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Pain management in the domestic situation not always optimal (Simon et al., 2020)

Children who are being treated for cancer also often experience pain when at home. Most of them receive medication or other forms of pain control, but in approximately one third of cases they are not given anything at home to relieve the pain. This was shown by research from a team led by dr. Erna Michiels (Princess Máxima Center and Erasmus MC-Sophia Children’s hospital, Rotterdam). In the Máxima an app has now been developed to help improve pain management for children at home.
Children with cancer unfortunately often experience pain. Nowadays, these children spend more and more of their time at home while under treatment. Therefore, researchers wanted to know how often they experience pain when at home, and how that pain could be managed best. This will help to provide the most optimal quality of life, also in the domestic situation.

Majority experienced pain
The researchers inventoried how often children who are being treated for cancer experienced pain when at home, how bad that pain was, and how often they received pain medication. A total number of 73 children, aged 1-18 years, participated in this research. On four consecutive days around the time of chemotherapy appointments, they or their parents were asked to report the amount of pain they were experiencing. The majority of the children (78%) experienced significant pain at some point, with a pain score of four or higher on a scale of zero to ten. Some 30 percent of the children even experienced significant pain at least half of the time. Moreover, it turned out that in approximately one third of cases no medication was given for pain relief.

KLIK pain-monitoring app
Based on these findings we developed the KLIK pain-monitoring app in the Princess Máxima Center. Children or their parents can report a pain score in this app, after which a caregiver from the Pain team can contact them for advice. The app also contains useful tips for at home. A study (RELIEF-2) is currently ongoing to determine whether this app really helps to better manage pain at home.