Being diagnosed with a long-term condition can be a very anxious time for many people. There are always lots of questions and concerns around how best to manage the condition. While healthcare teams can help a lot, managing conditions day-to-day at home and work can still be challenging. Researchers in Leicester are hoping to improve this situation for people with chronic kidney disease.
Chronic kidney disease, or CKD, is a condition where the kidneys don’t work as well as they should. While the condition can get worse over time, most people never experience kidney failure. It’s a common disease that is estimated to affect 1 in 7 people over the age of 35.
We spoke to Dr Courtney Lightfoot, who is part of a team developing a new online programme to help those with CKD take an active role in managing their condition.
“Even if CKD doesn’t progress to kidney failure, it’s a long-term condition that people will need help and support to manage and live well with.
“We know that many people want to take an active role in their health. People want to know what choices to make, and why those choices make a difference. We also see in our research that when people have that power, their health is better.”
Dr Lightfoot and her team developed the MyKidneys&Me programme in response to that need.
She said: “The programme contains lots of information to help people manage their condition. We hope it’ll be a source that people know they can trust and something they can easily access to learn more about CKD. It’s all based around building the knowledge, skills, and confidence to manage your health and healthcare.”
The programme contains educational sessions to learn about topics from the kidneys and CKD to symptoms and sleep. Sessions contain a mix of reading material, animated videos, expert videos, quizzes, and myth busting. The programme also includes physical activity and exercise trackers, health trackers, a symptom tracker, goal setting features, a chat forum, and ask the expert features.
“We’re currently trialling the programme at 25 hospitals in England and have recruited over 200 people to try it out. We’re also asking for lots of feedback from these patients, and their healthcare team, to make the programme even better.”
MyKidneys&Me is currently being tested in a clinical trial called SMILE-K, including at UHL. You can find out more about the trial by getting in touch: Courtney.lightfoot@le.ac.uk