Meeting the developmental needs of infants and toddlers with cancer

By Jessica Sparrow

Infants and toddlers with cancer require specialized treatment that includes a multidisciplinary team of care providers. In addition to medical providers coordinating lifesaving cancer treatments there are also numerous care providers committed to supporting the child and family as they navigate the complicated and often lengthy cancer care journey. In the U.S., approximately 15,780 children are diagnosed with cancer annually, with the incidence of childhood cancer greatest among infants. Because of their disease, the treatment they receive, and the potential for prolonged periods of hospitalization and illness, young children with cancer are at risk for experiencing numerous disease and treatment related side effects ranging from psychological, cognitive, to physical, to visual, and auditory deficits. These impairments and restrictions can result in delays in development including restrictions in the child’s ability to participate in play, social skills, fine and gross motor skills, and daily living skills. Unfortunately, these delays may persist even after the young child has completed treatment.

To support the developmental needs of infants and toddlers with cancer in 2015 psychologist and co-senior author Jen Harman, Ph.D. and her colleagues developed a hospital-based Early Childhood Clinic (ECC). The specialized clinic is modeled after state funded Early Intervention (EI) programing which is provided under Part C of the Individuals with Disabilities Education Improvement Act (2004) however, is uniquely integrated into the hospital environment so that even while infants and toddlers are receiving active cancer treatment their developmental needs can be supported. The ECC consists of a multidisciplinary team of professionals including representatives from psychology, neuropsychology, rehabilitation services (occupational therapy (OT), physical therapy, speech/language therapy, and audiology), clinical nutrition, social work, and child life. The team collaboratively works to identify children at risk for developmental delays as well as those with known delays in need of active support interventions. The ECC develops a family centered plan of care for each child who is referred to the clinic. This includes comprehensive assessment of the young child’s development and, if needed, recommendations for developmental intervention services at the hospital or at home once treatment has been completed. The ECC team also develops common treatment goals that all team members can collaboratively work towards with the child and family.

As part of the multidisciplinary ECC OT provides an evaluation of the child’s developmental strengths and needs related to occupational performance as well as identifies the families’ values, needs and occupational goals. When indicated, occupational therapy provides interventions to support development and enhance participation in activities and the occupations of childhood.

With this manuscript, co-senior authors Jen Harman, Ph.D., Lisa Jacola, Ph.D., and I set out to describe the access to OT for this population as well as to describe the characteristics of infants and toddlers who were referred for hospital-based OT services and continued services upon return home. We reviewed the medical records of children who were referred to the ECC over a three-year period. What we found was not surprising given what we know about the developmental needs of infants and toddlers with cancer and the purpose of the ECC.

We found that when infants and toddlers were referred to the ECC they almost always received an OT evaluation. 88.4% of patients who participated in an evaluation were then referred for OT intervention services while receiving cancer-directed therapy at the hospital and 42% of infants and toddlers referred for EI services in the home or community after cancer direct treatment had been completed. We also found that children with a brain tumor diagnosis and those who are younger at the time of diagnosis may have a heighted need for OT evaluation and/or intervention services.

We recommended that infants and toddlers with cancer be monitored for the need for EI support including OT services throughout their cancer care journey, particularly those undergoing treatment for brain tumors and those who are younger at the time of diagnosis.

For resources on early childhood development and cancer please see:

· Early Childhood Development - Together (stjude.org)

· Early Childhood Milestones During Cancer Treatment - Together (stjude.org)

· Early Childhood — Questions to Ask Your Care Team - Together (stjude.org)

For resources on the role of occupational therapy for children with cancer please see:

· https://together.stjude.org/en-us/care-support/rehabilitation/occupational-therapy.html

For more information on the Early Childhood Clinic please feel free to contact Jen Harman, Ph.D. at jennifer.harman@stjude.org

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Article Details
Occupational Therapy: An Essential Component of Support for Young Children With Cancer
Jessica Sparrow, Hannah Dagen, Allison Harris, Sarah Schwartzberg, Lucy Weathers, Megan Kibby, Jennifer L. Harman, Lisa M. Jacola
First Published August 4, 2022
DOI: 10.1177/15394492221115060
OTJR: Occupation, Participation and Health

About the Author:

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Jessica Sparrow OTD, OTR/L, BCP has been an occupational therapist at St. Jude Children’s Research Hospital for 15 years and has been in the lead therapist position there for 10 years. During this time a focus of her clinical services has been devoted almost exclusively to children with functional deficits and related limitations in occupational performance due to cancer and related treatment. She received her doctorate in occupational therapy from Washington University in St. Louis in 2007. She is a 2010 AOTA Emerging Leader and is AOTA Board Certified in Pediatrics. She has been the primary investigator and co-investigator on research protocols related to the rehabilitation of children with oncology related developmental delay, neurologic impairment, and vision loss. She has published and presented nationally and internationally on the topic of pediatric oncology.