Our Research

Background: The NIHR funded EVEREST-HN research programme aims to improve the way that the NHS assesses more than 200,000 people per year who are suspected of having Head and Neck cancer. Our research team are refining tools (that use patient reported problems with voice and swallowing) to identify those who likely have Head and Neck cancer. If a GP suspects their patient might have cancer, they refer them to a clinic led by a specialist in Head and Neck (H&N) cancer. In the future, the patients will be asked by health practitioners to complete a questionnaire through an NHS website or through a telephone service. This questionnaire will be automatically processed to alert the H&N clinic if the patient is at ‘high risk’ of having cancer.

Our questionnaire also identifies those at a low risk of cancer. Probably as many as 97 of 100 people referred to the H&N clinic do not have cancer. Although low risk, this group still require specialist assessment and treatment. We think a new Speech and Language Therapist (SLT) led clinic could be a helpful solution. These therapists are highly skilled at assessing and treating problems with voice and swallowing.

Study aims: to develop a model of how SLT clinics should be set up. This will include defining:

What specific clinical skills the SLTs need and how patients are assessed

To do this, we will: Look at how similar clinics in other specialities work, including how they decide what skills are essential. Analyse the ways that medical specialists conduct H&N consultations to produce an assessment procedure used in ‘usual care’. We will then: Share the skills list and assessment procedure with experts in the field. Ask the experts to agree a final list of essential skills and assessment procedures. Future work: Beyond this proposal, we will need to do more research to check whether the new SLT clinic works to help diagnose and treat patients' voice and swallowing problems.

In healthcare, the 'head and neck' region includes the nose, mouth, throat, voice box, thyroid and salivary glands. Many patients present to their GP with symptoms affecting these areas, including hoarse voice, throat discomfort, neck lumps, mouth ulcers and difficulty swallowing. In some patients, these symptoms will be caused by a 'head and neck cancer', and so they may be referred to the hospital for an urgent specialist opinion. In the last year in England, 228,482 patients were referred with suspected head and neck cancer, making it the fifth largest group of suspected cancer referrals.

After specialist assessment, the vast majority (95%) of these patients can be reassured that they are cancer-free, but about 5% of patients will be diagnosed with cancer. In referral pathways for some other suspected cancers (e.g., prostate and lung), a scan may be arranged before the patient is seen in clinic to help reach the diagnosis sooner, and reduce any anxiety that the patient may experience in this period. However, due to the various types of cancer seen within the head and neck, no single laboratory test, imaging investigation or diagnostic procedure is suitable to assess all the referrals we receive. Around one third of patients referred with suspected head and neck cancer will undergo some form of investigation but the information in the referral is often not enough to decide who may need an investigation, or which type they may need.

We will work with patients and other interested parties to develop and implement a new pathway for suspected head and neck cancer referrals, based around the patient and their symptoms. In the new pathway, the hospital will make contact with the patient soon after receipt of the referral. Patients, with the help of their family and/or carers, will be asked to complete an electronic questionnaire about their symptoms using a smartphone, tablet, computer or automated phone call. Building on our previous work, we will develop a risk stratification system for head and neck cancer and based on thousands of new referrals who will be assessed as part of our development and feasibility work. The hospital specialist will then review all the information from the symptom questionnaire and the patient’s individualised risk score to advise the most appropriate management, before the patient comes to hospital. Using this system, higher-risk patients may have targeted investigations arranged directly, before being seen in clinic, and lower-risk patients may avoid unnecessary investigations and hospital appointments before being reassured. We will compare this new pathway to the existing system to ensure it is safe in identifying just as many cases of cancer, while also leading to faster diagnosis, reducing patient anxiety and using healthcare resources more efficiently.

For more information see EVEREST-HN | The Royal Marsden

The Patient Concerns Inventory (PCI-HN) is a condition specific prompt list. The concept stems from the literature on the value of question prompt lists in oncology, however as an item the approach has a simplicity which enables its integration into routine care. The PCI-HN was developed as a tool to help overcome some of the difficulties inherent in Health-Related-Quality-of-Life (HRQOL) questionnaires, notably the limited number of issues, the wording, the reliance on Likert scoring as an outcome and the patient questionnaire burden.

The PCI-HN was developed through patient focus groups and first published in 2009 [1]. It is a tool for use in post treatment consultations to help patients raise issue that otherwise, though important, can be missed. It compromises of a list of 56 items and covers physical, treatment, social care, psychological and spiritual aspects. In addition, the PCI-HN lists 18 allied professionals and asks patients to select any that they would like to talk with in clinic or by referral. A systematic review and content comparison of unmet needs self-report measures used in patients with head and neck cancer favoured the PCI compared to 13 other tools [2]. There is also a PCI-HN with specific items appropriate for use at the time of diagnosis of head and neck cancer [3]. The PCI is a free to use resource.

There have been numerous papers on the PCI and these support the premise that:

·         It is feasible in routine patient care

·         It is appreciated by patients

·         It is a tool that helps the ‘hard to reach’ such as elderly and those from low socioeconomic backgrounds.

·         It facilitates the ‘conversation’ around potential unmet needs

·         Its frequent use provides multiple opportunities for intervention

·         It had stratified and make more appropriate the referrals to disciplines (targeted signposting)

·         A realisation of the common issues serves as drivers for change reflecting patient experience

·         A randomised trial (RCT) provides evidence of benefit as a low-cost intervention which improves patients quality of life

·         The PCI approach has been developed in other cancers and long-term conditions such as neuro-oncology, burns, rheumatology, stroke

1.Rogers SN, El-Sheikha J, Lowe D. The development of a PatientsConcerns Inventory (PCI) to help reveal patients concerns in thehead and neck clinic. Oral Oncol 2009. Jul;45(7):555-61. doi:10.1016/j.

2.Shunmugasundaram C, Rutherford C, Butow PN, Sundaresan P, DhillonHM. Content comparison of unmet needs self-report measures used inpatients with head and neck cancer: A systematic review. Psychooncology2019. Dec;28(12):2295-2306.

3.Byrne MJ, Rogers SN (2017) Service evaluation of patients’ views on the Patients’ Concerns Inventory (at diagnosis). Br J Oral Maxillofac Surg 55(7):714–716.

You can access the PCI-HNC here: Patient Concern Inventory | Liverpool Head & Neck Centre

This feasibility study is funded by the NIHR Research for Patient Benefit and aims to understand and evaluate head and neck cancer (HaNC) patients’ engagement in physical exercise. The vast majority of HaNC patients have low levels of physical activity, associated with substantial treatment side-effects. The project will develop a collaborative, flexible, patient-centred personalised programme, with tools to support HaNC-specific barriers to exercise, and test whether this is feasible and acceptable. 35 HaNC patients will be recruited across Liverpool and Sunderland. Physiotherapists will work with local Cancer Exercise Specialists to devise a personalised exercise programme, using support tools to overcome HaNC-specific barriers, with weekly virtual support. We will assess; rates of uptake, retention and exercise completion; patient reported symptoms and QOL; physical fitness. We will interview patients and healthcare professionals. Our study will determine whether further research into personalised exercise programmes is feasible and worthwhile.

Our team includes

• Professor Jo Patterson, Speech & Language Therapist, University of Liverpool

• Val Bryant PPI representative

• Professor Adrian Midgley, Clinical Exercise Physiologist and certified Cancer Exercise Specialist

• Dr Andy Levy, Reader and Chartered Exercise Psychologist, Edge Hill University

• Professor Simon Rogers, Consultant HNC Surgeon, Edge Hill University

• Mr Mike Nugent, Consultant HNC Surgeon, South Tyneside and Sunderland NHS Foundation Trust

• Mr Andrew Schache, Consultant HNC Surgeon and Reader at University of Liverpool

• Ruth Price, Specialist HNC Physiotherapist, University of Liverpool Hospitals Foundation Trust

• Dr Brooker, Academic Clinical Oncologist, Clatterbridge Cancer Centre, Liverpool

• Dr Steven Lane Medical Statistician, University of Liverpool

• Professor Bridget Young, Qualitative Methodologist, University of Liverpool

• Collaborator: Dr Gillian Prue Queens University Belfast, Chair of the NCRI Acute Care and Toxicities Workstream and member of the Living With and Beyond Cancer Group

The study aims to improve the experiences of patients with incurable head and neck cancer (IHNC) by finding out the most pressing issues for them and developing solutions to improve these.

How will we do this?

1. A series of up to three interviews, over an 8-month period, with incurable head and neck cancer patients and their families, along with group discussions with healthcare workers involved in head and neck cancer care. These will explore how patients’ needs and use of healthcare change over time.

2. Using interview and group discussion findings, we will hold a series of workshops with patients, families, clinical service leaders, and healthcare workers. We will identify priorities and develop ways to improve care experiences.

The study was awarded funding from the NIHR Research for Patient Benefit programme

Background

In the UK, approximately 6,000 people receive radiotherapy each year for head and neck cancers. This treatment usually takes place in daily sessions lasting around 10-15 minutes, and it is essential that patients do not miss any appointments. To ensure precise targeting of radiation while sparing healthy tissues, patients must remain completely still during daily treatment. Currently, rigid, custom-made thermoplastic masks are employed to limit movement, but these are tight and uncomfortable. Patients with head and neck cancer who are receiving radiotherapy often feel a lot of anxiety, especially because of the immobilization masks they have to wear. The mask is a rigid plastic device that helps keep patients still during treatment, but it can be quite uncomfortable, and this discomfort often increases as treatment goes on. These masks can make some patients feel claustrophobic and very uncomfortable. Studies show that up to 40% of patients ndergoing radiotherapy experience anxiety and some patients need to take breaks from treatment or use medication to help calm their nerves.

Aim(s)

The primary aim of this project is to reduce anxiety for radiotherapy patients with head and neck cancer by using virtual reality (VR) technology during treatment while anxiety while ensuring patients remain motionless. This system is intended to improve patient comfort and psychological well-being during treatment sessions.

Design and Methods

To ensure safety, the system will undergo comprehensive testing to make sure it works in a radiation treatment room and also to check that it does not interfere with the radiation dose delivered during treatment. The next phase involves evaluating the experience of using VR by asking healthy volunteers from the local community to have simulated CT scans; one using the traditional fitted mask and the other using the new VR system. Following each session, volunteers will complete anxiety surveys and have their heart rates monitored to assess how the experience affected them. Additionally, their head positions will be tracked using a laser system to check that they did not move during the session After experiencing both systems, volunteers will have short interviews to compare their experiences and share their feelings about each method. This feedback will help researchers determine whether the VR system reduces anxiety compared to the normal mask.

Patient and Public Involvement

The design of this project has been informed by a local patient-led research group and a patient group specializing in head and neck cancers. This collaboration will continue throughout the project, providing input on hardware and software design, user evaluations, and sharing results.

We aim to improve support services for people diagnosed with head and neck cancer (HNC). The number of people treated for HNC is increasing. About a third have anxiety or depression (also known as emotional distress) which is bad enough to require professional support. Emotional distress reduces quality of life and can make living with symptoms of HNC worse. Many have long-term and complex difficulties with altered appearance, speaking, eating, and drinking difficulties, leaving them very isolated. Some people with HNC do not wish to engage with professional services to help reduce emotional distress. A wider range of care and support must be available. Peer support is one option; it involves people with a similar condition providing social, emotional, or practical support to others. This form of support has been beneficial in other cancer groups. Peer support could improve mental health, provide access to help closer to home and reduce healthcare use. Little is known about the best way to set up a peer support service. Multiple perspectives are required including HNC patients, local and national healthcare providers, social care providers, and cancer charities. Developing a better understanding of how to design and organise a peer support service is the primary aim of this project.

How will we do this?

There are two main parts to our work, occurring over 15-months within North-West England. First, we will gain idea from patients and people working in healthcare. Interviews will highlight issues and attitudes towards the development and implementation of a peer support service. We will recruit from places with high poverty, diverse ethnicity, and varying distance from specialist cancer centres. We will conduct three workshops with patients, healthcare and social care staff, and cancer charities, to put all the information together and develop a peer support intervention for future testing. We anticipate the intervention will address issues such as identifying and training peers, enabling access, understanding who peer support is likely to benefit and how to reach people who are isolated.

Patient Involvement

Our established HNC Patient Forum identified peer support as a research priority. Members described benefit from meeting other patients, some preferring this to talking to professionals. However, they recognised that peer support access is variable and limited. They identified multiple problems such as matching patients, and peer supporter training. The Forum has guided our plan. We have an experienced PPI representative on the project. He has advised on the proposal and will chair regular PPI meetings. They will help develop information resources, comment on findings and help with sharing our findings.