The longer lifespans of people with cerebral palsy require a broader perspective on care, researchers say

Because the majority of people with cerebral palsy (CP) are adults, an emphasis on adult care in addition to child and youth care is becoming increasingly important to meet their needs. a special edition of the Journal of Pediatric Rehabilitation Medicinehighlights topics related to CP across the spectrum of life, including issues surrounding mental health, sexuality and independence.

Guest Editor Rachel Byrne, PT, Cerebral Palsy Foundation, New York, NY, says: “Emerging evidence highlights the critical importance of mental health and combating social isolation in the care of people with CP and similar physical disabilities. However, these crucial aspects have historically been underfunded and therefore sidelined in clinical programs.

“Improved training at specialist and primary care levels is urgently needed to address these gaps. The lack of informed care for adults is one of the key challenges patients face and requires immediate attention.”

“One of the key challenges is treating CP across the spectrum of life. This includes issues such as independence, adult complications and secondary prevention. Perhaps one of the biggest obstacles is that CP is defined in many people’s minds as a pediatric condition. About 60% of people with CP are adults,” adds co-guest editor Justin W. Ramsey, MD, Bethany Children’s Health Center, Bethany, OK.

The article “Exploring the sexual experiences and challenges of people with cerebral palsy” explores experiences, challenges and related factors surrounding sexuality and intimacy faced by people with CP.

Lead investigator and co-guest editor Heakyung Kim, MD, Department of Physical Medicine and Rehabilitation, University of Texas Southwestern Medical Center, Dallas, TX, notes: “CP is a common motor disorder affecting children, with evolving demographics indicating an increasing survival in This shift necessitates a broader perspective on CP care, especially when it comes to addressing the often overlooked aspect of sexuality.”

“We wanted to shift the lens of this year’s CP special issue to topics that are often underrepresented in CP research, but are very important to people with CP, often more important than the classic hypertonia and gait topics,” says co-guest editor Sruthi Pandipati Thomas, M.D., Ph.D., Texas Children’s Hospital, Houston, TX.

“Individuals with disabilities make up approximately 13% of the total population. Our editorial”Medical delivery without representation?: Exploring disability representation within the healthcare community‘ focuses on recent events that may involve ‘ableism’.

“We highlight the deficits and biases inherent in healthcare and explore ways to correct the problem. In a time of medical scarcity, it is so important to ensure that people with physical and intellectual disabilities have a voice,” says co – Guest Editor Christopher Raffi Najarian, MD, MPH, Akron Children’s Hospital, Akron, OH.

The article “Management and treatment of musculoskeletal problems in adults with cerebral palsy: experience gained in two life course clinics“looks at orthopedic experiences in the care of adult patients with CP. The musculoskeletal manifestations of CP are progressive due to the long-term effects of spasticity, dystonia, and asymmetric biomechanical forces on the musculoskeletal system.

The authors emphasize the need for future research to focus on the long-term outcomes of orthopedic surgery and call for a more systematic approach to the assessment and treatment of musculoskeletal problems in adults with CP.

Other articles in this special issue cover the following topics:

• Adaptive designs
• Global research networks
• Opioids
• Pain management
• Botulinum toxin injections
• Kinesthesia
• Teletherapy
• Gross motor function
• Virtual reality-based treatment
• Apnea
• Muscle spasticity
• Lived experience

JPRM Editor-in-Chief Elaine Pico, MD, UCSF Benioff Children’s Hospital Oakland, notes: “This is an exceptionally interesting issue because we explored issues of aging with CP and perhaps touched on aspects that had not previously been reported in this way. It was gratifying to work with new special guest editors and to see Heakyung Kim share her expertise from previous issues with a new editorial team.

“We are extremely proud of what this robust issue has to offer the CP community, providing educational and thought-provoking information.”