EVEREST-HN-1
Research type
Research Study
Full title
EVolution of a patiEnt-REported symptom-based risk stratification sySTem to redesign the suspected Head and Neck cancer referral pathway SYmptom iNput Clinical (SYNC) system development phase-1
IRAS ID
314496
Contact name
Vinidh Paleri
Contact email
Sponsor organisation
The Royal Marsden Hospital NHS Trust
Duration of Study in the UK
5 years, 11 months, 31 days
Research summary
Patients presenting to their general practitioners with symptoms of suspected HNC may be referred to secondary care via a dedicated referral pathway for a consultation with a HNC specialist. In 2019/20, 228,482 patients were referred with suspected HNC in England: an increase from 140 to 404 patients per 100,000 population between 2009/10 and 2019/20. Currently, standard practice is to see all referrals face-to-face as the first contact. However, partly due to capacity issues, one in ten suspected HNC referrals are not seen within the two-week target and the period waiting to be seen leads to significant patient anxiety.
The overall aim of the EVEREST programme is to develop and evaluate a patient-reported symptom-based risk stratification system for suspected HNC (sHNC) referrals which is safe, improves the patient experience, leads to faster diagnosis and optimises healthcare resource use, compared to the current system. EVEREST builds on successful work carried out to stratify sHNC referrals during COVID-19 and aims to address the increasing referrals for sHNC in the UK
In this study, our aim is to understand the current diagnostic pathway for suspected HNC - to inform the development of the EVEREST interventions. In particular we want to find out what people (clinicians and patients) particularly value about the current pathway, and what they would ideally like to change. We also want to identify the language used by patients and clinicians to describe HNC symptoms, so that we can use the clearest and most helpful language for the patient-facing parts of the EVEREST SYNC platform. To do this we want to observe sHNC consultations and to interview patients and clinicians.Lay summary of study results: When someone is referred for possible head and neck cancer, their GP or dentist sends information to the hospital. But this information is often incomplete, so hospital doctors must ask many questions during the first visit.
The EVEREST-HN programme is testing whether patients can answer these questions before coming to hospital. This could help doctors find and treat cancer sooner, or reassure patients more quickly if it’s not cancer. That’s important because head and neck cancers can get worse fast.We created this study to design a questionnaire that helps patients report their symptoms. We wanted to learn what words patients use, what doctors ask, and how to make the questionnaire clear and helpful. We also asked patients and doctors what they like or don’t like about the current system, so we can make improvements that work for everyone.
We listened to recordings of hospital appointments and made a list of the words patients used to describe their symptoms, and the questions doctors asked. This helped the team designing the questionnaire.Some symptoms were easy to talk about, for example, asking “Is it painful when you swallow?” was clear and simple. But others, like neck lumps, needed more back-and-forth. Doctors often had to ask follow-up questions like, “Have you actually felt a lump with your fingers?”
Some questions were awkward for doctors to ask, and humour was sometimes used to make things easier. One patient, when asked about alcohol, joked, “Go on, put 10 Bacardi’s to be a devil!”
A system that uses patient-reported symptoms needs to communicate clearly and support patients emotionally. This study shows how important language is in healthcare. The results helped create a questionnaire for patients and a way to share their answers with hospital doctors. These will be tested in the next stage of the EVEREST-HN programme.
We will disseminate to patients and public via public engagement meetings, publication of the study summary on the EVEREST-HN webpage (https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.royalmarsden.nhs.uk%2Feverest-hn&data=05%7C02%7Cliverpoolcentral.rec%40hra.nhs.uk%7C67049e395db74dd0ef9908ddf13b37a0%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638931958865751159%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=Dxm82d19f4v9fhaJ52ZQ4kaDMUZcoHUljEup971jRLs%3D&reserved=0), and engage with patient-facing groups.
REC name
North West - Liverpool Central Research Ethics Committee
REC reference
22/NW/0327
Date of REC Opinion
19 Oct 2022
REC opinion
Further Information Favourable Opinion