Seeking the views of people affected by cancer for our research: Evaluation of the Scottish Cancer Patient Reported Outcome Measures (PROMs) Toolkit

Patient Reported Outcome Measures (PROMs) are questions people answer about how they feel. They can ask about things like pain, tiredness, mood, or how an illness or treatment affects daily life, such as sleeping or moving around. PROMs can be on paper or online, such as on a website or app. Patients usually answer the questions themselves. Doctors and nurses do not answer them for patients. Studies show that when patients fill out PROMs questionnaires, the information they provide can help them and their healthcare teams to make decisions about their healthcare together.

In Scotland, the Scottish Cancer PROMs Advisory Group is run by the Cancer Medicines Outcomes Programme-Public Health Scotland (CMOP-PHS) and other people at the Scottish Government and the University of Edinburgh. The Advisory Group helps to guide:
• How healthcare teams collect and use PROMs
• Research on PROMs
• Policies on cancer PROMs in Scotland.

This group made the Scottish Cancer PROMs Toolkit to help healthcare teams best collect PROMs from patients day-to-day in Scotland. Although the Toolkit is really for healthcare teams, it can be used by anyone who wants to collect and use PROMs. People affected by cancer, as well as different professionals had an important role to play in making the Toolkit and deciding what was important to be in it. That means, the views of people affected by cancer (patients and their family members or carers) are important to us in this work. The Toolkit was launched in October 2024. You can find the Toolkit at: https://learn.nes.nhs.scot/78153

Now that the Toolkit has been around for over a year, we wanted to understand how it was being used and how to make it better.

So what is the purpose of this evaluation? An evaluation means checking how well something works and how it can be improved. We want to find out:
• How healthcare professionals use the Toolkit
• What is good about it
• What is less good about it
• How we can make it better.

What you tell us will help us make the next version of the Toolkit better. You do not have to take part. Taking part is voluntary. It is completely up to you and there is no obligation to do so. You will not be treated differently if you do not take part or if you change your mind. Not taking part will not affect your cancer care in any way. You can ask to stop taking part later and we can delete your information later if you want us to.

This study invites you to take part in:
• an interview (one-to-one with a researcher, 30-60 minutes)
• or a focus group (small group discussion with other people affected by cancer, run by 2 researchers, 60-75 minutes).
You can also choose to fill out a questionnaire, either on its own or as well an interview or focus group.

There are no right or wrong answers. We are interested in what you think and how you feel. Either way, you are also welcome bring someone with you for support if you wish. We will be collecting data until 31st October 2026.

This is a summary of the main points of the research. There are some more details about this study that you should know about before taking part. You can contact us using my (Emma Dunlop) email address listed, but you can also contact my colleague Amanda.Vettini@strath.ac.uk if you have any questions too. We will answer your questions and send you the full study information fi you wish. This will help you decide whether to take part or not. It will also tell you what data we will collect, how we will use it, your other rights as a research participant, and other important information on any potential risks etc.

Alternatively, you can read the full information about what it means to fill out the questionnaire, and go on to fill out the questionnaire if you wish, through this link: https://strathsci.qualtrics.com/jfe/form/SV_eS9prDzrwv6kF2m

Of course you can contact us instead to ask questions about the questionnaire and we can also email you the link too.

Experience required

We are interested in hearing the views of people affected by cancer. This includes:
• People who currently have cancer
• People who have had cancer in the past
• People who are family members or family carers of someone who has or had cancer.
We want to hear your views on what is most important to you when thinking about how PROMs information can be used as part of day-to-day care in Scotland. These views are important for us as we refresh the Toolkit and what goes in it. You do not need to have ever filled out a PROMs questionnaire to be able to take part. You also do not ned to know anything about the Toolkit to be able to take part.

If you take part in this study you also need to live in NHS Scotland.

Travel details

If you fill out a questionnaire, this is completely online. You cannot fill out the questionnaire on paper unfortunately.

If you take part in an interview or focus group, these an happen online over video call (using Microsoft Teams©). Microsoft Teams© works in an internet browser so you do not need to download anything to join in . You can join on a laptop, PC, tablet (like an iPad) or smartphone (like an iPhone). If you cannot or do not wish to take part online, you can come to the University of Strathclyde in Glasgow city centre and take part in person. Either way, you are also welcome bring someone with you for support if you wish.

Travel expenses

We cannot offer any reimbursement for taking part.

Training details

No training is required in order for you to be able to take part.

Restrictions

Minimum age: 18
Must live in NHS Scotland and have had experience of cancer, either as a person being treated for cancer (now or in the past) or a carer of someone who has / had cancer.

Availability

Frequency & commitment

You are invited to take part in: a one-off questionnaire; OR a one-off one-to-one interview, OR a group discussion (a "focus group") with other people affected by cancer; or BOTH a questionnaire AND an interview or focus group.

I want to volunteer