Pediatric Oncology Professionals’ Perceptions of Information Needs of Adolescent Patients With Cancer

Abstract

In contrast to the extensive research on the information needs of older patients with cancer, the question of what information is most relevant for adolescents seems to have been addressed in only one published study. The aim of the present study was to update and extend the sole previous survey of oncology professionals’ views about the information needs of adolescent patients. This was achieved by including professionals other than physicians, by structuring the questionnaire to show whether perceived information needs were different for the time of diagnosis versus during treatment, and by differentiating between the 6 cancer diagnoses most commonly affecting adolescents. Fifteen hundred surveys were distributed to pediatric cancer professionals, and 556 valid returns were analyzed. The main finding was that information was considered more important to provide during treatment than at the time of diagnosis. Also, medical information topics were generally considered more essential than psychological topics. The magnitude of this difference was influenced to a small extent by professional discipline, gender, age and experience of respondent, and whether the information was being given at diagnosis or during treatment. It is notable that whereas respondents generally were confident in their ability to communicate information, physicians rated themselves as better communicators at the time of diagnosis than during treatment.