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


CONCLUSIONS
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.
Department of Anthropology, University of Cincinnati College of Arts and Sciences, Cincinnati, Ohio; Department of Family and Community Medicine, University of Cincinnati College of Medicine, Cincinnati, Ohio. Electronic address: jeffrey.jacobson@uc.edu.
C Jeffrey
CJ
Jacobson
Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio; Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Susmita
S
Kashikar-Zuck
Division of Rheumatology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Jennifer
J
Farrell
Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Kimberly
K
Barnett
Department of Anesthesiology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Ken
K
Goldschneider
Department of Pediatrics, Emory University School of Medicine, AFLAC Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, Georgia.
Carlton
C
Dampier
Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Natoshia
N
Cunningham
Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Lori
L
Crosby
Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio; Division of Rheumatology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio; James M. Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Esi Morgan
EM
DeWitt
D000293:Adolescent; D002648:Child; D059350:Chronic Pain / Q000523:psychology*; D016208:Databases, Factual; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010147:Pain Measurement / Q000379:methods*; D010290:Parents; D011594:Psychometrics / Q000379:methods; D036301:Qualitative Research; D057566:Self Report
Child; PROMIS; pain assessment; patient-reported outcomes; qualitative; self-report