Analysis of preferences and responses to recall in adolescent and young adult head and neck cancer survivors treated with radiotherapy.

Abstract

Purpose: Adolescents and young adult survivors of head and neck cancers are at risk of long-term complications stemming from their diagnosis and treatment. A cross-sectional study was performed on recalled survivors with the objective of reviewing their response to recall and preferences for ongoing care, to determine health service use before recall, and to describe knowledge and information seeking.

Methods: Survivors of head and neck cancer diagnosed between the ages 15-39 during the period 1970-2010 and treated with radiotherapy were invited to the survey. Participants were asked to describe their emotions upon being recontacted, including preferences and perceptions of their care.

Results: Of the 36 participants, 77% were diagnosed after the age of 30, and 89% diagnosed after 1990. Upon being recontacted, 58% reported feeling happy and 52% feeling surprised. More than three-quarters of participants experienced no anger, fear, worry, or confusion. A total of 71% perceived the adult cancer organization was most responsible for providing updates on health risks post-treatment for their cancer. The most common primary health provider was their regular family doctor at 82%. Regarding control/management of health problems, 46% stated they felt very confident, while 49% stated they were somewhat confident.

Conclusions: Patients generally responded positively upon being recalled, with the environment of recall providing a good opportunity for both patient and practitioner to gather information to make informed decisions regarding future care.