Personalized care for adults with cerebral palsy
April 30, 2024
Patients are living longer with cerebral palsy (CP), a neurological condition that affects body movement and muscle control due to non-progressive immature brain lesion. About 1 million people including adults and children live with CP in the U.S. today, and most have a lifespan similar to their peers. However, achieving a good quality of life in that longevity relies on getting personalized, evidence-based care.
While cerebral palsy doesn’t get worse over time, its symptoms become more significant as patients age and their risk of new health conditions increases. About half of people with CP report a lower quality of life by their 40s due to cardiovascular concerns, declining emotional health, and muscle and orthopedic changes that cause chronic pain.
UT Southwestern is one of the few medical centers in the U.S. with the expertise to help adults with CP and their families navigate these health changes. After leading national CP programs at large U.S. institutions, including Columbia University Irving Medical Center and Children’s Hospital of Philadelphia, I joined UT Southwestern as Chair of the Department of Physical Medicine and Rehabilitation and launched a new clinic specifically for adults with CP.
Our program connects patients from all over Texas and the Southwest with multidisciplinary, age-appropriate care, clinical trial opportunities, and access to timely treatments so they stay ahead of the curve when it comes to meeting the ever-changing health needs of adults with CP.
Changing symptoms in adults with CP
Physical health concerns
Because movement is more challenging for adults with CP, many experience premature aging, which can manifest itself as:
- Chronic pain: Bone and muscle weakness contribute to chronic pain in the back, hands, feet, and joints. Research shows about 75% of adults with spastic bilateral CP, the most common form, have chronic pain.
- Muscle deterioration: Age-related loss of muscle mass (sarcopenia) occurs at a younger age in adults with CP due to faster muscle tightening and shrinking. Muscle mass begins to deteriorate in about half of patients by age 30, and by age 35, gross motor function begins to decline to a point where patients might need assistive devices, such as wheelchairs.
- Orthopedic problems: Malnutrition, limited weight-bearing exercise, chronic spasticity (spasms of muscle tightening), and low vitamin D levels due to getting less outdoor time – people with CP spend less than 20% of their time in the light – can contribute to weakened bones and a higher risk of osteoporosis and fragility fractures. Severe scoliosis and arthritis are also common in adults with CP.
- High blood pressure and diabetes: People with CP spend 75% or more of their time sedentary and less than 10% in moderate to vigorous physical activity. This increases the risk of obesity, which contributes to fatigue, mental health decline, and challenges in caregiving. Adults with CP also face higher rates of diabetes due to inactivity and high blood pressure, and they are twice as likely to have a stroke.
- Pulmonary and urinary problems: Due to lifelong shallow breathing from chest muscle weakness and scoliosis and airway blockage, they are at increased risk of chest infection and chronic lung disorder and are more likely to develop atelectasis (collapsed lung) due to shallow breathing and difficulty swallowing (dysphagia) can also worsen with age, increasing the risk of aspiration – inhaling food or liquid due to a faulty coughing reflex. Reduced bladder control is common in adults with CP, and many require catheterization or bladder augmentation surgery.
Mental health concerns
Broadly speaking, about one-third of patients with CP have standard cognitive abilities. In some cases, though, mental health declines as the stressors of adult life pile on to the added responsibilities of self-care and managing school, work, and relationships.
As physical symptoms worsen, patients may become more depressed or anxious about their limitations. The most common mental health problem with CP is anxiety, followed by depression – more than half of adults with cerebral palsy have anxiety disorder and/or depression.
At UTSW, we have a robust team of specialists to care for the complex combination of mental and physical health conditions adults with CP face.
Our physiatrists and physical medicine and rehabilitation experts guide patients in comprehensive care including functional issues, spasticity and pain management, and physical therapy exercises to retain and improve mobility, reduce fatigue, and enhance mental health in young adults. Working closely with colleagues in cardiology, pulmonology, orthopedics, nutrition, speech-language therapy, and our Wheelchair and Durable Medical Equipment Clinic, we help patients access advanced treatments to optimize their overall health and reduce the impact of changing symptoms on daily life.
In addition, social workers and mental health professionals help identify and treat behavioral health conditions. Cognitive behavioral therapy, medication, and in-person support groups or social media communities can also help patients manage the emotional toll of CP.
Related reading: How Glen’s journey to getting a power wheelchair got much smoother
Advanced treatment options for patients with CP
As pediatric cerebral palsy improves, more treatment options become available for adults with CP. Advancements in spasticity management include a range of options, such as:
- Botulinum toxins (Botox, Dysport and Xeomin): Botulinum toxin will block the release of acetylcholine (neurotransmitter) from nerve endings, which will reduce the spasticity of injected muscles.
- Phenol nerve blocks: Phenol is injected into the motor nerves and relieves spasticity by reducing axonotmesis, a type of nerve damage.
- Muscle relaxant medications: Pills such as baclofen, tizanidine, diazepam, and dantrolene can help control spasticity.
- Intrathecal baclofen therapy (ITB): A baclofen pump is a surgically implanted device that continuously delivers baclofen, a muscle relaxant to the spinal canal. More than 400 patients in our program have received ITB therapy.
- Deep brain stimulation (DBS): A UTSW neurosurgeon places a DBS device in the patient’s brain to stimulate nerve control and inhibit involuntary movement.
- Cryotherapy/Cryoneurolysis: Directly applying cold therapy can ablate nerves that influence pain. There are ongoing clinical trials to learn whether it can also improve spasticity in adults with CP.
- Selective dorsal rhizotomy (SDR): This surgical procedure can permanently reduce spasticity in the legs and support walking. Patients may be eligible if physical therapy and injection treatments are no longer effective.
In some cases, orthopaedic surgery may be necessary to manage musculoskeletal complications such as scoliosis, hip dysplasia, or joint replacements. Vitamin D supplements and nutrition support can also help with obesity and cardiovascular risk.
Patients and families that “age out” of pediatric CP services often feel as if they are cast away with no tether to a future care plan. As a result, we often see adult patients who have received substandard or inconsistent care in young adulthood, and we must play catch-up before we can start proactive therapies.
UTSW is gathering a team of data analysts to create a CP registry for Dallas and Texas. Using these data, we can help families of teens with CP navigate the transition from pediatric to adult care earlier, connecting them with specialists who are experienced with the nuances of aging with cerebral palsy. With appropriate and personalized care, adults with CP can live not just longer but healthier and happier lives.
To talk with an adult cerebral palsy specialist, call 214-645-8300 or request an appointment online.
