SBCC Executive Director, Rhonda Morrison, MSW, and Program Manager, Diane Burns, joined medical and research staff from Cincinnati Children’s in Chicago this past weekend at the first annual Spina Bifida Clinical Care Conference, hosted by the Spina Bifida Association in partnership with Lurie Children’s Hospital. Approximately 150 health care providers and spina bifida support organization staff from across the US learned about the Spina Bifida Association’s Collaborative Care Network, the new Guidelines for the Care of People with Spina Bifida, the National Spina Bifida Patient Registry, and other current research in spina bifida as we shared resources and information about our programs with each other.
Summary of Topics Covered
- The national spina bifida patient registry at the Center for Disease Control (CDC) is now in its tenth year of data collection. This registry tracks the health of nearly 10,000 patients with spina bifida from 24 clinics across the country, including those enrolled here in Cincinnati. Accordingly, much of the current research and data published about spina bifida is pulled from, and inspired by, the data from this registry to improve best practice in specialty areas such as urologic function, wound care, and mobility.
- A poster and brochure entitled, “Did You Look” are now available for use in clinics and by people with spina bifida that strive to decrease instances of pressure sores and skin ulcers.
- In 2012, the CDC convened a task force from nine hospitals to study renal function and urinary tract infections in newborns and young children. They found that newborns with spina bifida have normal kidneys and renal function. They developed a protocol for the timing of visits, testing procedures, and related interventions in the first 5 years of life to sustain this function, called the Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE). The research team meets quarterly to review the protocol and make necessary updates, as indicated by the data collected.
- Kimberly Newsome, the Spina Bifida Program Lead at the CDC, reported the Spina Bifida Program has generated 14 manuscripts and 32 approved research projects to improve the quality of care of people with spina bifida. In addition to this program is the CDC work on folic acid and prevention of spina bifida and lifespan health which also benefits our community. The CDC will be studying which clinics are reporting the best patient outcomes to determine what tests and treatments should be matched by all clinics and considered best practice in medical care for patients with spina bifida.
- A survey of people with spina bifida and their parents conducted by the Spina Bifida Association identified nine new priorities for future research and study, including: self-management, sleep disorders, and nutrition and obesity.
- The Guidelines for the Care of People with Spina Bifida created by the Spina Bifida Collaborative Care Network was released in 2018. This resource is primarily for the education of health care providers, from primary care physicians to specialists, to educate about best practices in the care of patients with spina bifida. In order to share this information in a more accessible format, an app is currently in development for release later this year and a consumer-friendly version of the guidelines is scheduled for release in 2020.
- In May, the United States House of Representatives Appropriations Committee approved the Fiscal Year 2020 Labor, Health and Human Services Education (Labor HSS) funding bill. The Bill includes a $2 million increase for the National Spina Bifida Program housed at the CDC, bringing the total to $8 million annually. The program had previously been funded at $6 million. This funding supports the Spina Bifida Registry, UMPIRE, and the Clinical Care Network through the Spina Bifida Association, as well as research on a newly identified phenomenon of sudden unexplained deaths in adults with spina bifida.
- Care coordination (defined as the deliberate organization of patient care activities between two or more participants [including the patient] involved in a patient’s care to facilitate the appropriate delivery of health care services) is an essential part of the multi-disciplinary spina bifida care team and is vital to improving the health care and wellness outcomes for individuals with spina bifida. The goals of care coordination are to gain access to and integrate services and resources, link service systems with family, avoid duplication and unnecessary cost, and advocate for improved individual outcomes.
- Betsy Hopson, MSHA from Children’s of Alabama, shared her comprehensive lifespan approach to caring for patients with spina bifida. She finds that with care across the lifespan, care coordination is still needed in adulthood. She also includes transition plans in the medical record with concrete goals and positive reinforcement at regular intervals (tracked at visits throughout the year) as patients begin self-management. It may be more effective and efficient to track progress through telemedicine in the future. Betsy has found that we need to do a better job of educating young people with spina bifida about their diagnosis and teach problem-solving skills for common spina bifida-related challenges to maximize independence.
- When looking at transition and adult independence, education, bowel continence, and depression emerge as top predictors of success and employ-ability and consequently, should be areas of priority.
- Women with spina bifida and other physical disabilities are 4 times more likely to be sexually abused. Therefore, teaching people with spina bifida about their bodies and sexual health is important not only for their safety, but it also sets them up for a healthy self-image and sexual development. It is important to note that most women with spina bifida are fertile and able to become pregnant and yet many are not aware of this fact. Young women should be given information about family planning to make appropriate decisions. Additionally, many men with spina bifida can also become fathers, often with some reproductive interventions, and should be educated about their options. Adaptive equipment, medication, and other aids are available to assist adults who desire physical relationships and should be discussed candidly with health care providers. Confidence, open communication with a partner, a network of friends, and knowledge about their reproductive health were reported as the necessary components to successful relationships by a panel of adults with spina bifida who are married or in committed relationships.
- The Spina Bifida Clinic Care Standards are another effort driven by the SB Collaborative Care Network (SBCCN) who works to improve the health and outcomes of people living with SB so that they may realize their full potential and live long and well. As evidenced by their development of the Guidelines for the Care of People with Spina Bifida, the SBCCN identify the practices and programs that yield the best outcomes. To this end, they have initiated the Clinic Care Partner Standards. To qualify as a partner, spina bifida clinics will need to meet the standards that have shown to enhance health and outcomes for people living with SB. The goal is to ensure that all spina bifida clinics are providing optimal care, support, information and resources to families to improve quality of life and wellness for all patients. Clinics will have their first opportunity to submit applications with supporting documentation to become a Spina Bifida Clinic Care Partner this fall.