Objective: Understand the perspectives of children who survived acute lymphoblastic leukemia (ALL) and their parents to adapt a guideline-based, family-based, intensive health behavior and lifestyle intervention treatment for this population. Method: Nine children 8-17 years of age (Mdn = 12 years [interquartile range, 10-16], median years off treatment = 5 [2-7]) who survived ALL and 11 parents participated in focus groups to assess perceptions of weight, weight-related behaviors, and perceived barriers to family-based behavioral weight loss treatment (FBT). Responses were analyzed thematically, and resultant adaptations were guided by the Framework for Reporting Adaptations and Modifications-Enhanced. Results: Topics and themes identified included mental and physical health concerns (e.g., treatment-related medical complications, body esteem), a perception of excess weight as protective, the continuing influence of eating habits established during cancer treatment (e.g., instrumental feeding practices, snacking), and potential barriers to activity (i.e., physical limitations, lack of sport experience). Resultant adaptations to FBT were contextual (e.g., virtual delivery) and related to the content, including an emphasis on weight management in the context of survivorship; education about late effects, overweight and obesity; increased emphasis on structured eating patterns and instrumental eating; provider recommended physical activity; and tailored emotion-focused and body esteem content. Conclusions: Focus groups for children who survived pediatric ALL provided insights that aided the adaptation of FBT for this population. A pilot trial of FBT for children who survived ALL and their parents is underway to evaluate acceptability, feasibility, and preliminary efficacy.
Implications for Impact StatementThis study elicited perspectives of children who survived acute lymphoblastic leukemia and their parents to inform the adaptation of an intensive health behavior and lifestyle treatment for this population. The adaptation, which is delivered entirely virtually and includes an increased emphasis on emotion-focused content and structured and instrumental eating patterns, may offer a promising approach to decrease the risk for chronic, treatment-related medical complications within this population.