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CASE REPORT

Caregiver Satisfaction for Orthotic Management of a Severely Involved Child with Cerebral Palsy Seen at Age 7 Years and 19 Years

Yasukawa, Audrey MOT, OTR; Malas, Bryan MHPE, CO; Martin, Patricia PT

Author Information
Journal of Prosthetics and Orthotics: April 2016 - Volume 28 - Issue 2 - p 78-82
doi: 10.1097/JPO.0000000000000090
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Abstract

Management of elbow contractures for cerebral palsy (CP) is not a new endeavor and has been undertaken to maintain/improve range of motion (ROM), improve hygiene, and decrease pain. Cited treatments include botulinum toxin type A (BTX), bivalve elbow cast, and various static or dynamic elbow orthoses.1–4 To the best of our knowledge, no report has investigated the long-term compliance and caregiver satisfaction using an elbow orthosis for elbow contractures and the status of elbow ROM for a child.

K.D., a 19-year-old female with a diagnosis of CP and bilateral elbow contractures, initially received a unilateral Ultraflex elbow wrist hand orthosis (EWHO) for one elbow and a bivalve cast for the other elbow5 as part of a study in 2003. At the conclusion of the study, the results demonstrated better passive elbow ROM into extension using the EWHO as compared with the bivalve cast. As a result of these findings, a second EWHO was fabricated to replace the bivalve cast. Since that time, there has been inconsistent occupational therapy treatment and absence of orthotic management. She was seen for an occupational therapy assessment with an orthotist and was remeasured for bilateral EWHO upper-limb orthoses to improve ROM at her elbows and wrists. The outcome of orthotic treatments was examined 16 months after casting and fabrication of the EWHO and included seeking to understand the variables of family and patient compliance with orthotic management.

BACKGROUND

Contractures and reduced joint mobility caused by the loss of extensibility in soft tissues are common complications of children with neurological involvement. Upper-limb contractures are undesirable, as they can lead to skin breakdown, hygiene problems, and difficulty performing activities of daily living. For example, elbow-flexion contractures make it difficult for the caregiver to don and doff sweaters and coats, which can be a major problem during the winter months. Contractures create deformities and can cause abnormal pressure on skin, soft tissue, and joints, which may precipitate breakdown and require eventual surgical intervention.

The Gross Motor Function Classification System (GMFCS) and Manual Ability Classification System (MACS) include an age band for youth aged 12 to 18 years and emphasize the concepts inherent in the World Health Organization's International Classification of Functioning, Disability, and Health (ICF). The focus of the GMFCS and MACS is on determining which level best represents the youth's present abilities and limitations in motor function. Children with GMFCS levels IV and V are more dependent on the caregivers for assistance in performing activities of daily living, mobility, and transfers. At level V, children are dependent in wheelchair mobility, and caregivers may be under more stress as their responsibilities for care are much greater.6 Manual Ability Classification System7 is a classification scale for children with CP aged 4 to 18 years and assigns a number score when describing how children with CP use their hands to handle objects in daily activities. Manual Ability Classification System describes 5 levels, based on the child's ability to handle objects. The child at level V does not handle objects and has severely limited ability to perform even simple actions. The caregivers' perceptions of the needs of their child may be influenced by the daily effort required for the care of their child. The care of the child may require substantial time, energy, and physical exertion of the caregiver. The amount of stress on the caregiver may increase as the child and caregiver become older.8–10

Children at GMFCS level V and MACS level V with CP require long-term support from their families, caregivers, and health professionals. Children with severe involvement and limited functional control are generally seen in occupational and physical therapy initially for individual “hands-on” therapy. As the child's functional status plateaus, the caregiver may focus on optimizing ROM for ease of care. Consequently, the occupational or physical therapist routinely uses home programs as a therapeutic strategy to teach the caregiver ROM, positioning, and orthotic application and use. The child may be seen on a consultative basis to update instruction as needed. Once the therapist and orthotist determine the appropriate orthosis and the device is fabricated, the therapist and orthotist assess the child and device for fit and provide a wear schedule that meets the family and patient goals. The child is scheduled for a clinic recheck and is monitored as needed. The caregiver is encouraged to contact the therapist if there are any problems with the orthotic fit or the home program. Follow-up outcomes on the wear schedule and passive ROM (PROM) are assessed to measure the success of the orthotic device in meeting the therapist and family goals.

Dynamic orthotic systems are spring-loaded and designed to provide low-load prolonged stretch while patients are asleep or at rest. The spring tension of the power unit dynamic component can be adjusted for tension between a minimum of 0 and a maximum level of 7. The orthoses provide a slow gradual stretch with minimal tension over a prolonged period to assist with increasing ROM and soft tissue extensibility.

Regular clinic visits may assist with evaluating fit of the orthotic device and wear schedule. For an overburdened family, a follow-up telephone call may be an alternative method to coming into a clinic, but does not allow the clinicians to assess the child and device or observe the family donning and doffing the orthosis. Many families become lost to follow-up, and in some cases, the orthotic device is seldom worn. There is a need to determine primary causes of noncompliance or decreased compliance in orthotic wear. The purpose of this case report was to examine the complications and struggles with daily use of the EWHO in a child with GMFCS level V and MACS level V.

METHODS

Written consent through the La Rabida Children's Hospital policy was obtained from the caregiver before the case report began.

CASE REPORT

In the initial pilot study, K.D. was 7 years old with a diagnosis of CP, spastic quadriplegia GMFCS level V, and MACS level V (Figure 1). She was receiving gastrostomy tube feedings and was dependent in all mobility and self-care. She was also taking oral baclofen to decrease her tone. Baclofen dosage was determined by her physician. K.D. was seen in occupational therapy to examine the efficacy of maintaining elbow ROM using the dynamic EWHO as compared with the static bivalve cast.5

Figure 1
Figure 1:
K.D. was aged 7 years, comparing a bivalve cast to the EWHO.

K.D. was followed in another clinic, and her PROM was monitored inconsistently over the past 12 years. K.D. returned to this clinic for follow-up at the age of 19 years (Figure 2). The primary caregiver, her mother, was defined as the person responsible for the day-to-day decision making and care of this young adult. K.D.'s mother stated that K.D. was seen for refitting of static elbow orthoses after she had outgrown her dynamic elbow orthoses; however, the results of the static orthoses were only temporary, and K.D. was unable to fit back into the static orthoses 1 year later. Her mother described the 12 years since the pilot study as a challenge for her own health and well-being. In addition, her mother reported being hospitalized, with a restriction for lifting after returning home from the hospital. Her mother stated the Hoyer lift was the most useful equipment to use for transferring K.D. into and out of bed and wheelchair.

Figure 2
Figure 2:
K.D. at the age of 19 years.

Her mother stated her main goals for K.D. continued to be to improve the PROM of both elbows and wrists for ease of dressing and to prevent skin breakdown, especially in her left elbow crease. Her mother also stated she wanted to avoid potential surgery to K.D.'s left elbow and to have K.D.'s hands open so her mother could apply nail polish. Her mother wanted K.D. to be seen for an aggressive program of botulinum toxin injections to both elbows and wrists, serial casting to improve ROM, and follow-up with definitive orthoses.

K.D. was measured by the orthotist for bilateral custom-fitted EWHOs. The lateral elbow components, Ultraflex ONE large platforms, have power unit dynamic components with variable torque output up to 90 in/lb. They are also equipped with a lockout handle for donning/doffing purposes and adjustable ROM stops. The elbow dynamic components were set up to assist elbow extension. The wrist components control the joint ROM with adjustable flexion or extension stops. The wrist joints were held in a static position. The high temperature plastic component was 1/8 in high-density polyethylene thermoplastic lined with 1/4 in Volera (Aliplast). The tension (ranging from 1 to 7) was set at 2 to provide the spring assist into elbow extension (Figure 3).

Figure 3
Figure 3:
K.D. with the EWHOs.

The initial wear schedule was for the caregiver to start with 30-minute increments and gradually increase time in the orthoses as tolerated. The goal was to obtain up to 8 hrs or more of daily wear. Eventually, the wear schedule of the EWHO was established with K.D. wearing the orthoses daily for 4 hrs or more during the day and eventually to wear them as nighttime orthoses. The ultimate goal for her mother was for K.D. to wear the orthoses daily to promote the goals stated previously.

The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD)11 questionnaire was administered to the caregiver before K.D. was being fitted for bilateral upper-limb EWHOs and at the end of the study, after K.D. had worn the orthoses for 16 months. The purpose was to determine the following: the caregiver's degree of satisfaction with the orthoses to improve PROM for ease of dressing. The CPCHILD consists of 36 items over 6 sections. Each section involves the performance of skills with the degree of difficulty accomplishing each task rated on a 7-point ordinal scale anchored by 0 (no problem) to 6 (impossible). In addition, the level of assistance required to accomplish each task was rated on a 6-point ordinal scale from 3 (independent) to 0 (total assistance). Section 1, personal care activities of daily living, was used before receiving the orthoses and 16 months later.

Passive ROM of the elbow and wrist was measured in degrees with a goniometer before K.D. being fitted for bilateral upper-limb EWHOs and at the end of the study.

Botulinum toxin type A was administered by 1 injector into the biceps, brachioradialis, and wrist flexors in both K.D.'s upper limbs. K.D. was casted initially at both wrists to gradually improve ROM to assist with the ease of wearing the EWHO. The wrist casts—4 pairs of wrist casts for a total of casts over a 3-month period—were applied to incorporate any gains in ROM obtained from the application of the previous cast. Once improvement in alignment for positioning of the wrists was attained through the casting protocol (15° to 20° increase in PROM into wrist extension bilaterally), K.D. was measured by a certified orthotist for fabrication of bilateral EWHOs containing dynamic elbow and static wrist components. Until the final orthoses were completed, long arm casts were applied to both arms to maintain PROM until the orthoses were completed 2 weeks later.

RESULTS

RANGE OF MOTION

Passive ROM into the direction of elbow and wrist extension improved from the initial assessment to 16 months later. However, the elbow PROM after the 16 months was lacking 80° of extension on the right and lacking 75° extension on the left, as compared with the initial PROM, lacking 90° elbow extension bilaterally. The change was minimal and her mother reported she continued to have difficulty with dressing K.D. (Figure 4). The wrist PROM showed greater improvement 16 months later (Figure 5). K.D. had 20° of right wrist flexion and 30° of left wrist flexion compared with the initial PROM of 60° of right wrist flexion and 70° of left wrist flexion. K.D.'s mother stated she enjoyed being able to polish K.D.'s finger nails and her resting position of hands was much better.

Figure 4
Figure 4:
Passive ROM of the elbows initial and 16 months after.
Figure 5
Figure 5:
Passive ROM of the wrists initial and 16 months after.

CAREGIVER QUALITY OF LIFE

The CPCHILD was used to investigate whether increasing PROM while wearing the EWHOs would improve ease of dressing for the caregiver. The total score initially on the personal care/activities of daily living was 42.5. K.D. required total assist for level of assistance. K.D.'s mother rated 1 (very difficult) for dressing upper and lower body. The total score 42.5 was unchanged 16 months later. Her mother reported she continues to struggle with putting K.D.'s arms through a coat/jacket sleeve.

DISCUSSION

Compliance issues in orthotic wear schedules are a dilemma often faced by therapists and orthotists, especially those with patients with limited active movement requiring ongoing positioning to prevent contractures. The provision of daily orthotic wear may be difficult for the patient/caregiver to complete, especially when the expectation is a structured and time-intensive wear schedule. As a child moves into adolescence, he or she may be more difficult to care for and issues of orthotic compliance may become more prevalent. The task of caring for a young adult with complex disabilities at home may be overwhelming, especially for an aging caregiver.

The resistance of the child to wearing the orthosis is another factor to be considered and may be a predictor of compliance. K.D.'s mother reported that it was a daily struggle to apply the orthosis, and her daughter not only resisted, but also cried during the time the orthosis was on. Initially, having the orthoses worn at night was not realistic, as K.D.'s mother attempted to apply both orthoses each night or alternate with one orthosis each night. K.D. was unable to sleep while wearing the orthosis and cried during the night, making it difficult for both K.D. and her mother to get a good night's sleep. Her mother reported applying both orthoses during the day was also “a battle,” as K.D. became agitated wearing both orthoses. However, mother reported K.D. responded better when alternating wearing the left and right orthosis during the day. She would apply the orthosis on one arm and a hand splint on the other. Her mother stated that K.D. would initially be agitated wearing the orthosis; however, she would eventually relax and tolerate the orthosis for up to 4 hrs.

K.D.'s mother eventually reported to the therapist that the daily commitment and wearing schedule was difficult to follow. K.D.'s behavior varied depending on her medical status. Her mother reported applying the orthoses every 3 to 4 days, alternating with K.D. wearing her hand splint. Her mother reported that K.D. continues to fit into both orthoses and feels the adjustability of the orthoses has made it easy to carry on working with improving PROM (Figure 6). K.D.'s mother stated it continues to be difficult for her to don and doff K.D's coat because of the tightness in both of her elbows.

Figure 6
Figure 6:
K.D. wearing the right resting hand splint and left EWHO.

Arguably, one of the biggest challenges when treating complex severely involved patients with progressive contractures is compliance with orthotic wear. It is important that the clinicians ask the caregiver what he or she believes are the biggest concerns for daily orthotic wear. If the application and use of bilateral orthoses is too difficult for the child to tolerate, perhaps the wear schedule can be adapted to optimize compliance. Adapting the schedule to alternate limbs, orthoses, or total wear time must all be considered as viable options. Pain or discomfort should be assessed and may be treated with medications. The caregiver's goals and schedules as well as physical capabilities must also be reviewed. Complex schedules also may be difficult for caregivers to remember and adhere to.

CONCLUSIONS

A team approach utilizing the physician, therapist, orthotist, and caregiver is needed to optimize compliance in the use of an orthotic device. For an aging caregiver with a young adult dependent in all mobility and function, daily use of an orthosis may be an unrealistic goal. The primary caregiver is the key regulating mechanism in evaluating orthotic compliance outcomes. Caregiver capabilities as well as his or her understanding of the unique characteristics and behavior of the child or adolescent need to be considered.

The orthoses may not be the most comfortable to wear and may be hard for K.D. to tolerate, but her mother was able to determine optimal times for wear and schedule based on her knowledge of the K.D.'s behavior. Perhaps K.D. is now telling us what she wants. The adjustability of the EWHO may make ongoing ROM maintenance of the elbow and wrist possible. However, this will depend on the caregiver's effort to continue application and wear schedule. It is difficult to determine if K.D.'s elbow PROM will eventually improve or worsen.

The practical day-to-day needs of the young adult with multiple physical challenges such as feeding, dressing, bathing, and mobility may contribute directly to both the psychological and physical health of the caregiver. These adolescents will require long-term care that far exceeds the usual needs on into adulthood. Future studies evaluating caregiver compliance in orthotic wear in severely involved adolescents with CP, as well as improvement in ROM and functional change with orthotic use, should be assessed. The impact of additional support for the caregiver, family or other, on orthotic wear compliance should also be considered.

ACKNOWLEDGMENT

The authors thank the study participant and her mother. They also thank Mark DeHarde (Ultraflex Systems Inc) for supplying the Ultraflex for the participant and Dr Shubhra Mukherjee for her medical support.

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Keywords:

cerebral palsy; upper-limb orthoses; compliance; muscle contracture

© 2016 by the American Academy of Orthotists and Prosthetists.