SCI Pain and Quality of Life Post Discharge

Dr. Kathryn Boschen and Dr. Judith Hunter presented an outstanding lecture on breakthrough research being conducted on SCI pain and quality of life for consumers. This research impacts not only people with a SCI, but how researchers and healthcare professionals can work together to arrive at solutions that will assist people experiencing pain, so they can better cope with it during the rehabilitation process and once they return to live active lives in the community.

Dr. Boschen, who holds a PhD in Social Psychology and is a Senior Research Scientist with Toronto Rehab, Lyndhurst Spinal Cord Centre, is an expert in Quality of Life issues of individuals with a spinal cord injury post-discharge from rehabilitation. She has conducted numerous studies in this field and provided a riveting review of the most recent study to date.

She cited that they have compiled a SCI long-term follow-up database based on demographics, secondary complications and a satisfaction life scale. This study was conducted with 827 former Lyndhurst patients. Of the research respondents, 50% reported having chronic pain, 33% of whom reported having severe pain. More than a quarter of the respondents said the pain they felt affected their daily activities which is very important to note.

Dr. Hunter, an expert in research focusing on chronic pain after spinal cord injury, who is an Assistant Professor in the Department of Physical Therapy, University of Toronto, a member of the University of Toronto Centre for the Study of Pain, and who was a CPA Ontario research fellow, explained that pain is a complex experience and reflects activity in three areas of the brain: emotional, cognitive, and sensory, all which can formulate different levels to deliver the ‘pain experience’. Chronic pain is one of the most difficult secondary complications of SCI to deal with. She explained there is the nociceptive pain which is normal pain caused by injury to body tissue. And then there is neuropathic pain which is initiated by pain caused by a primary lesion or dysfunction in the nervous system. The latter is much more difficult to treat. She made it clear that when diagnosing pain, you need to separate the two as pain is multidimensional.

Dr. Hunter went on to explain that pain is mostly managed with different drug therapies along with non-pharmacologic interventions including “self-management” training. Treatment is currently based on symptoms. However, each symptom can be caused by many different nervous system mechanisms. The goal in the future is mechanism-based treatment and is multi-dimensional including both pharmacologic and nonpharmacologic interventions.

To delve more into this subject, they conducted a survey to determine the experience of living with a SCI from the perspective of the community of people with a SCI. The report on the results of the survey included demographics, pain, treatment and quality of life. The results were that people experienced pain in their back (95%), legs/feet (82%) and neck/shoulders (79%). When asked to describe pain intensity, and pain quality, the most common feeling was sharp or burning pain. Pharmacological treatments seemed to help a lot, but when asked about the effectiveness of medications, respondents said a lot of the medications helped a little. Only about 40% of the people interviewed were taking medications as prescribed. This could be because people didn’t take medications due to adverse side effects they may have been feeling / trying to avoid. 70% of respondents used distraction to manage pain which seemed to be a very effective method which deserves additional research attention.

The study found that people want to know more about their pain, treatment options and how to get help. There seems to be a gap between the needs of consumers and chronic pain services. They found there is a strong need to address pain during the rehab process and after transition into the community.

Dr. Boschen then went on to describe a study which involved SCI consumers, professionals and researchers who got together to develop research priorities, from which additional research initiatives will and are currently being conducted. They were: Pain Management and Treatment, Measurement Tools, Health Services Policy and Advocacy, Knowledge Transfer and Mechanisms of Pain.

Dr. Heather Flett, who was not able to attend, provided her materials for presentation by Dr. Boschen. Her documents cited the importance of clinical engagement right from the beginning in setting clinical priorities of best practices in SCI to achieve the best patient outcomes. There needs to be a focus on chronic pain and quality of life in consumers with SCI, and collaboration between professional researchers and clinicians.

The work continues and we look forward to hearing more about these breakthrough research projects which will undoubtedly better assist people with a SCI.

To view the complete presentation of this session, and others in the Series, please visit www.cpaont.org.

If you would like to learn more about pain management, some useful resources cited in the presentation are:

Action Ontario: http://www.actionontario.ca

Canadian Pain Coalition which is a consumer advocacy group for chronic pain:
www.canadianpaincoalition.ca

Pain Explained which focuses on pain initiatives. You are welcome to submit a
story to share your experiences with pain so the group can learn more and share
these with policy makers: www.painexplained.ca