Early intervention (EI) services are provided for children birth to 3 years of age with known, or at high risk for, developmental delays.1,2 It is housed under Part C of the Individuals with Disabilities Education Act (IDEA), which is regulated by the US Department of Education.2 The goal of EI is to ensure children are ready for preschool and kindergarten, as well as able to interact with their environment and participate in age-appropriate activities. Physical therapists (PTs) are part of the multidisciplinary team that evaluates children and also includes speech-language pathologists, occupational therapists (OTs), pediatricians, and psychologists. This team, along with valuable input from family members, determines an appropriate Individualized Family Service Plan, which guides further service and determines plan of care.1
It has been well established that early childhood adversity can lead to lifelong learning impairments and physical and mental health challenges if not addressed early and effectively.3–5 One relatively rare but devastating example of early adversity is a diagnosis of cancer. Despite the severity of the diagnosis, recent advances in treatment have greatly improved mortality. Over the last 40 years, survival rates for children diagnosed with cancer have significantly improved and, now, more than 80% of children are expected to survive.6 With increased survival, long-term side effects and impairments have become more apparent. Infants and toddlers (birth to 3 years of age) diagnosed with cancer are at a critical phase of development and are at greater risk for developmental delays due to this early adversity.3,4,7 Early intervention is uniquely suited to address these current and potential impairments and facilitate children and their families to achieve a lifetime of health and wellness to every extent possible.1,2,8
Treatment of childhood cancer may involve chemotherapy, radiation, surgery, antibody infusions, and bone marrow/stem cell transplant. These treatments may require lengthy hospital stays and frequent clinic visits and may cause side effects such as nausea, vomiting, fatigue, and malaise that negatively affect opportunities for environmental exploration and gross motor development.4 While physical therapy has long been an integral and well-recognized part of EI, children from birth to 3 years of age diagnosed with cancer are not being widely referred to EI services4 despite having the potential to greatly benefit from increased services and therapy involvement.7
Because children younger than 3 years are at risk for developmental delays while undergoing treatment of cancer,4 St. Jude Children's Research Hospital (SJCRH) developed an Early Childhood Clinic (ECC) in September 2016. The clinic hopes to ensure that children younger than 3 years receive psychology, rehabilitation, nutrition, school, social, and/or child life services if there is a need. The clinic particularly focuses on children diagnosed with leukemia or lymphoma since it was discovered that very few of these patients were referred to ancillary services at SJCRH. Upon admittance to SJCRH, any child who is younger than 3 years is referred to psychology for screening. Prior to developmental screening, the EI program for each patient's home state is contacted to determine which standardized global measure of development that patient's state uses to determine a child's eligibility for EI services. The majority of states contacted thus far either require or will accept evaluations conducted using the Battelle Developmental Inventory, Second Edition (BDI-2).9,10 As such, this standardized measure is used most often during psychology screening assessment appointments. Other standardized measures used on occasion, as permitted or required by individual states, include the Mullen Scales of Early Learning11 and the Bayley Scales of Infant and Toddler Development, Third Edition.12
On the basis of the results of the assessment, the psychologist makes a referral to other disciplines. If physical and occupational therapy services are needed on the basis of the results of the BDI-2, the PTs and OTs administer the Peabody Developmental Motor Scales, Second Edition (PDMS-2). The PDMS-2 is a standardized motor skills assessment used with children birth to 5 years of age. The PDMS-2 assesses both gross and fine motor skills, and the normative data sample includes 2003 children from 46 states.13 The gross motor section is grouped into 4 subtests: reflexes, stationary, locomotion, and object manipulation. The fine motor section has 2 subtests including grasping and visual-motor integration. The time required for testing varies from 45 to 60 minutes for the entire test or 20 to 30 minutes for either the gross motor or fine motor subtests.13 The PTs administer the gross motor section and the OTs administer the fine motor component at SJCRH. The PDMS-2 total score is a valid tool to assess motor skills development, and the gross motor subtest and fine motor subtests can be used individually as valid measures of gross and fine motor skills development as well.13
The PDMS-2 was chosen as the primary outcome measure because of its frequent use by PTs and OTs in the EI setting.14,15 By using assessments at SJCRH that are widely used across the country, the clinic hopes that children who require continued services at the end of treatment at SJCRH can transition to EI services in their home community quickly and possibly without requiring another evaluation. At the very least, the results of the PDMS-2 can be used as a baseline measurement of the child to track progress. Because each state's eligibility criteria are slightly different, it is important to check each state's specific standards and eligibility requirements.16 In Tennessee, for example, children with a specific diagnosis or children whose test results show that they have a 25% delay in 2 developmental areas or a 40% delay in 1 area may be eligible for Tennessee Early Intervention Services.17
If scores on the PDMS-2 correspond with Tennessee's requirements for EI, PTs initiate intervention with that child at SJCRH. Physical therapists set goals based on the areas of difficulty reflected on the PDMS-2. Per the General Rules Governing the Practice of Physical Therapy, goals are tested every month to measure the child's progress and/or modify the plan of care and/or the goals.18 Every 6 months, the PDMS-2 is administered again to document progress.
At SJCRH, the psychologists in the ECC have screened 107 patients to date. Eighty-eight of the 107 patients (82%) were referred to physical therapy. Sixty-three were male and 44 were female. The youngest child was 3 months and the oldest was 46 months with a mean age of 21 months. Approximately 44% of the referrals were from leukemia/lymphoma clinic, 2% from bone marrow transplant clinic, 28% from solid tumor clinic, 28% from neuro-oncology clinic, and 1% from hematology clinic.
Because 82% of patients who received a developmental screen are then referred to physical therapy, it appears beneficial to screen children younger than 3 years who have been diagnosed with a malignancy. Early intervention may prevent or lessen developmental delays that can result from many risk factors including, but not limited to, diagnosis, prolonged hospitalizations, steroids, chemotherapy, and/or radiation and promote achievement of gross motor milestones. The ECC at SJCRH is a program dedicated to improving quality of life for children and their families through hospital-based EI for chronically ill children. The goal of the ECC is for physical therapy intervention to be seamlessly linked to community providers upon discharge. Providers working in EI and/or hospital settings with pediatric oncology programs are important advocates for patients to receive services at critical periods of development to maximize function and decrease long-term effects of early childhood adversity. The ECC developed at SJCRH may be a model of care for pediatric oncology settings to encourage the development of age-appropriate gross motor skills while providing families with resources in home communities to further this development.
3. Shonkoff J, Garner A. The lifelong effects of early childhood adversity and toxic stress. Pediatrics
. 2011;129(1):e232–e246. doi:10.1542/peds.2011-2663.
4. Harman JL, Wise J, Willard VW. Early intervention
for infants and toddlers: applications for pediatric oncology [published online ahead of print December 22, 2017]. Pediatr Blood Cancer
5. Institute of Medicine and National Research Council. From Neurons to Neighborhoods: An Update: Workshop Summary. Washington, DC: The National Academies Press; 2012.
6. Ward E, DeSantis C, Robbins A, Kohler B, Jemal A. Childhood and adolescent cancer
statistics, 2014. CA Cancer
J Clin. 2014;64(2):83–103. doi:10.3322/caac.21219.
7. Bornstein MH, Scrimin S, Putnick DL, et al Neurodevelopmental functioning in very young children undergoing treatment for non-CNS cancers. J Pediatr Psychol. 2012;37(6):660–673.
8. Division for Early Childhood. Promoting the Health, Safety And Well-Being of Young Children With Disabilities and Developmental Delays. Missoula, MT: Division for Early Childhood; 2012.
9. Newborg J. Battelle Developmental Inventory. 2nd ed. Rolling Meadows, IL: Riverside; 2005.
10. Elbaum B, Gattamorta KA, Penfield RD. Evaluation of the Battelle Developmental Inventory, 2nd Edition, Screening Test for use in states' child outcomes measurement systems under the Individuals with Disabilities Education Act. J Early Int. 2010;32:255–273.
11. Mullen EM. Mullen Scales of Early Learning. Circle Pines, MN: American Guidance Service Inc; 1995.
12. Bayley N. Bayley Scales of Infant and Toddler Development. 3rd ed. San Antonio, TX: Harcourt Assessment Inc; 2006.
13. Folio MR, Fewell RR. Peabody Developmental Motor Scales: Examiner's Manual. 2nd ed. Austin, TX: Pro-ED; 2000.
14. Tieman BL, Palisano RJ, Sutlive AC. Assessment of motor development and function in preschool children. Ment Retard Dev Disabil Res Rev. 2005;11:189–196.
15. Palisano RJ, Kolobe TH, Haley SM, Lowes LP, Jones SL. Validity of the Peabody Developmental Gross Motor Scale as an evaluative measure of infants receiving physical therapy
. Phys Ther. 1995;75(11):939–951.