SenseCheQ: Community-based sensory testing for early identification of Chemotherapy Induced Peripheral Neuropathy

Tell us about your project:

Chemotherapy-induced neuropathy (CIPN) affects 60-70% of people receiving neurotoxic chemotherapy for cancer (e.g., Platins, Taxanes). Approximately 30% of those people will develop chronic CIPN, experiencing symptoms for more than 6 months following treatment. The symptoms can include pain, numbness, balance issues and fainting, impaired fine motor control, sexual dysfunction, and incontinence. CIPN significantly reduces quality of life, ability to work and puts additional economic burden on the NHS as patients with CIPN incur additional care costs.

There is no effective treatment or preventative intervention for CIPN. The only clinically proven course of action is chemotherapy dosage reduction, termination of treatment or switching the chemotherapeutic agent. Early detection is therefore key, before the neurotoxicity becomes irreversible. There is currently no gold standard diagnostic tool for CIPN so diagnosis is often delayed. Quantitative sensory testing (QST) has been shown to be promising as a measure of nerve damage as differences in sensory function between healthy controls and people with CIPN can be detected using these techniques. The tests assess the ability to detect thermal and mechanical stimuli as an indication of changes in sensory function.

However, QST is not part of standard clinical care because it is demanding to administer. The full test protocol lasts upward of 90 minutes, the equipment is expensive, a controlled environment is required, and the tests need to be administered by a trained operator. This also makes large-scale research studies into the utility of QST for early detection of neuropathy difficult.

SenseCheQ is a project being undertaken collaboratively by neuroscientists, clinicians, and engineers working alongside people with lived experience (PwLE). Our aim is develop a reliable, home-based, self-administered, simplified QST protocol that could be used by people with cancer to monitor their nerve function for signs of toxicity from chemotherapy treatment. This was set on the background of a prevailing view that reliable sensory testing cannot be undertaken in a home setting, let alone be self-administered, because of the great variance in environmental and individual contexts. Therefore, there were a large number of engineering, software and protocol obstacles to overcome to reduce the increased noise inherent in home-based testing.

Informed by our discussions with PwLE we set out to answer the following questions: which sensory modalities to monitor, where should we test on the body (e.g. feet or hands), how long should the test last, how should we design the user interface, what should the instructions look like, and what feedback should be provided to the user.

How did you involve people?

A patient partner group was recruited at the very outset of the study design informing the investigations we proposed and were costed into the original application.  They have subsequently served as an integral part of the project being represented on the project management group and participating in regular PPIE group meetings to assist with our understanding. Our patient partners were included in discussions on most questions regarding the protocol and device being developed. They provided us with the initial scope and framework for what was likely to be acceptable/beneficial and implementable for our planned testing. They told us that it needed to be a short test protocol (10-15 minutes), it needed to be easy to administer ideally without a carer’s help while undergoing treatment, the interface needed to be simple, the equipment needed to be compact and portable, and the test location needed to be easily accessible for comfortable testing.  They challenged many of our starting presumptions.

Facing these overarching goals, we initiated a series of studies and developed multiple versions of our sensory testing equipment. We found that the sole of the foot was not sensitive enough to mechanical stimulation to be a viable test site and moved on to other sites – the top of the foot and the palm. Symptoms usually occur quicker and are more severe at the feet, but our patient partners indicated strapping a test device to the top of the foot would be quite cumbersome. Further investigations revealed the palm of the hand to be sensitive and confirmed it as a viable target which on discussion we agreed with our PwLE the remit.

Further discussion with our PwLE group resulted in our selection of three sensory test measures. These were vibration detection, cold detection and warm detection. We discounted pain threshold testing as our PwLE group indicated non-supervised administration of painful stimuli in a home setting would not be preferrable. Literature reviews and our own experiments aligned with this request as pain threshold measurements have shown to have poor sensitivity in differentiating between participants with and without neuropathy.  We have now published these findings and the motivating discussions in our recent paper which included quotes from our PPIE group and Alan Young as a co-author (Dujmovic M, Dunham JP, Gausden J, Groves B, de Cothi EAC, Burgess C, et al. Sense-checking the approach to quantitative sensory testing to detect chemotherapy-induced peripheral neuropathy. PLoS One. 2025;20(12):e0338105.)

We then set out to engineer integrated hardware that reliably delivered those stimuli and measured user responses. This was followed by development of the user interface again in collaboration with our patient partners. We developed an initial version consisting of two physical buttons and a basic user interface with an instruction set presented on screen. The protocol was then evaluated by our patient group and their feedback used to iteratively develop the interface until the final version was approved. The usability of the device has been noted in subsequent home use of the device by both healthy participants and people with cancer undergoing chemotherapy treatments with positive feedback and evidence of compliance with testing during treatment.

How did you find people to involve in your project?

We recruited our initial lead patient participant Alan Young as they had been working with the Dundee team on a related study.  Alan helped us to formulate our initial research proposal.  We also conducted a focus group with several other people with lived experience when preparing our proposal.  We were supported in our PPIE engagement by a PPIE co-ordinator at Dundee – Gillian Martin.  

Alan young describes his path to find and work with us as follows:

“23 Jan 2026

Diagnosed with cancer in 2017 and following subsequent Chemotherapy I found leaflets discussing the help that the Maggie’s centre (Dundee) offered. I joined a group of similar patients to take part in “Mindfulness Activities” in 2018.

Maggie’s helped me in all respects to cope with mental stress of cancer. It was the head of Maggie’s in 2019/20 that asked if I would be willing to engage with various research groups and I agreed. Initially “Painstorm” became the contact that put me in touch with a group that would be considering a patch that would measure nerve damage caused by CIPN.

After very interesting discussions with the SenseCheq team I was hooked. My feelings at the time were that if I could aid this project in any way, it would help me through my cancer journey and possibly help many others in the future with CIPN.

In conclusion my time spent with SenseCheq was enjoyable, satisfying and helped the team design & manufacture an excellent product to help cancer patients with CIPN.

Alan Young”

When we were funded for the project, we put posters in local cancer centres, approached clinical colleagues in the cancer services – particularly in late effects services - to help identify people and also advertised via support charities like Maggies and Penny Brohn. We recruited a panel of seven diverse people with varied experiences and two of them are still fully engaged with the current phase of the study some 4 years later.

To subsequently find PwLE for an Art Workshop that we ran we approached Penny Brohn, a cancer care charity in Bristol.  PB included information about the project in their weekly newsletter and directly emailed 200+ clients with a Bristol postcode.  Potential volunteers emailed SenseCheQ admin for more information and a final list was drawn up.

Most recently to identify further PwLE for the current study (to join a patient advisory group and a design focus group) we emailed our information and contact details to various cancer care groups throughout the UK including Black with Cancer and Breast Cancer Now.  To include as diverse a group as possible, we asked them if they would self report why they felt they could help to bring a range of views and also why they wanted to be involved in this research.  We are involving our existing patient partners in the recruitment process to help us to be representative in our selections.

How did you support people in your project?

We produced a SenseCheQ information booklet with help from our existing PPI members.  This was sent to all volunteers who contacted us for more information and included the outline of the research, the anticipate role of the PPI participants, a schedule of meetings and reimbursements for taking part. We met mostly virtually and supported them if they needed IT assistance.  At the start of each meeting it was acknowledged that we might be discussing topics that they might find emotive and triggering and that they should let us know if they were uncomfortable at any point.  We also prepared a glossary of terms and encouraged plain language in meetings wherever possible. We provided any documents for information or comment at least a week ahead of any meeting.

In addition, all participants were expected to assist us within a framework of understanding below:
• Involvement is voluntary, and you are not employed by a University or the SenseCheQ project.
• Group feedback will be collected, discussed, and implemented where possible.  Members should be aware that not all suggestions are possible to implement into the research.
• Members should be aware that group meetings will be focused on the research project and the agenda for the meeting. Although there will be clinicians working on the project they will not be able to provide any care or advice on your own condition. Group members are of course welcome to form a social group outside of project meetings. 
• Your name and email address, with your permission, will be shared with other members of the group and with other relevant members of the research team.
• This project brings together a large and diverse research team and members of the group are not expected to understand all the research concepts or all the details of each work package. Questions from the group are welcome to help understanding but please do not feel like you need to understand all of the research concepts. Group members can select which work packages and areas of the project to get more involved in, based on your own interests. 
• Patient involvement is new to some researchers and also to some patient advisory group members. Please be forgiving if plain English is not always used and do tell us when you need an explanation of any terms. Open and honest communication within the wider project team is encouraged to promote involvement and to share good practice

Can you give more examples of how you worked with them?

Our patient group also helped design recruitment posters, consent forms, and Participant Information Sheets. Some also designed and attended an ART workshop supported by an art facilitator designed to generate visual representations of how people experience CIPN – to improve the visibility of the condition.  We also met f2f at meetings of the APDP with some of our patient partners.  They had input to drafts of our first paper which includes specific statements from them that motivated our investigations.  They have also inputted to this report.

What impact did it have?

The inclusion of patient partners at every step of development guided both the engineering and research conducted throughout. Representatives of the group attended all of the regular monthly team meetings with additional patient partner meetings involving the entire group and members of the project taking place 3 monthly. Without a doubt, the current version of SenseCheQ equipment and the additional funding secured for optimization and a larger clinical trial would not have been possible without their contributions.

What would you change if you could do it again?

Funding and logistics permitting – we would have organized more in-person meetings / demonstrations. We would have also sought to include more under-represented groups (younger people, people from more economically disadvantaged backgrounds and from a broader range of ethnicities) by purposeful sampling.  We would ideally also have been conducting our studies overseas in other populations.

What tips would you give another researcher?

The earlier you can include PwLE in your research - the more they can contribute - and this has informed and improved our research in tangible ways. There is always a challenge to integrate non-scientists into research design and delivery but the effort needed is more than counterbalanced by the focus and insights offered willingly and generously by those who have experienced the problems that the research is aiming to address.

What challenges did you face and how did you overcome them?

Recruiting a diverse group of partners made scheduling and coordination a challenge at times.  Keeping people informed helped them to remain engaged.  We tried to operate in a relatively informal and open way and aimed to reduce the barriers to participation. On occasions we had minor disagreements over interpretation / approach, but we were able to progress by having calm discussions and agreeing paths forwards. Overall, the challenges were never very substantial.