Head and Neck Cancer Survivors

Principal investigator(s)
Susanne Singer
University of Mainz
Mainz, Germany
, Grégoire Vincent
Brussels, Belgium
Project coordinator(s)
Kathy Taylor
Mainz, Germany

Project summary

This project invites survivors of head and neck cancer (5 years or more post-diagnosis) to undergo a clinical examination for toxicities and fill out questionnaires related to quality of life (QoL), use of medical services, supportive care needs, and ability to work. The main research questions are:

Which aspects of QoL are reduced or improved in the long-term, compared to reference data from head and neck cancer patients pre-treatment and 1 year after treatment and compared to the age- and sex-matched general population?
Do long-term problems with swallowing, speech, senses, dry mouth, sticky saliva, coughing, and toxicities differ among survivors depending on the treatment they received?

How long-term survivors fare in terms of supportive care needs, ability to work, and their use of health care services and the related costs will also be examined.

Achievements

The protocol was finalized in June 2018, and the questionnaires have been translated as necessary into nine languages. The first survivor was enrolled on October 18, 2018.

After pilot testing the proposed set of questionnaires to ensure study participants would not balk at the number of questions, the protocol was finalized in June 2018. The selected questionnaires have been translated as necessary into twelve languages. The first survivor was enrolled on October 18, 2018. A total of 736 survivors have been enrolled as of April 1, 2021.

Future plans

Due to COVID-19-related delays, survivor enrolment has been extended again to fall 2021, at which time we aim to have 1200 survivors enrolled.

For patients

We are looking at the types of problems people who have survived more than 5 years after a head/neck cancer diagnosis have that are related to their disease or treatment. These problems are divided into: a medical perspective, for example, trouble swallowing, pain, and trouble with nerves or dental health; and a quality of life perspective, such as problems being in social situations, feeling tired or depressed, being able to pursue leisure activities and accessing any necessary support services. A comparison will be made to head/neck cancer patients pre-treatment and 1 year after diagnosis and to a representative selection of the general population.