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

After pilot testing the proposed set of questionnaires, the protocol was finalized in June 2018. The selected questionnaires were translated as necessary into twelve languages. The first survivor was enrolled on October 18, 2018, and the last in October 2021. A total of 1117 survivors were enrolled. Two manuscripts have been drafted to date, one of which has been published.

Current status:

In the final analysis phase

Future plans

We intend to publish the study’s results in a series of articles over the next 12 months (see the planned publications section).

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.

Publications

Planned publications:

  • Reference Quality of Life data for Head and Neck Cancer Patients (this is based on pooled QoL data from collaborators)
  • A series of site-specific manuscripts are planned, with the first being for oropharynx cancer survivors. In this article, the QoL and the physician-rated toxicities will be reported. Additional articles will follow for oral cavity cancer survivors and larynx cancer survivors.
  • Two manuscripts covering the results of the oral health sub project (QoL results and results of clinical assessments) are underway.
  • One manuscript on the supportive care needs and medical services use of survivors is planned

 

Published:

  • Serious Long-term Effects of Head and Neck Cancer from the Survivors’ Point of View. Healthcare (Basel). 2023 Mar 21;11(6):906. doi: 10.3390/healthcare11060906.
Go to Top