App provides hope for sufferers of chronic pancreatitis

‘On a scale of one to ten, how much does it hurt?’

This is a question many of us have been asked at some point in our lives by well-meaning health professionals. But pain is a complex experience, and often cannot be neatly described by a one-dimensional scoring system.

This is even more so for sufferers of chronic pain, whose symptoms may range from bearable to completely intolerable depending on a range of factors.

As a surgeon, Professor John Windsor has often seen patients in severe pain, but none more so than people with chronic pancreatitis – one of the most painful abdominal conditions that can be experienced.

“My chronic pain patients are often shunned and don’t get sufficient care. They can be seen as drug seekers, not resilient, not doing enough for themselves and just dependent. This is partly because of the inherent difficulties in treating chronic pain.”

This perspective inspired John and the team at the University of Auckland’s Surgical and Translational Research (STaR) Centre to begin a project to assess the pain of sufferers of chronic pancreatitis more accurately, with the hope of improving their quality of life and allowing their physicians to understand their condition more fully.

According to Dr Windsor, “In deciding on how best to manage patients, it is important to take into account the many facets of pain, including the pattern, the duration, the associated symptoms, the psychological and economic impact, and the effect on quality of life and functioning.”

To capture all of these dimensions, Dr Windsor and the team including Dr Keith Teo, surgical registrar and Natalie Tuck (specialist) at the StaR Centre began work on a full Comprehensive Pain Assessment tool (COMPAT) for sufferers of chronic pancreatitis, in order to provide a better assessment of pain.

“We wanted to provide a tool that would be both helpful in recording their experience, detecting changes with different treatment strategies, and communicating this to those caring for them.”

The first phase of the project involved the creation of a questionnaire, which health professionals could use to assess patients with chronic pancreatitis. But there was a problem. The COMPAT questionnaire took up to 30 minutes to complete, which is too long in a busy clinical setting such as a GP or hospital clinic. This resulted in the development and testing of a short form of the questionnaire, COMPAT-SF, comprised of just six questions covering five pain domains.

The next stage, with the generous support of The Gut Foundation, was to fund the development of a web-based app that would allow the patient to record their pain experience over time and in response to changes in circumstance, such as a new drug treatment. This work was done at the National Institute of Health Innovation, in the School of Public Health at the University of Auckland.

The beta version of the COMPAT-SF app has since been reviewed by pain specialists worldwide and has been met with significant enthusiasm. Suggestions from these specialists have been incorporated into the next version, which will also be made available via Android and iOS for smartphones.

One of the important features of the newest version is that patients can nominate their doctor to receive the information they input into the COMPAT-SF app. A clinician dashboard has been also added to the app, which allows a review of pain experiences for all their patients. Additionally, with the patient’s consent, their data can be made available for clinical trials.

Now, Dr Windsor and the team are looking for further investment to help build educational material and self-help aids in the app. They hope that COMPAT-SF will make chronic pancreatitis patients have more effective interactions with pain services, and ultimately, improve their quality of life.