- MS Research Australia hosted a workshop on Pain in MS in October 2019 to identify gaps in knowledge in this area, which was rated as one of the highest priorities based on the outcomes of the 2016 Research Priorities Survey.
- Topics on the agenda were the high proportion of people with MS who experience pain (up to 60%), the enormity of its impact on their lives, and challenges faced in its management and care.
- The outcomes and ways forward were discussed in detail at the workshop, which will hopefully lead to improved quality of life for people living with MS who experience pain.
MS Research Australia hosted a workshop on Pain in MS in October after discovering that research into pain was one of the highest priorities based on the 2016 MS Research Australia Research Priorities Survey. The aim was to identify knowledge gaps in this area and highlight the unmet needs of people living with MS-related pain, to improve outcomes for them, their caregivers and families.
Overview of pain in MS
The outcomes from the Research Priorities Survey indicate that there is still so much to learn about pain in MS and the workshop delved into some of these key areas.
- Invisible but debilitating
There was a clear consensus among those who attended the workshop that despite its “invisible” nature, pain can greatly affect the quality of life of those who live with it. - Limited research
It is believed that up to 60% of people with MS experience pain, although there is a surprisingly limited amount of research in this area. - Misconceptions
There appears to be a gap between the experience of pain in MS and the perception of pain in MS from others. - Communications gap
There appears to be a communication gap between healthcare professionals and people with MS about their pain, possibly due to the limited consultation times allocated per person.
Pharmacological strategies to manage pain in MS
Even though there are many pharmacological options available to treat pain in MS, the overwhelming message from people with MS was that the undesirable side effects of many of these medications make them unsustainable for long term use.
One clear outcome from discussing this is the need for more research to better understand the biological pathways associated with pain in MS, which will help develop medications that work with minimal side effects. This will help reduce the impact pain medications have on the quality of life of people with MS taking them.
Those present, particularly people with MS living with pain, were interested in hearing more about the potential for medicinal cannabis to be used in the management of pain. The main issues discussed surrounding this were difficulties in access and the high price. However, the evidence on the effectiveness of medicinal cannabis in treating MS-related pain is low. It was agreed that more research is needed to bridge the gap between the demand from people with MS who experience pain and believe medicinal cannabis to be effective, and the current lack of supporting.
Non-pharmacological strategies to manage pain in MS
There are many side effects associated with pain medications that impact the quality of life of people taking them, and so many people with MS try alternate strategies to manage their pain. Lifestyle changes such as exercising, psychological approaches such as practicing mindfulness, and the improvement of coping strategies through therapy were a few options that were discussed. Although these coping strategies work to an extent, it was agreed that evidence in this area is still emerging, and more robust studies that are designed specifically for people with MS are needed.
A holistic approach to pain management
There was much discussion about the consideration of both pharmacological and non-pharmacological interventions when managing pain in a clinical environment. People with MS and healthcare professionals who attended the workshop agreed that appropriate use of both pharmacological and non-pharmacological measures make for effective pain management. But more information is needed on how the combinations of these interventions can be optimised for each individual. This would result in clinical practice shifting towards a more multidisciplinary and collaborative approach to help manage and treat pain, and will promote collaboration between pain clinics and MS clinics.
Moving forward to close the gaps
The workshop was incredibly productive and it was clear that the following is needed to improve treatment and quality of life of people living with MS:
- More MS-related pain research
Funding for more research into MS-related pain would pave the way to addressing the gaps in this area and provide much needed clarity around the topics discussed and ultimately improve the quality of life of people with MS who are experiencing pain. - Patient reported outcome research
There is an opportunity for pain to be a significant focus of patient reported outcome research, through longitudinal surveys, such as the Australian MS Longitudinal Study (AMSLS)– this would provide a more accurate picture of MS-related pain and information that could empower people to proactively drive their clinical care and improve outcomes. - A standardised way to quantify pain
A standardised way to quantify the experience of pain needs to be developed to address the gap between MS pain experience and pain perception by those without MS. - A communications tool
The development of an appropriate tool could improve communications between healthcare professionals and people with MS. This could include the person with MS completing a tailored MS pain form prior to consultation, to maximise their time with their medical team.
Collaboration is key
We hope to continue to work collaboratively with organisations such as MS Australia and national pain bodies such as Pain Australia and Chronic Pain Australia, who advocate for the needs of people living with pain. By working together we can raise awareness about MS-related pain amongst the medical community and help bridge the communication gap between people with MS and clinicians.
We are very thankful to the delegates who attended the workshop and made significant contributions towards discussions on the day, which in turn have helped shape the ways forward. More information about the outcomes of the workshop can be found in our Scientific Report.
