Cerebral palsy (CP) is a nonprogressive disorder of the central nervous system with a reported incidence of 1.5 to 2.5 per 1000 live births.1 Within the various subtypes, diplegic CP is the most common with a reported incidence of 41.5%.1 For children with CP, the ability to acquire basic motor abilities is thought to plateau by 6 to 7 years of age,2 but ambulation ability tends to worsen over time in spastic CP.3 The loss of this ability in early adulthood has been identified as a major concern along with decreases in overall functional independence at younger ages in persons with disabilities compared with those without disabilities.4 Related concerns include significantly lower levels of physical activity (PA) among youth with CP compared to age-matched peers and the relationship between levels of youth and later adult PA.5
Physical therapists in school-based settings work with students with disabilities to access and participate fully in school environments6 and to achieve educational goals such as acquiring movement skills needed to engage in PA.7 For therapists working with adolescents with special needs, preparing students for the transition from secondary to postsecondary school activities should begin by 14 years of age as mandated by the Individuals with Disabilities Education Act.6
Optimizing function and preparing students for adult life includes working to prevent the development of secondary complications that pose a risk for individuals with chronic disorders such as CP and which may contribute to functional losses. As discussed by Campbell,8 such secondary complications include impaired physical fitness; musculoskeletal, bowel and bladder, and cardiopulmonary problems; psychosocial concerns; as well as decreased independent living, education, vocational skill attainment, and employment.
Fortunately, the importance of minimizing the development of secondary impairments in individuals with CP and subsequent decreases in motor function is widely recognized.4,8,9,10 Within the Guide to Physical Therapist Practice,11 health promotion, wellness, and secondary prevention are recognized roles of physical therapists. Identifying factors that influence carryover of therapy and activity recommendations along with strategies to enhance clinical practice are essential to translating this recognition into reality.
Following interviews with 22 community-living adults with CP,12 5 themes were identified that enhanced the likelihood of carryover of physical therapy (PT) and PA: enjoyment, benefits, ease of understanding, integration into daily life, and supportive and competent health care professionals. These themes complement 7 recommendations made by Campbell8 to improve clinical practice: combining self-determination or the client's own goals with the prevention of musculoskeletal impairment; incorporating a practice framework, such as the disablement model by the National Center for Medical Rehabilitation Research; identifying and encouraging age-appropriate mobility; promoting ownership by the client of health and disability; optimizing nutrition/fluid intake/weight control; preventing musculoskeletal impairment; and developing and encouraging lifelong physical fitness programs. Campbell's recommendations8 are also consistent with the focus of the Pediatrics Research Summit10 regarding the need to promote and maintain physical fitness in children with CP to enhance health, minimize secondary complications, and optimize quality of life.
School-based physical therapists are uniquely positioned to address the needs and goals of students with disabilities in natural environments and to create life-time therapy programs.8 Working with individuals with CP to maximize functional abilities and PA while minimizing the effect of any obstacles is essential to prevent the described negative sequelae and losses. The purpose of this case report is to describe the school-based PT services received throughout high school by a student with diplegic CP (Gross Motor Function Classification System Level III)13 and to share the functional gains made during those 4 years.
DESCRIPTION OF THE CASE
The student was a 15-year-old high school freshman when she was referred for a PT assessment. She was in regular education classes and shared hopes of attending college with an interest in graphic design or animation. Her primary diagnosis was diplegic CP, and her physician referral for therapy services noted no restrictions. Previous school records noted a left-hip “muscle release” 2 years previously, and the student later acknowledged a plate in her left hip. She had previously received weekly school-based PT services during grade school emphasizing “balance, range of motion, and overall strengthening.” However, she had been discharged in the spring of her 8th grade school year given progress at that time but shared she had a stretching/exercise program that she continued, working toward optimal daily frequency.
Primary concerns/goals leading to her reassessment request included a self-reported summer walking regression using knee ankle foot orthoses (KAFOs) and a reverse rolling walker along with a desire to try crutches again. The student shared that she had only been able to walk about 2 days per week over the summer, compared to 5 days per week typically during the previous school year during physical education (PE). She cited time, space, and logistical constraints. While walking distances during 8th grade were not available, a mid-year 7th grade report noted distances of 61.0 m (200 ft) with 1 to 2 rests. Although a manual wheelchair (WC) was her primary means of mobility, she shared that she had not been able to walk during her first 2 weeks of high school, citing the need for help and staff training to be able to resume walking. She cited the inability to wear her KAFOs throughout the school day because of negative effects on other functional activities (eg, toileting/transfers) and logistical difficulties complicated by not having adapted PE (APE) that semester because of her state-required health class. Written consent was obtained from the student and her mother to take part in this case report and to access annual physician referrals and Individualized Education Program recommendations.
The student's initial assessment report, which focused on school-based function, was recorded in November of her freshman year (grade 9), and she subsequently underwent a more detailed 3-year reevaluation 2 months later. Information from both reports has been consolidated here.
Cardiopulmonary. Resting heart rate (HR) 92 beats per minute (BPM). No edema. Blood pressure and respiratory rate not taken initially but later documented to be 104/69 mm Hg and 16 breaths per minute, respectively.
Integumentary. Skin integrity and color intact. A left hip scar was not visualized but reported to be well-healed. Calloused areas were observed over both tibial tuberosities (consistent with the crawling she reported doing at home) and the right ankle, reportedly due to favored right side sitting position.
Musculoskeletal. Upper extremity (UE) range of motion (ROM) was grossly within normal limits with manual muscle testing (MMT) ≥3+/5 bilaterally and isolated, right stronger than left. Lower extremity (LE) ROM/MMT was decreased bilaterally with greater force-generating capacity on the right versus the left and proximal greater than distal. Height and weight per self-report were 144.8 cm (57 in) and 74.8 kg (165 lbs), respectively, with a body mass index (BMI) of 35.8, which is considered to be obese.14 Her left shoe had a 1.11 cm (7/16 in) lift reportedly to accommodate an approximate 2.54 cm (1 in) leg length discrepancy (Table 1).
Neuromuscular. She performed independent manual WC propulsion and transfers. Sit to and from stand and ambulation with KAFOs and reverse rolling walker were performed without hands-on physical assistance. Minimally decreased coordination was observed in the left UE versus the right UE (Table 1). Sensation was subjectively intact.
Communication Ability, Affect, Cognition, Language, and Learning Style. She was alert and oriented to person, place, time, and condition; she was cooperative, motivated, bilingual in English and Spanish, and an active problem-solver without any apparent learning barriers.
School Functional Mobility. The student primarily used a manual WC to access the school environment. Although she was able to propel herself independently with an upright posture and manage WC parts, she relied on an assistant to push her at the beginning and end of the school day “to speed things up” and for help gathering and transporting her lunch tray prior to independent feeding. She was independent transferring from WC to floor and back and with toilet transfers, preferring to use a grab bar. Assistance was required to don and doff her appropriately fitting KAFOs, primarily to manage the knee locks, ankle strap, and shoe don and doff. Gait with her reverse rolling walker and KAFOs was slow but steady, with periodic brief standing rests due to fatigue. She was able to complete approximately 182.9 m (600 ft) in 15 to 20 minutes. During one 27-minute walk, her HR was noted to have increased from 92 BPM resting to 142 BPM. Walking was accomplished primarily in uncrowded hallways with previous notes in her record reporting her unease walking in congested areas. The school fire plan was also reviewed with the student and an end-row locker was obtained for easier access.
The student communicated a past lack of success with crutches but a desire and perceived readiness to try again. When first assessed with axillary crutches, she walked approximately 45.7 m (150 ft) with an overall minimal assistance/contact guard assistance with a 4-point gait requiring occasional verbal cues for technique and occasional maximal assistance for balance. With her KAFOs unlocked, she nonreciprocally ascended 13 steps with 1 crutch and 1 hand rail with moderate assistance. She sat at the top of the stairs to rest, “bumped” down the first 6 steps due to an expressed fear of heights, and then descended the remaining steps with moderate assistance. Her HR was 136 BPM.
Activities of Daily Living. For other activities of daily living not directly observed in the school-based environment, she self-reported independence with grooming, bathing, upper body dressing, toileting, and bowel/bladder control. Although she could dress her lower body, she reported increased time to don her left sock and a previous lack of success with trials of various adaptive devices. She reported independence with shower transfers. She was crawling without any adaptive equipment.
Gross Motor Ability. To quantify gross motor abilities, the student completed the Gross Motor Function Measure (GMFM),15 an 88 item “standardized observational instrument designed and validated to measure change in gross motor function over time in children with CP” with reported total score interrater reliability of 0.90 and for individual dimensions ranging from 0.75 to 0.97.15 Each item is scored 0 (does not initiate) to 3 (completes). She demonstrated good effort, and scores were believed to reflect abilities without assistive devices or KAFOs. While standing she was erect and symmetrical using a walker and KAFOs; her posture was markedly crouched without KAFOs. Additional GMFM testing with KAFOs and walker or crutches was not completed because of time constraints, although those abilities are described elsewhere. Total score was 66.4% with dimension scores of 96.1% lying and rolling; 96.7% sitting; 95.2% crawling and kneeling; 35.9% standing; and 8.3% walking, running, and jumping (Table 2).
ROM, Muscle Performance, Coordination, and Pain. See Table 1 for additional information beyond the systems review related to ROM, MMT, and coordination. The student denied any joint discomfort, other than left hip discomfort noted during left side sitting.
The student was a delightful, motivated young woman who clearly articulated her needs. She had worked hard to attain her walking abilities and appeared motivated to maximize those abilities and identify strategies to optimize walking frequency. Her desire to increase her ambulation frequency and to again try crutches appeared realistic. Although she appeared to be adapting well to the high school environment, she admitted to feeling overwhelmed at times, adjusting to a new school and to personnel unfamiliar with her abilities and needs.
The student's primary Preferred Practice Pattern11 from the Guide to Physical Therapist Practice was “Neuromuscular Pattern C: Impaired Motor Function and Sensory Integrity Associated With Nonprogressive Disorders of the Central Nervous System-Congenital Origin or Acquired in Infancy or Childhood.”
Prognosis (Including Plan of Care)
Given the student's needs and perceived ability to increase ambulation with crutches on level surfaces and stairs, 60 minutes per week of direct PT services was recommended (in part to provide the time required to don/doff her KAFOs) and approximately 30 minutes per month of consultative services. Treatment focus was recommended to be on functional mobility within the school environment, particularly continued gait training and resuming ambulation at school as time and logistics allowed, and working with school staff as needed and her APE teacher after she began taking APE again in place of the health class. Treatment also included ROM and strengthening exercise, and balance activities. It was hoped that once back in APE, she would resume a more regular walking schedule with staff with her KAFOs and reverse rolling walker, utilizing therapy sessions to focus on the feasibility of more functional ambulation with crutches. In addition, a weekly occupational therapy session focused on written work output and keyboarding. Her Goal Statement was “State Goal 19: Acquire movement skills needed to engage in physical activity.”7 Within that goal, 3 short-term objectives were established in the Individualized Education Program for the school year (Table 3).
DESCRIPTION OF INTERVENTION
Weekly direct school-based PT services focused on progressive gait training on level surfaces, stairs, ramps, and uneven surfaces, incorporating principles of task repetition, motor learning, dual task performance, and motor imagery. As abilities progressed, novel and/or more challenging opportunities were routinely sought, such as different stairwell configurations, varied surfaces, auditorium stairs and ramps, outdoor surfaces and curbs, and higher traffic areas during the change of class periods. Beginning a therapy session with a challenge to attain one new skill component and/or to try a novel activity was appealing to the student's competitive nature and motivation while lessening potential monotony associated with task repetition. Activities were also made more challenging or progress evidenced when the student was able to, for example, walk and talk, which reflected decreased cognitive demand.
After it was noted how successfully this student incorporated motor imagery practice, this technique was actively encouraged. For example, initially afraid of stair-climbing due to fear of heights, she was asked to picture herself being successful with this activity. When she practiced getting up from the floor without external supports, she first mentally rehearsed various options and chose the one that ultimately worked.
Progressive gait training was the ongoing focus of the student's school-based therapy program and ambulation was the focus of her APE class. Given her personal goals, her demanding academic load, and limited opportunities to carry over walking at home, this focus allowed the student to continue progress toward her ambulation goals while being involved in regular, ongoing PA typically 4 days per week. In addition, she continued her home program received during grade school and participated in several community- or hospital-based programs with which she became involved. These included a mentoring program for women with disabilities, a fitness and nutrition training program, yoga, karate, and scuba diving.
Monthly consultative time was used for training updates, and progress monitoring with teaching assistants who walked with the student 3 times per week for approximately 30 minutes as time allowed during her APE class. This occurred on days when she was not receiving her direct occupational therapy or PT services. Consult time additionally was used to meet with teachers as needed, verify knowledge of fire safety procedures, verify independence using a WC lift to access portions of the school building, and solve any mobility problems that might arise.
Over 4 years, the student was scheduled for weekly 55 to 60 minutes direct therapy sessions in addition to 20 to 30 minutes of monthly consultation, which decreased as staff familiarity increased. She received a total of 123 sessions of direct school-based PT. Freshman year (9th grade), she attended 34 of 37 planned sessions, sophomore year (10th grade) 32 of 32 sessions, junior year (11th grade) 31 of 38 sessions, and senior year (12th grade) 26 of 34 sessions. Missed sessions were due to a combination of occasional absences from school and conflicts related to school scheduling, academic testing, meeting with guidance counselors, and so on.
DESCRIPTION OF OUTCOMES
Between the student's initial assessment in November and more detailed 3-year reevaluation in January of her freshman year (9th grade), crutch walking improved considerably. She was walking with contact guard assistance using a 4-point gait with only occasional balance losses and was beginning to progress toward occasional stand by assistance only. She was now climbing the full flight of stairs to the second floor (26 steps with a landing) with contact guard assistance with unlocked KAFOs using 1 rail and 1 crutch while beginning to simultaneously carry her second crutch. She was ascending and descending nonreciprocally and had just begun to eliminate a rest at the top of the stairs and to ascend and descend the lower steps with stand by assistance due to fear at the top steps. Assistance was required to unlock and relock her knee locks before and after stair climbing. Moving through doorways was difficult with frequent efforts to optimally reposition her crutch to keep the door ajar. See Table 3 regarding her subsequent progression toward and achievement of annual objectives during her remaining freshman and sophomore, junior, and senior years, 9th through 12th grade, respectively.
Continued significant functional gains were noted at the time of the student's combined January senior (12th grade) 3-year reevaluation and the June senior (12th grade) update. She shared that it was much easier to don her left sock after losing more than 9.1 kg (20 lbs) since the prior year, decreasing from 74.8 kg to 63.5 to 64.9 kg (165 to 140 to 143 lbs) with a resulting BMI of 30.4 to 31.0, still considered obese14 but decreased from a BMI of 35.8 in the freshman year (9th grade). Showering ease had also improved since obtaining a shower chair through the children's hospital where she received her medical care. Independent WC propulsion remained her primary means of mobility, and she was pleased with her new manual WC obtained in the spring of her junior year (11th grade) also through her local children's hospital.
Relying exclusively on axillary crutches and long-leg braces, and an assistant during APE, she no longer kept her reverse rolling walker at school. She had been assessed with forearm crutches but felt more “secure” with axillary crutches. She was able to move from sitting to and from standing without physical assistance with locked KAFOs and to walk with supervision in open areas, and closer supervision in crowded areas, using a combination of a 2-point and 4-point gait pattern. She was able to navigate doors and walk with increased confidence and decreased cognitive demand as evidenced by her ability to simultaneously walk and talk. Ramps had initially been quite intimidating, but she now required stand by assistance or supervision and was moving in a straighter trajectory versus initially zigzagging. During therapy sessions, she had walked with one right crutch with small steps for up to 6.1 m (20 ft) with contact guard assistance or stand by assistance after an initial contact guard assistance or minimal assistance.
She was able to reciprocally descend a full flight of stairs with stand by assistance with unlocked KAFOs with crutches and 1 rail and ascend nonreciprocally with an alternating lead leg or more and more often reciprocally. Depending on the “run” of the stairs, she had ascended an entire flight reciprocally.
Although she continued to require assistance to don and doff her KAFOs, primarily for the ankle straps and shoe, an important gain occurred when for the first time in mid-December of her senior year (12th grade), she was able to lock her own KAFOs before standing, which had remained a major “stumbling block” toward more independent and functionally significant walking. Up until then, the student had required assistance to generate sufficient downward force through each knee in sitting to engage the drop locks.
Gross Motor Function Measure15 gains were noted in her total score and in each of the 5 dimensions (Table 2). Her total score increased 12.4% from freshman year to 78.8%, and individual dimension scores increased 3.9% for lying and rolling, 3.3% for sitting, 4.8% for crawling and kneeling, 33.3% for standing, and 16.7% for walking, running, and jumping.
Beyond high school, the student hoped to attend a 4-year college after graduation and planned to major in the sciences. Activities outside of school included continued participation in a mentoring program for women with disabilities, yoga, karate, and scuba diving through a local rehabilitation hospital, and a fitness/wellness program through a local children's hospital (which she credited for her significant weight loss).
By graduation from the 12th grade, the student was now consistently (≥90% of the time) locking her KAFOs in preparation for walking, which lead to a focus change with her stair-climbing objective (Table 3). Although she could reciprocally descend stairs with crutches and one rail 90% to 100% of the time and was alternating her lead leg when ascending, she had begun to ascend/descend stairs with her left KAFO locked and right KAFO unlocked hence moving nonreciprocally. This change occurred because although she could now consistently lock both KAFOs in sitting, she was able to relock only her right KAFO in standing at the end of a flight of stairs; therefore, her overall independence was increased if her left KAFO was kept locked. Her walking distance with a right axillary crutch had increased to 22.9 m (75 ft) more but she continued to require contact guard assistance.
During a final 6-minute walk test,16 the student completed approximately 152.4 m (500 ft) in 6 minutes with KAFOs and 2 axillary crutches with a resting HR of 72 BPM. Unfortunately, just at the end of the 6-minute walk test, she had her first fall during therapy, when her right crutch reportedly “went right out from under her.” During subsequent discussions where the pros and cons of various devices were again discussed, she communicated that she still preferred the independence and lesser bulk of axillary crutches over her reverse rolling walker and felt her fall was “a fluke.” Due to her fall, unfortunately her HR was not obtained at that tesing session.
Her post–high school plans were to attend a 4-year college majoring in chemistry with a goal of becoming a pharmacist. She had obtained a scholarship, planned to live in the dorms, and acquired a power WC to use as needed for more efficient campus access. She expressed confidence in her abilities to manage on her own, to request help if needed, and to continue problem-solving future needs. She described plans for her left hip plate removal that summer.
This student's continued ambulation gains during her high school years challenge the notion that functional loss might be inevitable during these years and support the importance of ongoing PA. Although it is not possible to distinguish various causes and effects within a case report format, her progress appears to support the benefits of continued direct school-based services at a time when many students may have been discontinued from services or decreased to consultative/monitoring services only.17 Such discontinuation may be related to the belief that younger children are more likely to benefit from direct services compared with older children17 who may be believed to have plateaued in their development.2
This student possessed many positive traits that contributed to her success. She was focused and motivated, yet realistic. Although she acknowledged her disability, it did not define who she was, and she readily participated in her regular education/honors curriculum in addition to APE. She was able to identify and strive toward concrete goals yet laugh at herself when she made errors. She was an excellent problem solver and would often anticipate problems and contribute possible solutions. Strong family support was evident through conversations, as observed at school meetings and in prompt carryover of requests, and in a sibling's attempt to help her solve the problem of locking the KAFO. These strengths are consistent with positive prognostic factors beyond physical impairments identified previously2 and attest to the effect of various personal and environmental factors on PA performance such as preference identification, motivation, self-efficacy, and social supports.9
Treatment emphasis on the repeated practice of functional activities was consistent with the approach used by Ketelaar et al18 in their study, which compared the benefits of functional PT and PT which placed a greater emphasis on movement quality. Although gross motor improvements were comparable in both groups, functional skills improvement was greater in the functional therapy program group. In addition, this student's success incorporating motor imagery practice was consistent with that shared by Dickstein and Deutsch19 in their review of research on motor imagery and its use in PT.
Progressive and simultaneous involvement in several outside community activities no doubt also contributed to her success. Participating in a community-based group fitness program emphasizing strengthening, aerobic, and flexibility activities has been shown to be beneficial for children with disabilities20 and may be considered as a useful adjunct to or progression from therapeutic services. Yoga21 was another outside activity enjoyed by this student and believed by her to have contributed to her flexibility gains, which coupled with her weight loss between her junior and senior years (11th and 12th grade, respectively) likely contributed to her becoming able to lock her KAFOs. Her weekend activity participation coupled with her gait-training/ambulation activities was consistent with the 5 times per week, 30 minutes minimum PA recommendations of the American College of Sports Medicine and American Heart Association.22
In addition to the student's personal strengths, strengths of this case report include the quantification of her gross motor abilities and their change over time, despite a possible ceiling effect within the first 3 dimensions of the GMFM15 (Table 2). In the future, however, utilization of the GMFM-6623 would be more efficient than the GMFM-88.15 Specific objectives also allowed progress to be clearly documented, and by incorporating other staff, the student was able to continue walking consistently outside of therapy sessions. Providing service in a natural school-setting versus a clinic environment is considered an additional strength consistent with current best practice6 and collaborative service model recommendations.24,25
Balancing competing needs was an ongoing challenge and contributed to some perceived limitations of this case report. Better or more consistent quantification of motor impairments, fitness measures, and activities outside of school may have enhanced service coordination and lead to reconsideration of treatment focus and progression. For example, due to time constraints, impairment level measures were not obtained as part of the student's reevaluations. Also, more frequent use of the 6-minute walk test16 with the incorporation of a practice test10 may have also been useful, although less direct activity tolerance indicators were used more commonly, such as the number of standing rests required during walking or whether a sitting rest was required at the top of a flight of stairs. Given the limitations of the school environment and multiple demands on the student and her time, however, decisions were made that were thought to best balance her needs while focusing on her primary goals and functional task repetition. Whether other types of interventions may have further enhanced her outcomes is unknown.
Future studies could attempt to quantify the contributing role of various interventions in and outside of school and the optimal frequency and duration of each. In a nationwide survey of pediatric physical therapists,17 weekly was the most commonly recommended frequency of direct services and appeared to decrease with increasing age. Although this student's recommended session duration of 55 to 60 minutes was longer than the most common recommendation of 30 minutes reported by Kaminker et al,17 it was within the reported range of 15 to 60 minutes.
Improved communication between school and community providers could enhance coordinated service delivery and transition planning. Following students longitudinally beyond high school could identify areas where transition planning was effective or in need of enhancement. Given the relationship between levels of youth and adult PA5 and evidence that many adults with CP do not maintain walking gains3 and demonstrate decreases in functional independence at younger ages,4 long-term follow-up might provide valuable insights to assist future decision-making so that physical therapists truly do create as Campbell8 encouraged “therapy programs for children that last a lifetime.”
The author wishes to thank the project advisors John O. Barr, PT, PhD, Lynn M. Frank, PT, MPT, ACCE, and Susan J. Hartung, PT, MA, ACCE, from Saint Ambrose University, Department of Physical Therapy, Davenport, Iowa, for the support and input they provided.