Developing the Developing the BEARs virtual reality training package

The BEARs (Both Ears) virtual reality training package is a collection of applications that are being developed for bilateral cochlear implant users.

These applications will provide sound balancing, speech-in-noise and localisation training in the virtual reality world. The team are developing a package by working with teenagers and young adults with cochlear implants, to make sure that the games are useful and fun to play.

This short video (approx. 3 minutes) explains the BEARs project.

Cancer Research Patient Group

Hear from a group of women who have been been involved in cancer research.

HOPE – ART (Health Observation & Patient Effect modelling for Abrogation of Radiotherapy Toxicity)

CUH PPI Panel focus group discussion - NIHR Cambridge BRC image

Amy Bates, radiographer and lead researcher for the HOPE-ART study, contacted the CUH PPI panel to ask for help with reviewing her outline research proposal.

Amy wanted to know in particular if the panel thought there was significant patient benefit – and if the approach was acceptable. She was keen to seek the panel’s views as early as possible in the proposal process to ensure that changes and modifications could be incorporated in her study.

The term prostate cancer describes a group of cancers that arise within the male prostate gland. Around 47,000 men each year are diagnosed with prostate cancer. Both surgery and radiotherapy are considered the gold standard treatment for prostate cancer dependent the stage of the cancer. Almost 90% of those diagnosed with prostate will survive 5 years or more, while 84% will survive 10 years or more. It is therefore vital that we consider the implications of not only the short-term side effects of treatment and prognosis but also the management of long-term side effects (morbidities) and impaired quality of life, both from the patients’ perspective and health economically.

The aim of the study was to develop a predictive modelling tool that combines health observations, severity of acute radiation (during treatment) toxicity and overall dosage of radiation received to predict which men are more likely to have late radiation (6 months after treatment) toxicity side effects.

Around 7% of patients experience the late radiation side effects, some of which are as a result of damage to the organs around the prostate during the radiation treatment; and can include diarrhoea, urgency, and erectile dysfunction.

This can cause significant problems for patients and lead to further treatment in the NHS. The study hopes to be able to identify men most at risk and then be able to support them more appropriately during their treatment. Knowing who those patients are will also significantly reduce the financial burden to the NHS as treatment plans can be adjusted.

The panel provided a great deal of feedback to Amy to help her explain her study rationale, also in how she might approach patients around some of the more sensitive questions, particularly concerning erectile dysfunction. Amy attended a panel meeting and gave a very clear and informative presentation followed by a Q&A. This has also helped her to prepare for presenting her work in future to funders and other lay audiences.

 

How can we prevent frail elderly patients from losing strength following a hospital admission?

Researcher at a PPI focus group - NIHR Cambridge BRC image

In older frail patients, illness often causes weakness and difficulty carrying out day to day activities.

As a result, many frail people require admission to hospital because they are unable to look after themselves at home. One of the reasons frail people struggle to recover from illness might be because they lose muscle and become weaker when in hospital due to lack of activity.

The aim of this study was to investigate changes in muscle strength in frail elderly patients following a hospital admission. Peter Hartley, a physiotherapist who is leading the study, asked for support from the CUH PPI panel to help design the intervention.

With the support of PPI Coordinator they coordinated a focus group of 10 individuals from the panel. The aim of the meeting was to discuss and gain views on the overall approach of the study; how to measure changes in strength and physical ability; and the panel’s views on patients having an exercise programme in hospital.

Impact

The focus group discussion raised a number of issues around the acceptability of this type of intervention in elderly patients (over 80). Practical suggestions were made which changed the outcome measures from counting 10 repeats of a standing/sitting exercise to however many the patient could manage.

The discussion and subsequent document review allowed Peter to modify the study design and give consideration as to how to sensitively recruit patients. Again the panel could clearly see the need for this research and the support for activities to help elderly patients retain muscle strength and mobility.

Peter’s grant application was successful, and he was awarded a highly competitive Dunhill Medical Trust Research Training Fellowship award which will allow him to carry out this research over the next three years.

Medicine Adherence for Patients Support (MAPS)

Tablets - Image from Cambridge University Health Partners

A study to investigate a personalised messaging service to support and remind patients taking medication for diabetes or high blood pressure, Medicine Adherence for Patients Support (MAPS) benefited from input from the PPI panel.

The researchers had devised a series of text and voice messages to remind patients to take their medication. This intervention was created to help those who forget or needed support to adhere to a routine to take their medication.

The research team were not sure if the messages were of the right tone or if the nature of delivery would be acceptable or viewed as intrusive. Their research aimed to gather views of patients on long term medication asking them to trial the system and then attend a focus group to collect their views. Ultimately they wanted to provide evidence to support this intervention for patients who forget to take their medication.

The CUH PPI Panel were involved in reviewing the Patient Information Sheets (PIS) and Consent Forms and two individuals who already take medications long term volunteered to test run the intervention and focus group discussion.

Impact
This feedback and early testing allowed the research team to make changes to the PIS and consent forms. The feedback drew out some issues around patient confidentiality and recruitment of patients through their GP. The trial of the messaging and the test run of the focus groups helped the team to modify the intervention and provide them with valuable insights as to how they might facilitate the focus group discussion.

The aim of this input was not necessarily to change the primary outcome of the research but to ensure that their approach would optimise input and feedback from the patients taking part.

The panel were very supportive of the study, having learned that non-adherence to medication potentially costs the NHS £millions in wasted prescriptions and also compromises the health of patients often leading to other more intensive treatment.

Dr Katerina Kassavou who is leading the study was very grateful of the support and feedback she received. She also presented her work at a CUH PPI panel meeting and to the PPI oversight committee gaining exposure for the research and support from patient and public representatives.

The time allowed to gather and test the intervention happened over a 4-6 week period. The research team now have an improved Patient Information Sheet; an improved intervention with modifications to the messaging service; valuable insight to improve the focus group discussions; and were open to friendly but challenging questions which have given them the opportunity to prepare for the types of question you might receive from a funding committee or ethics board.

Patients input into study design and protocol for ‘pill on a string’ cancer diagnostic tool

Cytosponge device

Professor Rebecca Fitzgerald and team have developed a new diagnostic tool for Barrett’s Oesophagus called the cytosponge. Barrett’s oesophagus is linked with the occurrence of oesophageal cancer. The cytosponge has been extensively tested in studies with patients and healthy volunteers at the Cambridge Clinical Research Facility. The team now want to find out if the tool can be used effectively in GP surgeries, and prove if it can be used to diagnose Barrett’s oesophagus early and therefore detect patients who might be at risk of developing this cancer.

The CUH PPI Panel volunteers were involved in reviewing the study design and protocol, patient information sheets and summaries, and have received feedback and updates on trial progress.

How? They met as a focus group to hear a presentation from the study data coordinator and research nurse and to provide feedback on study documents. There have been subsequent meetings to update the group on progress. The panel asked many questions including how GP surgeries were chosen and why not all GP surgeries. The team explained that GP surgeries close to endoscopy units were chosen in case of any emergencies, for example, swallowing of the capsule and string. They also need to have some GP surgeries as control groups to assess the normal level of diagnosis in the community.

Why? As a result of the focus group, patient information sheets were simplified and the ethical considerations and selection choices explained. The public group are now informed of progress and hope to retain a role in oversight for further research. The research team were hugely appreciative of the support they received and are now advocates for the early involvement of patients and the public in the research process.

 

Tinnitus study revises protocol and patient-facing documents as result of PPI feedback

Close up photo of ear. Image by Anemone123 from Pixabay.

A researcher investigating tinnitus asked volunteers on the CUH PPI panel for feedback on her project’s patient-facing documents – and as a result amended her protocol and is now looking to set up a tinnitus-specific PPI group.

Dr Marina Salorio-Corbetto, who is studying how tinnitus affects adults who use cochlear implants and the effectiveness of sound therapy in improving tinnitus symptoms, initially asked the panel to review the participant information sheet (PIS), consent form and questionnaire for her project.

This review was carried out by panel members via email and the volunteers’ feedback on their readability, coherence and phrasing helped Dr Salorio-Corbetto – who does not suffer from hearing loss – gain more understanding of what it’s like to live with this condition.

But their feedback also showed the range of difficulties experienced by those with hearing loss – and that while doctors can scientifically predict its effects, this may not accurately reflect the day-to-day reality for people living with the condition.

Dr Salorio-Corbetto took on board many of the PPI panel members’ recommendations but it also became clear to her that her research would benefit from a tinnitus-specific PPI group, including people with varying degrees of hearing loss and with symptoms of tinnitus. Dr Salorio-Corbetto now plans to set this up to help improve the sound therapy intervention and feedback on the research as it evolves.

Amendment

Feedback from the panel also led to a research-protocol amendment, which Dr Salorio-Corbetto agrees has helped make her research more attractive to potential participants.

The testing sound therapy on participants was originally set to last for one day but panel members felt that this was too long – especially if those taking part did not live locally or had other things to do.

This was accepted and the protocol amended from 7 hours for the testing sound therapy to 4 hours.

Artificial pancreas is helping protect very young children with type 1 diabetes

Artificial pancreas app, insulin pump and glucose monitor

Researchers compared the performance of the artificial pancreas, which uses an algorithm to determine the amount of insulin administered by a device worn by the child, against ‘sensor-augmented pump therapy’.

Management of type 1 diabetes is challenging in very young children, because of a number of factors including the high variability in levels of insulin required and in how individual children respond to treatment, and their unpredictable eating and activity patterns.

To manage children’s glucose levels, doctors increasingly turn to devices that continuously monitor glucose levels and deliver insulin via a pump, which administers insulin through a cannula inserted into the skin. These devices have proved successful to an extent in older children, but not in very young children.

Professor Roman Hovorka, developed an app – CamAPS FX – which, combined with a glucose monitor and insulin pump, acts as an artificial pancreas, automatically adjusting the amount of insulin it delivers based on predicted or real-time glucose levels. It is a ‘hybrid closed loop system’, meaning that the child’s carer will have to administer insulin at mealtimes, but at all other times the algorithm works by itself.

The research team found the device performed better than current methods and parents found using this device life-changing. Read the full story from January 2022.

Brain receptor uses nutritional state to control growth and age at puberty

Children holding hands - cherylholt from Pixabay

Researchers have discovered how a receptor in the brain, called MC3R, detects the nutritional state of the body and regulates the timing of puberty and rate of growth in children and increases in lean muscle mass.

It was previously thought growing taller and reaching sexual maturity may have been related to access to food for pregnant women and children, but researchers have now found it might be related to a receptor in the brain.

It is already known that signals reach the brain to indicate the body’s nutritional state. In a part of the brain called hypothalamus, hormones act on a small group of neurons that produce signals called melanocortins.

The melanocortins act on a variety of receptors, two of which are present in the brain. One of these, the melanocortin 4 receptor (MC4R) has previously been shown to regulate appetite and lack of MC4R results in obesity, but the MC4R system does not control the effect of nutrition on growth and timing of puberty.

Researchers found that in response to nutritional signals the MC3R system controls the release of key hormones regulating growth and sexual maturation, showing the brain can sense nutrients. This study could help people with the management in growth and puberty disorders.

Read the full press release from November 2021.

Artificial pancreas trialled for outpatients with type 2 diabetes for first time

Artificial pancreas device

An artificial pancreas could soon help people living with type 2 diabetes and who also require kidney dialysis.

Tests led by the University of Cambridge and Inselspital, University Hospital of Bern, Switzerland and supported by the NIHR Cambridge BRC, show that the device can help patients safely and effectively manage their blood sugar levels and reduce the risk of low blood sugar levels.

Diabetes is the most common cause of kidney failure, accounting for just under a third (30%) of cases. Kidney failure increases the risk of hypoglycaemia and hyperglycaemia – abnormally low or high levels of blood sugar respectively – which in turn can cause complications from dizziness to falls and even to coma.

Managing diabetes in patients with kidney failure is challenging for both patients and healthcare professionals. Many aspects of their care are poorly understood, including targets for blood sugar levels and treatments. Most oral diabetes medications are not recommended for these patients, so insulin injections are the most commonly used diabetes therapy – though optimal insulin dosing regimens are difficult to establish.

The researchers showed that the artificial pancreas – developed for patients with type 1 diabetes – can also be used to support patients living with both type 2 diabetes and kidney failure.

Unlike the artificial pancreas being used for type 1 diabetes, this version is a fully closed loop system – which means it can function entirely automatically. without any input from patients.

In the trial patients were split into two groups, one using the control treatment and the other using the artificial pancreas. Those using the artificial pancreas spent on average 53% of their time in the target blood sugar range, compared to 38% when they used the control treatment. The length of time they had potentially low blood sugar levels, or ‘hypos’, was also lower.

Nine out of ten (92%) reported that they spent less time managing their diabetes with the artificial pancreas than during the control period, and similar numbers (87%) were less worried about their blood sugar levels when using it.

This is an abridged version of the press release which was first published on our website on August 5, 2021.

 

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