Decreasing the pain for kids that had a nussbar procedure
The ‘nüssbar’ procedure is a painful surgery for, mostly young, people with a pectus (the opposite of a chicken’s breast). The nüssbar is placed behind the ribs and pushes them outwards. The days after the surgery are very painful because the muscles around the ribs are also stretched up. To reduce the pain and number of days in the hospital the patients need to do special exercises.
How can we improve the quality of life and quality of care for patients with chronic myeloid leukaemia?
While listening to the patients we found out that most of the patients didnt know why they needed to do the exercises. We also learned that the pain sometimes kept them from doing the exercises as well. They missed a short-term incentive because the promise of long term results was not motivating enough for most. To solve these problems a prototype was build in which the necessary exercises were added as videos. After each exercise the standard VAS scale would be shown to measure pain. There would also be a reward if the child followed the exercise program. The parents could set a reward which would be visable on the main screen of the app. The concept for the app is now being developed together with ‘Physitrack’, a website that offers a large database of exercises with videos and uses questionaires to gather context information.
What did we do?
REshape started by listening to the young patients that received the nüssbar surgery recently. After learning more from their stories and summarizing this for the department of cardio-thoracic surgery we started the 30 day project by organizing two brainstorm sessions. After the second brainstorm we build the first version of the prototype and tested it with the patients.
It’s estimated that a pectus, a anomaly of the chest, occurs one in every 1.000 births, but not everyone with a pectus will have a surgery. The pectus excavatum (a ‘dent’ in the chest) is more common for people that have the Marfansyndrom or Ehlers-Danlos syndrom, in both syndroms there a gen in relation to the tissue. The real number of patients with a pectus excavatum is unknown in the Netherlands.
Prof. Dr. Nicole BlijlevensInternist Haematologist
“CMyLife improves the quality of care for patients with CML. By allowing people to take control of their own care-process they can better shape their live with the disease in a way that fits their personal situation.”
Barend HeerenProgrammanager HereIsMyData at Radboudumc
“With CMyLife we’re able to empower patients by giving them the tools they need to understand and check if they receive the right care and to manage their own side-effects.”