Julia Simon, PhD candidate and psychologist in the Grootenhuis and Tissing groups, is researching the development and implementation of a new digital tool: the KLIK Pain Monitor app. She says: ‘Pain is one of the most commonly reported and stressful symptoms in children being treated for cancer. The pain can be caused by treatment, procedures, or tumor growth. We know from previous research that pain is not yet optimally ‘managed’ in the home setting. For parents, it can be difficult to recognize and know how to act on pain, especially in young children. And many families unfortunately think that pain is simply part of the illness and there’s nothing that can be done, or they don't want to disturb the doctor too often by calling.’
Function
The KLIK Pain Monitor app is a communication tool to provide parents and children with information about pain and its treatment, and to get in touch with a healthcare provider more quickly the moment children have pain at home. In the app, on smartphone or tablet, parents, or children themselves if they are old enough, can rate how much pain they are experiencing. When they experience little or no pain (a score of 0 to 3), the app provides explanations and tips. For example, ‘Put something warm or cold against the sore spot,’ or ‘A tense body with tense muscles doesn't help when you’re in pain. Find something that makes you feel relaxed or comfortable. Listening to music maybe helpful.’ For scores of 4 or higher (i.e. ‘clinically significant pain’), the hospital’s Pain Team gets a notification and will contact the family to give advice, for example about which medication might help. Julia: 'So the aim of this app is mainly to inform families about what they can do at home themselves, and to lower the threshold for asking for help. This way, we hope the app can prevent pain from becoming worse.’
Effective
Previous (feasibility) research has shown that the app is user-friendly. Healthcare providers also think the app was a good addition to care. Over the past year and a half, Julia Simon conducted effectiveness research with a large group of children, to investigate whether children using the app actually experience less pain. She says: ‘The scientific results have yet to be published, but I am pleased with the statistically significant results. Children who used the app had much less pain than those without the pain app. For example, 52% of the control group reported a pain score of 4 or higher at least once, compared to 29% in the intervention group (the children with the app). Also, the parents of children in the intervention group were less stressed than the parents in the control group, which is an important side effect of the app.’
Next version
'We hope to implement the KLIK Pain Monitor app next year,' says Julia. 'All results have been accurately measured through questionnaires. Parents and children find the app user-friendly. They like the idea that pain is monitored when they are at home, and that they are called by the Pain Team if they report high pain scores’. Some parents indicated that a phone call is not always necessary: after a while they know what to do. Julia concludes: ‘We expect that in a next version of the app, parents will be able to indicate whether they want to be called yes or no; and that this will cause a decrease in workload for the Pain Team. And that is an important outcome of the implementation-research we carried out: caregivers worry about increased workload when using the app. If certain feedback is automated in the next version of the app, not all scores require active contact.'
RELIEF-2 study
Project group KLIK Pain Monitor app, RELIEF study: Erna Michiels (project leader, received grant for this project from ZonMw), Martha Grootenhuis (PI Psycho-oncology), Wim Tissing (PI Supportive Care), Sasja Schepers (post doc), Marloes van Gorp (post doc), Isabel Hooijman (master student), Julia Simon (PhD student). Julia expects to receive her PhD on the results of the app research in spring 2023.
Read more: Pain management in the domestic situation not always optimal (Simon et al., 2020) - Prinses Máxima Centrum - Research (prinsesmaximacentrum.nl)
Function
The KLIK Pain Monitor app is a communication tool to provide parents and children with information about pain and its treatment, and to get in touch with a healthcare provider more quickly the moment children have pain at home. In the app, on smartphone or tablet, parents, or children themselves if they are old enough, can rate how much pain they are experiencing. When they experience little or no pain (a score of 0 to 3), the app provides explanations and tips. For example, ‘Put something warm or cold against the sore spot,’ or ‘A tense body with tense muscles doesn't help when you’re in pain. Find something that makes you feel relaxed or comfortable. Listening to music maybe helpful.’ For scores of 4 or higher (i.e. ‘clinically significant pain’), the hospital’s Pain Team gets a notification and will contact the family to give advice, for example about which medication might help. Julia: 'So the aim of this app is mainly to inform families about what they can do at home themselves, and to lower the threshold for asking for help. This way, we hope the app can prevent pain from becoming worse.’
Effective
Previous (feasibility) research has shown that the app is user-friendly. Healthcare providers also think the app was a good addition to care. Over the past year and a half, Julia Simon conducted effectiveness research with a large group of children, to investigate whether children using the app actually experience less pain. She says: ‘The scientific results have yet to be published, but I am pleased with the statistically significant results. Children who used the app had much less pain than those without the pain app. For example, 52% of the control group reported a pain score of 4 or higher at least once, compared to 29% in the intervention group (the children with the app). Also, the parents of children in the intervention group were less stressed than the parents in the control group, which is an important side effect of the app.’
Next version
'We hope to implement the KLIK Pain Monitor app next year,' says Julia. 'All results have been accurately measured through questionnaires. Parents and children find the app user-friendly. They like the idea that pain is monitored when they are at home, and that they are called by the Pain Team if they report high pain scores’. Some parents indicated that a phone call is not always necessary: after a while they know what to do. Julia concludes: ‘We expect that in a next version of the app, parents will be able to indicate whether they want to be called yes or no; and that this will cause a decrease in workload for the Pain Team. And that is an important outcome of the implementation-research we carried out: caregivers worry about increased workload when using the app. If certain feedback is automated in the next version of the app, not all scores require active contact.'
RELIEF-2 study
Project group KLIK Pain Monitor app, RELIEF study: Erna Michiels (project leader, received grant for this project from ZonMw), Martha Grootenhuis (PI Psycho-oncology), Wim Tissing (PI Supportive Care), Sasja Schepers (post doc), Marloes van Gorp (post doc), Isabel Hooijman (master student), Julia Simon (PhD student). Julia expects to receive her PhD on the results of the app research in spring 2023.
Read more: Pain management in the domestic situation not always optimal (Simon et al., 2020) - Prinses Máxima Centrum - Research (prinsesmaximacentrum.nl)