Quality of Life Research

, Volume 26, Issue 3, pp 565–586 | Cite as

Establishing clinical meaning and defining important differences for Patient-Reported Outcomes Measurement Information System (PROMIS®) measures in juvenile idiopathic arthritis using standard setting with patients, parents, and providers

  • Esi M. MorganEmail author
  • Constance A. Mara
  • Bin Huang
  • Kimberly Barnett
  • Adam C. Carle
  • Jennifer E. Farrell
  • Karon F. Cook



Patient-Reported Outcomes Measurement Information System (PROMIS) measures are used increasingly in clinical care. However, for juvenile idiopathic arthritis (JIA), scores lack a framework for interpretation of clinical severity, and minimally important differences (MID) have not been established, which are necessary to evaluate the importance of change.


We identified clinical severity thresholds for pediatric PROMIS measures of mobility, upper extremity function (UE), fatigue, and pain interference working with adolescents with JIA, parents of JIA patients, and clinicians, using a standard setting methodology modified from educational testing. Item parameters were used to develop clinical vignettes across a range of symptom severity. Vignettes were ordered by severity, and panelists identified adjacent vignettes considered to represent upper and lower boundaries separating category cut-points (i.e., from none/mild problems to moderate/severe). To define MIDs, panelists reviewed a full score report for the vignettes and indicated which items would need to change and by how much to represent “just enough improvement to make a difference.”


For fatigue and UE, cut-points among panels were within 0.5 SD of each other. For mobility and pain interference, cut-scores among panels were more divergent, with parents setting the lowest cut-scores for increasing severity. The size of MIDs varied by stakeholders (parents estimated largest, followed by patients, then clinicians). MIDs also varied by severity classification of the symptom.


We estimated clinically relevant severity cut-points and MIDs for PROMIS measures for JIA from the perspectives of multiple stakeholders and found notable differences in perspectives.


PROMIS Patient-reported outcomes Item response theory (IRT) Psychometric methods Juvenile idiopathic arthritis 



We are grateful for the contributions of the study participants, patients, parents, and clinicians who shared their time and insights to advance this work. We acknowledge Dr. Ryoungsun Park who developed the R-code for this work as part of a consultancy agreement with Northwestern University.


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. PROMIS II was funded by cooperative agreements with a Statistical Center (Northwestern University, PI: David Cella, Ph.D., 1U54AR057951), a Technology Center (Northwestern University, PI: Richard C. Gershon, Ph.D., 1U54AR057943), a Network Center (American Institutes for Research, PI: Susan (San) D. Keller, Ph.D., 1U54AR057926) and thirteen Primary Research Sites which may include more than one institution (State University of New York, Stony Brook, PIs: Joan E. Broderick, Ph.D. and Arthur A. Stone, Ph.D., 1U01AR057948; University of Washington, Seattle, PIs: Heidi M. Crane, MD, MPH, Paul K. Crane, MD, MPH, and Donald L. Patrick, Ph.D., 1U01AR057954; University of Washington, Seattle, PIs: Dagmar Amtmann, Ph.D. and Karon Cook, Ph.D., 1U01AR052171; University of North Carolina, Chapel Hill, PI: Darren A. DeWalt, MD, MPH, 2U01AR052181; Children’s Hospital of Philadelphia, PI: Christopher B. Forrest, MD, Ph.D., 1U01AR057956; Stanford University, PI: James F. Fries, MD, 2U01AR052158; Boston University, PIs: Stephen M. Haley, Ph.D. and David Scott Tulsky, Ph.D. (University of Michigan, Ann Arbor), 1U01AR057929; University of California, Los Angeles, PIs: Dinesh Khanna, MD and Brennan Spiegel, MD, MSHS, 1U01AR057936; University of Pittsburgh, PI: Paul A. Pilkonis, Ph.D., 2U01AR052155; Georgetown University, PIs: Carol. M. Moinpour, Ph.D. (Fred Hutchinson Cancer Research Center, Seattle) and Arnold L. Potosky, Ph.D., U01AR057971; Children’s Hospital Medical Center, Cincinnati, PI: Esi M. Morgan DeWitt, MD, MSCE, 17 1U01AR057940; University of Maryland, Baltimore, PI: Lisa M. Shulman, MD, 1U01AR057967; and Duke University, PI: Kevin P. Weinfurt, Ph.D., 2U01AR052186). NIH Science Officers on this project have included Deborah Ader, Ph.D., Vanessa Ameen, MD, Susan Czajkowski, Ph.D., Basil Eldadah, MD, Ph.D., Lawrence Fine, MD, DrPH, Lawrence Fox, MD, Ph.D., Lynne Haverkos, MD, MPH, Thomas Hilton, Ph.D., Laura Lee Johnson, Ph.D., Michael Kozak, Ph.D., Peter Lyster, Ph.D., Donald Mattison, MD, Claudia Moy, Ph.D., Louis Quatrano, Ph.D., Bryce Reeve, Ph.D., William Riley, Ph.D., Ashley Wilder Smith, Ph.D., MPH, Susana Serrate-Sztein, MD, Ellen Werner, Ph.D. and James Witter, MD, Ph.D.


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Copyright information

© Springer International Publishing Switzerland 2016

Authors and Affiliations

  • Esi M. Morgan
    • 1
    • 2
    • 4
    Email author
  • Constance A. Mara
    • 1
    • 3
  • Bin Huang
    • 1
    • 5
  • Kimberly Barnett
    • 2
  • Adam C. Carle
    • 1
    • 7
  • Jennifer E. Farrell
    • 2
  • Karon F. Cook
    • 6
  1. 1.Department of PediatricsUniversity of Cincinnati College of MedicineCincinnatiUSA
  2. 2.Division of RheumatologyCincinnati Children’s Hospital Medical CenterCincinnatiUSA
  3. 3.Behavioral Medicine and Clinical PsychologyCincinnati Children’s Hospital Medical CenterCincinnatiUSA
  4. 4.James M. Anderson Center for Health Systems ExcellenceCincinnati Children’s Hospital Medical CenterCincinnatiUSA
  5. 5.Division of Biostatistics and EpidemiologyCincinnati Children’s Hospital Medical CenterCincinnatiUSA
  6. 6.Department of Medical Social SciencesNorthwestern UniversityChicagoUSA
  7. 7.Department of PsychologyUniversity of Cincinnati College of Arts and SciencesCincinnatiUSA

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