Patients with head and neck cancer say they have a range of unmet needs from pre-diagnosis through the post-treatment period, researchers reported at the 2011 European Multidisciplinary Cancer Congress (EMCC).

The new results are from an update of the About Face survey, which targeted patients who had a diagnosis of locally advanced squamous cell carcinoma of the head and neck for at least 12 months.

The survey, which was conducted by the European Head and Neck Society, revealed that most unmet needs centered on the provision of improved education, awareness, and support.

The 104 survey respondents were from Belgium, France, Italy, Portugal, Spain, and Sweden. Most were men ranging from 50 to 70 years of age.

Professor Jean-Louis Lefebvre, EHNS President and principal investigator of the “About Face 2” survey and Professor of Otolaryngology, Head and Neck Surgery at the University of Lille in Lille, France, said:

“Raising awareness is important to ensure that patients do not present at a late stage when more radical treatment may be necessary and their prognosis is less favorable.”

Head and neck cancer is more common in people aged 40 and over, and men are two to three times more likely to develop head and neck cancer although the disease is becoming increasingly common in women.

Globally, cancers of the oral cavity, pharynx, and larynx account for almost 5% of all can malignancies, with more than 600,000 new cases and more than 350,000 related deaths documented in 2008. The majority of head and neck cancers occur in the oral cavity (42%), pharynx (35%), and larynx (24%).

At present, most cases are diagnosed when the disease is at a late stage, and more than half of patients will relapse following treatment of their primary tumor. For patients with recurrent and/or metastatic disease treated with chemotherapy alone, the median survival is six to nine months.

In Europe alone, roughly 132,300 new cases of head and neck cancer were diagnosed in 2008, with over 62,800 deaths due to the disease.

In the present survey, patients cited five major areas of unmet need:

  • improved education on head and neck to allow for earlier diagnosis
  • simplified information about the disease and treatment options
  • help in adopting a positive attitude to deal with the disease
  • guidance to consider the best available treatment strategy for the individual patient
  • improved support and counseling from a variety of resources to help patients cope with the disease burden

The initial About Face survey, conducted in 2009, showed “worryingly” low levels of awareness about head and neck cancer, its risk factors, and some of it symptoms. For example, awareness of the term head and neck cancer was found to be low, with 75% of respondents stating they were not familiar with the term. In addition, nearly three-quarters of individuals surveyed said they were not aware of the frequency of the disease in Europe. In fact, about 20% thought that head and neck cancer affects fewer than 1,000 people in Europe, which is actually one hundred times less than the correct figure.

Written by Jill Stein
Jill Stein is a Paris-based freelance medical writer.