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Pain as a quality of care measure in juvenile idiopathic arthritis: One step forward, but is it the best foot? Comment on the article by Lovell et al

We appreciate the long overdue recognition of the clinical importance of pain in the care of childhood arthritis evidenced by Lovell et al in their recent article published in Arthritis Care & Research (1). In contrast with earlier undertreatment and under-recognition of pain, the past decade has witnessed an increasing organizational commitment to help ensure that pain in children is prevented and treated whenever possible (2). Lovell et al recommend assessment of “arthritis-related pain” as a quality of care measure in the treatment of children with juvenile idiopathic arthritis (JIA); they suggest that pain assessment, along with other quality measures, should be routinely implemented in pediatric rheumatology practices as a means of tracking outcomes and generating quality improvement indices. However, additional commentary seems warranted with regard to pain as an index of quality of disease control. The recommended quality care benchmark that at least 80% of patients with JIA are asked about pain using “any validated, reliable, age-appropriate tool” during clinic visits fails to provide guidance as to the selection of an appropriate tool. Given that pain assessment in children contains nuances that, if overlooked, may result in suboptimal assessment and care (3), the absence of specific guidance is a concerning oversight. Providers should be strongly encouraged to obtain self-report of pain in children cognitively able to do so. Most children as young as 5 years of age are capable of validly self-reporting at least current pain if presented with an age-appropriate pain scale (3). With children younger than 5 years, and those who have cognitive or verbal communication deficits, pain assessment is more challenging and requires selecting an observational measure of pain (4). The same pain scale should be used with the child each time to allow for longitudinal comparison. Based on recent psychometric reviews of pediatric pain scales (4,5), we recommend the following measures: for age 8, the Numeric Rating Scale (available at URL: www.usask.ca/childpain/NRS/); for verbal children 5 years of age, including those ages 8 years who do not understand the Numeric Rating Scale, the Faces Pain ScaleRevised (available at URL: www.painsourcebook.ca); and for children unable to self-report pain, the FLACC scale (for normally developing children, available at URL: http://pain consortium.nih.gov/pain_scales/FLACCScale.pdf) or the Non-Communicating Children’s Pain Checklist-Revised (for children ages 3–18 years with cognitive deficits, available at URL: http://pediatricpain.ca/files/02/78/NCCPCR_ 200901.pdf). Unfortunately, only pain intensity was recommended as a quality of care measure by Lovell et al. Although pain intensity is a sensitive measure for evaluating pain treatment outcomes (3), other dimensions may yield a more complete understanding of pain without unduly burdening health care providers. For example, inquiring about the frequency of days with pain, location of the pain, or how much pain has bothered the child in the past week also are clinically relevant questions that provide a richer assessment of the quality of pain management. Further, if pain is endorsed, a determination of the extent of pain interference in physical, academic, and social activities is needed to inform care decisions. Children with JIA reporting minimal pain may nevertheless be quite disabled by their pain, whereas others with intense pain may be able to sustain age-appropriate activities without interruption. Although Lovell et al recommend quality measures assessing health-related quality of life and functioning, these measures may not be sensitive to pain-related activity limitations. The Pediatric Pain Interference Scale is recommended for evaluating pain interference in daily activities; it is a recently developed 8-item measure validated on a sample of more than 3,000 children (6). This measure, along with questions for evaluating other important dimensions of pain, is included as part of a brief pain assessment tool for use in pediatric rheumatology clinics that the authors have helped develop and pilot through the Childhood Arthritis and Rheumatology Research Alliance (7). Results of this work when available will mesh nicely with the recommendations of Lovell et al by establishing a more comprehensive yet practical pain assessment tool to be used as part of quality disease care for children with JIA. A final point for consideration is whether the categorization of pain as a quality measure for disease control is appropriate. Pain is a multidimensional subjective experience that does not have a one-to-one correspondence with disease activity and may be present in children with mild or inactive disease (8). Therefore, it may be more appropriate to classify pain assessment in a category of its own as a measure of comprehensive, quality care for patients with JIA. Assembling initial recommendations for quality care measures in the treatment of JIA to enhance excellence in clinical care is a laudable effort. We hope to complement the work of Lovell et al by suggesting how contemporary pain research can help inform the selection and conceptualization of pain measures when used as indices of quality of care.