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Many People with SCI May Turn to Complementary and Integrative Healthcare to Manage Their Health and Wellness, but May Need More Information About These Options

A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).

Complementary and integrative healthcare (CIH) is used to describe approaches to managing one's health that may be considered outside of conventional or Western medicine. Some examples of CIH are massage, vitamin supplements, and cannabis, among others.In recent years, the use of CIH has gradually increased among the general population as well as among people with disabilities. However, research has shown that people with disabilities use CIH at much higher rates than those in the general population, primarily to manage pain. Other reasons for CIH use include slowing disease progression and alleviating or managing symptoms related to their disability.

Among people with disabilities, those with spinal cord injury (SCI) can experience a wide range of health conditions associated with their injury. These conditions include physical issues such as pain, spasticity, and bladder/bowel issues, and mental health issues such as depression and anxiety. Previous surveys of people with SCI found that the majority of those surveyed had tried at least one alternative treatment to manage these challenges. However, there is little research on how CIH is used in this population or whether CIH approaches are effective or safe for people with SCI. In a recent NIDILRR-funded study, researchers sought to gain an understanding of the use of CIH in people with SCI. The researchers wanted to know how common it is for people with SCI to use or not use CIH after their injury. The researchers also sought to identify the most frequently used types of CIH among people with SCI, their reasons for using or discontinuing use, and reasons for not using CIH at all.

Researchers from Spinal Cord Injury Model Systems (SCIMS) Centers in Colorado, Illinois, Massachusetts, New Jersey, and Texas looked at survey responses from 411 people with SCI who were enrolled in a SCIMS center between January 2017 and July 2020. The participants answered questions about types of CIH they were currently using and had tried but discontinued, and whether they used CIH for general health or for a specific issue. If they had used CIH in the past but were not using it currently, they indicated how long ago they stopped and reasons for stopping the treatment. The survey also collected demographic information (i.e., age, income, education level, marital status, job status, sex, race/ethnicity, insurance carrier) and injury-related information (i.e., age at injury, injury cause, injury severity and spinal level, and time since injury).

The researchers found that

  • About 80% of the participants had used CIH since their SCI, with almost 70% of the participants currently using at least one type of CIH.
  • About 46% of the participants had used CIH before their SCI and these participants were significantly more likely to have used CIH after their injury compared to those who had not used CIH before their injury.
  • About 20% of the participants had not used any CIH since their injury.
  • At the time of the survey, participants were using more than 180 unique types of CIH in total, with an average of about 4 types of CIH per person. The most common types of CIH they were currently using were multivitamin supplements, massage, cannabis, and Vitamin D. Participants also reported using cannabidiols (CBDs), a derivative of cannabis, to a lesser extent.
  • The most common reasons for using CIH were pain management, general health and wellness, bladder management, and mobility/flexibility/strength.
  • The most common CIH tried after injury, but since discontinued were acupuncture, massage, and chiropractic care.
  • The most common reasons for discontinuing use of CIH were feeling like the CIH approaches weren’t helping, feeling like there was no further need for use, and cost. Other reasons cited were finding a different approach more effective, recommendation from their provider, and issues with legality (e.g., cannabis).
  • For those participants who didn’t use CIH at all after their injury, the reasons that were cited for lack of use were not knowing what options were available, feeling as if they don’t need CIH, and that their primary care physician had not recommended CIH.
  • There was no significant difference in CIH usage based on demographic or injury characteristics except for level of education. A greater percentage of people who did not have a high school diploma said they had never used CIH after their injury.

The authors noted that more than 25% participants reported currently using cannabis and CBDs, despite the fact that use of cannabis, or marijuana, is illegal in many areas of the country. The authors suggested this might be related to increased social acceptance of cannabis and CBDs and suggested that future research examining cannabis and CBD use in this population may be beneficial. Another noteworthy finding was the fact that nearly 40% of participants said that lack of knowledge of available options for CIH was a factor in choosing not to use CIH after their injury. The authors suggested that this may present an educational opportunity for healthcare providers and people with SCI regarding the potential of CIH use. Finally, while the authors noted that additional research on the efficacy of CIH is needed, they suggested that providing CIH education to clinicians and people with SCI may represent a positive step toward improving the well-being and sense of autonomy over healthcare decisions for people with SCI.

To Learn More

The Model Systems Knowledge Translation Center (MSKTC) offers a wide range of evidence-based information resources for people with SCI including factsheets on managing painand urinary tract healthwith both conventional and complementary approaches.

The National Center for Complementary and Integrative Healthat the National Institutes of Health publishes evidence-based information on many alternative approaches to managing health and wellness.

To Learn More About this Study

Coker, J. et al. (2022) Utilization of complementary and integrative healthcare by people with spinal cord injury in the Spinal Cord Injury Model Systems: A descriptive study. Archives of Physical Medicine and Rehabilitation. This article is available from the NARIC collection under Accession Number J88683.

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