Development and Content Validation of End of Treatment Questionnaires for Children With Cancer

Purpose: To describe the development and content validation of measures to assess the psychoeducational needs of children, adolescents/young adults (AYAs), and their parents at the end of successful treatment for cancer. Method: Professional experts, which included pediatric oncology nurses and advanced practice registered nurses, conducted a systematic review of the literature to determine specific end of treatment (EOT) needs of children and AYAs with cancer and their parents and evaluate available tools to measure these needs. From this review, two EOT questionnaires were initially developed. Oncology Family Advisory Board (FAB) members served as experiential experts in refining and validating these questionnaires. FAB members participated in a content validation process, rating questionnaires online, and subsequently participating in a focus group to establish content validity (n = 6). Results: Three EOT questionnaires were ultimately developed. The Child/AYA questionnaire was divided into two separate measures for developmental and literacy considerations. The Parent/Caregiver and the AYA questionnaires each contain 38 items with a content validity index score of 100%. The Child questionnaire contains 37 items with a content validity index score of 100%. Conclusion: Content validity was established for three EOT questionnaires, each of which has the potential to elicit information regarding needs and potential gaps in services perceived by childhood cancer survivors and their parents. Further psychometric testing is needed to determine stability (test-retest reliability) and construct validity of the questionnaires.