The development of a Patient Decision Aid (PDA) and Patient Concerns Inventory (PCI) for people diagnosed with recurrent head and neck cancer (HNC)
This study is developing new tools for people suffering from head and neck cancer that has come back. Head and neck cancers, which affect areas like the mouth and throat, can be very tough to treat, and when they return, treatment choices become even more complicated, often with difficult side effects. Our goal is to create a 'Patient Decision Aid' to give clear, easy-to-understand information about treatment options, including how they work and any potential risks. We're also making a 'Patient Concerns Inventory' – a simple form to help patients list their worries and side effects before speaking to their doctors. This way, patients can feel more involved in decisions and ensure their concerns are shared with their medical team.
At a glance
What is this study about?
When head and neck cancer comes back, it can be a really challenging time. These cancers are already hard to treat, affecting important areas like your mouth, tongue, or throat. When they return, deciding what to do next becomes even more complex. You might face choices between treatments that could cure the cancer but have serious side effects, or treatments that can extend your life but won't cure you and also come with their own side effects.
This study is all about making those tough decisions a little easier and helping you feel more supported. We're going to create two important tools. The first is called a 'Patient Decision Aid'. Think of it as a helpful guide that will give you clear, straightforward information about all the different treatment options available. It will explain what each treatment involves, how likely it is to work, and any possible risks or side effects, so you can understand everything clearly.
The second tool is a 'Patient Concerns Inventory'. This is a simple list where you can tick off or write down any worries or concerns you have about your cancer and its treatment before you meet with your doctors or nurses. This means you won't forget important questions or feelings, and your healthcare team will have a better understanding of what matters most to you. We believe these tools will help you feel more confident and involved in your treatment journey.
Key takeaways
- Developing two new tools for people with recurring head and neck cancer.
- A 'Patient Decision Aid' to give clear treatment information.
- A 'Patient Concerns Inventory' to help share your worries with your medical team.
- Aims to make tough treatment decisions easier for patients.
- Involves patients and healthcare professionals working together.
- Goals are to improve patient involvement and support in care.
Who may be eligible?
This study is looking for two main groups of people to help develop these important tools: patients and healthcare professionals.
For patients, we are looking for adults aged 18 or over who have recurring head and neck cancer. You would need to be able to understand and agree to take part in interviews. We're also looking for patients who are currently receiving certain treatments (like immunotherapy, chemotherapy, or are on a clinical trial for new drugs) or who have had surgery or repeat radiation for their recurring cancer.
For healthcare professionals, we are looking for doctors, nurses, and other specialists who work with head and neck cancer patients, and who have at least five years of experience in treating recurring head and neck cancer.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Are you 18 years old or older?
- Do you have head and neck cancer that has come back?
- Are you currently receiving active treatment (like chemotherapy or immunotherapy) or have you had surgery/re-irradiation for your recurring cancer?
- Are you able to understand information and express your thoughts in an interview?
- Can you understand and agree to take part in the study?
What does participation involve?
If you decide to take part, you'll be helping the research team design and refine these new tools. This means you'll work with the researchers as an equal partner. The team will gather information, and you'll share your thoughts and experiences in interviews or discussions about what should be included in the Decision Aid and Concerns Inventory. You'll help them improve these tools until they are clear, useful, and ready for other patients. The study is expected to run from March 2026 to October 2027.
Potential risks and benefits
Locations (1)
- The Royal Marsden NHS Foundation TrustCity onlyLondon, England
Common questions
What is head and neck cancer?
Head and neck cancer can affect areas like your mouth, tongue, throat, and voice box. It can be challenging to treat, especially if it returns.
What is a 'Patient Decision Aid'?
It's a clear guide that gives you information about different treatment options for your cancer, explaining what they involve, how well they work, and any side effects.
What is a 'Patient Concerns Inventory'?
It's a list or form where you can write down your worries and concerns about your cancer and treatment before meeting your healthcare team, to help you share them.
Will I get direct medical treatment in this study?
No, this study is about developing helpful tools for patients, not providing direct medical treatment. However, your involvement will benefit future patients.
Who is funding this study?
The study is being funded by the National Institute for Health Research (NIHR) in the UK.
How to find out more
Sofia Georgopoulou
Always speak to your GP or specialist before deciding to take part in a study.
Discussion
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