PARK CITY, UTAH — Approximately 10,000 infants are diagnosed with cerebral palsy (CP) annually. Another 1,200 to 1,500 pre-school aged children are also diagnosed with CP annually in the United States. Melissa Malkush, CP, MSPO, MH Mandelbaum Orthotic and Prosthetic Services, wanted to know why children stopped wearing their lower extremity orthoses, specifically in their pre-adolescent and adolescent years. She explained her study to the audience at the 2011 Association of Children’s Prosthetics-Orthotics Clinics (ACPOC) Annual Meeting, here.
Of the 102 patients that were contacted, 13 were included in the study. Of the 13 patients 10 were male and three were female. Their mean age was 15 and ranged from 5 to 24 years old. Malkush conducted interviews over the phone with the parents of the CP patients. She did not speak with the participants directly.
“When we think of CP, we think of pediatrics,” Malkush explained. “But we also know that CP is a lifelong condition. In my experiences, however, I only see children in my orthotic clinic. As an orthotist, it was hard for me to determine why this was so. I concluded that at some point, these children stopped wearing their orthoses.”
Malkush found that seven participants in the study (54%) stopped wearing orthoses because they were no longer prescribed by their physician. Of the seven, five told Malkush that their condition had improved to the point that they did not need their orthoses. The other two patients were done growing. Three patients (23%) stopped wearing their orthoses because their families like they should stop wearing them. The parents told Malkush that they had so many other health issues that orthoses simply did not take precedence. Two patients (15%) did not like their orthoses and stopped wearing them. One patient (8%) felt the orthoses was ill-fitting and was unhappy with their physicians. This patient did not seek follow-up appointments.
Malkush concluded, that families play a key role in the decision making process for the CP patient.
“If patients stopped wearing orthoses because their conditions have improved, that is great to tell other families,” Malkush said. “We can tell families that we can’t promise anything, but there is literature to suggest that if you stick with their orthotic intervention now, maybe your child will not have to wear them a few years from now.”— by Anthony Calabro