Cerebral Palsy Research Network Blog

Archive for Knowledge Translation – Page 2

MyCP.org reaches 1000 participants

MyCP.org, a web portal supporting community engagement in research for cerebral palsy (CP), crossed the milestone of 1,000 users this past week! MyCP.org is owned and operated by the Cerebral Palsy Research Network (CPRN) to provide a place for members of the extended CP community – people with CP, parents and caregivers, advocates, clinicians and researchers – to collaborate on advancing research to improve outcomes for people with CP. Community members can interact to share experiences, advise on research priorities, or learn about existing evidence for various medical treatments. Physicians and therapists that both treat and research the condition of CP often engage in the conversation or seek community input.

MyCP provides several functions for the community including:

Members of the community may contribute their experiences with each other and connect with researchers seeking to understand the experiences of people with CP and partner together for advancing research.  In addition to participation in research, the forum provides members with an opportunity to verify the latest evidence in support of medical and surgical treatments.  For example, this week a community member sought knowledge about an orthopedic surgery and received a reply from a renown CP orthopedic surgeon within 24 hours. (Please note: that MyCP is not a place to ask for medical advice, rather it is a learning and support environment where evidence for the general population may be shared. Talk to your medical team for specific information about you or your loved one’s condition, their specific needs or to understand how existing evidence may or may not apply to your situation and goals. )

MyCP is a resource for the whole community and our programming has been generously promoted by the CP Foundation, CP NOW and UCP.  CPRN thanks these organizations for the sharing our studies with the broader CP community. We look forward to reporting the results of the research back to their audiences over time.

MyCP’s community is made up predominantly of adults with CP, parents of children with CP and medical providers who treat people with CP. It also includes researchers, advocates and industry professionals. People from the community make up 80% of the participants and clinicians are 14%.  Of the 813 members of the community, 58% are people with CP and 37% are parents. There is also a teen only forum. There are many active studies for the community to participate in including “Speech and Language Predictors of Participation for Children with Cerebral Palsy” for the parents of children between 4-17 and the “Adult Study of Personal Wellbeing, Pain and Stigma.”  Please join the conversation and help make a difference in outcomes for people with CP!

SDR surgery and early rehabilitation

This is the fourth of five in a series of blog posts on selective dorsal rhizotomy (SDR) in adulthood by Lily Collison — the inaugural author for Knowledge Translation Tuesday for the Cerebral Palsy Research Network (CPRN).  You can comment and discuss the article with Lily on MyCP.org.

Today I will explain a little more about selective dorsal rhizotomy (SDR) and then describe Tommy’s experience of SDR and early rehabilitation.

SDR only reduces spasticity, not other types of high tone. Of the various tone-reducing treatments (oral medications, botulinum neurotoxin injection, phenol injection, intrathecal baclofen, and SDR), SDR is the only irreversible tone-reducing treatment. What do the three words –“selective dorsal rhizotomy” mean?

  • Selective: Only certain abnormal nerve rootlets are cut.
  • Dorsal: “Dorsal” refers to the sensory nerve rootlets–it the sensory nerve rootlets that are cut. (The sensory nerve rootlets are termed “dorsal” because they are located toward the back of the body. The motor nerve rootlets are termed “ventral” because they are toward the front.)
  • Rhizotomy: “Rhizo” means “root,” and “otomy” means “to cut into.”

Putting it all together, “selective dorsal rhizotomy” means that certain abnormal, dorsal nerve rootlets are cut. SDR is a major operation, and the better the rehabilitation, the better the outcome is likely to be. Just as the operation itself varies between institutions, different institutions have different rehabilitation protocols post-SDR. Typically patients undergo intensive physical therapy lasting approximately one year starting in the first days after surgery.

Tommy travelled to St. Paul on Wednesday February 5, 2020 for tests on Thursday followed by his SDR surgery on Friday. The plan was that he would spend four weeks in St. Paul for the initial intensive rehabilitation and then return to work/continue his rehabilitation back in San Francisco, where he lives. My husband and I travelled to St. Paul to support him there. Tommy was admitted on the morning of surgery and wasn’t unduly nervous. (He even pitched the idea of a career change to the anesthesiologist–“Hey come to Lambda School–lots of people are changing career and learning to code” [Tommy works at Lambda School, an online coding school] 🙂.)

There are two SDR techniques, the cauda and conus, named after the level of the spinal cord at which each procedure is performed. The choice of technique is provider-specific but also depends on the patient. The cauda technique was used in Tommy’s case. Dr. Kim (neurosurgeon) performed the surgery with Dr. Ward (Physical Medicine and Rehabilitation physician) monitoring. The surgery involved removal of the back of the vertebrae (the lamina) in order to access the spinal cord. The dorsal nerve roots were dissected into rootlets, and the rootlets were individually electrically stimulated to determine whether they triggered a normal or abnormal (spastic) response. If a rootlet triggered an abnormal response, it was cut. If not, it was left alone. 30% of dorsal nerve rootlets from L2 to S1 were cut during Tommy’s six hour surgery.

For the first three days post-op, Tommy was confined to lying on his back to allow healing of the dura–the cover of the spinal cord. His pain level was manageable; he did have some stiffness in his back and some unusual sensations in his feet–numbness and hypersensitivity (likely due to the handling of nerve rootlets which would have caused temporary nerve damage). Wound healing progressed well. Three days post-op he was gradually brought to a sitting position and closely monitored for headache (to ensure that the dura was fully healed–no cerebrospinal fluid leakage). He received physical and occupational therapies as an in-patient. He wore knee immobilizers 50% of the time as per plan. He left hospital using a rented wheelchair four days post-op, a day earlier than scheduled. (Indeed, he was well enough to have dinner that evening in the restaurant of our hotel–a goal of Tommy’s.) Over the next three weeks, he attended twice daily out-patient physical therapy and did exercises at home. Posterior leaf-spring AFOs (PLOs) were prescribed and manufactured. During that time he progressed from using a wheelchair to walking with a walker and then to walking with two crutches. The altered sensations he felt in the immediate post-op period, diminished with time. Four weeks post-op (March 4th)–he returned home to San Francisco. Little did we know what was to unfold with COVID-19.

Here are some photos.

Day 4 post-op: Leaving hospital.
Day 4 post-op: Leaving hospital.

Webinar: Patient Reported Outcomes and Shared Decision Making

Unni Narayanan, MD, MSc
Dr. Unni Narayanan is a pediatric orthopedic surgeon at SickKids

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in its MyCP Webinar Series will feature Unni Narayanan, MD, MSc who is a pediatric orthopedic surgeon at SickKids in Toronto, Canada on Monday, August 17, at 8 pm ET. The topic is “Can we make patient reported outcome measures useful to patients and parents?” Dr. Narayanan has developed several patient-reported outcome (PRO) measures to assess the effectiveness of surgical interventions in cerebral palsy (CP). Now his research is seeking to determine if those PROs can be used to facilitate a shared decision making between patients/caregivers and clinicians. Shared decision making is a process by which clinicians and patients or caregivers collaborate to understand the evidence base behind interventions and the tradeoffs between interventions or alternatives to surgeries and medications. Shared decision making is very important in CP because most surgeries are elective. Dr. Narayanan will present his recently funded research project being done in conjunction with CPRN and then take questions from attendees. The presentation will be approximately 20 minutes followed by an open ended Q&A.

Parents, caregivers and adults with CP can access the PROs developed by Dr. Narayanan by joining MyCP.org where they can be found in the CPRN Community Registry. After completing one of these measures, you can print out the results to share them with your CP physician and facilitate the shared decision making process now!

Interested participants need to register for the webinar to be sent instructions for joining.  Webinars will be recorded and posted for later viewing.  The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies.  Please join us!