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RESEARCH REPORTS

Early Intervention Therapy Services for Infants With or at Risk for Cerebral Palsy

Gmmash, Afnan S. BSPT, MS; Effgen, Susan K. PT, PhD, FAPTA

Author Information
doi: 10.1097/PEP.0000000000000619

Cerebral palsy (CP) is one of the most common disorders of early childhood.1 Cerebral palsy is a disorder of movement and posture caused by a nonprogressive injury to the immature brain.1 Advances in the diagnosis of CP allow for an accurate early prediction of CP in the first few months of life, which is critical to starting appropriate early intervention (EI).2 The benefits of intervening early and the importance of early experiences for the developing brain have been reported in the literature.3 The inputs from early experiences improve brain connectivity of specific areas related to input and assist in pruning and removing nonparticipating structures.4,5 The process of pruning results in the reduction of synapses to enhance functional consolidation and increase the efficiency of learning. Providing EI for infants at risk for CP in this sensitive period of development may promote cognitive and motor learning.6

Randomized controlled trials support the use of family involvement, directed goal training, and environmental enrichment in promoting the motor development of infants and toddlers with or at risk for CP.7–10 An intervention entitled Goal-Activity-Motor-Enrichment (GAME) combines intensive family-centered interventions with goal-directed motor enrichment based on the principles of neuroplasticity and motor learning.11 GAME provides a clear description of an intensive home program, provided by physical therapists (PTs) and occupational therapists (OTs), which has been evaluated for feasibility and early efficacy in a pilot study and a randomized controlled trial. Prechtl's General Movements Assessment (GMA) is considered the most accurate clinical tool to predict CP before the age of 5 months and was used in GAME to identify infants younger than 6 months at high risk for CP. Of the 30 participants, 24 were diagnosed with CP at 12 months of age, confirming the high sensitivity of GMA in predicting CP. The Canadian Occupation Performance Measure (COPM) was used to prioritize the families' goals, build an individualized home program based on families' goals, and coach parents in application of daily strategies to enrich their child's environment. The intervention used activity-based motor training that focused on variable practice, early activation of the lower limb muscles, and encouragement of child-generated activities. Therapists provided a 60- to 90-minute home training at least once every 2 weeks. Parents in the GAME group applied the home program daily for an average of 47 minutes per day for 6 to 9 months. Their infants had improved motor abilities compared with the control group. GAME was superior to the standard of care in Australia in enhancing motor outcomes in young infants with or at risk for CP.12

Task-specific motor interventions such as GAME were supported for all subtypes of CP by Novak and colleagues2 reviewed the best available evidence for diagnosis and treatment of CP and provided the following recommendations to amplify neuroplasticity in the early years of life:

  1. Cerebral palsy may be detected earlier by combining the results of neonatal magnetic resonance imaging (MRI) (86%-98% sensitivity) and GMA (98% sensitivity) before 5 months adjusted age, and a combined use of MRI and the Hammersmith Infant Neurological Examination (HINE) after 5 months adjusted age.
  2. Use the HINE combined with MRI results to guide in predicting motor severity before the age of 2 years and use the Gross Motor Function Classification System (GMFCS) after the age of 2 years.
  3. Use bimanual training and Constraint Induced Movement Therapy (CIMT) for infants and toddlers with or at risk for unilateral CP.
  4. Early management of sleep and feeding problems is important before the emergence of secondary behavioral problems or malnutrition.

Elements of the GAME intervention and the recommended practices for infants and toddlers with or at risk for CP are similar to the principles of EI services provided in the United States.13 In the United States, early identification and intervention services for infants under the age of 3 years with or at risk for developmental delay are delivered through part C of the Individual with Disabilities Educational Improvement Act (IDEA).13 According to IDEA, a family must have an Individualized Family Service Plan (IFSP) that provides individualized, multidisciplinary assessment and intervention based on the child and family's needs and strengths. Therapists are advised to direct and guide parents to set developmentally appropriate and measurable therapy goals in the IFSP. IDEA mandates provision of assessment and intervention in the infant's natural environment such as the home or daycare setting to incorporate goal-directed activities into the family's daily routines. Some parents of children with CP state they do not feel competent to participate in goal identification and implement recommended home activities, which may suggest insufficient parental invovment.14 The 39th Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, 2017, indicates that 88.7% of EI services are provided in the child's home.15 Eligibility criteria, frequency, and intensity of interventions vary across states, which results in discrepancies in the types of EI therapy services.16 Additionally, the quality and type of family education, involvement, and training protocols have not been adequately explored. Thus, the purpose of this study was to identify the practices US PTs and OTs use in EI for infants with or at risk for CP and to determine whether the current practice matches the recommended practices supported by the evidence.

METHODS

Respondents and Procedure

The target population was US PTs and OTs providing or who have provided EI services for infants with or at risk for CP under the age of 3 years. The target population did not permit the use of probability sampling methods. A snowball sampling technique was used to recruit therapists. After the Institutional Review Board approval, the authors recruited subjects from August 2017 to March 2018. Therapists were notified about the study through written flyers with an anonymous survey link. Flyers were distributed to EI providers at 2 scientific conferences, a posting in the Academy of Pediatric Physical Therapy (APPT) Early Intervention E-News, APPT Special Interest Group member communication, Pediatric Physical and Occupational Therapists Discussion Group, and e-mails to EI colleagues. State Part C service coordinators were contacted to disseminate the recruitment flyer to EI therapy providers nationwide. Four service coordinators responded and shared the flyers.

Instrumentation

Questions were written on the basis of a literature review of current recommended practices for infants with or at risk for CP. The content of the survey questions was assessed by a panel of leaders and experts in EI services in the United States (3 PTs and 2 OTs). Each expert provided comments on the formant, clarity, content, and wording of the questions. The authors considered all of the comments and edited the questions. After revision, the survey was pilot tested by PTs and OTs working in EI and modified to clarify some phrases as suggested. An online survey was developed using Qualtrics online software. The survey included an explanation of the purpose of the survey, estimated completion time, target population, and consent form.

The survey was 32 multiple-choice questions related to the current EI services provided for infants with or at risk for CP, 1 open-ended question and 4 questions related to participants' consent, e-mail addresses to participate in future studies, discipline, and state where they practiced. Eight questions were about the onset, duration, frequency, location, and focus of services. Three questions were about early detection and assessment of severity. There was 1 question with 7 subquestions related to motor training, 9 questions related to goal identification and parental education, and 11 related to home programs and environmental enrichment. To combat survey bias, the questions were randomized. The survey link for participants remained opened for 2 weeks after accessing the link to allow for later completion (see the Supplemental Digital Content, available at http://links.lww.com/PPT/A253).

Data Analysis

The survey data were analyzed using Statistical Package for Social Sciences (IBM SPSS Statistics for Windows, Version 24.0, Armonk, NY) descriptive statistics. Frequency and percentages were used to reflect responses to each question. The Pearson chi-square test was used to evaluate differences between the PTs and OTs current practices. Alpha was P ≤ .05.

RESULTS

A total of 359 participants from 42 states accessed the survey link. Survey inclusion and exclusion are illustrated in Figure 1. There were 269 surveys included in the analyses. The majority of the respondents were PTs (67%) and 33% were OTs. Figure 2 specifies the number of therapists by region. There were no significant differences (>.05) between PT and OT responses with the exception of 3 items: providing parents with prognostic information about their child's condition (P = .001), frequency of updating the home program (P = .001), and educating parents about evidence-based practices to optimize feeding (P = .001). Responses for the items with no-significant difference from PTs and OTs were combined in the analyses.

Fig. 1.
Fig. 1.:
Process of inclusion and exclusion of surveys.
Fig. 2.
Fig. 2.:
Distribution of participants by region as defined by US Census Bureau. Northeastern region included Connecticut, Maine, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, and Vermont. Midwestern region included Illinois, Indiana, Iowa, Kansas, Michigan, Minnesota, Missouri, Nebraska, North Dakota, Ohio, South Dakota, and Wisconsin. Southern region included Alabama, Arkansas, Delaware, District of Columbia, Florida, Georgia, Kentucky, Louisiana, Maryland, Mississippi, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Virginia, and West Virginia. Western region included Alaska, Arizona, California, Colorado, Hawaii, Idaho, Montana, Nevada, New Mexico, Oregon, Utah, Washington, and Wyoming.

Onset, Frequency, Duration Focus, and Location of Services

Physical therapists and OTs commonly (58%) provided services for infants at risk for CP before the age of 6 months, 34% of the providers started intervening when the infants were between 6 and 11 months of age, and 8% intervened at or after the infants' first birthday. The majority of the therapists (82%) reported providing the infants weekly (57%), or biweekly sessions (25%) for 45 to 60 minutes (77%). Providers (52%) stated that infants at risk for CP received at least 7 to 12 hours of services in a 3-month period. Seventy-seven percent of providers believed that some of the infants needed additional therapy sessions, and 51% of these therapists reported that more sessions are needed to provide direct handling and promote the child's neuroplasticity in the early stages of development. Only 18% of those therapists stated that additional therapy was needed to support and educate the family to practice the activities at home. Most of the providers' primary focus in therapy (93%) was caregiver education (Figure 3). Fifty-seven percent of therapists provided intervention in the home environment, and 15% in community-based settings.

Fig. 3.
Fig. 3.:
Focus of services provided for infants with or at risk for cerebral palsy.

Early Detection and Assessment of Severity

Providers indicated that the most common reasons for referral of infants at risk for CP were prematurity or medical history (55%) followed by observed developmental delay (34%). Ninety-six percent of the infants were considered at risk for CP at or before the age of 5 months due to prematurity or medical history. Four percent of the providers always used GMA for early detection of CP, and two providers (0.7%) indicated using the HINE to determine the motor severity. A variety of outcome measures were used to assess the overall development and the severity of motor delays in infants at risk for CP based on personal preferences or state requirements (Table). Sixteen percent of providers used more than one assessment and 6% used none.

TABLE - Services Provided by Physical and Occupational Therapists for Infants With or at Risk for Cerebral Palsy
Question Response N (% of respondents)
Begin therapy services Between 0 and 5 mo of age 157 (58%)
Between 6 and 11 mo of age 90 (33%)
Between 12 and 18 mo of age 19 (7%)
Older than 19 mo 3 (1%)
Frequency of early intervention More than once a week 34 (13%)
Once a week 156 (58%)
Once every 2 wk 68 (25%)
Once a month 8 (3%)
Less than once a month 3 (1%)
Infants are considered at high risk for CP based on GMA scores 4 (1%)
MRI 1 (0.4%)
Cranial ultrasound 1 (0.4%)
Prematurity or medical history 149 (55%)
Observed developmental delays 92 (34%)
Frequency of using Canadian occupational performance measure and/or goal attainment scaling Always 18 (7%)
Usually 22 (8%)
Occasionally 31 (12%)
Rarely/never 198 (73%)
Assessment of severity used Peabody Developmental Motor Scales, 2nd Edition 68 (25%)
Gross Motor Function Measure–88 and 66 45 (17%)
Developmental Assessment of Young Children, 2nd Edition 33 (12%)
Battelle–Developmental Inventory, 2nd edition 23 (8%)
Abnormal Involuntary Movement Scale 23 (8%)
Hawaii Early Learning Profile 13 (5%)
Infant Motor Performance 12 (4%)
Bayley Scales of Infant and Toddler Development, 3rd Edition 12 (4%)
Test of Infant Motor Performance 9 (3%)
Assessment, Evaluation and Programming systems 6 (2%)
Hammersmith Infant Neurological Examination 2 (0.7%)
Do not use standardized assessment tool 15 (6%)
Abbreviations: CP, cerebral palsy; GMA, General Movements Assessment; MRI, magnetic resonance imaging.

Motor Training

On questions related to providing child-initiated and task-focused interventions, 67% of the providers indicated that they always direct intervention toward skill attainment such as rolling and head control, 60% reduce or withdraw manual assistance as soon as the infant demonstrated self-initiated progress with the task, 57% ensured self-generated motor activity, and 65% provided strategies and activities to practice reaching and grasping. Therapists (65%) support using a variety of objects in practicing reaching and grasping. Thirty-six percent of providers always supported early activation of lower limb muscles using both concentric and eccentric exercise, and 23% used modified CIMT and/or bimanual training in the presence of asymmetrical arm function.

Goal Identification and Parent Education

The majority of providers (89%) considered caregivers' goals to be the most important factor in customizing an EI plan, followed by the infants' motor ability (72%), infants' home environment (62%), and therapist goals (25%). More than half of the providers (55%) specified that the intervention for infants at risk for CP was always driven by parent identified goal areas. However, 74% of the providers rarely or never used outcome measures such as COPM, Goal Attainment Scaling (GAS), or other tools to assess parent satisfaction or to prioritize their goals. Sixty-four percent of the providers always encouraged parents to use their knowledge of their child's play preferences to elicit self-generated motor activity, and rarely or never (43%) encouraged parents to provide their infant with maximum assistance to complete the desired task. Providers educated the parents to understand the “missing components” of the desired action (41%), to problem solve and simplify the task to enable partial task attainment (43%), and enhanced the infant's ability to carry out the activity independently (67%). Therapists (62%) coached parents to progress the difficulty of the task when indicated, 32% provide their infants with variable practice, and 45% observe the therapist's demonstration of skills and strategies to promote the infant's motor behaviors.

Less than half of the therapists (44%) always provided the parents with evidence-based information regarding early learning stimulation to enhance the infant's cognitive and language development, to optimize sleeping (11%), and to practice responsive parenting (15%) and how they are related to motor development. There was a significant difference (= 51.75, P = .001) between PTs and OTs in educating the parents about evidence-based practices to optimize feeding. Occupational therapists provide parents with evidence-based information about feeding 3 times more often than PTs (9%). Physical therapists (42%) always or usually (21%) provided parents with prognostic information about their child's condition significantly more than OTs (= 23.95, P = .001).

Home Program and Environmental Enrichment

The majority of PTs and OTs (75%) always provided parents of infants at risk for CP a home program and 31% of those providers always gave parents individualized home programs. There was a significant difference (= 21.46 P = .00) between PTs and OTs in the frequency of updating the home program. More PTs (79%) than OTs (63%) update the home program every visit. Fifty-two percent of providers advised parents to spend 15 to 30 minutes daily to carry out the home program. Providers selected parents' identified goals (58%) as the most important factor in designing home programs followed by the family's time constraints (16%), family's daily routines (11%), child's severity of impairment (5%), child's environment (7%), and therapists' identified goals (3%) (Figure 4).

Fig. 4.
Fig. 4.:
Frequency of assessing and enriching the home environment.

Thirty-nine percent of providers always included specific strategies to promote environmental enrichment, and 27% coached parents on using age-appropriate toys to target a desired motor task. Half of the providers always advised parents to include siblings and extended family members in the home interventions, and 32% always encouraged parents to provide their infants with variable practice outside the home environment. Only 2% of providers formally assessed enrichment of home environment and 28% used observation and clinical judgment to assess home enrichment (Figure 4). Strategies therapists used to assess environmental enrichment were visual observation of the home setting, ecological assessment, asking questions, routine-based interview, and ongoing assessment.

DISCUSSION

This is the largest survey in the United States targeting PTs and OTs providing EI for infants with or at risk for CP under the age of 3 years. The results from this study highlight some similarities and discrepancies between current and recommended practices.

These results suggest that infants with or at risk for CP begin receiving a reasonable amount of therapy in their first 6 months of life. Consistent with findings of another,17 the frequency and duration of interventions provided for infants at risk for CP ranged from once a week to once every 2 weeks for 7 to 12 hours in a 3-month period. In agreement with the findings reported by the 39th Annual Report to Congress, most infants and toddlers served under IDEA Part C received interventions in their homes.15 These findings demonstrate that the intensity and the location of most of the services provided for infants with or at risk for CP in the United States are similar to those provided in the GAME intervention.12

High-quality evidence recommends using standardized assessments such as MRI, GMA, or HINE for early detection of CP in infants under the age of 5 months with a clinical history that suggests increased risk for CP such as prematurity or encephalopathy.2 Although our findings indicated that the majority of infants are referred to EI before the age of 5 months, less than 25% of the providers specified using GMA, MRI, or HINE for early detection of CP. The feasibility of using MRI in early detection of neuroanatomical abnormalities could be restricted because of safety, accessibility, and cost concerns, and the limited application of GMA and HINE may be due to lack of formal training on the tests. Despite these challenges, recent studies suggest that the GMA and HINE can be used in outpatient clinics with appropriate standardized training to detect CP as early as possible.18 Accurate early detection of CP is critical in aiding therapists to apply CP-specific, evidence-based interventions to advance infants development. Findings from this study suggest that infants are referred to EI based on subjective rather than objective assessment tools for early identifying of at risk for CP.

One of the positive findings of this study is that most of the therapists used child-initiated, activity-based, and task-oriented motor training. Despite the less intensive focus of research on the development of lower limb function for infants and toddlers with or at risk for CP, existing research suggests that early activation of lower limbs accelerates the attainment of walking and promotes walking quality and movement of the feet.19–21 Constraint Induced Movement Therapy and bimanual training results in positive early and later outcomes on the development of hand function in infants and toddlers with or at risk for CP;22,23 however, our study suggests infrequent use of CIMT or bimanual training for asymmetrical hand movement. Limited usage of the CIMT or bimanual training could be due to the insufficient use of sensitive measures to diagnose CP early or lack of knowledge for implementation.

Parental involvement and collaborative goal-setting influence the focus of intervention. Therapists identified parent goals as the most important priority in therapy planning, which is consistent with goal-oriented training that has been recommended for children with or at risk for CP.12 The COPM helps parents prioritize therapy goals and has been associated with enhanced infant motor outcomes and parent satisfaction.12,24,25 Our study indicated limited usage of tools such as COPM to guide parents in identifying appropriate therapy goals that might be the reason for parental dissatisfaction with goal-setting in EI reported in other studies.26 These findings were similar to the results of a study by Darrah and colleagues,27 who reported that objective indicators of functional goal setting were missing in many of the programs provided for children with CP.

Therapists identified parental education as one of the most important aspects of EI. Evidence from our data suggests that there is an insufficient implementation of parental coaching and education. Less than half of the therapists consistently encouraged parents to watch them modify and simplify tasks to maximize their infants' active involvement, explained the effect of sleeping and feeding issues on motor development, and advised the parents to provide their infants with variable practice. Establishment of regular sleeping and feeding routines and regular weight checking is recommended before the emergence of secondary behavioral problems or malnutrition and may enhance the infant-parent relationship and the child's function.2,28 Engaging in these types of activities improves collaboration and understanding between the therapist and the family, which is a key element to success as parents and therapists may have different perceptions of what elements of the intervention are most important.29 Discrepancies between the current practice and practices supported by the literature regarding parental involvement were also apparent in previous studies describing practices in EI in the United States.30,31

Home programs are considered a fundamental part of therapy. This study indicated that 25% of therapists do not continuously provide parents with home programs. Most of the therapists advised parents to implement home programs for 30 minutes or less a day, which is less than in the GAME intervention. There is variability in the reported amount of time spent on carrying out a home program to obtain a clinical difference ranging from 16 to 120 minutes per day for 5 to 7 days a week.12,32–34 In addition, the majority of therapists do not include written instructions with photographs, or provide parents with prognostic information. Parents of children with physical disabilities stated that written home programs enhance their adherence to the program.35 Novak36 indicated that parents of children with CP believed that providing them with written home programs and prognostic information promoted their engagement in their child's therapy. The variability of severity of CP in the first 2 years of life, the fact that few therapists use HINE to determine the severity of CP, and perhaps lack of knowledge of the CP prognosis gross motor development curves37 may interfere with the providers' ability to determine and discuss the prognosis of long-term motor outcomes with the family. Providers are encouraged to engage in a compassionate conversation with parents characterized by honest and jargon-free language to discuss the infant's current and long-term abilities.

More than half of the therapists stated that they do not always assess or incorporate strategies to maximize home enrichment, which is a primary component of the GAME intervention.12 This is consistent with the findings of Palisano and colleagues,17 who found that a small to moderate focus of PT and OT services provided for children 2 to 6 years old with CP is placed on environment modification. Our findings suggest a lack of a comprehensive application of some of the principles of family-centered care, and goal-oriented activity-based motor enrichment for infants with or at risk for CP.

Implications for Practice

To address possible gaps in the current practice, therapists are encouraged to follow the current recommended practices documented by systematic reviews2,10 to optimize the infants and toddlers with or at risk for CP's early motor development:

  • Use more sensitive, evidence-based standardized assessment tools in the early detection of CP in infants under the age of 1 year.2
  • Use the best available evidence to promote parent engagement in the therapy process including formal assessment tools for goal-setting and providing parents with written and illustrated home programs.12,32
  • Incorporate activities that facilitate activation of lower limb muscles using concentric and eccentric exercises such as sit-to-stand and step up and down activities, and when asymmetrical hand movement is present use modified CIMT and bimanual training.12,38
  • Use strategies to ensure environmental enrichment such as educating the parents about the appropriate use of toys, and advising parents to provide infants with variable practice.10,12
  • Provide parents with evidence-based information related to the importance of proper sleeping and feeding.12
  • Provide parents with prognostic information to help them develop realistic expectations.11,39

Recommendations for Research

Future studies with more detailed demographic information are needed. Research is recommended to determine possible factors that impede comprehensive parental education and environmental enrichment. The limited use of evidence-based assessment tools for early detection of CP should be investigated.

Limitations

The results of the study are limited, as are all self-report surveys, due to sampling bias, veracity of the responses, and the use of an author developed survey. The results are only generalizable to people with similar characteristics. This study provides only preliminary information. Because of difficulty in reaching EI therapists, this study used a nonprobability sampling method of respondent-driven sampling and may have contained some nonresponse bias. This sampling method might have introduced bias by recruiting participants who are APPT members and attended conferences.

CONCLUSION

Findings from this study demonstrate some similarities and discrepancies between the practices supported by the literature and the current practices provided by EI PTs and OTs for infants with or at risk for CP and their parents. This study suggests that therapists do provide a reasonable amount of therapy during the first 6 months of life, but do not consistently use recommended practices for early detection of CP, parental involvement, goal identification, home program planning, and environmental enrichment to advance the motor development of infants with or at risk for CP and maximize parental engagement in the infants' therapy as much as suggested in the literature.

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Keywords:

cerebral palsy; early intervention; occupational therapy; physical therapy

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