Reconciling Healthcare Professional and Patient Perspectives in the Development of Disease Activity and Response Criteria in Connective Tissue Disease–related Interstitial Lung Diseases

From the Louisiana State University (LSU) Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana, USA; University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital, Toronto, Ontario; Faculty of Social Work, University of Manitoba, Winnipeg, Manitoba, Canada; Louisiana Office of Public Health, Department of Health and Human Services, New Orleans, Louisiana; Division of Rheumatology/Internal Medicine, University of Michigan, Ann Arbor, Michigan; Division of Immunology, Stanford University, Palo Alto, California; and Division of Rheumatology, Mayo Clinic, Rochester, Minnesota, USA. L.A. Saketkoo, MD, MPH, Principal Investigator, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, and LSU Health Sciences Center (LSU-HSC); S. Mittoo, MD, Medical Expert Delphi, University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital; S. Frankel, PhD, MSW, Faculty of Social Work, University of Manitoba; D. LeSage, Patient Research Partner, Louisiana Office of Public Health, Department of Health and Human Services; D. Sarver, Patient Research Partner; K. Phillips, MD, Division of Rheumatology/Internal Medicine, University of Michigan; V. Strand, MD, OMERACT Executive Member, Division of Immunology, Stanford University; E.L. Matteson, MD, Medical Expert Delphi or Patient Investigation Director, Division of Rheumatology, Mayo Clinic. Address correspondence to Dr. Saketkoo, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana 70115, USA. E-mail: ctd.ild[at]gmail.com

From the Louisiana State University (LSU) Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana, USA; University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital, Toronto, Ontario; Faculty of Social Work, University of Manitoba, Winnipeg, Manitoba, Canada; Louisiana Office of Public Health, Department of Health and Human Services, New Orleans, Louisiana; Division of Rheumatology/Internal Medicine, University of Michigan, Ann Arbor, Michigan; Division of Immunology, Stanford University, Palo Alto, California; and Division of Rheumatology, Mayo Clinic, Rochester, Minnesota, USA. L.A. Saketkoo, MD, MPH, Principal Investigator, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, and LSU Health Sciences Center (LSU-HSC); S. Mittoo, MD, Medical Expert Delphi, University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital; S. Frankel, PhD, MSW, Faculty of Social Work, University of Manitoba; D. LeSage, Patient Research Partner, Louisiana Office of Public Health, Department of Health and Human Services; D. Sarver, Patient Research Partner; K. Phillips, MD, Division of Rheumatology/Internal Medicine, University of Michigan; V. Strand, MD, OMERACT Executive Member, Division of Immunology, Stanford University; E.L. Matteson, MD, Medical Expert Delphi or Patient Investigation Director, Division of Rheumatology, Mayo Clinic. Address correspondence to Dr. Saketkoo, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana 70115, USA. E-mail: ctd.ild[at]gmail.com

From the Louisiana State University (LSU) Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana, USA; University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital, Toronto, Ontario; Faculty of Social Work, University of Manitoba, Winnipeg, Manitoba, Canada; Louisiana Office of Public Health, Department of Health and Human Services, New Orleans, Louisiana; Division of Rheumatology/Internal Medicine, University of Michigan, Ann Arbor, Michigan; Division of Immunology, Stanford University, Palo Alto, California; and Division of Rheumatology, Mayo Clinic, Rochester, Minnesota, USA. L.A. Saketkoo, MD, MPH, Principal Investigator, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, and LSU Health Sciences Center (LSU-HSC); S. Mittoo, MD, Medical Expert Delphi, University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital; S. Frankel, PhD, MSW, Faculty of Social Work, University of Manitoba; D. LeSage, Patient Research Partner, Louisiana Office of Public Health, Department of Health and Human Services; D. Sarver, Patient Research Partner; K. Phillips, MD, Division of Rheumatology/Internal Medicine, University of Michigan; V. Strand, MD, OMERACT Executive Member, Division of Immunology, Stanford University; E.L. Matteson, MD, Medical Expert Delphi or Patient Investigation Director, Division of Rheumatology, Mayo Clinic. Address correspondence to Dr. Saketkoo, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana 70115, USA. E-mail: ctd.ild[at]gmail.com

From the Louisiana State University (LSU) Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana, USA; University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital, Toronto, Ontario; Faculty of Social Work, University of Manitoba, Winnipeg, Manitoba, Canada; Louisiana Office of Public Health, Department of Health and Human Services, New Orleans, Louisiana; Division of Rheumatology/Internal Medicine, University of Michigan, Ann Arbor, Michigan; Division of Immunology, Stanford University, Palo Alto, California; and Division of Rheumatology, Mayo Clinic, Rochester, Minnesota, USA. L.A. Saketkoo, MD, MPH, Principal Investigator, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, and LSU Health Sciences Center (LSU-HSC); S. Mittoo, MD, Medical Expert Delphi, University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital; S. Frankel, PhD, MSW, Faculty of Social Work, University of Manitoba; D. LeSage, Patient Research Partner, Louisiana Office of Public Health, Department of Health and Human Services; D. Sarver, Patient Research Partner; K. Phillips, MD, Division of Rheumatology/Internal Medicine, University of Michigan; V. Strand, MD, OMERACT Executive Member, Division of Immunology, Stanford University; E.L. Matteson, MD, Medical Expert Delphi or Patient Investigation Director, Division of Rheumatology, Mayo Clinic. Address correspondence to Dr. Saketkoo, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana 70115, USA. E-mail: ctd.ild[at]gmail.com

From the Louisiana State University (LSU) Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana, USA; University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital, Toronto, Ontario; Faculty of Social Work, University of Manitoba, Winnipeg, Manitoba, Canada; Louisiana Office of Public Health, Department of Health and Human Services, New Orleans, Louisiana; Division of Rheumatology/Internal Medicine, University of Michigan, Ann Arbor, Michigan; Division of Immunology, Stanford University, Palo Alto, California; and Division of Rheumatology, Mayo Clinic, Rochester, Minnesota, USA. L.A. Saketkoo, MD, MPH, Principal Investigator, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, and LSU Health Sciences Center (LSU-HSC); S. Mittoo, MD, Medical Expert Delphi, University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital; S. Frankel, PhD, MSW, Faculty of Social Work, University of Manitoba; D. LeSage, Patient Research Partner, Louisiana Office of Public Health, Department of Health and Human Services; D. Sarver, Patient Research Partner; K. Phillips, MD, Division of Rheumatology/Internal Medicine, University of Michigan; V. Strand, MD, OMERACT Executive Member, Division of Immunology, Stanford University; E.L. Matteson, MD, Medical Expert Delphi or Patient Investigation Director, Division of Rheumatology, Mayo Clinic. Address correspondence to Dr. Saketkoo, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana 70115, USA. E-mail: ctd.ild[at]gmail.com

From the Louisiana State University (LSU) Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana, USA; University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital, Toronto, Ontario; Faculty of Social Work, University of Manitoba, Winnipeg, Manitoba, Canada; Louisiana Office of Public Health, Department of Health and Human Services, New Orleans, Louisiana; Division of Rheumatology/Internal Medicine, University of Michigan, Ann Arbor, Michigan; Division of Immunology, Stanford University, Palo Alto, California; and Division of Rheumatology, Mayo Clinic, Rochester, Minnesota, USA. L.A. Saketkoo, MD, MPH, Principal Investigator, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, and LSU Health Sciences Center (LSU-HSC); S. Mittoo, MD, Medical Expert Delphi, University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital; S. Frankel, PhD, MSW, Faculty of Social Work, University of Manitoba; D. LeSage, Patient Research Partner, Louisiana Office of Public Health, Department of Health and Human Services; D. Sarver, Patient Research Partner; K. Phillips, MD, Division of Rheumatology/Internal Medicine, University of Michigan; V. Strand, MD, OMERACT Executive Member, Division of Immunology, Stanford University; E.L. Matteson, MD, Medical Expert Delphi or Patient Investigation Director, Division of Rheumatology, Mayo Clinic. Address correspondence to Dr. Saketkoo, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana 70115, USA. E-mail: ctd.ild[at]gmail.com

From the Louisiana State University (LSU) Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana, USA; University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital, Toronto, Ontario; Faculty of Social Work, University of Manitoba, Winnipeg, Manitoba, Canada; Louisiana Office of Public Health, Department of Health and Human Services, New Orleans, Louisiana; Division of Rheumatology/Internal Medicine, University of Michigan, Ann Arbor, Michigan; Division of Immunology, Stanford University, Palo Alto, California; and Division of Rheumatology, Mayo Clinic, Rochester, Minnesota, USA. L.A. Saketkoo, MD, MPH, Principal Investigator, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, and LSU Health Sciences Center (LSU-HSC); S. Mittoo, MD, Medical Expert Delphi, University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital; S. Frankel, PhD, MSW, Faculty of Social Work, University of Manitoba; D. LeSage, Patient Research Partner, Louisiana Office of Public Health, Department of Health and Human Services; D. Sarver, Patient Research Partner; K. Phillips, MD, Division of Rheumatology/Internal Medicine, University of Michigan; V. Strand, MD, OMERACT Executive Member, Division of Immunology, Stanford University; E.L. Matteson, MD, Medical Expert Delphi or Patient Investigation Director, Division of Rheumatology, Mayo Clinic. Address correspondence to Dr. Saketkoo, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana 70115, USA. E-mail: ctd.ild[at]gmail.com

From the Louisiana State University (LSU) Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana, USA; University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital, Toronto, Ontario; Faculty of Social Work, University of Manitoba, Winnipeg, Manitoba, Canada; Louisiana Office of Public Health, Department of Health and Human Services, New Orleans, Louisiana; Division of Rheumatology/Internal Medicine, University of Michigan, Ann Arbor, Michigan; Division of Immunology, Stanford University, Palo Alto, California; and Division of Rheumatology, Mayo Clinic, Rochester, Minnesota, USA. L.A. Saketkoo, MD, MPH, Principal Investigator, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, and LSU Health Sciences Center (LSU-HSC); S. Mittoo, MD, Medical Expert Delphi, University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital; S. Frankel, PhD, MSW, Faculty of Social Work, University of Manitoba; D. LeSage, Patient Research Partner, Louisiana Office of Public Health, Department of Health and Human Services; D. Sarver, Patient Research Partner; K. Phillips, MD, Division of Rheumatology/Internal Medicine, University of Michigan; V. Strand, MD, OMERACT Executive Member, Division of Immunology, Stanford University; E.L. Matteson, MD, Medical Expert Delphi or Patient Investigation Director, Division of Rheumatology, Mayo Clinic. Address correspondence to Dr. Saketkoo, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana 70115, USA. E-mail: ctd.ild[at]gmail.com

From the Louisiana State University (LSU) Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana, USA; University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital, Toronto, Ontario; Faculty of Social Work, University of Manitoba, Winnipeg, Manitoba, Canada; Louisiana Office of Public Health, Department of Health and Human Services, New Orleans, Louisiana; Division of Rheumatology/Internal Medicine, University of Michigan, Ann Arbor, Michigan; Division of Immunology, Stanford University, Palo Alto, California; and Division of Rheumatology, Mayo Clinic, Rochester, Minnesota, USA. L.A. Saketkoo, MD, MPH, Principal Investigator, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, and LSU Health Sciences Center (LSU-HSC); S. Mittoo, MD, Medical Expert Delphi, University of Toronto, Interstitial Lung Disease Program, University Health Network/Mount Sinai Hospital; S. Frankel, PhD, MSW, Faculty of Social Work, University of Manitoba; D. LeSage, Patient Research Partner, Louisiana Office of Public Health, Department of Health and Human Services; D. Sarver, Patient Research Partner; K. Phillips, MD, Division of Rheumatology/Internal Medicine, University of Michigan; V. Strand, MD, OMERACT Executive Member, Division of Immunology, Stanford University; E.L. Matteson, MD, Medical Expert Delphi or Patient Investigation Director, Division of Rheumatology, Mayo Clinic. Address correspondence to Dr. Saketkoo, LSU Scleroderma and Sarcoidosis Patient Care and Research Center, LSU Interstitial Lung Disease Program, LSU Health Sciences Center, New Orleans, Louisiana 70115, USA. E-mail: ctd.ild[at]gmail.com