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

Acknowledgments

This study is funded by the Australian Government Department of Health, the Australian Youth Cancer Services and CanTeen Australia. CW is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1067501) and an Early Career Development Fellowship from the Cancer Institute of NSW (ID: 11/ECF/3-43).

PP is the Research and Youth Cancer Services General Manager at CanTeen, the Australian organization for young people living with cancer. She is also an Associate Professor in the School of Nursing at The University of Sydney. PP is a practicing psychologist with experience and expertise working with young people.

FM is the Research Manager at CanTeen and Adjunct Lecturer in the School of Nursing at The University of Sydney. She has considerable expertise working in the field of young people impacted by cancer.

AA is the Lead Clinician for Youth Cancer Services in NSW and ACT and the Director of the Sydney Youth Cancer Service.

DC is a Research Officer at the Psycho-oncology Co-operative Research Group at The University of Sydney, where he works primarily as a statistician and psychometrician.

CW leads the Behavioural Sciences Unit at the Kids Cancer Centre, Sydney Children’s Hospital. The Behavioural Sciences Unit is proudly supported by the Kids with Cancer Foundation. She is also a Senior Lecturer in the discipline of pediatrics, School of Women’s and Children’s Health, University of NSW. She is a registered psychologist and has conducted research with families affected by cancer for over a decade.

KW is the Cancer Institute of NSW Chair of Cancer Nursing and Director of the Cancer Nursing Research Unit, The University of Sydney.

KT is the Program Director of the ONTrac at Peter Mac Victorian Adolescent and Young Adult Cancer Service and the Service Manager of the Victorian/Tasmanian Youth Cancer Service.

MO is a hematologist/pediatric, adolescent, and young adult oncologist working at the Women’s and Children’s Hospital (North Adelaide) and Royal Adelaide Hospital. He is the Lead Clinician of the South Australia/Northern Territory Youth Cancer Service.

Author contributions

All authors contributed to the conception and design of the study, the drafting and revising of the study protocol, the approval of the final manuscript, and are accountable for all aspects of the protocol.

Disclosure

The authors report no conflicts of interest in this work.