Participation in an occupational therapy referral program for children with retinoblastoma

Article type: Research Article

Authors: Sparrow, Jessica^{a; *} | Brennan, Rachel^b | Mao, Shenghua^c | Ness, Kirsten K.^d | Rodriguez-Galindo, Carlos^{e; f} | Wilson, Matthew^{g; h} | Qaddoumi, Ibrahim^b

Affiliations: [a] Rehabilitation Services, St. Jude Children's Research Hospital, Memphis, TN, USA | [b] Department of Oncology, St. Jude Children's Research Hospital, Memphis, TN, USA | [c] Department of Biostatistics, St. Jude Children's Research Hospital, Memphis, TN, USA | [d] Department of Epidemiology & Cancer Control, St. Jude Children's Research Hospital, Memphis, TN, USA | [e] Department of Pediatric Oncology, Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, MA, USA | [f] Department of Pediatrics, Harvard Medical School, Boston, MA, USA | [g] Department of Surgery, St. Jude Children's Research Hospital, Memphis, TN, USA | [h] Department of Ophthalmology, Hamilton Eye Institute, University of Tennessee Health Science Center, Memphis, TN, USA

Correspondence: [*] Corresponding author: Jessica Sparrow, Department of Rehabilitation Services, MS 113, St. Jude Children's Research Hospital, 262 Danny Thomas Place, Memphis, TN 38105, USA. Tel.: +1 901 595 4319; Fax: +1 901 595 2961; E-mail:[email protected]

Abstract: PURPOSE: Because retinoblastoma typically arises at a very young age, children are particularly vulnerable to vision impairment, associated developmental delays, and functional limitations. Limited information is available describing developmental delay and functional limitations in this population, necessitating supportive services including rehabilitation. The aims of this study were to describe the participation of children with newly diagnosed retinoblastoma in an occupational therapy program that identifies children in need of rehabilitation services. We also identify indications for referral to rehabilitation services among children with newly diagnosed retinoblastoma and enumerate the likelihood of these children receiving the recommended services. METHODS: Twenty-two children participated in longitudinal occupational therapy assessments during the first year after diagnosis. RESULTS: We recommended 1 or more types of rehabilitation services for 16 of 22 (72.7%) participants. Twelve of 16 (75%) received services. CONCLUSIONS: The results of this pilot study indicate that implementing a prospective occupational therapy-screening program is feasible and results in identification and initiation of therapy services in some children with retinoblastoma. Developmental screenings and follow-up of children with retinoblastoma is strongly recommended.

Keywords: Retinoblastoma, pediatric rehabilitation, occupational therapy, speech therapy, physical therapy

DOI: 10.3233/PRM-160372

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 9, no. 2, pp. 117-124, 2016