We know that pain is one of the most common and distressing symptoms for children with cancer. This pain results from many different aspects of cancer and its treatment, including things like chemotherapy, surgeries and repeated needle pokes with blood work and other tests. Pain can negatively impact on many aspects of a child’s life. To best treat and reduce the impact of pain on their lives we needed a reliable and trustworthy way to frequently collect data about their pain in their everyday environments (e.g., hospital, home and school settings). Currently there are not a lot of tools for reporting cancer pain, and most of them ask kids to recall what their pain is like over weeks to months, which we know is not reliable. To help health care providers better understand the nature of cancer pain in children and how best to treat it, my research group built on an electronic pain assessment tool I had developed for kids with arthritis during my PhD. In order to refine the tool for kids with cancer we enlisted the help of experts in paediatric oncology and pain from around the world and used a consensus meeting. Pain Squad is a multidimensional smartphone-based pain assessment application (app) for children and adolescents with cancer (8 to 18 years of age). Check out a video on the Pain Squad App here.
To make sure the app was engaging for kids with cancer we “gamified” pain journaling by using a law-enforcement theme for the app, having kids play the role of officers and providing game-based rewards for logging pain assessments. Research has shown that keeping people engaged in completing symptom diaries is difficult. Because of the fatigue that kids with cancer deal with during treatment, we expected that collecting pain data from them on a routine basis would be problematic. We suspected we would need to try something new to gather these data. In the past, researchers incentivised participants by paying them to complete diary entries. We wanted to find a way to motivate kids with cancer to complete the diaries using gamification instead of money. By gamifying the process of recording pain, we were able to see 90% compliance with pain assessment completion compared to 70% with monetary rewards.
Our next steps were to evaluate the construct validity (including responsiveness), reliability and feasibility of the Pain Squad in children and adolescents with cancer, using two descriptive studies with repeated measures. Participants (8-18 years) undergoing cancer treatment were drawn from 4 paediatric cancer centres. In the first study, 92 participants used the Pain Squad app to self-report their level of pain twice daily for 2 weeks, to assess the construct validity and reliability of reports obtained using the app. In the second study, 14 participants recorded their level of pain twice a day for 1 week before and 2 weeks after cancer-related surgery to determine app responsiveness to change in pain. Participants in both studies completed multiple measures to determine the construct validity and feasibility of the Pain Squad app. Correlations between the average weekly pain ratings on the Pain Squad app and the recalled least, average, and worst weekly pain ratings were moderate to high. Correlations with health-related quality of life and pain coping (measured with PedsQL Inventory 4.0, PedsQL Cancer Module and Pain Coping Questionnaire) were low as predicted. The app showed excellent internal consistency. Pain ratings changed due to surgery, with large effect sizes between baseline and the first week post-surgery, and small effect sizes between baseline and the second week post-surgery. At the end of the study we talked to kids about their engagement with the app, they told us that they really enjoyed participating in the game. They also thought that Pain Squad was important in allowing them to record their pain and talk to their health teams about problems they experienced, even when they might be reluctant or scared to do so.
Several limitations of the study warrant a mention. First, the Pain Squad app collected pain data in the morning and evening (via pre-programmed alarms) and therefore we may have missed important fluctuations in pain versus using random alarms throughout the day. Additionally, we were not successful in recruiting the desired number of participants for Study 2 as most of them had surgery within the week of diagnosis, which we know is a period of high stress for cancer patients. Finally, Study 2 participants completed fewer pain assessments over the 3-week period (52.6%) compared to study 1 (two week period with 72%), which was likely due to more severe pain, fatigue and bed-rest as well as being asked to track pain over a longer period of time.
Our study showed that the Pain Squad App has evidence of construct validity, reliability and feasibility in children and adolescents with cancer. Use of real-time data capture approaches should be considered in future studies of childhood cancer pain. Furthermore, the model of real-time pain assessment described can be used in both clinical and research contexts to evaluate the effectiveness of a wide range of pain treatments, including pharmacological, physical, and psychological modalities in the context of childhood cancer pain.
About Jennifer Stinson
Dr Stinson is the Mary Jo Haddad Nursing Research Chair in Child Health and Nurse Practitioner in the Chronic Pain Program at The Hospital for Sick Children in Toronto. She is also as Associate Professor of Nursing at the Lawrence S. Bloomberg Faculty of Nursing at the University of Toronto.
 Amy S. Lewandowski, Tonya M. Palermo, H. Lester Kirchner, and Dennis Drotar, (2009) Comparing Diary and Retrospective Reports of Pain and Activity Restriction in Children and Adolescents with Chronic Pain Conditions Clin J Pain; 25(4): 299–306. doi: 10.1097/AJP.0b013e3181965578