“Asking too much?”: A randomised N-of-1 trial exploring patient preferences and measurement reactivity to frequent use of remote multi-dimensional pain assessments in children and young people with Juvenile Idiopathic Arthritis

Background
Remote monitoring of pain using multi-dimensional mobile health (mHealth) assessment tools is increasingly being adopted into paediatric pain studies and in clinical pain care. This assessment method is valuable because it is challenging to comprehensively capture pain histories, particularly in children and young people with complex diseases where pain can be multisite and relapsing-remitting, such as Juvenile Idiopathic Arthritis [JIA]. With the growth of mHealth measures and more frequent assessment, it is important to explore patient preferences for the timing and frequency of administration of such tools, as well as consider whether certain administrative patterns can directly impact upon children’s pain experiences.
Objectives
To explore the feasibility and influence (in terms of objective and subjective measurement reactivity) of several time-sampling strategies in remote multi-dimensional pain reporting using My Pain Tracker (MPT) with children and young people with JIA.
Methods
An N-of-1 trial was conducted in a subset of children and young people with JIA and their parents recruited to a UK cohort study, The Childhood Arthritis Prospective Study. Children were allocated to one of four groups. Each group followed a different schedule of completion of MPT for eight consecutive weeks. Each schedule included two blocks, each comprising four different randomised time-sampling strategies, with each strategy occurring once within each four week block. Children completed MPT according to time-sampling strategies; once-a-day, twice-a-day, once-a-week and as-and-when pain was experienced. Adherence to each strategy was calculated. Participants completed The PROMIS Pain Interference Scale at the end of each week to assess objective reactivity. Differences in pain interference scores between time-sampling strategies were assessed graphically and using Friedman tests. Children, young people and their parents took part in a semi-structured interview about their preferences for different time-sampling strategies and to explore subjective reactivity.
Results
Fourteen children and young people (7-16 years) and their parents participated. Adherence to pain reporting was higher in less intense (once-a-week=62.5%) compared to more intense time-sampling strategies (twice-a-day=37.8%). There were no statistically significant differences in pain interference scores between sampling strategies. Qualitative findings from interviews suggested that children preferred once-a-day (42.9%) and as-and-when pain reporting (42.9%). Creating routine was one of the most important factors for successful reporting, whilst still ensuring that comprehensive information about recent pain was captured. Some children reported perceived changes in mood and fatigue in response to intense reporting.
Conclusions
Once-a-day pain reporting provides rich contextual information. Although patients were less adherent to this preferred sampling strategy, once-a-day reporting still provides more frequent assessment opportunities compared to other less intense or over-burdensome schedules. Important issues for the design of studies and care incorporating momentary assessment techniques were identified. We demonstrate that patient reporting preferences are key to accommodate and are important for research and care where long-term engagement with tools and data capture quality is key. Our findings support regular and frequent administration of such tools to capture pain patterns in children and young people with JIA, using daily reporting methods where possible.