Why Do Children With Cerebral Palsy Stop Wearing Their Lower Extremity Orthoses?
Melissa Malkush, CP, Orthotic Resident MH
Through mere observation, it is apparent that more children with cerebral palsy (CP) than adults are seen in the orthotic clinic. The purpose of this study is to determine why these children stop wearing their lower extremity orthoses. Of the 102 patients that were contacted, 13 were included in the study. Most patients, 54%, stopped wearing orthoses because they were no longer prescribed by their physician. About a quarter of the patients, 23%, stopped wearing orthoses because their families felt that they should discontinue them. Only 15% of the patients chose not to wear the orthoses because they did not like them. One patient, 8%, felt that the orthoses were ill-fitting and did not follow-through with orthotic treatment. The study suggests that the severity of the child's impairment may play a key role in whether orthotic treatment is continued or not. In conclusion, the patients and families should know that individuals with CP have muscle imbalance and a tendency towards contracture for the rest of their lives. They should communicate with their physicians about potential contracture management.
Cerebral palsy (CP) is a generic term used to describe certain clinical syndromes that present with abnormal voluntary muscle movement, posture and muscle coordination. This is consequence to a nonprogressive upper motor neuron (UMN) lesion that occurs during fetal development or shortly after1, 2. As the child with CP ages and neuromuscular milestones are achieved, the true extent of the pathology becomes evident. Approximately 10,000 babies and infants are diagnosed with CP and 1,200-1,500 preschool age children are also recognized to have CP in the United States annu-ally1.
There are 5 commonly defined forms of cerebral palsy: spastic, athetoid, ataxic, hypotonic, and a mixed form3. Spastic CP, or hypertonia is the most common form2. As per the content of this study, the other pertinent form of CP is hypotonia. Where hypertonic children present with increased muscle tone, muscle tightness, and possibly limited range of motion (ROM), hypotonic children present with general lack of muscle tone, or what appears to be "floppiness".
According to the International Society for Prosthetics and Orthotics (ISPO), the aim of orthotic management of CP is to: 1) correct and/or prevent deformity, 2) provide a stable base of support, 3) facilitate training in skills, and 4) to improve the efficiency of gait4.
As the severity of CP increases, morejoints are affected by the muscle imbalance. Many children with mild presentations may have ankle/foot involvement only. These children are commonly prescribed ankle-foot orthoses (AFOs) with or without ankle joints to discourage plantarflexion (equinovarus), encourage heel strike and discourage pronation during stance phase, and to encourage toe clearance and increased step length during swing phase4.
For the child with hypotonia, the lower extremity often presents with pronation or pes plano valgus. Physicians often prescribe supra-malleolar orthoses (SMOs) to support the subtalar joint and arch during stance phase of gait4.
Most CP literature focuses on the child. In 2005, the O&P Edge published an article titled, "Where are they now?", referring to the adult population with CP. This article summarizes feedback from members of the medical team, including the patients5. It focuses on the moderately to severely impaired individuals, leaving the impression that most adults with CP ultimately end up in wheelchairs. The author writes that, "at some point, almost all cerebral palsy patients are going to have surgery... Ambulation becomes less functional for them, and they just decide to use a wheelchair."
Through mere observation, it is apparent that most patients with CP in the orthotic clinic are indeed children. The numbers drastically drop off into adolescence and few adults continue to use orthoses unless they are moderately to severely involved. It did not seem likely that the great percentage of children with CP that stop coming into orthotic clinic are inevitably in wheelchairs as the mentioned article suggests.
The purpose of this study is to determine why children stop wearing their lower extremity orthoses, specifically in their pre-adolescent and adolescent years.
Patients of our orthotic facility with cerebral palsy (diagnosis code 343.9) were reviewed. Patients' homes were contacted by telephone if they had not had an appointment in the past 3 years, if they were 25 years of age or younger, and if they had worn orthoses of the lower extremity. Subjects included in the study also had to have stopped wearing their lower extremity orthoses.
Parents of the patients were asked to complete a questionnaire over the phone. The questions assessed what form of CP the patient has, what type of orthoses have been worn, at what age the patient stopped wearing orthoses, why he or she stopped, if any other assistive devices have been used for mobility, whether physical abilities have improved with age, and questions pertaining to the current medical team.
Of the 102 patients' homes called, 40 phone numbers were no longer in service, 31 parents were repeatedly not available, 13 patients qualified to participate in the study, 12 patients still wore their orthoses, 2 patients were not diagnosed with CP, 2 patients were deceased, and 2 parents were not interested in participating.
The 13 subjects (10 male, 3 female) were between the ages of 5-24 years (mean 15.8 years).
Information collected from the questionnaires was reviewed and complemented by review of each patient's office chart. When necessary, information collected was verified with members of the medical team.
The results are summarized in Table 1. The cerebral palsy diagnoses included: 4 spastic diplegia, 3 spastic hemiplegia, 3 spastic quadriplegia, 1 hypotonia and 2 were not sure or it was not specified. The subjects stopped wearing their orthoses between the ages of 3-21 years (mean 13.5 years). Most patients, 54%, stopped wearing orthoses because they were no longer prescribed by their physician. About a quarter, or 23% of the families felt that their child should stop wearing the orthoses. Only 15% of the patients did not like the orthoses and chose not to wear them. One patient, 8%, felt that the orthoses were ill-fitting and did not follow-through with orthotic treatment.
No results were ascertained concerning the percentage of patients that discontinue wearing orthoses.
Table 1. Why Patients Stopped Wearing their Lower Extremity Orthoses
|Frequency||Reason||Form of CP||Ages||Types of Orthoses|
|7 (54%)||Orthoses were no longer prescribed by the physician.||
3 spastic diplegia
2 spastic hemiplegia
1 spastic quadriplegia
5, 7, 3
|3 (23%)||Family felt that the patient should stop wearing the orthoses.||
1 spastic quadriplegia
|2 (15%)||Patient did not like the orthoses and did not want to wear them anymore.||
1 spastic qudriplegia
1 spastic heplegia
|1 (8%)||Patient and family felt that the orthoses were ill-fitting.||1 spastic diplegia||15||AFO|
Dr. Farrell, an orthopedist who commonly treats children with CP at St. Charles Rehabilitation Hospital in Port Jefferson, NY, said that there are 2 specific times that an individual with CP stops wearing his or her orthoses, "when the braces are not necessary anymore or when the patient chooses to stop wearing braces"6. The results of this study suggest that in addition to the prescribing doctor and the patient, the patient's family may play a key role in determining if the child will continue with orthotic treatment of the lower extremity.
Orthoses may no longer be necessary when the child's abnormal motor function has improved. This is more common in children with mild presentations of CP. Of the 7 patients who were no longer prescribed orthoses by their physician, 5 had been toe-walkers. These children stopped wearing their orthoses between 3-21 years of age (average 7.8 years). The AFOs were worn to stretch the heel cord, encourage heel strike during gait and discourage toe-walking. It is important to mention that physical therapy, surgical intervention and botox along with orthotic treatment may be necessary to effectively stretch a tight muscle group. One mom said of her son's improved condition, that "his AFOs helped a lot to get him here, but the braces are not necessary anymore." All parents said that their children had no problems with the lower extremity since discontinuing their orthoses. One has even gone on to join the track team in high school.
Two of the total 7 patients discontinued orthotic treatment after they reached skeletal maturity. The physicians told the parents that the orthoses helped to stretch the tight muscles and to hold the joints in proper alignment as the patient grew. This way, the body did not grow into a deformed position. When the child reaches skeletal maturity, some physicians may give a well ambulating patient the option of discontinuing use of the orthoses6, 7.
Of the 3 families that believed their child should stop wearing orthoses, all children were nonambulatory and in a wheelchair. These children have more severe presentations of CP. The 2 patients who are unsure which form of CP they have also have diagnoses of both mental retardation (MR) and seizure disorder. The patient with spastic quadriplegia also had many other health concerns. This patient's mother said that her child stopped wearing the AFOs because, "there was so much other stuff going on". Two of these patients were wearing positional orthoses to prevent plantarflexion contracture while in the wheelchair. Each parent referred to the many other medical issues that their child deals with when asked why they stopped wearing orthoses.
Two of the 13 subjects did not like the orthoses and chose to stop wearing them. The adolescent child strives toward independence, and may be influenced by conformity and social acceptance8. It is during these years that many children with CP are not really children anymore. They will make decisions for themselves regardless of what parents or medical providers may say. One father said, referring to his son, age 20, who stopped wearing his AFO at age 18, "he's an adult, he makes his own decisions". Dad also remarked that his son walks much better with his orthosis and that he stopped seeing a physician that treats CP as well.
Other patients may not see the difference that the orthoses have made, especially if they're positional orthoses. Coming of age adults may decide to stop wearing without understanding that they're adequately preventing contractures.
One family was not happy with the medical team. The child, age 15, was uncomfortable in the orthoses and did not have adjustments. This mother was turned off and does not continue to work with an orthotist nor with a physician that treats CP.
The findings of this study have no statistical significance. A larger subject pool is necessary for such results. However, it was found that most children stopped wearing lower extremity orthoses because their physicians stopped prescribing them. The rest of the subjects stopped wearing their orthoses because either the patients or the patients' families chose that they discontinue wearing them.
An individual with cerebral palsy never grows out of the condition. They will have a lifelong tendency towards muscle imbalances. The ultimate goal is to delay contracture development and to improve the patient's quality of life2. This is true regardless of why the patient stopped wearing orthoses. One physician reflects that patients with CP sometimes come into her office for the first time in their 40s because they have gradually developed contractures and foot deformities which impede their ability to walk5. Contracture management is not only a concern at the ankle, but at eachjoint of the lower and upper extremity.
Therefore, whether the physician does not continue to prescribe orthoses, or whether the patient chooses not to wear orthoses, each patient should be aware of the signs of a contracture. With proper education, a patient with CP who does not see a physician frequently will recognize when tightness at a joint is starting, whether at the ankle or another joint. Also, night splints should be an option for patients who no longer wish to wear orthoses during the day.
Mandelbaum Orthotic & Prosthetic Services
- United Cerebral Palsy Research Foundation: Cerebral palsy fact sheet: statistics, retrieved September 8,2010. http://www.ucp.org/uploads/cp_fact_sheet.pdf .
- Goodman C, Glanzman A. Cerebral Palsy. In: Allen A, Waltner P, 2nd ed. Pathology Implications for the Physical Therapist . Philadelphia, PA/USA: Elsevier; 2003:1098-1105.
- Drake C. Orthotic management of deformity in cerebral palsy. In: Report of a consensus conference on the lower limb orthotic management of cerebral palsy. International Society for Prosthetics and Orthotics . Copenhagen,Denmark: 1995:127-136.
- Condie D. Background. In: Report of a consensus conference on the lower limb orthotic management of cerebral palsy. International Society for Prosthetics and Orthotics . Copenhagen, Denmark: 1995: 1.
- Phillips Otto, J. Where are they now? Orthotic care of adult CP patients. O&P Edge . September 2005.
- Farrell J. St. Charles Rehabilitation Hospital . August 2010
- Kelley, R. Orthotic management of cerebral palsy. O&P Business News . 2002:6.
- Scherzer A, 3rd ed. Early diagnosis and interventional therapy in cerebral palsy: an interdisciplinary age-focused approach . MDekker; 2001:19.