The Cerebral Palsy Research Network (CPRN) has initiated a new quality improvement initiative focused on health care transition (HCT) for teens and young adults with cerebral palsy (CP). HCT is an important issue for all teens to get ready to enter the adult healthcare system but it is extraordinarily important for teens with chronic conditions such as CP. Teens with CP can have a range of challenges transitioning to the adult care environment including finding adult care providers who understand the complexities and long-term effects of cerebral palsy to being comfortable to leading the discussion of their medical care with physicians. The adult healthcare system is very different from the pediatric care systems that families are accustomed to for care. For teens capable of self determination, developing the skills and knowledge to advocate for themselves in the medical environment can be a daunting task. Translating those skills to adult healthcare requires thoughtful planning to avoid neglecting one’s long term health. For medically complex teens with CP, HCT requires more wholistic planning to provide quality continuity of care as an adult. CPRN is leveraging the tools and resources from Got Transition to guide its work and augmenting it with the experience of CPRN sites.
CPRN’s HCT initiative was inspired by its Community Advisory Committee (CAC) and its Research CP research agenda. During its annual review of progress with its community advisors, CAC member and Research CP participant Lisa Diller encouraged CPRN leadership to take on the challenge of transition. “As parents, we are in the process of guiding our teens to develop independence in all aspects of their lives in order to be successful adults. For all children, but particularly those with CP, this includes empowering them with the knowledge they need to be responsible for their healthcare and an understanding of what additional risks they may face,” said Diller, a physical therapist and mother of a 15-year-old son with CP. “Our home hospital is Seattle Children’s, a CPRN site, and we wanted to see it take a leadership role in health care transition for CP.”
Seven sites including AI DuPont, Children’s Alabama, Michigan Medicine, Nationwide Children’s Hospital, Primary Children’s Hospital, Seattle Children’s Hospital and UNC Chapel Hill are participating in the initial efforts. CPRN is also partnering with the Hydrocephalus Association to advance HCT for teens with hydrocephalus, a common co-morbidity with CP, because the organizations share similar infrastructure for advancing HCT. CPRN Chairman Paul Gross is a former board member of the Hydrocephalus Association and got exposed to issues of HCT through a workshop that the association organized in 2017.
CPRN is excited to tackle this very important problem using quality improvement methodology because the community should begin to benefit from the effort much more rapidly. CPRN will leverage the experiences of leaders like AI duPont and Children’s of Alabama to advance health care transition across all participating sites.
The Cerebral Palsy Research Network (CPRN) has launched its community web portal called MyCerebralPalsy.org
(MyCP). MyCP is a destination where members of the community with cerebral palsy (CP) – both people with CP and their caregivers – along with advocates, researchers and clinicians, can engage in discussions about research and participate in surveys. MyCP will provide access to three primary services:
- the CPRN Community Registry – a database of people with CP confidentially and privately sharing information about their condition with researchers through surveys;
- the MyCP forum – a place for discussions among community members, clinicians and advocates about CP research;
- Research News – a blog about groundbreaking studies, new evidence from research and research in progress with CPRN.
The CPRN Community Registry allows members of the community to participate in confidential surveys about their experience with CP. This information is used by CPRN researchers to understand the natural history of CP to generate new knowledge for future research and enhancements to services for people with CP. It also allows CPRN to find members of the community who want to participate in clinical trials or other studies. All information gathered in the CPRN Community Registry is stored securely at the University of Utah under the guidance of the University of Utah ethics board (institutional review board).
The MyCP forum provides member to member discussions about important research topics such as “what is the most pressing thing to study in CP?” MyCP members includes people in the community with CP, their caregivers, advocates, clinicians and researchers. All identities are protected and the discussions are not accessible by non-members or search engines. MyCP discussions help direct the course of research at CPRN.
CPRN launched study of adults with CP
The Cerebral Palsy Research Network (CPRN) launched its first study of adults with cerebral palsy (CP) today. The study is open to anyone with CP that is 18-years-old or older and is available on the web at https://mycerebralpalsy.org
. The study consists of a series of surveys about an individual’s health, motor abilities, social and emotional health, and experience with chronic pain. It should take approximately 20 minutes to complete. The study of adults with CP was a key priority that was identified in the National Institutes of Health Strategic Plan for Cerebral Palsy (link) that was released in October 2017.
Mary Gannotti, PT, PhD, professor of Physical Therapy at University of Hartford
“The quickest way to get information about the issues adults with cerebral palsy are facing with aging, including functional changes, stigma, pain impact and pain treatments that work, is to ask adults with cerebral palsy,” said Mary Gannotti, PT, PhD, and co-chair of the CPRN Adult Study Panel. “We are thrilled to have MyCerebralpasly.org launch these surveys!” she added, “and we hope to people post their thoughts or comments about these topics on the website comments page!”
The adult study was designed by a panel of expert clinician researchers who treat adults with CP. The CPRN Community Advisory Committee provided input into the development of these studies. The Research CP initiative ranked the study of adults with CP as the highest priority research area and we are excited to launch this foundational study to address the needs of the community of people with CP.