Playing Russian Roulette: Parent and Adolescent Perspectives on Tumor Surveillance for Adolescents with Cancer Predisposition Syndromes

Abstract

Abstract Purpose: Cancer predisposition syndrome (CPS) surveillance allows for the early detection and treatment of neoplasms; however, the psychosocial impact of tumor surveillance is poorly understood for cancer-affected adolescents with CPS and their parents. To gain further insight, we qualitatively characterized the affective and cognitive experience of adolescents undergoing tumor surveillance. Experimental Design: Adolescents with a history of cancer and their parents independently completed semistructured interviews querying their experience with the adolescent’s tumor surveillance. Interviews were coded using emotion coding and content analysis before developing themes using thematic analysis. Results: Eight adolescents and 11 parents (seven mothers, four fathers) completed interviews. Parent themes included maternal anxiety, relief following surveillance, fathers’ positive expectations and emotions surrounding surveillance results, coping strategies, and perception of going through surveillance together with their child. Adolescent themes included normalization of surveillance, indifference about surveillance but excitement to return to the hospital, focus on physical and logistic aspects, relief focused on being done with scans, and belief that outcomes would be good. Past scans/surveillance experiences influencing surveillance feelings were a theme across both parents and adolescents. Conclusions: Our findings suggest that tumor surveillance is not causing marked emotional distress for cancer-affected adolescents with CPS. In contrast, mothers of cancer-affected adolescents undergoing surveillance may present with anxiety leading up to tumor surveillance and, for a subset, in between surveillance appointments. These observations highlight a need for ongoing psychosocial screening for families of children with CPS and a role for psychosocial providers in the multidisciplinary management of CPS.