Abstract
ObjectiveThe aim of this study was to provide insight into survivor-reported negative and positive consequences of cancer during adolescence 10 years after diagnosis and compare these with consequences reported 3 and 4 years after diagnosis.MethodsThree, 4, and 10 years after diagnosis, survivors of adolescent cancer were interviewed about negative and positive consequences due to their cancer experience. Manifest content analysis was used to identify categories of reported consequences. Categories of consequences 10 years after diagnosis were compared with consequences reported 3 and 4 years after diagnosis.ResultsSeven categories of negative consequences were identified: bodily concerns, existential thoughts about loss and life (new at 10 years), psychological problems, difficulties interacting with others, health worries (new), fertility concerns (new), and frustrations about health care (new); and six categories of positive consequences: positive view of life, positive view of self, compassion for others (new), close relationships, gained knowledge about disease and health care, and financial gains. Consistent with previous time points, bodily concerns were reported most often. The majority of survivors (n = 22) reported both negative and positive consequences of their former disease. Few reported only negative (n = 2) or only positive consequences (n = 4).ConclusionsTen years after diagnosis, most survivors reported both negative and positive consequences. New themes, relevant to young adulthood and long-term survival, were identified. Health care professionals treating young adult survivors may anticipate and address problems regarding physical health, fertility, and health care but may also reinforce positive affect by addressing survivors' positive views of life, sense of self, and close relationships.
Highlights
Adolescence is a crucial phase in life involving physical as well as emotional change and maturation
The content of all categories is described in the succeeding text and illustrated by examples. This category is characterized by physical late effects and limitations as well as appearance concerns
We present survivor-reported negative and positive consequences of cancer during adolescence, 10 years after diagnosis
Summary
Adolescence is a crucial phase in life involving physical as well as emotional change and maturation. Differences between healthy peers and survivors concerning, for example, well-being or quality of life (using quantitative instruments) were found. Quinn and colleagues [4] pointed out that generic health-related quality of life instruments miss several aspects that are relevant for the lives of young adults who have survived cancer during childhood or adolescence. They identified three topics that survivors missed in generic questionnaires: sense of self, relationships, and parenthood. An interview-based approach enables researchers to pinpoint aspects that are important to young adults who have survived a disease such as cancer by giving them the freedom to address aspects relevant to them and omit irrelevant issues
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