Using an Electronic Pain Diary to Better Understand Pain in Children and Adolescents with Arthritis

Abstract

Summary Aim: To explore the pain experience of youths (9–18 years old) with juvenile idiopathic arthritis, using a real-time data capture electronic pain diary. Materials & methods: A descriptive study design with repeated measures was used. A total of 76 youths, aged 9–18 years old with juvenile idiopathic arthritis were recruited from a Canadian pediatric tertiary care center and asked to record their pain three times a day for 2 weeks using the e-Ouch^© pain diary. Results: On average, participants reported mild levels of pain intensity, unpleasantness and interference, as well as stiffness and mild-to-moderate levels of fatigue. Interference of stiffness and pain with activities of daily living were significantly higher in the morning versus the afternoon and evening; while fatigue was significantly higher in the morning and evening compared with the afternoon. Conclusion: Real-time data capture approaches can be used enable a better understanding of how pain and other symptoms in youths with juvenile idiopathic arthritis change within and across days, and how best to treat them. Valuable next steps include incorporating the e-Ouch pain diary into an everyday clinical setting to measure patient outcomes.

Acknowledgements

The authors would like to thank all of the adolescents who enthusiastically agreed to participate in these studies.

Financial & competing interests disclosure

The authors would like to acknowledge PalmOne and Rogers Wireless, who donated Tungsten W™ for use in these studies, and the Department of Anesthesia and Pain Medicine at The Hospital for Sick Children, who financially supported the software (MobileVB and VB) for the diaries. Funding is gratefully acknowledged from the University of Toronto Center for the Study of Pain AstraZeneca Award. JN Stinson‘s doctoral work was supported by a Canadian Nurses Foundation/Hospital for Sick Children/Canadian Institutes of Health Research Doctoral Fellowship, Hospital for Sick Children Clinician Scientist Training Fellowship, Pain in Child Health CIHR Strategic Training Program, and funding from a Premier‘s Research Excellence Award to BJ Stevens. BM Feldman and PJ McGrath hold Canada Research Chairs. BJ Stevens holds the Signy Hildur Eaton Chair in Paediatric Nursing Research at the Hospital for Sick Children. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

Ethical conduct of research

The authors state that they have obtained appropriate institutional review board approval or have followed the principles outlined in the Declaration of Helsinki for all human or animal experimental investigations. In addition, for investigations involving human subjects, informed consent has been obtained from the participants involved.

Additional information

Funding

The authors would like to acknowledge PalmOne and Rogers Wireless, who donated Tungsten W™ for use in these studies, and the Department of Anesthesia and Pain Medicine at The Hospital for Sick Children, who financially supported the software (MobileVB and VB) for the diaries. Funding is gratefully acknowledged from the University of Toronto Center for the Study of Pain AstraZeneca Award. JN Stinson‘s doctoral work was supported by a Canadian Nurses Foundation/Hospital for Sick Children/Canadian Institutes of Health Research Doctoral Fellowship, Hospital for Sick Children Clinician Scientist Training Fellowship, Pain in Child Health CIHR Strategic Training Program, and funding from a Premier’s Research Excellence Award to BJ Stevens. BM Feldman and PJ McGrath hold Canada Research Chairs. BJ Stevens holds the Signy Hildur Eaton Chair in Paediatric Nursing Research at the Hospital for Sick Children. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript.