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Adolescents’ understanding of chemotherapy-related adverse events: a concept elicitation study* * This article refers to the call “Adolescent health and the role of nurses”. Edited by Universidade de São Paulo, Escola de Enfermagem de Ribeirão Preto, PAHO/WHO Collaborating Centre for Nursing Research Development, Ribeirão Preto, SP, Brazil. Publication of this supplement was supported by the Pan American Health Organization (PAHO/WHO). Articles have undergone the journal’s standard peer-review process for supplements. The views expressed in this supplement are those of the authors alone and do not represent the views of PAHO/WHO. Paper extracted from doctoral dissertation “The perspective of the pediatric oncology patient in the reporting of symptoms and adverse effects of chemotherapy: predictive model test and concept elicitation study.”, presented to Universidade de São Paulo, Escola de Enfermagem de Ribeirão Preto, PAHO/WHO Collaborating Centre for Nursing Research Development, Ribeirão Preto, SP, Brazil. Supported by Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq), Grant # GM/GD 140134/2017-4, Brazil.

Abstract

Objective:

to document adolescents’ understanding of chemotherapy-related core adverse events from the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events and thus begin the validation process of this tool’s items with Brazilian adolescents.

Method:

this is a prospective, qualitative study of concept elicitation. The participants were 17 adolescents aged 13-18 years and undergoing chemotherapy in three hospitals in São Paulo - SP, Brazil. Cognitive interviews were conducted with questions based on chemotherapy-related adverse events. Data were analyzed for responsiveness and missingness.

Results:

adolescents could and were willing to provide descriptive information about their chemotherapy adverse events, including physical and emotional events. Some participants suggested alternative terms to name the adverse events and some used more complex terms, but most were satisfied with the primary terms used by the researchers.

Conclusion:

this study represents the first steps towards understanding how adolescent cancer patients identify, name, and describe these events by cognitive interviewing to help design future assessment instruments focused on this age group.

Descriptors:
Neoplasms; Symptom Assessment; Antineoplastics Agents; Drug-Related Side Effects and Adverse Reactions; Adolescent; Oncology Nursing

Highlights:

(1) Adolescents’ voice is a priority in reporting chemotherapy-related adverse events. (2) Adverse events (AEs) inquiry may best be initiated with open-ended questions. (3) Elicitation studies can include the voices of the target population. (4) Adolescents with cancer can self-report clinically relevant chemotherapy AEs.

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E-mail: rlae@eerp.usp.br