We present the development of a standardized measure, SUPER-KIDZ, to assess pain in children and youth presenting to rheumatology practices. This measure is the product of a validated iterative process that consisted of a 2-stage Delphi survey followed by a consensus conference using nominal group technique. The self- and proxy-report measures were evaluated for feasibility of administration using paper, laptop and handheld-based mediums. We found that either paper or computer-based administration of the SUPER-KIDZ pain measures is clinically feasible and acceptable to patients and health care providers.
CARRA members generally agreed with the larger pediatric pain literature (and specifically PedIMMPACT recommendations on important pain dimensions to assess in practice. In particular, characteristics of pain (intensity, location, frequency, and duration), known pain modifiers (cognitive/affective variables) and consequences (functional limitations) were identified as most highly important to assess in pediatric rheumatology practice. This was generally irrespective of diagnosis or type of visit (initial versus follow-up). Attending to these aspects of a child's pain presentation is known to be instrumental for identifying patients at risk of enduring physical and/or emotional disability, selecting pain interventions, and monitoring treatment response . However, the multidimensional assessment of pain if often omitted or inconsistently applied in pediatric rheumatology practices due to various perceived barriers (e.g., time) despite pain assessment being regarded as a quality care indicator for pediatric rheumatology . It is hoped that the brief consensus pain measure developed during the present study ultimately will be helpful for ensuring quality care in pediatric rheumatology practice while providing clinician-friendly data on what is viewed as important aspects of a child's pain experience.
In order to determine a clinically feasible method for routinely implementing the SUPER-KIDZ measure in pediatric rheumatology practice, the present study compared three different mediums for assessment delivery (paper, computer, and handheld device). In general, electronic approaches to self-report assessment previously have been found to be well-regarded by pediatric and adult respondents and to have improved validity over paper-based methods [22–24]. Use of electronic assessment methods also naturally integrate with other forms of health information technology (e.g., electronic health records) and thus fit within the vision for contemporary pediatric medicine . Results of the present study suggested that although use of handheld devices or computers had advantages for pain assessment, there were potential problems as well. In particular, use of a handheld device was perceived as burdensome to some participants due to a small screen size, technical problems, and complexity. Further, data recorded on the handheld device occasionally were not wirelessly transferred to an online database as intended, resulting in missing data, which could be problematic in practice. In addition, although rheumatologists preferred viewing computer-based pain assessment reports in general, they also responded favorably to viewing raw answers on a paper-based form. Thus, the optimal medium for implementing pain assessment in pediatric rheumatology practice may vary depending on the technology available and provider preference.
Our study has several limitations that may temper interpretation of results and conclusions. During Phase 1, the response rate of CARRA members varied from 46-63% and therefore study data may not be fully representative of all members. Despite using standardized consensus methodologies to establish a comprehensive but brief measure, important items may have been left off the final instrument that may limit the usefulness of the tool in certain contexts. Furthermore, SUPER-KIDZ was tested for feasibility only; evaluation of predictive utility and responsiveness is required before wide scale implementation can be recommended. Future studies are planned with this focus.