Clinical Data Collection

Participation involved parental completion of an initial survey that broadly screened for the presence of any clinical difficulties experienced by this population. Select elements of the Childhood Cancer Survivor Study (CCSS) initial long-term follow up survey, the Pediatric Symptoms Checklist (PSC), and the Beckwith Wiedemann Syndrome Questionnaire were utilized as they provided a comprehensive survey of questions to capture the scope of potential problems for this patient population. The CCSS questionnaire was developed to assess the physical, cognitive, and emotional health of childhood cancer survivors, and provides a comprehensive screening tool to a broad scope of physical, cognitive and emotional problems.[5] The Pediatric Symptoms Checklist (PSC) is a brief screening questionnaire used by pediatricians and other health professionals to identify psychosocial problems in children.[6] An abnormal score above the cutoff (24 for children age 3–5, 28 for children age 6–18) suggests the need for further evaluation by a qualified health professional. The Beckwith Wiedemann Syndrome (BWS) Questionnaire characterizes the cardinal features of BWS, and was administered to patients with BWS or Isolated Hemihyperplasia (IHH).[7] In subsequent visits, the CCSS Long-Term Follow up survey and the Pediatric Symptom Checklist were re-administered, not more frequently than once a year to identify the development of new issues. The patient’s clinical records were also reviewed at each visit to collect demographic information and medical history.