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When Pain Intrudes on Daily Function: A Study of Individuals Living with Multiple Sclerosis

A Mandell Center team examines how MS-related pain impacts patients’ ability to carry out activities away from home. Plus, how cognitive strategies and family support may make a difference.

Pain and pain-related illness, as well as beliefs about pain, had a limiting effect on the ability of individuals with multiple sclerosis (MS) to engage in activities, based on data from 161 adults with MS who reported at least mild pain.

Much like many chronic conditions, pain can interfere with the ability of persons with MS to perform activities of daily living, wrote Elizabeth S. Gromisch, PhD, and her colleagues at the Mandell Center for Multiple Sclerosis at Mount Sinai Rehabilitation Hospital in Hartford, Connecticut, in a paper published in Multiple Sclerosis and Related Disorders.1

“Furthermore, beliefs about pain and activity engagement are reliably associated with persons’ experience of chronic pain,” noted the researchers. For example, individuals with MS may engage in less physical activity “due to fear that it will worsen their pain” – that is, fear avoidance and/or catastrophizing. However, this lack of engagement tends to result in greater pain over time due to deconditioning and decreased physical function, the researchers pointed out in their study.1

Carrying out activities away from home prove to be most painful for people with multiple sclerosis. (Image: iStock)

Pain-Related Intrusiveness on Daily Function

Specifically, the researchers examined how much activity engagement among those with MS was limited by pain-related intrusiveness associated with their illness. The average age of the participants was 59 years; most were women and Caucasian, with an average MS duration of 20 years.

The researchers went through the North American Research Committee on MS to identify 161 patients who had at least mild pain; they used the Illness Intrusiveness Rating Scale to assess pain. Participants used a Likert scale ranging from 1 (not very much) to 7 (very much), to rate the intrusiveness of their pain in 10 areas: health, work, active recreation, financial, relationship with significant other, sex, family relations, other social relations, self-expression/self-improvement, and community and civic engagement. They also completed the West Haven Yale Multidimensional Pain Inventory to indicate activity engagement, using a scale of 0 (never) to 6 (very often) to show how often they took part in 18 activities divided into four subscales:

  • activities away from home (eg, taking a trip)
  • household chores (eg, grocery shopping, cleaning)
  • social activities (eg, visiting friends)
  • outdoor work.  

Intrusiveness of pain related to their illness was significantly correlated with activities away from home (P < .001) as well as social activities (P = .001) and household chores (P < 0.05).

After controlling for physical disability based on the Patient Determined Disease Steps and depressive symptom severity, taken from the Hospital Anxiety and Depression Scale, intrusiveness of illness-related pain remained significantly associated only with activities away from home. This variation in the role of disability and reduced activity engagement is consistent with findings from previous studies, noted Dr. Gromisch’s team in their paper.

The findings suggested that those participants with MS who view their pain as more intrusive were less likely to engage in activities outside of their home. At the same time, results suggested that those who used positive coping strategies (eg, distraction), rather than negative strategies (eg, avoidance), were more likely to engage in activities outside of the home.

Researchers used subscales of the MS Resiliency Scale to determine which coping strategies impacted engagement in activities away from home. Two subscales were significantly correlated with such activities: Emotional and Cognitive Strategies, and Support from Family and Friends (P < .001 for both).

Overall, the researchers concluded, for individuals with MS, “their pain experience is significantly associated with activity engagement, with pain-related illness intrusiveness predicting engagement in activities away from home. The indirect effects of emotional and cognitive strategies on that relationship indicate the contributions of coping behaviors on involvement in activities.”

The published report noted a few limitations, including: the use of self-reports, the use of a modified, unvalidated Illness Intrusiveness Ratings Scale, and lack of data on additional MS-related factors such as fatigue. In terms of clinical application, the study was too small to determine whether cognitive and behavioral strategies may help patients with MS manage pain in a way that could increase their engagement in activities overall. The team, therefore, proposed a larger, interventional trial involving coping strategies to help clinicians guide patients and potentially improve their quality of life.

See also, Cannabinoids for MS pain and spasticity

Practical Takeaways

Pain affects more than 60% of individuals with MS and this study supports previous research showing how pain interferes with activity, according to Kathleen Costello, MS, CRNP, MSCN, associate vice president for healthcare access for the National Multiple Sclerosis Society. “Pain assessment and effective management strategies are of high importance” in this population, she said.

Importantly, Dr. Gromisch’s study “was able to identify specific activities that were impacted by pain, specifically activities away from home, and … looked at responses to the MS resiliency scale that suggested certain strategies could mediate the pain-activity relationship,” added Costello. Looking ahead, she commented that, “Helping patients identify and employ strategies to improve their resilience may be able to help them continue their activities even when pain is one of their challenges.”



Last updated on: August 3, 2020
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