Last summer, CP NOW and the *Cerebral Palsy Research Network (CPRN) hosted Research CP, a comprehensive program designed to develop a *consumer centered research agenda for the CP community. Because of this groundbreaking conference, the CP community has a prioritized list of research topics that are meaningful to individuals with CP and representative of what people with CP care about and hope to understand.
After receiving a community engagement award from the Patient Centered Outcomes Research Institute (PCORI), CPRN and CP NOW brought together a diverse group of people to represent the CP community. The group included individuals with CP, family members, personal care attendants, researchers, advocates and CP professionals—including neurosurgeons, developmental pediatricians, physical therapists, orthopedic surgeons, several past presidents of the CP Academy, representatives from NIH, and others.
The program began with a series of educational webinars about research terminology and the kinds of studies that CPRN could support. We then invited webinar participants to join an online voting process where participants proposed and ranked research topics. Finally, in June of 2017 we finished our program with an in-person workshop in Chicago, Illinois. Forty-seven invited participants met to discuss the top-ranking research ideas, share their personal experiences and insights about CP, and describe their visions for the future of CP research. Since our paper has now been published in Developmental Medicine and Child Neurology, I am able to share the results with you:
Through our online process, participants proposed a total of 392 ideas and cast 26,798 votes. During the in-person workshop, twenty of the highest ranking unique ideas were further discussed and analyzed. At the end, we consolidated these twenty ideas down to sixteen.
The top three research ideas-summarized:
- Research issues on aging with CP: Participants want research to focus on how to best treat adults with CP. They also wish to understand how to treat/support children with CP in order to prevent problems that often occur later in life such as pain, fatigue and functional loss.
- Research the best long-term exercise/strength training strategiesfor all levels of CP (GMFCS I-V). They wish to identify what will help each group improve overall health, function/activity and participation across the lifespan.
- Evaluate which interventions (surgeries, injections, medications and therapies, orthotics, equipment and training) produce the best functional outcomes. These outcomes should meet family and patient goals, be sorted by GMFCS level and age, and consider the presence/impact of other chronic conditions the individual may have (co-morbidities).
Themes and sentiments I took away from the experience:
As a planner and participant of Research CP, the experience was more fulfilling than I ever imagined. The passion and diverse experiences that participants shared during the program made me realize what an extraordinary community we have. There was tremendous compassion for the concerns of the entire community and an inclusive vision for the direction of CP research. Participants conveyed a strong message that all gross motor function levels and all ages, without exception, be included in the prioritized research plans. This commitment led to a final list of broader and more inclusive priority research topics than we had anticipated.
At the beginning of the workshop several individuals read personal statements about their connection to the CP community and what they hoped the community could accomplish through this effort. There was palpable vulnerability and humility among the group that I will always remember. It set a tone of collaboration and mutual respect independent of one’s professional title or personal experience. One of the orthopedic surgeons shared that he wanted to sit and listen to the experiences of the individuals with CP and their family members more than he wanted to focus on consolidating our research list. At the same time, the community participants felt overwhelmed to have a diversity of leading CP professionals so carefully consider their experience and insight. One parent, Diantha S., came to the workshop as a personal attendant for her adult daughter Amanda. She referred to herself as a “no-nonsense, stoic woman who doesn’t cry”, but through tears she said,
“I came as a personal attendant for my 40-year old daughter and I was struck that my voice was heard and I’m so glad that you have included the voices of adults and children who have lived the life of cerebral palsy—for our voices to count is overwhelming.” -Diantha S. Elementary School Principal and Parent
The toughest and most emotionally difficult part of the program for me was hearing from our adult participants. Historically there has been little research on adults with CP and their needs. From 2001-2013, only four percent of government funded CP medical research focused on adults (Wu, et al). I felt deeply upset hearing about the chasm in knowledge, support, and resources for adults with CP. Several of them described what they referred to as a “cascading loss of function” where their bodies rapidly declined prematurely as they aged. They each said they felt unprepared emotionally and medically to face these changes. I was floored by the resilience and courage they shared and the way each had adjusted their lives around these changes. At the end of our program many of the doctors, therapists and parents remarked that these personal stories fundamentally changed the way they will approach the care and treatment of individuals with CP/family members.
Beyond these stories, our Research CP program provided me with several more take-home messages. The group repeatedly emphasized the term Lifespan Research and spoke about Improving Participation. Participants want to see long-term research studies that follow outcomes for more than just a few years—the length of typical research studies. For example, do surgeries that produce benefits twelve months later continue to produce benefits in ten years? There were also repeated requests to evaluate treatments and interventions by how they impact function (what can they do) and quality of life and not just the details of whether a muscle is not as tight, or a bone is straighter.
The CP community has a lot of work ahead of it, from determining which treatments work best and for whom, to understanding the impact of treatments into adulthood. It is time for our work to move forward and CP NOW and CPRN are working to widely distribute these community research priorities and to mobilize research around these topics.
The Research CP publication has an open access status (freely available) and can be shared among professional organizations, government/policy makers, researchers and granting agencies. We encourage you to help by sharing it among the CP community and the professionals you meet. CP NOW and CPRN will continue to work with our community representatives and partner organizations, such as the CP Alliance Research Foundation, to request that research funding be aligned with these community priorities. This will help us move closer to finding answers that will help people with CP lead pain free, healthier and more fulfilling lives. The outstanding participation and feedback from this program was better than we ever hoped for and we launched a group of very motivated participants eager to learn from each other. Together we will foster meaningful change for people with CP and we have come much closer to that goal through the Research CPprogram.
Stay tuned because we are planning Research CP 2.0. Our leadership team had a strong desire to revisit some of the research ideas that were outside of the top twenty. The voting process favored broader research questions over more defined ones. Still, we felt there were critical issues affecting smaller populations within the CP community, particularly those with more complex forms of CP, that we needed to open up to the community for further discussion.
A special thank you to the Cerebral Palsy Alliance Research Foundation and the American Academy for Cerebral Palsy and Developmental Medicine for supporting Research CP!
*The Cerebral Palsy research network’s mission is to improve outcomes for people with cerebral palsy through high quality clinical research and quality improvement initiatives. It includes 28 centers throughout the US and Canada that collect data on individuals during office/clinic visits.
*Consumer is used here in place of the more commonly used term “patient”.
- Wu, YW, Mehravari AS, Numis Al, Gross P. Cerebral Palsy research funding from the National Institutes of Health, 2001-2013. Dev Med Child Neuol 2015;57:936-41.