Researchers from The Royal Marsden NHS Foundation Trust have launched the EVEREST-HN study which is aimed at re-designing the referral pathway for suspected head and neck cancer in the NHS.
The study – which is being supported by the National Institute for Health and Care Research (NIHR) and the International Centre for Recurrent Head and Neck Cancer (IReC) via funding from The Royal Marsden Cancer Charity – will be the largest randomised trial for this disease ever. Over 100,000 patients from 52 centres across the UK who have been referred with suspected head and neck cancer will be recruited and asked to complete an electronic questionnaire about their symptoms.
This data will then be fed into a ‘calculator’ to assess the patient’s individual risk of cancer and then be shared with hospital cancer specialists. This will ensure clinicians have individualised information much earlier in the patient pathway to aid decision making about ongoing investigations and management.
The new system will be co-designed with patients, clinicians and several national stakeholder groups, and will include researchers from seven academic centres across the UK.
In England, over 200,000 patients are referred with suspected head and neck cancer each year, making it the fifth largest group of suspected cancer referrals seen by hospitals. The vast majority (95%) of patients with these symptoms will be found to be cancer-free, but about 5% will be diagnosed with cancer, totalling over 12,000 cases a year in the UK.
Around one third of patients referred with suspected head and neck cancer will undergo some form of investigation, but the information in the referral letter from the GP is often not enough to decide who may need an investigation, or which type of investigation they may need.
Researchers hope the trial will eventually speed up diagnosis of head and neck cancer and reduce anxiety for the thousands of people each year who are referred then found not to have cancer. If successful, the new system could ensure high-risk patients have targeted investigations arranged much earlier following referral from their GP, allowing treatment to start significantly sooner if they have cancer, which may improve their outcomes. Lower-risk patients may also be able to avoid unnecessary tests and appointments and may be reassured earlier that they are unlikely to have cancer.
Head and neck cancer is an umbrella term for cancers of the nose, mouth, throat, voice box, thyroid and salivary glands. Common symptoms of the disease include hoarse voice, throat discomfort, neck lumps, mouth ulcers and difficulty swallowing.
Study lead Professor Vinidh Paleri, Consultant Head and Neck Surgeon at The Royal Marden NHS Foundation Trust, said: “Right now, when a patient with suspected head and neck cancer is referred to me, I have only limited information to make further decisions about their care until I meet them face to face. Through this study, we hope to develop a new system to provide specialists with a much more complete picture of each patient’s story before they are seen in clinic. This could speed up the diagnosis for some, and ease anxiety for others who do not have the disease.
“Over the next seven years, we will develop this technology and test ways patients can tell us about their symptoms, through their mobile device, using online forms or even personalised automated phone calls. We hope to transform the NHS head and neck cancer pathway and, if we find this system does improve outcomes for this patient group, it could be replicated across other tumour types too, potentially saving many lives.”
Interior designer Ken Mann, 30 from West London, was referred to The Royal Marsden in September 2022 by his GP after experiencing head and neck cancer symptoms. During the wait to be seen by a specialist – who fortunately found that he didn’t have cancer after surgery and a biopsy – Ken experienced significant anxiety. He said: “Around August 2022 I noticed a lump underneath my tongue, which was white and spotty. When I ate certain things, the area became inflamed, and I also experienced swelling and pain around my jaw. Concerned it could be something serious, I made an appointment with my GP who said, in a worst-case scenario, it could be cancer.
“Although I was seen at the hospital within two weeks and my results soon followed, it felt like a very long time. The thought I could have cancer played on my mind every five to 10 minutes and I found it hard to concentrate at work. It definitely affected my mental health.
“It turned out I had a salivary gland blockage which was a big relief. I think anything that could have eased the pressure during that time would have really helped, including additional support or communications from the specialist.”
IReC is the world’s first centre for recurrent head and neck cancer and was launched at The Royal Marsden last year to accelerate research and improve patient outcomes. IReC has been made possible thanks to founding donors Charles Wilson and Dr Rowena Olegario, and Keith and Isabelle McDermott’s generous support of The Royal Marsden Cancer Charity.
