Validation of the distress thermometer for use among adolescents and young adults with cancer in Australia: a multicenter study protocol

Abstract

Background: Adolescents and young adults (AYAs) diagnosed with cancer commonly experience elevated levels of distress. Routinely administered distress screening tools can be effective in identifying individuals in need of referral to psychosocial services. The distress thermometer and problem checklist are widely used screening tools that have been validated among some cancer populations, but which have not to date been validated for use among AYAs with cancer. The primary aim of this study is to validate the distress thermometer and a modified problem checklist for use with AYA cancer patients, aged 15–25 years. Specifically, we aim to 1) determine appropriate cutoffs for clinical referral on the distress thermometer; 2) investigate the content validity of the modified problem checklist; and 3) assess the clinical utility of the tool from the perspectives of both patients and health care professionals. The secondary aims of the study are to 4) establish prevalence and predictors of distress in AYA cancer patients and 5) examine the number and character (including uptake) of post-screening referrals made to psychosocial services. Methods: This project is a two-phase, multicenter study to be conducted across all Australian states and territories. At time 1, patients who are either newly diagnosed with cancer and on-treatment (ie, within 4 weeks of diagnosis) or in early survivorship (ie, within 12 weeks of completing treatment) will complete a survey assessing levels of distress as judged by three instruments: the distress thermometer, the Hospital Anxiety and Distress Scale, and the Kessler-10. Patients and administering health care professionals will also complete clinical utility and satisfaction measures in relation to the distress measures. Results will be used to address the primary aims as listed in the background as well as to identify variables associated with distress. At time 2, telephone interviews will be conducted to assess service responsiveness and patient satisfaction. Discussion: This study will provide important validation and clinical utility information for screening for distress among AYA cancer patients and survivors. Additionally, it will generate greater understanding of the prevalence and predictors of distress among this population. Keywords: distress thermometer, validation, cancer, AYA, clinical utility