Adolescents and young adults with cancer: Surfing the web to know and manage their disease

Abstract

Background: The internet has acquired a fundamental role nowadays, also in the medical field, for example to obtain information about disease or take part in forums/chats to share experience. This study describes how a group of adolescent and young adult [AYA) patients with cancer used the web to find information, confirmation of what they have been told by doctors and parents, and find support. Methods: A questionnaire was developed to investigate: the perceptions of the type of support received from healthcare professionals or in the social environment, the use made of internet, and what motivated them (information, support, sharing), the perceived outcomes of internet searches (reliability, consistency, and usefulness). The questionnaire was administered online between September and November 2021 to patients>15 years who were receiving treatments at our Pediatric Oncology Unit, and to patients who had completed treatments no more than two years previously. Results: The questionnaire was proposed to 42 patients and answered by 41 of them (age 14–29 years, median 19). Respondents identified doctors/nurses and family members as their primary sources of information and support. Internet was used by our patients mainly for entertainment and socializing, and only to a much smaller degree to find information about their disease. Information was considered reliable and useful in a minority of cases. Conclusions: In our specific setting, AYA patients did not see the web as being crucial to understanding and coping with their disease. It is nonetheless important for healthcare professionals to consider the increasing role of internet.

Keywords

• Adolescent and young adult
• AYA
• Internet
• Web
• Information
• Support