Study Offers Insights on Young CP Patients’ Transition to Adulthood

A recent study has characterized the clinical profile of teens with cerebral palsy (CP) who are entering adulthood, and how that has changed over the last decades.

Over 30 years, there have been improvements in motor function over time in patients becoming young adults; however, the number of those who are totally dependent has risen because of the growing presence of multiple disabilities in the same patient, probably due to the increase in survival rates in severely disabled infants seen over the last decades owing to advances in medicine.

Researchers believe that a deeper insight into the functioning profile of young adults with CP can help health services provide more appropriate care to these patients.

The study, “Becoming a young adult with cerebral palsy,” was published in the journal Research in Developmental Abilities.

To study the clinical profile of CP patients who were about to become young adults, researchers used data from 389 patients born between 1967 and 1997 and discharged at age 18 from a network of rehabilitation centers in Italy called La Nostra Famiglia Children Care Centres.

Patients were analyzed by date of birth: 81 patients born between 1967–1976, 145 born from 1977– 1986 and 163 from 1987–1997.

Risk factors, the type of CP, motor, manual and communication abilities, the occurrence of associated impairments and environmental factors, and trends over time were investigated.

One important aspect was that while available data regarding transition to adulthood concerns only patients with normal or near-normal intellectual abilities, here researchers included participants with severe intellectual developmental disorders or severe motor impairment as well.

Typical for the disease, most patients had bilateral CP, i.e. both sides of the body were affected (86%) — 57% had quadriplegia (both upper and lower halves of the body are affected) and 43% had diplegia (typically mainly the legs are affected).

Nearly half (46.01%) used a wheelchair and/or needed complete assistance to be transported, mainly those with quadriplegia; in contrast, almost all patients with hemiplegia (only one side of the body affected) or diplegia were able to walk independently or with aid.

Most patients had a spastic disorder (86%), the most common type of CP. This means muscles are stiffer or more rigid than normal (increased muscle tone) which can make movements awkward and impair patients’ ability to walk or maintain balance.

The presence of other health problems, or comorbidities, was frequent — mainly intellectual and developmental disability, or IDD, (63.5%), which was in many cases severe or profound (27.65%, 107 patients).

Visual impairments were diagnosed in 59.5% of the patients, epilepsy in 37.5% but hearing impairments affected less than 5% of the patients studied (17 patients).

From 1967 to 1997,  the rate of patients with better gross motor function — as measured by the Gross Motor Function Classification System (GMFCS) — gradually increased from 47% to 56.44%.

In contrast, during the same period, both manual and communication skills, as well as intellectual ability, appeared to get worse.

The rate of patients with lower or no ability to handle objects — level IV and V in the Manual Ability Classification System (MACS) — increased from 37.04% to 41.10%. Those with worse everyday communication abilities — measured by the Communication Function Classification System (CFCS) — also rose from 24.69% to 34.97%, as did the rate of those affected by IDD, which increased from 56.79% to 68.71%.

Preterm birth and lack of oxygen during birth (hypoxia) were the more frequent risk factors, but from 1987 to 1997 preterm birth rates decreased (48% to 36.8%) and the rates of CP caused by unidentified factors increased (from 0 to 15.9%).

Over the decades a decrease in the rate of surgeries and an increase in non-surgical approaches were also observed.

About 20% of patients showed severe impairment of motor, manual, and communicative skills in addition to a severe intellectual disability. This means that, even as adults, these patients were totally dependent on others for daily activities.

The number of patients in this situation has increased slightly, from 17.2% (from 1967 to 1976) to 22% in the subsequent decades.

“This suggests that, despite the outcome as expressed by the motor functioning profile by itself improved over years, the outcome as expressed by the global functioning profile appeared more impaired due to the co-occurrence of severe manual, communication, and intellectual impairments,” the researchers said.

“This could be related to the increased survival rates of severely impaired infants,” they said. Advances in medical science enabled a growing number of children who had not been expected to survive to reach adulthood while dealing with long-term disabling conditions.