Qualitative Evaluation of Pediatric Pain Behavior, Quality, and Intensity Item Candidates and the PROMIS Pain Domain Framework in Children With Chronic Pain

• Type of Material: Article
• Authors: C. Jeffrey Jacobson, University of Cincinnati; Susmita Kashikar-Zuck, University of Cincinnati; Jennifer Farrell, Cincinnati Children’s Hospital Medical Center; Kimberly Barnett, Cincinnati Children’s Hospital Medical Center; Ken Goldschneider, Cincinnati Children’s Hospital Medical Center; Carlton Dampier, Emory University; Natoshia Cunningham, Cincinnati Children’s Hospital Medical Center; Lori Crosby, Cincinnati Children’s Hospital Medical Center; Esi Morgan DeWitt, University of Cincinnati
• Language: English
• Date: 2015-12-01
• Publisher: Elsevier
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2015 American Pain Society.
• License: Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1016/j.jpain.2015.08.007
• Title of Journal or Parent Work: Journal of Pain
• ISSN: 1526-5900
• Volume: 16
• Issue: 12
• Start Page: 1243
• End Page: 1255
• Grant/Funding Information: PROMIS II was funded by cooperative agreements with a Statistical Center (Northwestern University, PI: David Cella, PhD, 1U54AR057951), a Technology Center (Northwestern University, PI: Richard C. Gershon, PhD, 1U54AR057943), a Network Center (American Institutes for Research, PI: Susan (San) D. Keller, PhD, 1U54AR057926) and thirteen Primary Research Sites which may include more than one institution.; The Patient-Reported Outcomes Measurement Information System (PROMIS) is an NIH Roadmap initiative to develop a computerized system measuring PROs in respondents with a wide range of chronic diseases and demographic characteristics.; For additional information, please see the full article.
• Keywords: Science & Technology; Neurosciences; Life Sciences & Biomedicine; Neurosciences & Neurology; qualitative; patient-reported outcomes; pain assessment; Clinical Neurology; self-report; child
• Research Categories: Biology, Neuroscience; Health Sciences, Medicine and Surgery

Abstract

As initial steps in a broader effort to develop and test pediatric pain behavior and pain quality item banks for the Patient-Reported Outcomes Measurement Information System (PROMIS), we used qualitative interview and item review methods to 1) evaluate the overall conceptual scope and content validity of the PROMIS pain domain framework among children with chronic/recurrent pain conditions, and 2) develop item candidates for further psychometric testing. To elicit the experiential and conceptual scope of pain outcomes across a variety of pediatric recurrent/chronic pain conditions, we conducted 32 semi-structured individual and 2 focus-group interviews with children and adolescents (8-17 years), and 32 individual and 2 focus-group interviews with parents of children with pain. Interviews with pain experts (10) explored the operational limits of pain measurement in children. For item bank development, we identified existing items from measures in the literature, grouped them by concept, removed redundancies, and modified the remaining items to match PROMIS formatting. New items were written as needed and cognitive debriefing was completed with the children and their parents, resulting in 98 pain behavior (47 self, 51 proxy), 54 quality, and 4 intensity items for further testing. Qualitative content analyses suggest that reportable pain outcomes that matter to children with pain are captured within and consistent with the pain domain framework in PROMIS. Perspective PROMIS pediatric pain behavior, quality, and intensity items were developed based on a theoretical framework of pain that was evaluated by multiple stakeholders in the measurement of pediatric pain, including researchers, clinicians, and children with pain and their parents, and the appropriateness of the framework was verified.