on physical activity and chronic disease outcomes must end. For example, gait, mental health and communication disorders were exclusion criteria in landmark clinical trials evaluating the effectiveness of physical activity in reducing risk factors for type 2 diabetes and cardiovascular illnesses,7,8 trials that have informed recommendations on physical activity to prevent and treat type 2 diabetes. The exclusion of people with disabilities from such studies violates the fundamental principle of fairness in research ethics9 that no segment of the population should be deprived of the benefits of research, and that is a matter of human rights. The United Nations’ Convention on the Rights of Persons with Disabilities legally obliges countries to collect data to formulate policies guaranteeing the rights of persons with disabilities, such as the right to enjoy the highest attainable standard of health and to participate on an equal basis with others in physical activity.ten

Scientific gatekeepers (e.g., funding agencies, journal editors, ethics committees) should implement policies to uphold these rights, such as imposing a representative number of people living with a disability in study samples, measures of disability and disaggregation of disability data, research methods that incorporate research design11 (e.g. providing study consent forms and surveys in braille, sign language and plain language; fitness testing using adapted exercise equipment) and meaningful engagement of people living with a disability throughout the research process.4 These actions will require limited resources. However, limited resources cannot justify continuing violations of ethical and human rights in science.

Scientists and clinicians should also be made aware of the differences and disparities between people with and without disabilities. The WHO recently formulated physical activity guidelines for people living with disabilities based almost entirely on evidence from non-disabled people.6 Yet, a great deal of research shows that people with certain physical (particularly neurological and limb) impairments have attenuated cardiometabolic responses to physical activity and, therefore, may not experience the same health benefits from a particular amount of physical activity than people without impairments.12 Therefore, we cannot assume that recommendations for physical activity to reduce risk of chronic disease in the general population apply to people with disabilities. 12 Population-level observational studies and RCTs involving people with disabilities are needed to make evidence-based recommendations regarding the amount of physical activity needed to reduce the risk of chronic disease in this population.

Additionally, people with disabilities face greater barriers to meeting physical activity recommendations and participating in physical activity programs than the general population.4 Health systems and behavioral research is needed to inform policies and interventions, and to educate healthcare providers on how to improve physical activity and prevent chronic disease in people with disabilities. It should be noted that physicians generally receive very little training in disability assessment or management, in part due to a lack of research data.

People with disabilities urgently need advances in health science and practice. Addressing the lack of research on physical activity and chronic disease prevention for people with disabilities has profound implications for developing evidence-based best practices in health service delivery, reducing the cost of care health and improving the well-being of more than one billion adults and children. worldwide.

Acknowledgement

The authors thank Adrienne Sinden for her support in data analysis and preparation of the manuscript.

Footnotes

  • Competing interests: Kathleen Martin Ginis currently holds funds for physical activity and disability research from the Canadian Institutes of Health Research, Social Sciences and Humanities Research Council, Canadian Tire Jumpstart Charities and Praxis Spinal Cord Institute. No other competing interests were declared.

  • This article has been peer reviewed.

  • Contributors: All authors have contributed to the conception and design of the book. Ritu Sharma conducted the literature search, and Kathleen Martin Ginis and Ritu Sharma analyzed the data. Kathleen Martin Ginis wrote the manuscript, and Ritu Sharma and Sarah Brears revised it critically for significant intellectual content. All authors have given final approval to the version for publication and have agreed to be responsible for all aspects of the work.

  • Funding: Kathleen Martin Ginis is supported by UBC’s Reichwald Family Southern Medical Program Chair in Preventive Medicine.

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