Impact of the COVID-19 pandemic on utilization and cost for care of pediatric and young adult ALL.

OBJECTIVE: Acute lymphoblastic leukemia (ALL) is the most common childhood malignancy and among the most common malignancies in young adults and requires a unique pattern of healthcare utilization including an acute/emergent presentation and an intensive initial 8 months of therapy followed by two years of outpatient treatment. The COVID-19 pandemic caused massive global disruptions in healthcare use and delivery. This report aims to examine the effects of the COVID-19 pandemic on the presentation, diagnosis and continued management of childhood and young adult ALL in regard to utilization and cost of care among commercially insured individuals in the United States. RESULTS: Utilizing a commercial insurance claims database, 529 pediatric and young adult patients were identified who were diagnosed with ALL between January 2016 and March 2021. New diagnoses were evaluated by era and demographics. Utilization was measured by COVID-related era as number of inpatient and outpatient encounters, inpatient days, and cumulative cost during the initial 8 months of therapy. None of these cost or utilization factors changed significantly during or shortly after the pandemic. These findings reinforce that the necessary care for pediatric and young adult ALL was unwavering despite the massive shifts in the healthcare system caused by the COVID-19 pandemic. This provides a valuable benchmark as we further examine the factors that influence the pandemic's impact on health equity and access to care, especially in vulnerable pediatric and young adult populations. This is the first investigation of the effect of the COVID-19 pandemic on utilization and cost of care in pediatric and young adult cancer.

Healthcare cost and utilization for chimeric antigen receptor (CAR) T-cell therapy in the treatment of pediatric acute lymphoblastic leukemia: A commercial insurance claims database analysis.

BACKGROUND: B-lineage acute lymphoblastic leukemia (B-ALL) is the most common malignancy of childhood. With the introduction of novel cellular therapies, cost of care is a critical component and the financial burden experienced by patients and society requires evaluation. AIMS: This study aims to assess the utilization and cost of care for chimeric antigen receptor T-cell (CAR-T) therapy for pediatric ALL patients with commercial insurance coverage in the United States. METHODS AND RESULTS: Using de-identified commercial insurance data from the OptumLabs® Data Warehouse, a cohort of 37 patients, aged 1-25 years, with B-ALL treated with CAR-T therapy between Oct 2016 and Dec 2021 in the United States was identified. Cost was evaluated for a 90 day period encompassing CAR-T infusion and by administration and complication characteristics. Among the 37 identified B-ALL patients that received a CAR-T product infusion, 14 patients were female, median age at administration was 13 years. The median 90-day total cost was $620,500 (Mean: $589,108). Inpatient cost accounted for approximately 71% of the total cost with an average of 28 inpatient days per patient. Although inpatient cost was slightly higher in the older age group (aged 10-25 years) and in patients with a code for cytokine release syndrome (CRS), these differences were not statistically significant. CONCLUSION: This real-world cost analysis shows for the first time the encompassing cost of CAR-T therapy for pediatric B-ALL patients in the US with commercial insurance. This study provides a valuable benchmark that can be used to analyze the financial implications of CAR-T therapy for pediatric B-ALL therapy on health systems.

A Systematic Review of Telehealth-Based Pediatric Cancer Rehabilitation Interventions on Disability.

Background: Telehealth is an emerging method which may overcome barriers to rehabilitation access for pediatric cancer survivors (aged ≤19 years). This systematic review aimed to examine telehealth-based rehabilitation interventions aimed at preventing, maintaining, or improving disability in pediatric cancer survivors. Methods: We performed systematic searches in Ovid MEDLINE, Ovid EMBASE, Cochrane Library, SCOPUS, Web of Science, and CINAHL Plus between 1994 and 2022. Eligible studies included telehealth-based interventions assessing disability outcomes in pediatric cancers. Results: Database searches identified 4,040 records. Nine unique interventions met the eligibility criteria. Telehealth delivery methods included telephone (n = 6), email (n = 3), mobile health applications (n = 3), social media (n = 3), videoconferencing (n = 2), text messaging (n = 2), active video gaming (n = 2), and websites (n = 2). Interventions focused on physical activity (n = 8) or self-management (n = 1). Outcomes assessing disability varied (n = 6). Three studies reported statistically and clinically significant results. Narrative synthesis of findings was constructed based on the Picker's principles for patient-centered care: (1) values, preferences, and needs; (2) involve family and friends; (3) coordination of care; (4) provide social support; (5) holistic well-being; and (6) information and communication. Conclusions: Telehealth-based rehabilitation interventions for pediatric cancer survivors is an emerging research area with potential to improve disability outcomes. Adequately powered trials with consistency in disability outcome measures are warranted. Additional research is needed to determine the effectiveness and best practices for telehealth-based pediatric cancer rehabilitation.

Utilization and Cost of Outpatient Rehabilitation Services for Pediatric Patients Treated for Acute Lymphoblastic Leukemia Using a Commercial Claims Database.

OBJECTIVE: To investigate the temporal trends and factors associated with outpatient rehabilitation utilization and costs for pediatric acute lymphoblastic leukemia (ALL). DESIGN: Deidentified administrative claims data and longitudinal health information on patients representing a mixture of ages, ethnicities, and geographic regions across the United States were accessed using Optum Labs Data Warehouse. Regression models were constructed to assess associations of outpatient rehabilitation with age, sex, race and ethnicity, year of diagnosis, and region. SETTING: Outpatient rehabilitation. PARTICIPANTS: 1000 Patients aged 1-30 years with a new diagnosis of ALL between 1993 and 2017 and continuous insurance coverage (N=1000). INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: Outpatient rehabilitation service utilization and cost based on reimbursed charge codes, summarized over 36 months after cancer diagnosis. RESULTS: In 1000 patients, utilization of outpatient rehabilitation services increased from 20% in 1993-2002 to 55% in 2013-2017. In the earliest era examined, physical and/or occupational therapy was provided to 18% and increased to 54% in the latest years. Speech service utilization remained between 5%-8% across timepoints. Inflation-adjusted cost for provision of services did not change significantly across time and remained low, accounting for a median of 1.3% (Q1, Q3 0.3, 3.4) of total treatment cost in 1993-2002 and decreasing to a median 0.4% (Q1, Q3, 0.1, 1.0) in 2013-2017. Age 1 to 5 years at ALL diagnosis was associated with increased rehabilitation visit number and cost, and treatment in the Midwest was associated with increased likelihood of outpatient rehabilitation service utilization compared to other geographic regions. CONCLUSIONS: Outpatient rehabilitation services are being increasingly provided to patients with ALL at a relatively low cost per patient, yet geographic variability in care utilization is evident. These services do not add excessively to the overall cost of leukemia care and thus cost containment should not be an excuse to limit access.

Wayfinding through the "ocean of the great unknown": how lactating parents establish a direct breastfeeding relationship with an infant with critical CHD.

INTRODUCTION: Lactating parents of infants hospitalised for critical congenital heart disease (CHD) face significant barriers to direct breastfeeding. While experiences of directly breastfeeding other hospitalised neonates have been described, studies including infants with critical CHD are scarce. There is no evidence-based standard of direct breastfeeding care for these infants, and substantial practice variation exists. AIM: To explain how direct breastfeeding is established with an infant hospitalised for critical CHD, from lactating parents' perspectives. MATERIALS & METHODS: This study is a qualitative grounded dimensional analysis of interviews with 30 lactating parents of infants with critical CHD who directly breastfed within 3 years. Infants received care from 26 United States cardiac centres; 57% had single ventricle physiology. Analysis included open, axial, and selective coding; memoing; member checking; and explanatory matrices. RESULTS: Findings were represented by a conceptual model, "Wayfinding through the 'ocean of the great unknown'." The core process of Wayfinding involved a nonlinear trajectory requiring immense persistence in navigating obstacles, occurring in a context of life-and-death consequences for the infant. Wayfinding was characterised by three subprocesses: navigating the relationship with the healthcare team; protecting the direct breastfeeding relationship; and doing the long, hard work. Primary influencing conditions included relentless concern about weight gain, the infant's clinical course, and the parent's previous direct breastfeeding experience. CONCLUSIONS: For parents, engaging in the Wayfinding process to establish direct breastfeeding was feasible and meaningful - though challenging. The conceptual model of Wayfinding explains how direct breastfeeding can be established and provides a framework for research and practice.

Risk Factors for Tube Feeding at Discharge in Infants Undergoing Neonatal Surgery for Congenital Heart Disease: A Systematic Review.

Approximately 30-50% of infants undergoing neonatal surgery for congenital heart disease (CHD) cannot meet oral feeding goals by discharge and require feeding tube support at home. Feeding tubes are associated with increased readmission rates and consequent hospital, payer, and family costs, and are a burden for family caregivers. Identification of modifiable risk factors for oral feeding problems could support targeted care for at-risk infants. Therefore, the aim of this systematic review is to determine risk factors for tube feeding at discharge in infants undergoing neonatal surgery for CHD. Following Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines, a search was conducted using MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews. Studies published before 2010 were excluded. The search resulted in 607 records, of which 18 were included. Studies were primarily retrospective cohort designs and results were often inconsistent. Study quality was assessed using the Joanna Briggs Critical Appraisal Tools. As a group, the studies exhibited substantial risk for bias. Based on the findings, infants who struggle with feeding preoperatively, experience increased nil per os duration and/or low oral feeding volume postoperatively, experience increased duration of mechanical ventilation, or have vocal cord dysfunction may be at risk for tube feeding at hospital discharge. Factors warranting further examination include cardiac physiology (e.g., aortic arch obstruction) and the relationship between neurodevelopment and oral feeding. Clinicians should use caution in assuming risk for an individual and prioritize early implementation of interventions that facilitate oral feeding development.

Impact of the COVID-19 Pandemic on Utilization and Cost for Care of Pediatric ALL.

Objective: Acute lymphoblastic leukemia (ALL) is the most common childhood malignancy and requires a unique pattern of healthcare utilization including an acute/emergent presentation and an intensive initial 8 months of therapy followed by two years of outpatient treatment. The COVID-19 pandemic caused massive global disruptions in healthcare use and delivery. This report aims to examine the effects of the COVID-19 pandemic on the presentation, diagnosis and continued management of childhood ALL in regard to utilization and cost of care. Results: Utilizing a commercial insurance claims database, 529 pediatric patients were identified who were diagnosed with ALL and completed their initial 8 months of treatment between January 2016 and December 2021. New diagnoses were evaluated by era and demographics. Utilization was measured by COVID-related era as number of inpatient and outpatient encounters, inpatient days, and cumulative cost. None of these cost or utilization factors changed significantly during or shortly after the pandemic. These findings reinforce that the necessary care for pediatric ALL is largely inflexible and was unwavering despite the massive shifts in the healthcare system caused by the COVID-19 pandemic. This provides a valuable benchmark as we further examine the factors that influence the pandemic's impact on health equity and access to care, especially in vulnerable pediatric populations. This is the first investigation of the effect of the COVID-19 pandemic on utilization and cost of care in pediatric cancer.

Real-World Cost of Pediatric Acute Lymphoblastic Leukemia Care Among Commercially Insured Individuals in the United States: Effect of Era and Age at Diagnosis.

PURPOSE: Acute lymphoblastic leukemia (ALL) is the most common pediatric malignancy. Five-year survival is approaching 90%. In efforts to further improve outcomes, it is critical to consider the cost of ALL care. MATERIALS AND METHODS: Commercial insurance data from OptumLabs Data Warehouse were used to identify patients with ALL, age 1-30 years, diagnosed in 1993-2017 in the United States, with 36 months of continuous insurance coverage. Patients treated with hematopoietic cell transplantation were excluded. Inpatient and outpatient utilization and cumulative reimbursements (inflation-adjusted to December 2020) were computed 8 and 36 months from diagnosis and stratified by age (1-9, 10-12, and ≥ 13 years) as proxies for National Cancer Institute risk groups. Regression models were constructed to assess associations with demographic and clinical characteristics. RESULTS: Among 927 patients (median age, 6 years; interquartile range, 3-12 years; 43% female), individuals age ≥ 10 years had 23-25 more inpatient days and 22 more outpatient encounters compared with younger patients. The 36-month median cost was $394,000 (USD) (interquartile range, $256,000-$695,000 [USD]), and 64% of the total cost was incurred during the initial 8 months. The 36-month cost was 1.5-fold higher for those age 10-12 years and 1.7-fold higher for those age ≥ 13 years compared with 1-9 years. The cost for those diagnosed in 2013-2017 was 70% higher compared with 1993-2002, and was not different on the basis of sex, race, or ethnicity. CONCLUSION: Older age was associated with higher utilization and cost, and the cost of treatment increased significantly over time. These data provide valuable benchmarks for future studies examining the cost-benefit of ALL therapy modifications.

CREATE Childhood Cancer Rehabilitation Program development: Increase access through interprofessional collaboration.

BACKGROUND: Cancer and its treatment can lead to functional limitations affecting ongoing development in children and adolescents. We developed a pediatric cancer rehabilitation program that integrates evidence-based rehabilitative care into cancer treatment. The program utilizes the CREATE (collaboration, rehabilitation/research, education, assessment, treatment, evaluation) Childhood Cancer Rehabilitation model. We aim to describe the structural and process components of our rehabilitation program and provide an access and utilization analysis. PROCEDURES: To evaluate the rehabilitation program, we identified new patients with oncologic diagnoses from 2002 to 2019 using our database. To evaluate rehabilitative care, descriptive data, including the timing and type of rehabilitation services utilized within 5 years of a child's diagnosis, were collected and reviewed. Statistical analysis focused on change over time. RESULTS: Among 1974 children assessed, 1580 (80.0%) received care from at least one rehabilitation service. Between 2002 and 2018, the percentage of children receiving rehabilitation services grew significantly throughout all disciplines, except for outpatient speech-language pathology. Utilization differed by age and diagnosis. Integrating therapists in the clinic improved patient access, reduced the time to access outpatient services, and increased the number of attended visits. Additional factors supporting program growth included: identifying leaders, using a prospective surveillance model, education, and program evaluation. CONCLUSION: A multimodal interprofessional approach, such as the CREATE model, improves access to and the efficiency of evidence-based rehabilitation services promoting recovery, ongoing development, and quality of life.

The Canadian Occupational Performance Measure: a Feasible Multidisciplinary Outcome Measure for Pediatric Telerehabilitation.

This study describes the feasibility of using the Canadian Occupational Performance Measure (COPM) as a multidisciplinary outcome measure for pediatric telerehabilitation (TR). The COPM was administered at monthly time points over four months. A follow-up survey was conducted with the therapists to assess clinical utility of the COPM. Seventy-three percent of the children seen in TR > one month had at least two administrations of the COPM. Eighty percent of therapists agreed or strongly agreed that the COPM was easy to use in a reasonable amount of time, helped identify functional goals, could be used with various children with varied diagnoses, and measured functional change. In 37 children, the median clinical change in performance and satisfaction was two points or greater on the COPM over the episode of TR. The COPM is a feasible measure perceived positively by pediatric therapists for TR use.

Cancer Rehabilitation in the Pediatric and Adolescent/Young Adult Population.

OBJECTIVES: To identify body impairments, activity limitations, and participation restrictions in children, adolescents, and young adults with cancer amenable to rehabilitation, and provide the recommended screening, assessment and rehabilitation referral information for the health care community. DATA SOURCES: A review of the rehabilitation and pediatric oncology literature regarding functional impairments in combination with clinical expertise from practicing pediatric oncology rehabilitation therapists. CONCLUSION: Rehabilitation intervention has great potential to mitigate the impact of cancer and its treatment and may even have a role in reducing morbidity and mortality. All health care providers have a role in optimizing the function and quality of life in the pediatric cancer population. IMPLICATIONS FOR NURSING PRACTICE: It is imperative for nurses to utilize subjective and clinical screening to identify persons appropriate for rehabilitation referral, collaborate with the rehabilitation team, and support the patients and families in adhering to rehabilitation recommendations.

Kids Are Moving: A Physical Activity Program for Children With Cancer.

Children undergoing cancer treatment are less active than healthy peers. Inactivity persists into survivorship, negatively influencing health and quality of life. Fatigue is one of the most prevalent symptoms during treatment yet children with increased physical activity (PA) have less fatigue. This pilot study evaluated the impact of coaching on PA and fatigue in children undergoing cancer treatment delivered by pediatric oncology nurse practitioners (NPs) during routine clinic visits. NPs used motivational interviewing during clinic visits to coach children and their families on strategies to increase PA at home. Self-report measures of PA and fatigue were completed at treatment months 2, 4, and 6. PA was also measured using actigraphy. Among 30 children ages 6 to 18 years, 7 had acute lymphoblastic leukemia (ALL), 11 had lymphoma, and 12 had solid tumors. Patterns of fatigue were different by disease group with trends to fatigue decreasing during treatment in the patients with ALL (p = .09) and lymphoma (p = .13) but increasing in those with solid tumors (p = .06). Self-report PA was unchanged. Actigraph measurements remained stable for the group. NPs reported time challenges in implementing coaching during the clinic visit and in providing coaching continuity. The intensive, repeating chemotherapy cycles in solid tumor treatment may contribute to increasing fatigue. Treatment intensity decreases during ALL and lymphoma treatment, which may allow for improvement in fatigue. Inactivity persisted during treatment but did not progress. Future research is needed to evaluate more "dose-intensive" PA interventions in larger samples of specific disease groups.

Switching to Bortezomib may Improve Recovery From Severe Vincristine Neuropathy in Pediatric Acute Lymphoblastic Leukemia.

PURPOSE: The purpose of this study was to evaluate the impact of switching patients being treated for acute lymphoblastic leukemia (ALL) from vincristine to bortezomib. PATIENTS AND METHODS: A total of 20 patients with ALL were switched from vincristine to bortezomib (1.3 mg/m/dose) because of worsening neuropathy despite physical therapy interventions (n=18) or at increased risk of neuropathy (n=2). Relapse rates were compared with 56 vincristine-only patients matched by prognostic factors. Maintenance blood counts in bortezomib patients were compared with cooperative group data using vincristine during maintenance. In addition, 6 evaluable patients were assessed for neuropathy using the pediatric-modified total neuropathy score. Neuropathy scores were collected during treatment with vincristine and after switching to bortezomib. RESULTS: After a median follow-up of 3.5 years the relapse rate in patients switched to bortezomib was nonsignificantly different than those remaining on vincristine. Patients on monthly bortezomib had statistically significantly lower platelet counts that did not require transfusions or dose adjustment. Total neuropathy for all 6 cases decreased significantly when switched to bortezomib from vincristine (P=0.015), with motor neuropathy declines in 5 of 6 subjects. CONCLUSIONS: Bortezomib substitution for vincristine in ALL treatment is a potential strategy to mitigate severe vincristine neuropathy. These findings should be confirmed in a randomized clinical trial to further assess benefits and risks of this approach.

Improving body function and minimizing activity limitations in pediatric leukemia survivors: The lasting impact of the Stoplight Program.

BACKGROUND: After acute lymphoblastic leukemia (ALL) treatment, children can have persistent muscle weakness, range of motion limitations, and decreased function after treatment. The Stoplight Program (SLP), a proactive physical therapy intervention, was administered as the standard of care during ALL treatment to prevent and minimize these impairments. The purpose of this follow-up study was to measure body function and activity limitations in ALL survivors who completed the SLP and compare them to a pre-SLP control group, thus evaluating the longer term impact of the SLP. PROCEDURE: Two cohorts of survivors of pediatric ALL ages 5 to 18 years were assessed 18 to 24 months after completing ALL treatment. Measurements included both the body coordination subtest and the strength and agility subtest of the Bruininks-Oseretsky Test of Motor Proficiency, active dorsiflexion range of motion (ADROM), and physical activity by self-report. RESULTS: The control group and SLP group did not differ in size (n = 15), mean age (9 years), or time off ALL treatment (20 months). The SLP group had better scale scores for bilateral coordination (P = 0.05), running speed/agility (P < 0.01), and strength (P = 0.01). The number of survivors with 5 degrees or greater of ADROM (right) was significantly greater in the SLP group. ADROM had a positive correlation with strength/agility standard score in the combined survivor group. CONCLUSION: The SLP is a proactive physical therapy intervention that continues to positively impact children after treatment. Referral to physical therapy should be the standard to optimize long-term function.

Physical Therapist Coaching to Improve Physical Activity in Children With Brain Tumors: A Pilot Study.

PURPOSE: Children with brain tumors (BTs) experience fatigue and decreased quality of life (QOL). Physical activity (PA) is recommended during and after cancer treatment. We explored whether a fitness tracker intervention combined with tailored coaching by a physical therapist (PT) increased PA and QOL and decreased fatigue in children with BTs. METHODS: Participants were 7 to 18 years' old, within 2 years of diagnosis, and received a 12-week PA intervention using a fitness tracker combined with 5 PT coaching sessions. Steps/day measured by Fitbit and self-reports of QOL, fatigue, and PA were evaluated at baseline, 12 weeks, and 24 weeks. RESULTS: Participants had nonsignificant increase in steps/day. Total fatigue, general, and sleep/rest subscales improved while cognitive fatigue and QOL remained unchanged. Higher steps/day were associated with lower fatigue. CONCLUSION: This is a feasible intervention that may contribute to an increase in PA and improve fatigue in children with BTs.

Short-Term Recovery of Balance Control: Association With Chemotherapy-Induced Peripheral Neuropathy in Pediatric Oncology.

PURPOSE: To describe the incidence and short-term recovery of balance control in children and adolescents receiving neurotoxic treatment for noncentral nervous system cancers and to investigate the association of chemotherapy-induced peripheral neuropathy and balance control. METHODS: Sixty-five children and adolescents diagnosed with leukemia, lymphoma, or other solid tumors were tested 3 to 6 months into treatment and 3 and 6 months following treatment using the Bruininks-Oseretsky Balance Subscale and Pediatric Modified Total Neuropathy Scale scores of chemotherapy-induced peripheral neuropathy (CIPN). RESULTS: Seventy-eight percent of the participants scored 1 standard deviation or more below population means on the balance subscale while on treatment, and this improved to 53% by 6 months posttreatment, with the leukemia group performing worse at both time points. On-treatment balance scores were moderately associated with motor CIPN, while at 6 months posttreatment they were more closely associated with sensory CIPN. CONCLUSIONS: Mild to moderate balance impairments improve but can persist, even when CIPN has improved, 6 months after treatment for childhood cancer.

Improving Functional Mobility in Children and Adolescents Undergoing Treatment for Non-Central Nervous System Cancers: A Systematic Review.

BACKGROUND: Childhood cancers and subsequent treatments can leave survivors with impairments that may lead to decreased physical performance. Rehabilitation can be an important component of promoting improved physical function in children and adolescents undergoing treatment for cancer. OBJECTIVE: To review and synthesize evidence for nonsurgical, nonpharmacologic, rehabilitation interventions for children and adolescents undergoing treatment for non-central nervous system cancers aimed at improving their physical impairments and functional mobility limitations. DESIGN: A systematic review of the literature, from January 1996 to October 2016, on interventions for improving functional mobility and physical impairments in pediatric patients on treatment or recently off treatment for a non-central nervous system cancer. SETTING: Not applicable. METHODS: Included articles were reviewed for quality. Evidence for each impairment area was analyzed. MAIN OUTCOME MEASURES: Not applicable. RESULTS: A total of 22 articles met our inclusion criteria. Only 7 randomized controlled trials were identified, and most studies had few subjects. More than one half of the existing clinical trials were on exercise or programs to increase strength and physical activity, with some evidence to support improvements in strength but mixed evidence for improving physical activity. Relatively few assessed other interventions used in rehabilitation such as orthotics, neuromuscular re-education, and functional training. CONCLUSION: The body of literature describing nonsurgical and nonpharmacological interventions for decreased functional mobility and its related impairments is only beginning to emerge as few studies of high quality were found in the literature. Rehabilitation researchers and clinicians need to collaborate to produce the multi-site trials that will be needed to best serve these children.

The Stoplight Program: A Proactive Physical Therapy Intervention for Children With Acute Lymphoblastic Leukemia.

Chemotherapy may cause neuromuscular impairments that can have life-long effects. The Stoplight Program (SLP) was developed as a proactive physical therapy (PT) intervention directed at impairments in children with acute lymphoblastic leukemia (ALL). In this program evaluation, we assessed the feasibility of the SLP delivered as part of standard care and identified body function and activity patterns in patients who received the intervention. Children ages 1 to 22 years, diagnosed with ALL, received an assessment by a physical therapist as part of usual care. The SLP intervention used 3 levels to categorize the impairment levels and intensity of PT. Of the children (n = 135) screened, 46% completed 5 intervention visits and 32% completed the program and met discharge criteria. At initial assessment, 46% of children ages 1 to 5 years and 67% of children ages 6 to 22 years had abnormal motor function. Those completing the program tested within the healthy norms. Research is needed on variables that influence adherence to a PT program and the range of functional impairment and activity limitations in this population.