My PhD research focused on the assessment of pain in children and young people with Juvenile Idiopathic Arthritis (JIA). My research was mainly qualitative and aimed to explore and develop different approaches to make pain assessment better for this group of patients, particularly focusing on incorporating new mobile technologies.
Pain is particularly difficult to assess in children and young people with JIA because the qualities of pain regularly change and these fluctuations are unpredictable. Furthermore, children and young people find the concept of pain abstract in itself and even more difficult to communicate to other people involved in managing musculoskeletal pain such as healthcare professionals and/or other family members. The tools available to assess pain currently limit what we know about the relationship of pain in JIA because they are unable to capture the complexities of pain reliably and accurately.
My research predominantly aimed to develop a new mHealth multi-dimensional monitor of pain for children and young people with JIA to remotely assess their pain at home, called My Pain Tracker. Remote assessments of pain using new technologies such as smartphones or iPads offer several advantages compared to uni-dimensional paper-based assessments. For example, digital remote multi-dimensional assessments are much more comprehensive and allow for regular assessment of complex relationships (reducing the influence of recall bias on pain reports). They can also support remote data transfer which is becoming increasingly important to accommodate as health services are taking a more digital approach to care.
As part of developing My Pain Tracker, I conducted a systematic review in which I compared the selection, administration and interpretation of the most commonly used pain scales with children in chronic pain. This was necessary to identify the current, most widely accepted approaches to pain assessment in children with long-term pain and to evaluate the methods used to frame such assessments. The findings of my review have been pivotal, demonstrating that there is no consensus on any aspect of pain assessment administration. The implications of this for My Pain Tracker research meant that there was no strong evidence upon which to base administrative or scoring decisions for this tool.
The problem of poor pain assessment is not exclusively due to inconsistent measurement approaches. Whilst observing clinical consultations between JIA patients and healthcare professionals as part of my PhD, anecdotal evidence suggested that some healthcare professionals found pain assessment with these patients difficult. Subsequently, some professionals were reluctant to have conversations with their patients about pain because they did not know how to ask or what to do with this information. This led to the development of a qualitative study exploring healthcare professionals’ perceptions about the role of pain in JIA and the personal models of illness these professionals held. Analysed using framework analysis, data highlighted a number of barriers which were preventing pain assessment and pain management in clinics such as limited time and resources to assess and treat pain. Here, we realised that My Pain Tracker could potentially be a useful tool for clinicians to efficiently and comprehensively explore pain symptoms in their patients with JIA and may help as an aid in conversations about pain with children and young people.
The final studies of my PhD concerned testing the usability, acceptability and feasibility of different administrative patterns for My Pain Tracker. In one of these studies, children and young people with JIA used My Pain Tracker for twelve weeks to collect pain data at home. We used this data to explore whether the timing of momentary assessments of pain had an impact on pain levels or pain interference (a phenomenon known as ‘measurement reactivity’). This study aimed to identify the most suitable timing and frequency of My Pain Tracker administration for children and young people with JIA and also generated theory which could potentially underpin administrative guidelines for other mHealth multidimensional pain assessment tools for children with long-term, musculoskeletal conditions.
My post-doctoral research will aim to implement the findings from my PhD research and start to work towards changing the way pain is assessed in paediatric rheumatology settings and clinical practice. I hope to use the findings from my PhD about how children and young people want their pain to be assessed and communicated about in clinical settings, to develop resources and materials which help healthcare professionals to assess pain better for this group. This will lead to better clinical communication about pain symptoms and better management of pain symptoms for patients with JIA in the future.