Therapy: Cerebral Palsy — Improving Care for Older Adults
Cerebral palsy is the most common childhood-onset physical lifelong disability. Approximately 1 million Americans have cerebral palsy; worldwide, between 17 million and 18 million people have been diagnosed with it.1 A neurodevelopmental disorder, cerebral palsy is caused by abnormal brain development or damage to the developing brain that affects motor control. Symptoms vary based on the type and severity of the condition and the individual, but all those with cerebral palsy have difficulty with mobility, balance, and posture. An individual with mild cerebral palsy may display irregularities in walking and posture but may not require special assistance. On the other hand, an individual with severe impairments may not be able to walk and may require specialized equipment to walk as well as lifelong care. Cerebral palsy may also cause problems with vision, hearing, and speech; spinal changes, such as scoliosis or stenosis; and spastic muscles, joint contractures, and other problems. There’s no cure for cerebral palsy; however, various treatments can address symptoms and improve quality of life, including medications, orthopedic surgery, braces and other assistive devices, and physical therapy (PT) and occupational therapy.2
As medical understanding of cerebral palsy and treatment options have advanced, the survival rate of children with cerebral palsy and life expectancy among adults with cerebral palsy has increased. Research has shown that cumulative survival rate of adults at age 50 is 95% in those with mild to moderate impairment, compared with approximately 75% for those with severe disease. In the United States, the population of adults with cerebral palsy has been estimated at approximately 400,000 to 500,000 but may be closer to 1 million.3 This growing population of adults with cerebral palsy requires continued management of their condition and additional medical conditions as they age.
Cerebral Palsy in Later Life
But research has shown that health care access and utilization is deficient for adults with cerebral palsy. Given that musculoskeletal disorders such as joint pain and spinal deformities are even more common in older adults with cerebral palsy than they are in older adults without it, access and utilization of PT services is important for helping mobility and function as older adults with cerebral palsy age.3,4,7 According to Mark D. Peterson, PhD, MS, FACSM, a professor of physical medicine and rehabilitation at Michigan Medicine at the University of Michigan, cerebral palsy is often regarded as a pediatric condition, which is one reason the adult population is misunderstood and not properly treated. “Children with cerebral palsy grow up, and the general population of medical providers need to be more aware that adults with cerebral palsy are at risk for these musculoskeletal disorders,” Peterson emphasizes.
In a study published in April 2021, Peterson and his colleagues found that this disparity was especially evident for PT services. Older adults with cerebral palsy used PT services significantly less than did those without cerebral palsy.4 “We know adults with cerebral palsy have musculoskeletal conditions that are far worse than the general population. They need more, but they are receiving much less in terms of treatment,” Peterson notes.
In their retrospective cohort study, Peterson and his colleagues analyzed four years of Medicare claims for PT and other ambulatory services for community living adults age 65 years and older with and without cerebral palsy who had been diagnosed with a musculoskeletal disorder. The study sample included 8,796 patients with approximately 5.6 million without cerebral palsy. The researchers analyzed claims data for several musculoskeletal conditions common in older adults, including soft tissue disorders, joint pain, bone and cartilage problems, back and neck pain, and spinal deformities. Their analysis confirmed that older adults with cerebral palsy had a higher prevalence of musculoskeletal conditions. For example, compared with those without cerebral palsy, older adults with cerebral palsy had a higher prevalence of soft tissue disorders (86.6% vs 73.6%), joint derangement (22.6% vs 5.5%), deformities (25.7% vs 15%), and spinal curvature (14.5% vs 6.7%).4
Peterson and his colleagues found that only about 30% of older adults without cerebral palsy used PT services for musculoskeletal disorders. But utilization was even lower—at 18%—for older adults with cerebral palsy, indicating that this population is significantly and disproportionately undertreated for musculoskeletal conditions that are adversely affecting their daily functioning and quality of life.4 This is the first study to analyze PT services for musculoskeletal diagnoses among older adults with cerebral palsy and it identifies a great unmet need for better health care in this population. “The results are staggering, but they support our concerns that people with cerebral palsy receive inequitable health care,” Peterson says.
While the study didn’t reveal the underlying reasons for low utilization of PT services by older adults with cerebral palsy, the researchers suggested a few factors, including the following, in their discussion of their study results4:
• Musculoskeletal pain common in older adults, such as neck and back pain, may be viewed by physicians as just another symptom of cerebral palsy or older age. Furthermore, they may not be aware that PT could provide pain relief and functional improvements.
• Older adults with cerebral palsy may have tried PT as children but didn’t find it helpful for their cerebral palsy symptoms and are therefore unwilling to try again.
• The true impact of musculoskeletal complications on older adults with cerebral palsy may not yet be widely known among the geriatrics medical community.
“Adults with cerebral palsy need more access to specialists for treatment. They ‘age out’ of specialty pediatric hospitals, and adult rehabilitation service providers don’t necessarily have the knowledge to ensure these patients receive high-value care,” Peterson says.
Addressing the Unmet Needs
Peterson and his colleagues believe their research findings highlight the need for improved screening of adults with cerebral palsy to identify musculoskeletal and other conditions and prescribe early interventions in the primary care setting. They conclude, “These results suggest that older adults with cerebral palsy may not be receiving appropriate care for their musculoskeletal conditions. Increasing clinical awareness of musculoskeletal disorders among adults with cerebral palsy, improving clinical screening strategies and early preventive health interventions, and developing efficient referral resources for coordinated care may help reduce the burden of musculoskeletal disorders, pain, and comorbidities in this population.”4
— Jennifer Van Pelt, MA, is a certified group fitness instructor and health care researcher in the Lancaster, Pennsylvania, area.
2. Cerebral palsy. Centers for Disease Control and Prevention website. https://www.cdc.gov/ncbddd/cp/facts.html. Updated September 2, 2021.
3. Yi YG, Jung SH, Bang MS. Emerging issues in cerebral palsy associated with aging: a physiatrist perspective. Ann Rehabil Med. 2019;43(3):241-249.
4. Thorpe D, Gannotti M, Peterson MD, Wang CH, Freburger J. Musculoskeletal diagnoses, comorbidities, and physical and occupational therapy use among older adults with and without cerebral palsy. Disabil Health J. 2021;14(4):101109.
5. Cerebral Palsy Foundation website. https://www.yourcpf.org/.
6. Jahnsen R, Villien L, Aamodt G, Stanghelle JK, Holm I. Musculoskeletal pain in adults with cerebral palsy compared with the general population. J Rehabil Med. 2004;36(2):78-84.
7. Peterson MD, Hurvitz EA. Cerebral palsy grows up. Mayo Clin Proc. 2021;96(6):1404-1406.