Women With Cerebral Palsy Miss Vital Gynecologic Care

As more individuals with cerebral palsy live well into adulthood, medical professionals are taking a closer look at the unique long-term healthcare needs of this patient population. While adults with cerebral palsy require the same routine health maintenance as anyone else, a large, national study conducted at Yale showed that women living with cerebral palsy received significantly less preventative gynecologic care than women without the condition.

The study, which appeared in the American Journal of Obstetrics and Gynecology, evaluated how often women with and without cerebral palsy received routine gynecologic exams, Pap tests, and mammograms. The findings highlight a stark gap in medical screenings that could have serious implications for long-term health and longevity.

Routine screenings like Pap tests and mammograms are vital tools for catching cervical and breast cancers early, when they are most treatable. However, the study showed that women with cerebral palsy underwent these crucial preventative procedures at lower rates across every age group studied.

For example, while approximately 80% of women without cerebral palsy attended regular routine gynecologic exams, only about 32% of women with cerebral palsy did the same. Similar disparities appeared across Pap testing and breast cancer screenings. Even after adjusting for other factors like age, overall health status, geographic location, and insurance types, women with cerebral palsy received fewer preventative health services.

"As our young patients with cerebral palsy successfully transition into adulthood, we have a responsibility to look closely at the hurdles they face in the healthcare system," says David Frumberg, MD, an associate professor in the Department of Orthopedics & Rehabilitation at Yale School of Medicine and principal investigator of the study. "These data show that a major vulnerable population is missing out on potentially life-saving, preventative screenings, and we have to understand why."

Cerebral palsy is a group of permanent neurological disorders that primarily affects movement, coordination, and posture. It is the most common childhood physical disability, affecting an estimated 1 in 345 children in the United States according to the Centers for Disease Control and Prevention. The condition results from an abnormality or injury to the brain that occurs before, during, or within the first two years of life during early brain development.

While the underlying brain abnormalities generally do not worsen as the person ages, the symptoms and physical impact an individual experiences can change significantly over time. Symptoms can vary widely depending on which part of the brain is affected and the extent of the injury, ranging from stiff or rigid muscles, lack of coordination, abnormal gait, or decreased muscle tone. Those with cerebral palsy may also experience associated challenges, including intellectual differences, vision or hearing problems, seizures, and urologic complications such as urinary incontinence, voiding dysfunction, and neurogenic bladder.

While cerebral palsy is a lifelong condition with no cure, treatments including physical, occupational, and speech therapy, medications, and surgery can help manage symptoms and improve motor function. However, a major challenge in healthcare is that children and adolescents often age out of pediatric cerebral palsy services.

The Yale Cerebral Palsy Program is unique because it is one of few medical institutions that provide comprehensive, lifelong care to those with the condition. The goals of the program are to maximize the physical and psychosocial functions of its patients, and to enable and empower their successful integration into the world.

"Cerebral palsy has a wide spectrum of involvement,” explains Frumberg, who serves as director of the Cerebral Palsy Lifespan Program at Yale New Haven Hospital. “People and families have varieties of goals for independence, inclusion, quality of life, and experience, and there is a lot the team at Yale can do to help these goals become successful realities.”

The multidisciplinary team of surgeons, physicians, nurses, and physical and occupational therapists designs customized treatment plans that enhance quality of life by making options and care as accessible as possible.

The reasons behind screening disparities in adult women, however, are complex and multifaceted. Because of physical limitations, spasticity, or mobility challenges, standard gynecologic examinations can be physically difficult or uncomfortable for those with cerebral palsy. In some cases, according to Frumberg, patients may require specialized accommodations or even general anesthesia to complete routine screenings safely.

Beyond the physical layout of an exam room and mobility obstacles, logistical challenges and provider communication gaps play a major role. Many women with disabilities report that healthcare providers often lack specific training or confidence when treating patients with mobility or cognitive differences. Furthermore, common clinical misconceptions, such as assuming that adults with physical disabilities are not sexually active, can lead clinicians to skip vital discussions about reproductive health and cancer screenings.

"Preventative care cannot be a one-size-fits-all model," says co-author Anne Smith, MD, MS, an assistant professor of obstetrics, gynecology, and reproductive sciences. "When examination tables are difficult to access, or when providers lack specialized training to accommodate patients with physical impairments, individuals can simply fall through the cracks. Eliminating these barriers requires a collaborative and conscious effort from the medical community to adapt our facilities and our clinical approaches."

The implications of this research extend far beyond administrative numbers. Missing routine preventative care can lead to delayed diagnoses, advanced disease progression, and ultimately lower quality of life.

Addressing this disparity requires a multi-step approach from healthcare systems, primary care providers, and gynecologists. According to Frumberg, clinics must prioritize physical accessibility and ensure that examination rooms are equipped to comfortably accommodate patients with diverse mobility needs. At the same time, medical education programs must place greater emphasis on training physicians to care for adults with neurodevelopmental disabilities with empathy, dignity, and specialized clinical awareness.

“Ultimately, bridging this gap is about creating equal access to healthcare,” Frumberg says. “By recognizing the hurdles that keep women with cerebral palsy from receiving routine check-ups, the medical community can take meaningful steps toward a future with higher expectations for preventative care.”

In addition to Frumberg and Smith, the co-authors include Michael Gouzoulis, MD; Ally Yang, MD; Anthony Seddio, MD; and Jonathan Grauer, MD.