Pediatric to Adult Transition Literature: Scoping Review and Rheumatology Research Prioritization Survey Results

Nicole Bitencourt, Nicole Bitencourt, MD 0000-0001-8848-2478, Department of Pediatrics, Loma Linda University Medical Center; Erica Lawson, MD 0000-0002-9014-0175, Department of Pediatrics, University of California San Francisco Medical Center; John Bridges, MD, MS 0000-0001-8161-5864, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham; Kristine Carandang, PhD, OTR/L 0000-0002-0159-6374, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls; Ela Chintagunta, Grinnell College Class of 2025, Patient Partner, Childhood Arthritis Rheumatology Research Alliance; Peter Chiraseveenuprapund, MD 0000-0002-6551-1384, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego; Kimberly DeQuattro, MD, MM 0000-0001-8339-5666, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems; Y. Ingrid Goh, PhD 0000-0002-5372-2950, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Tzielan C. Lee, MD 0000-0001-5505-8259, Pediatric Rheumatology, Stanford University School of Medicine; Katharine F. Moore, MD, 0000-0001-7094-5745 Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine; Rosemary G. Peterson, MD, MSCE 0000-0002-0959-2343, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin; Jordan E. Roberts, MD, 0000-0002-0976-5697, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital; Tova Ronis, MDCM 0000-0003-3223-5069, Pediatric Rheumatology, Children's National Hospital, Dept of Pediatrics, George Washington University; Rebecca E. Sadun, MD, PhD, 0000-0001-7768-3565, Department of Pediatric and Department of Medicine, Duke University Medical Center; Emily A. Smitherman, MD, MS., 0000-0001-6226-9265, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham; Elizabeth Stringer, MD MSc FRCPC, 0000-0002-1863-2562, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada; Patience H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences; Joyce C. Chang, MD, MSCE 0000-0002-1691-4814, Division of Immunology, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, for the CARRA Transition Workgroup. Conflict of Interest Disclosures: The authors have no conflicts of interest relevant to this article to disclose. Funding/Support: Research reported in this publication did not receive financial support. Statement of Ethics: An Institutional Review Board exemption was obtained from Boston Children's Hospital (protocol number IRB-P00039656) for survey dissemination. Contributors' Statement: All authors contributed to the conception and design, execution or analysis and interpretation of data. All authors revised the manuscript critically, read, and approved the final version. Corresponding Author: Nicole Bitencourt, MD, Loma Linda University Medical Center, Pediatric Rheumatology, Address: 1175 Campus Street, Loma Linda, CA 92354. Email: Nicole_Bitencourt@yahoo.com.
Erica Lawson, Nicole Bitencourt, MD 0000-0001-8848-2478, Department of Pediatrics, Loma Linda University Medical Center; Erica Lawson, MD 0000-0002-9014-0175, Department of Pediatrics, University of California San Francisco Medical Center; John Bridges, MD, MS 0000-0001-8161-5864, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham; Kristine Carandang, PhD, OTR/L 0000-0002-0159-6374, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls; Ela Chintagunta, Grinnell College Class of 2025, Patient Partner, Childhood Arthritis Rheumatology Research Alliance; Peter Chiraseveenuprapund, MD 0000-0002-6551-1384, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego; Kimberly DeQuattro, MD, MM 0000-0001-8339-5666, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems; Y. Ingrid Goh, PhD 0000-0002-5372-2950, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Tzielan C. Lee, MD 0000-0001-5505-8259, Pediatric Rheumatology, Stanford University School of Medicine; Katharine F. Moore, MD, 0000-0001-7094-5745 Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine; Rosemary G. Peterson, MD, MSCE 0000-0002-0959-2343, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin; Jordan E. Roberts, MD, 0000-0002-0976-5697, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital; Tova Ronis, MDCM 0000-0003-3223-5069, Pediatric Rheumatology, Children's National Hospital, Dept of Pediatrics, George Washington University; Rebecca E. Sadun, MD, PhD, 0000-0001-7768-3565, Department of Pediatric and Department of Medicine, Duke University Medical Center; Emily A. Smitherman, MD, MS., 0000-0001-6226-9265, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham; Elizabeth Stringer, MD MSc FRCPC, 0000-0002-1863-2562, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada; Patience H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences; Joyce C. Chang, MD, MSCE 0000-0002-1691-4814, Division of Immunology, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, for the CARRA Transition Workgroup. Conflict of Interest Disclosures: The authors have no conflicts of interest relevant to this article to disclose. Funding/Support: Research reported in this publication did not receive financial support. Statement of Ethics: An Institutional Review Board exemption was obtained from Boston Children's Hospital (protocol number IRB-P00039656) for survey dissemination. Contributors' Statement: All authors contributed to the conception and design, execution or analysis and interpretation of data. All authors revised the manuscript critically, read, and approved the final version. Corresponding Author: Nicole Bitencourt, MD, Loma Linda University Medical Center, Pediatric Rheumatology, Address: 1175 Campus Street, Loma Linda, CA 92354. Email: Nicole_Bitencourt@yahoo.com.
John Bridges, Nicole Bitencourt, MD 0000-0001-8848-2478, Department of Pediatrics, Loma Linda University Medical Center; Erica Lawson, MD 0000-0002-9014-0175, Department of Pediatrics, University of California San Francisco Medical Center; John Bridges, MD, MS 0000-0001-8161-5864, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham; Kristine Carandang, PhD, OTR/L 0000-0002-0159-6374, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls; Ela Chintagunta, Grinnell College Class of 2025, Patient Partner, Childhood Arthritis Rheumatology Research Alliance; Peter Chiraseveenuprapund, MD 0000-0002-6551-1384, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego; Kimberly DeQuattro, MD, MM 0000-0001-8339-5666, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems; Y. Ingrid Goh, PhD 0000-0002-5372-2950, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Tzielan C. Lee, MD 0000-0001-5505-8259, Pediatric Rheumatology, Stanford University School of Medicine; Katharine F. Moore, MD, 0000-0001-7094-5745 Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine; Rosemary G. Peterson, MD, MSCE 0000-0002-0959-2343, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin; Jordan E. Roberts, MD, 0000-0002-0976-5697, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital; Tova Ronis, MDCM 0000-0003-3223-5069, Pediatric Rheumatology, Children's National Hospital, Dept of Pediatrics, George Washington University; Rebecca E. Sadun, MD, PhD, 0000-0001-7768-3565, Department of Pediatric and Department of Medicine, Duke University Medical Center; Emily A. Smitherman, MD, MS., 0000-0001-6226-9265, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham; Elizabeth Stringer, MD MSc FRCPC, 0000-0002-1863-2562, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada; Patience H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences; Joyce C. Chang, MD, MSCE 0000-0002-1691-4814, Division of Immunology, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, for the CARRA Transition Workgroup. Conflict of Interest Disclosures: The authors have no conflicts of interest relevant to this article to disclose. Funding/Support: Research reported in this publication did not receive financial support. Statement of Ethics: An Institutional Review Board exemption was obtained from Boston Children's Hospital (protocol number IRB-P00039656) for survey dissemination. Contributors' Statement: All authors contributed to the conception and design, execution or analysis and interpretation of data. All authors revised the manuscript critically, read, and approved the final version. Corresponding Author: Nicole Bitencourt, MD, Loma Linda University Medical Center, Pediatric Rheumatology, Address: 1175 Campus Street, Loma Linda, CA 92354. Email: Nicole_Bitencourt@yahoo.com.
Kristine Carandang, Nicole Bitencourt, MD 0000-0001-8848-2478, Department of Pediatrics, Loma Linda University Medical Center; Erica Lawson, MD 0000-0002-9014-0175, Department of Pediatrics, University of California San Francisco Medical Center; John Bridges, MD, MS 0000-0001-8161-5864, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham; Kristine Carandang, PhD, OTR/L 0000-0002-0159-6374, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls; Ela Chintagunta, Grinnell College Class of 2025, Patient Partner, Childhood Arthritis Rheumatology Research Alliance; Peter Chiraseveenuprapund, MD 0000-0002-6551-1384, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego; Kimberly DeQuattro, MD, MM 0000-0001-8339-5666, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems; Y. Ingrid Goh, PhD 0000-0002-5372-2950, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Tzielan C. Lee, MD 0000-0001-5505-8259, Pediatric Rheumatology, Stanford University School of Medicine; Katharine F. Moore, MD, 0000-0001-7094-5745 Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine; Rosemary G. Peterson, MD, MSCE 0000-0002-0959-2343, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin; Jordan E. Roberts, MD, 0000-0002-0976-5697, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital; Tova Ronis, MDCM 0000-0003-3223-5069, Pediatric Rheumatology, Children's National Hospital, Dept of Pediatrics, George Washington University; Rebecca E. Sadun, MD, PhD, 0000-0001-7768-3565, Department of Pediatric and Department of Medicine, Duke University Medical Center; Emily A. Smitherman, MD, MS., 0000-0001-6226-9265, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham; Elizabeth Stringer, MD MSc FRCPC, 0000-0002-1863-2562, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada; Patience H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences; Joyce C. Chang, MD, MSCE 0000-0002-1691-4814, Division of Immunology, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, for the CARRA Transition Workgroup. Conflict of Interest Disclosures: The authors have no conflicts of interest relevant to this article to disclose. Funding/Support: Research reported in this publication did not receive financial support. Statement of Ethics: An Institutional Review Board exemption was obtained from Boston Children's Hospital (protocol number IRB-P00039656) for survey dissemination. Contributors' Statement: All authors contributed to the conception and design, execution or analysis and interpretation of data. All authors revised the manuscript critically, read, and approved the final version. Corresponding Author: Nicole Bitencourt, MD, Loma Linda University Medical Center, Pediatric Rheumatology, Address: 1175 Campus Street, Loma Linda, CA 92354. Email: Nicole_Bitencourt@yahoo.com.
Ela Chintagunta, Nicole Bitencourt, MD 0000-0001-8848-2478, Department of Pediatrics, Loma Linda University Medical Center; Erica Lawson, MD 0000-0002-9014-0175, Department of Pediatrics, University of California San Francisco Medical Center; John Bridges, MD, MS 0000-0001-8161-5864, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham; Kristine Carandang, PhD, OTR/L 0000-0002-0159-6374, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls; Ela Chintagunta, Grinnell College Class of 2025, Patient Partner, Childhood Arthritis Rheumatology Research Alliance; Peter Chiraseveenuprapund, MD 0000-0002-6551-1384, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego; Kimberly DeQuattro, MD, MM 0000-0001-8339-5666, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems; Y. Ingrid Goh, PhD 0000-0002-5372-2950, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Tzielan C. Lee, MD 0000-0001-5505-8259, Pediatric Rheumatology, Stanford University School of Medicine; Katharine F. Moore, MD, 0000-0001-7094-5745 Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine; Rosemary G. Peterson, MD, MSCE 0000-0002-0959-2343, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin; Jordan E. Roberts, MD, 0000-0002-0976-5697, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital; Tova Ronis, MDCM 0000-0003-3223-5069, Pediatric Rheumatology, Children's National Hospital, Dept of Pediatrics, George Washington University; Rebecca E. Sadun, MD, PhD, 0000-0001-7768-3565, Department of Pediatric and Department of Medicine, Duke University Medical Center; Emily A. Smitherman, MD, MS., 0000-0001-6226-9265, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham; Elizabeth Stringer, MD MSc FRCPC, 0000-0002-1863-2562, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada; Patience H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences; Joyce C. Chang, MD, MSCE 0000-0002-1691-4814, Division of Immunology, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, for the CARRA Transition Workgroup. Conflict of Interest Disclosures: The authors have no conflicts of interest relevant to this article to disclose. Funding/Support: Research reported in this publication did not receive financial support. Statement of Ethics: An Institutional Review Board exemption was obtained from Boston Children's Hospital (protocol number IRB-P00039656) for survey dissemination. Contributors' Statement: All authors contributed to the conception and design, execution or analysis and interpretation of data. All authors revised the manuscript critically, read, and approved the final version. Corresponding Author: Nicole Bitencourt, MD, Loma Linda University Medical Center, Pediatric Rheumatology, Address: 1175 Campus Street, Loma Linda, CA 92354. Email: Nicole_Bitencourt@yahoo.com.
Peter Chiraseveenuprapund, Nicole Bitencourt, MD 0000-0001-8848-2478, Department of Pediatrics, Loma Linda University Medical Center; Erica Lawson, MD 0000-0002-9014-0175, Department of Pediatrics, University of California San Francisco Medical Center; John Bridges, MD, MS 0000-0001-8161-5864, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham; Kristine Carandang, PhD, OTR/L 0000-0002-0159-6374, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls; Ela Chintagunta, Grinnell College Class of 2025, Patient Partner, Childhood Arthritis Rheumatology Research Alliance; Peter Chiraseveenuprapund, MD 0000-0002-6551-1384, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego; Kimberly DeQuattro, MD, MM 0000-0001-8339-5666, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems; Y. Ingrid Goh, PhD 0000-0002-5372-2950, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Tzielan C. Lee, MD 0000-0001-5505-8259, Pediatric Rheumatology, Stanford University School of Medicine; Katharine F. Moore, MD, 0000-0001-7094-5745 Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine; Rosemary G. Peterson, MD, MSCE 0000-0002-0959-2343, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin; Jordan E. Roberts, MD, 0000-0002-0976-5697, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital; Tova Ronis, MDCM 0000-0003-3223-5069, Pediatric Rheumatology, Children's National Hospital, Dept of Pediatrics, George Washington University; Rebecca E. Sadun, MD, PhD, 0000-0001-7768-3565, Department of Pediatric and Department of Medicine, Duke University Medical Center; Emily A. Smitherman, MD, MS., 0000-0001-6226-9265, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham; Elizabeth Stringer, MD MSc FRCPC, 0000-0002-1863-2562, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada; Patience H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences; Joyce C. Chang, MD, MSCE 0000-0002-1691-4814, Division of Immunology, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, for the CARRA Transition Workgroup. Conflict of Interest Disclosures: The authors have no conflicts of interest relevant to this article to disclose. Funding/Support: Research reported in this publication did not receive financial support. Statement of Ethics: An Institutional Review Board exemption was obtained from Boston Children's Hospital (protocol number IRB-P00039656) for survey dissemination. Contributors' Statement: All authors contributed to the conception and design, execution or analysis and interpretation of data. All authors revised the manuscript critically, read, and approved the final version. Corresponding Author: Nicole Bitencourt, MD, Loma Linda University Medical Center, Pediatric Rheumatology, Address: 1175 Campus Street, Loma Linda, CA 92354. Email: Nicole_Bitencourt@yahoo.com.
Kimberly DeQuattro, Nicole Bitencourt, MD 0000-0001-8848-2478, Department of Pediatrics, Loma Linda University Medical Center; Erica Lawson, MD 0000-0002-9014-0175, Department of Pediatrics, University of California San Francisco Medical Center; John Bridges, MD, MS 0000-0001-8161-5864, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham; Kristine Carandang, PhD, OTR/L 0000-0002-0159-6374, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls; Ela Chintagunta, Grinnell College Class of 2025, Patient Partner, Childhood Arthritis Rheumatology Research Alliance; Peter Chiraseveenuprapund, MD 0000-0002-6551-1384, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego; Kimberly DeQuattro, MD, MM 0000-0001-8339-5666, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems; Y. Ingrid Goh, PhD 0000-0002-5372-2950, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Tzielan C. Lee, MD 0000-0001-5505-8259, Pediatric Rheumatology, Stanford University School of Medicine; Katharine F. Moore, MD, 0000-0001-7094-5745 Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine; Rosemary G. Peterson, MD, MSCE 0000-0002-0959-2343, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin; Jordan E. Roberts, MD, 0000-0002-0976-5697, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital; Tova Ronis, MDCM 0000-0003-3223-5069, Pediatric Rheumatology, Children's National Hospital, Dept of Pediatrics, George Washington University; Rebecca E. Sadun, MD, PhD, 0000-0001-7768-3565, Department of Pediatric and Department of Medicine, Duke University Medical Center; Emily A. Smitherman, MD, MS., 0000-0001-6226-9265, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham; Elizabeth Stringer, MD MSc FRCPC, 0000-0002-1863-2562, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada; Patience H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences; Joyce C. Chang, MD, MSCE 0000-0002-1691-4814, Division of Immunology, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, for the CARRA Transition Workgroup. Conflict of Interest Disclosures: The authors have no conflicts of interest relevant to this article to disclose. Funding/Support: Research reported in this publication did not receive financial support. Statement of Ethics: An Institutional Review Board exemption was obtained from Boston Children's Hospital (protocol number IRB-P00039656) for survey dissemination. Contributors' Statement: All authors contributed to the conception and design, execution or analysis and interpretation of data. All authors revised the manuscript critically, read, and approved the final version. Corresponding Author: Nicole Bitencourt, MD, Loma Linda University Medical Center, Pediatric Rheumatology, Address: 1175 Campus Street, Loma Linda, CA 92354. Email: Nicole_Bitencourt@yahoo.com.
Y Ingrid Goh, Nicole Bitencourt, MD 0000-0001-8848-2478, Department of Pediatrics, Loma Linda University Medical Center; Erica Lawson, MD 0000-0002-9014-0175, Department of Pediatrics, University of California San Francisco Medical Center; John Bridges, MD, MS 0000-0001-8161-5864, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham; Kristine Carandang, PhD, OTR/L 0000-0002-0159-6374, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls; Ela Chintagunta, Grinnell College Class of 2025, Patient Partner, Childhood Arthritis Rheumatology Research Alliance; Peter Chiraseveenuprapund, MD 0000-0002-6551-1384, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego; Kimberly DeQuattro, MD, MM 0000-0001-8339-5666, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems; Y. Ingrid Goh, PhD 0000-0002-5372-2950, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Tzielan C. Lee, MD 0000-0001-5505-8259, Pediatric Rheumatology, Stanford University School of Medicine; Katharine F. Moore, MD, 0000-0001-7094-5745 Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine; Rosemary G. Peterson, MD, MSCE 0000-0002-0959-2343, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin; Jordan E. Roberts, MD, 0000-0002-0976-5697, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital; Tova Ronis, MDCM 0000-0003-3223-5069, Pediatric Rheumatology, Children's National Hospital, Dept of Pediatrics, George Washington University; Rebecca E. Sadun, MD, PhD, 0000-0001-7768-3565, Department of Pediatric and Department of Medicine, Duke University Medical Center; Emily A. Smitherman, MD, MS., 0000-0001-6226-9265, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham; Elizabeth Stringer, MD MSc FRCPC, 0000-0002-1863-2562, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada; Patience H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences; Joyce C. Chang, MD, MSCE 0000-0002-1691-4814, Division of Immunology, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, for the CARRA Transition Workgroup. Conflict of Interest Disclosures: The authors have no conflicts of interest relevant to this article to disclose. Funding/Support: Research reported in this publication did not receive financial support. Statement of Ethics: An Institutional Review Board exemption was obtained from Boston Children's Hospital (protocol number IRB-P00039656) for survey dissemination. Contributors' Statement: All authors contributed to the conception and design, execution or analysis and interpretation of data. All authors revised the manuscript critically, read, and approved the final version. Corresponding Author: Nicole Bitencourt, MD, Loma Linda University Medical Center, Pediatric Rheumatology, Address: 1175 Campus Street, Loma Linda, CA 92354. Email: Nicole_Bitencourt@yahoo.com.
Tzielan C. Lee, Nicole Bitencourt, MD 0000-0001-8848-2478, Department of Pediatrics, Loma Linda University Medical Center; Erica Lawson, MD 0000-0002-9014-0175, Department of Pediatrics, University of California San Francisco Medical Center; John Bridges, MD, MS 0000-0001-8161-5864, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham; Kristine Carandang, PhD, OTR/L 0000-0002-0159-6374, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls; Ela Chintagunta, Grinnell College Class of 2025, Patient Partner, Childhood Arthritis Rheumatology Research Alliance; Peter Chiraseveenuprapund, MD 0000-0002-6551-1384, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego; Kimberly DeQuattro, MD, MM 0000-0001-8339-5666, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems; Y. Ingrid Goh, PhD 0000-0002-5372-2950, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Tzielan C. Lee, MD 0000-0001-5505-8259, Pediatric Rheumatology, Stanford University School of Medicine; Katharine F. Moore, MD, 0000-0001-7094-5745 Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine; Rosemary G. Peterson, MD, MSCE 0000-0002-0959-2343, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin; Jordan E. Roberts, MD, 0000-0002-0976-5697, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital; Tova Ronis, MDCM 0000-0003-3223-5069, Pediatric Rheumatology, Children's National Hospital, Dept of Pediatrics, George Washington University; Rebecca E. Sadun, MD, PhD, 0000-0001-7768-3565, Department of Pediatric and Department of Medicine, Duke University Medical Center; Emily A. Smitherman, MD, MS., 0000-0001-6226-9265, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham; Elizabeth Stringer, MD MSc FRCPC, 0000-0002-1863-2562, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada; Patience H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences; Joyce C. Chang, MD, MSCE 0000-0002-1691-4814, Division of Immunology, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, for the CARRA Transition Workgroup. Conflict of Interest Disclosures: The authors have no conflicts of interest relevant to this article to disclose. Funding/Support: Research reported in this publication did not receive financial support. Statement of Ethics: An Institutional Review Board exemption was obtained from Boston Children's Hospital (protocol number IRB-P00039656) for survey dissemination. Contributors' Statement: All authors contributed to the conception and design, execution or analysis and interpretation of data. All authors revised the manuscript critically, read, and approved the final version. Corresponding Author: Nicole Bitencourt, MD, Loma Linda University Medical Center, Pediatric Rheumatology, Address: 1175 Campus Street, Loma Linda, CA 92354. Email: Nicole_Bitencourt@yahoo.com.
Katharine F. Moore, Nicole Bitencourt, MD 0000-0001-8848-2478, Department of Pediatrics, Loma Linda University Medical Center; Erica Lawson, MD 0000-0002-9014-0175, Department of Pediatrics, University of California San Francisco Medical Center; John Bridges, MD, MS 0000-0001-8161-5864, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham; Kristine Carandang, PhD, OTR/L 0000-0002-0159-6374, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls; Ela Chintagunta, Grinnell College Class of 2025, Patient Partner, Childhood Arthritis Rheumatology Research Alliance; Peter Chiraseveenuprapund, MD 0000-0002-6551-1384, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego; Kimberly DeQuattro, MD, MM 0000-0001-8339-5666, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems; Y. Ingrid Goh, PhD 0000-0002-5372-2950, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Tzielan C. Lee, MD 0000-0001-5505-8259, Pediatric Rheumatology, Stanford University School of Medicine; Katharine F. Moore, MD, 0000-0001-7094-5745 Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine; Rosemary G. Peterson, MD, MSCE 0000-0002-0959-2343, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin; Jordan E. Roberts, MD, 0000-0002-0976-5697, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital; Tova Ronis, MDCM 0000-0003-3223-5069, Pediatric Rheumatology, Children's National Hospital, Dept of Pediatrics, George Washington University; Rebecca E. Sadun, MD, PhD, 0000-0001-7768-3565, Department of Pediatric and Department of Medicine, Duke University Medical Center; Emily A. Smitherman, MD, MS., 0000-0001-6226-9265, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham; Elizabeth Stringer, MD MSc FRCPC, 0000-0002-1863-2562, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada; Patience H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences; Joyce C. Chang, MD, MSCE 0000-0002-1691-4814, Division of Immunology, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, for the CARRA Transition Workgroup. Conflict of Interest Disclosures: The authors have no conflicts of interest relevant to this article to disclose. Funding/Support: Research reported in this publication did not receive financial support. Statement of Ethics: An Institutional Review Board exemption was obtained from Boston Children's Hospital (protocol number IRB-P00039656) for survey dissemination. Contributors' Statement: All authors contributed to the conception and design, execution or analysis and interpretation of data. All authors revised the manuscript critically, read, and approved the final version. Corresponding Author: Nicole Bitencourt, MD, Loma Linda University Medical Center, Pediatric Rheumatology, Address: 1175 Campus Street, Loma Linda, CA 92354. Email: Nicole_Bitencourt@yahoo.com.
Rosemary G. Peterson, Nicole Bitencourt, MD 0000-0001-8848-2478, Department of Pediatrics, Loma Linda University Medical Center; Erica Lawson, MD 0000-0002-9014-0175, Department of Pediatrics, University of California San Francisco Medical Center; John Bridges, MD, MS 0000-0001-8161-5864, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham; Kristine Carandang, PhD, OTR/L 0000-0002-0159-6374, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls; Ela Chintagunta, Grinnell College Class of 2025, Patient Partner, Childhood Arthritis Rheumatology Research Alliance; Peter Chiraseveenuprapund, MD 0000-0002-6551-1384, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego; Kimberly DeQuattro, MD, MM 0000-0001-8339-5666, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems; Y. Ingrid Goh, PhD 0000-0002-5372-2950, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Tzielan C. Lee, MD 0000-0001-5505-8259, Pediatric Rheumatology, Stanford University School of Medicine; Katharine F. Moore, MD, 0000-0001-7094-5745 Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine; Rosemary G. Peterson, MD, MSCE 0000-0002-0959-2343, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin; Jordan E. Roberts, MD, 0000-0002-0976-5697, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital; Tova Ronis, MDCM 0000-0003-3223-5069, Pediatric Rheumatology, Children's National Hospital, Dept of Pediatrics, George Washington University; Rebecca E. Sadun, MD, PhD, 0000-0001-7768-3565, Department of Pediatric and Department of Medicine, Duke University Medical Center; Emily A. Smitherman, MD, MS., 0000-0001-6226-9265, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham; Elizabeth Stringer, MD MSc FRCPC, 0000-0002-1863-2562, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada; Patience H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences; Joyce C. Chang, MD, MSCE 0000-0002-1691-4814, Division of Immunology, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, for the CARRA Transition Workgroup. Conflict of Interest Disclosures: The authors have no conflicts of interest relevant to this article to disclose. Funding/Support: Research reported in this publication did not receive financial support. Statement of Ethics: An Institutional Review Board exemption was obtained from Boston Children's Hospital (protocol number IRB-P00039656) for survey dissemination. Contributors' Statement: All authors contributed to the conception and design, execution or analysis and interpretation of data. All authors revised the manuscript critically, read, and approved the final version. Corresponding Author: Nicole Bitencourt, MD, Loma Linda University Medical Center, Pediatric Rheumatology, Address: 1175 Campus Street, Loma Linda, CA 92354. Email: Nicole_Bitencourt@yahoo.com.
Jordan E. Roberts, Nicole Bitencourt, MD 0000-0001-8848-2478, Department of Pediatrics, Loma Linda University Medical Center; Erica Lawson, MD 0000-0002-9014-0175, Department of Pediatrics, University of California San Francisco Medical Center; John Bridges, MD, MS 0000-0001-8161-5864, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham; Kristine Carandang, PhD, OTR/L 0000-0002-0159-6374, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls; Ela Chintagunta, Grinnell College Class of 2025, Patient Partner, Childhood Arthritis Rheumatology Research Alliance; Peter Chiraseveenuprapund, MD 0000-0002-6551-1384, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego; Kimberly DeQuattro, MD, MM 0000-0001-8339-5666, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems; Y. Ingrid Goh, PhD 0000-0002-5372-2950, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Tzielan C. Lee, MD 0000-0001-5505-8259, Pediatric Rheumatology, Stanford University School of Medicine; Katharine F. Moore, MD, 0000-0001-7094-5745 Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine; Rosemary G. Peterson, MD, MSCE 0000-0002-0959-2343, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin; Jordan E. Roberts, MD, 0000-0002-0976-5697, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital; Tova Ronis, MDCM 0000-0003-3223-5069, Pediatric Rheumatology, Children's National Hospital, Dept of Pediatrics, George Washington University; Rebecca E. Sadun, MD, PhD, 0000-0001-7768-3565, Department of Pediatric and Department of Medicine, Duke University Medical Center; Emily A. Smitherman, MD, MS., 0000-0001-6226-9265, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham; Elizabeth Stringer, MD MSc FRCPC, 0000-0002-1863-2562, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada; Patience H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences; Joyce C. Chang, MD, MSCE 0000-0002-1691-4814, Division of Immunology, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, for the CARRA Transition Workgroup. Conflict of Interest Disclosures: The authors have no conflicts of interest relevant to this article to disclose. Funding/Support: Research reported in this publication did not receive financial support. Statement of Ethics: An Institutional Review Board exemption was obtained from Boston Children's Hospital (protocol number IRB-P00039656) for survey dissemination. Contributors' Statement: All authors contributed to the conception and design, execution or analysis and interpretation of data. All authors revised the manuscript critically, read, and approved the final version. Corresponding Author: Nicole Bitencourt, MD, Loma Linda University Medical Center, Pediatric Rheumatology, Address: 1175 Campus Street, Loma Linda, CA 92354. Email: Nicole_Bitencourt@yahoo.com.
Tova Ronis, Nicole Bitencourt, MD 0000-0001-8848-2478, Department of Pediatrics, Loma Linda University Medical Center; Erica Lawson, MD 0000-0002-9014-0175, Department of Pediatrics, University of California San Francisco Medical Center; John Bridges, MD, MS 0000-0001-8161-5864, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham; Kristine Carandang, PhD, OTR/L 0000-0002-0159-6374, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls; Ela Chintagunta, Grinnell College Class of 2025, Patient Partner, Childhood Arthritis Rheumatology Research Alliance; Peter Chiraseveenuprapund, MD 0000-0002-6551-1384, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego; Kimberly DeQuattro, MD, MM 0000-0001-8339-5666, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems; Y. Ingrid Goh, PhD 0000-0002-5372-2950, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Tzielan C. Lee, MD 0000-0001-5505-8259, Pediatric Rheumatology, Stanford University School of Medicine; Katharine F. Moore, MD, 0000-0001-7094-5745 Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine; Rosemary G. Peterson, MD, MSCE 0000-0002-0959-2343, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin; Jordan E. Roberts, MD, 0000-0002-0976-5697, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital; Tova Ronis, MDCM 0000-0003-3223-5069, Pediatric Rheumatology, Children's National Hospital, Dept of Pediatrics, George Washington University; Rebecca E. Sadun, MD, PhD, 0000-0001-7768-3565, Department of Pediatric and Department of Medicine, Duke University Medical Center; Emily A. Smitherman, MD, MS., 0000-0001-6226-9265, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham; Elizabeth Stringer, MD MSc FRCPC, 0000-0002-1863-2562, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada; Patience H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences; Joyce C. Chang, MD, MSCE 0000-0002-1691-4814, Division of Immunology, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, for the CARRA Transition Workgroup. Conflict of Interest Disclosures: The authors have no conflicts of interest relevant to this article to disclose. Funding/Support: Research reported in this publication did not receive financial support. Statement of Ethics: An Institutional Review Board exemption was obtained from Boston Children's Hospital (protocol number IRB-P00039656) for survey dissemination. Contributors' Statement: All authors contributed to the conception and design, execution or analysis and interpretation of data. All authors revised the manuscript critically, read, and approved the final version. Corresponding Author: Nicole Bitencourt, MD, Loma Linda University Medical Center, Pediatric Rheumatology, Address: 1175 Campus Street, Loma Linda, CA 92354. Email: Nicole_Bitencourt@yahoo.com.
Rebecca E. Sadun, Nicole Bitencourt, MD 0000-0001-8848-2478, Department of Pediatrics, Loma Linda University Medical Center; Erica Lawson, MD 0000-0002-9014-0175, Department of Pediatrics, University of California San Francisco Medical Center; John Bridges, MD, MS 0000-0001-8161-5864, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham; Kristine Carandang, PhD, OTR/L 0000-0002-0159-6374, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls; Ela Chintagunta, Grinnell College Class of 2025, Patient Partner, Childhood Arthritis Rheumatology Research Alliance; Peter Chiraseveenuprapund, MD 0000-0002-6551-1384, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego; Kimberly DeQuattro, MD, MM 0000-0001-8339-5666, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems; Y. Ingrid Goh, PhD 0000-0002-5372-2950, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Tzielan C. Lee, MD 0000-0001-5505-8259, Pediatric Rheumatology, Stanford University School of Medicine; Katharine F. Moore, MD, 0000-0001-7094-5745 Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine; Rosemary G. Peterson, MD, MSCE 0000-0002-0959-2343, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin; Jordan E. Roberts, MD, 0000-0002-0976-5697, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital; Tova Ronis, MDCM 0000-0003-3223-5069, Pediatric Rheumatology, Children's National Hospital, Dept of Pediatrics, George Washington University; Rebecca E. Sadun, MD, PhD, 0000-0001-7768-3565, Department of Pediatric and Department of Medicine, Duke University Medical Center; Emily A. Smitherman, MD, MS., 0000-0001-6226-9265, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham; Elizabeth Stringer, MD MSc FRCPC, 0000-0002-1863-2562, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada; Patience H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences; Joyce C. Chang, MD, MSCE 0000-0002-1691-4814, Division of Immunology, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, for the CARRA Transition Workgroup. Conflict of Interest Disclosures: The authors have no conflicts of interest relevant to this article to disclose. Funding/Support: Research reported in this publication did not receive financial support. Statement of Ethics: An Institutional Review Board exemption was obtained from Boston Children's Hospital (protocol number IRB-P00039656) for survey dissemination. Contributors' Statement: All authors contributed to the conception and design, execution or analysis and interpretation of data. All authors revised the manuscript critically, read, and approved the final version. Corresponding Author: Nicole Bitencourt, MD, Loma Linda University Medical Center, Pediatric Rheumatology, Address: 1175 Campus Street, Loma Linda, CA 92354. Email: Nicole_Bitencourt@yahoo.com.
Emily A. Smitherman, Nicole Bitencourt, MD 0000-0001-8848-2478, Department of Pediatrics, Loma Linda University Medical Center; Erica Lawson, MD 0000-0002-9014-0175, Department of Pediatrics, University of California San Francisco Medical Center; John Bridges, MD, MS 0000-0001-8161-5864, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham; Kristine Carandang, PhD, OTR/L 0000-0002-0159-6374, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls; Ela Chintagunta, Grinnell College Class of 2025, Patient Partner, Childhood Arthritis Rheumatology Research Alliance; Peter Chiraseveenuprapund, MD 0000-0002-6551-1384, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego; Kimberly DeQuattro, MD, MM 0000-0001-8339-5666, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems; Y. Ingrid Goh, PhD 0000-0002-5372-2950, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Tzielan C. Lee, MD 0000-0001-5505-8259, Pediatric Rheumatology, Stanford University School of Medicine; Katharine F. Moore, MD, 0000-0001-7094-5745 Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine; Rosemary G. Peterson, MD, MSCE 0000-0002-0959-2343, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin; Jordan E. Roberts, MD, 0000-0002-0976-5697, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital; Tova Ronis, MDCM 0000-0003-3223-5069, Pediatric Rheumatology, Children's National Hospital, Dept of Pediatrics, George Washington University; Rebecca E. Sadun, MD, PhD, 0000-0001-7768-3565, Department of Pediatric and Department of Medicine, Duke University Medical Center; Emily A. Smitherman, MD, MS., 0000-0001-6226-9265, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham; Elizabeth Stringer, MD MSc FRCPC, 0000-0002-1863-2562, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada; Patience H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences; Joyce C. Chang, MD, MSCE 0000-0002-1691-4814, Division of Immunology, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, for the CARRA Transition Workgroup. Conflict of Interest Disclosures: The authors have no conflicts of interest relevant to this article to disclose. Funding/Support: Research reported in this publication did not receive financial support. Statement of Ethics: An Institutional Review Board exemption was obtained from Boston Children's Hospital (protocol number IRB-P00039656) for survey dissemination. Contributors' Statement: All authors contributed to the conception and design, execution or analysis and interpretation of data. All authors revised the manuscript critically, read, and approved the final version. Corresponding Author: Nicole Bitencourt, MD, Loma Linda University Medical Center, Pediatric Rheumatology, Address: 1175 Campus Street, Loma Linda, CA 92354. Email: Nicole_Bitencourt@yahoo.com.
Elizabeth Stringer, Nicole Bitencourt, MD 0000-0001-8848-2478, Department of Pediatrics, Loma Linda University Medical Center; Erica Lawson, MD 0000-0002-9014-0175, Department of Pediatrics, University of California San Francisco Medical Center; John Bridges, MD, MS 0000-0001-8161-5864, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham; Kristine Carandang, PhD, OTR/L 0000-0002-0159-6374, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls; Ela Chintagunta, Grinnell College Class of 2025, Patient Partner, Childhood Arthritis Rheumatology Research Alliance; Peter Chiraseveenuprapund, MD 0000-0002-6551-1384, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego; Kimberly DeQuattro, MD, MM 0000-0001-8339-5666, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems; Y. Ingrid Goh, PhD 0000-0002-5372-2950, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Tzielan C. Lee, MD 0000-0001-5505-8259, Pediatric Rheumatology, Stanford University School of Medicine; Katharine F. Moore, MD, 0000-0001-7094-5745 Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine; Rosemary G. Peterson, MD, MSCE 0000-0002-0959-2343, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin; Jordan E. Roberts, MD, 0000-0002-0976-5697, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital; Tova Ronis, MDCM 0000-0003-3223-5069, Pediatric Rheumatology, Children's National Hospital, Dept of Pediatrics, George Washington University; Rebecca E. Sadun, MD, PhD, 0000-0001-7768-3565, Department of Pediatric and Department of Medicine, Duke University Medical Center; Emily A. Smitherman, MD, MS., 0000-0001-6226-9265, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham; Elizabeth Stringer, MD MSc FRCPC, 0000-0002-1863-2562, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada; Patience H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences; Joyce C. Chang, MD, MSCE 0000-0002-1691-4814, Division of Immunology, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, for the CARRA Transition Workgroup. Conflict of Interest Disclosures: The authors have no conflicts of interest relevant to this article to disclose. Funding/Support: Research reported in this publication did not receive financial support. Statement of Ethics: An Institutional Review Board exemption was obtained from Boston Children's Hospital (protocol number IRB-P00039656) for survey dissemination. Contributors' Statement: All authors contributed to the conception and design, execution or analysis and interpretation of data. All authors revised the manuscript critically, read, and approved the final version. Corresponding Author: Nicole Bitencourt, MD, Loma Linda University Medical Center, Pediatric Rheumatology, Address: 1175 Campus Street, Loma Linda, CA 92354. Email: Nicole_Bitencourt@yahoo.com.
Patience H. White, Nicole Bitencourt, MD 0000-0001-8848-2478, Department of Pediatrics, Loma Linda University Medical Center; Erica Lawson, MD 0000-0002-9014-0175, Department of Pediatrics, University of California San Francisco Medical Center; John Bridges, MD, MS 0000-0001-8161-5864, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham; Kristine Carandang, PhD, OTR/L 0000-0002-0159-6374, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls; Ela Chintagunta, Grinnell College Class of 2025, Patient Partner, Childhood Arthritis Rheumatology Research Alliance; Peter Chiraseveenuprapund, MD 0000-0002-6551-1384, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego; Kimberly DeQuattro, MD, MM 0000-0001-8339-5666, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems; Y. Ingrid Goh, PhD 0000-0002-5372-2950, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Tzielan C. Lee, MD 0000-0001-5505-8259, Pediatric Rheumatology, Stanford University School of Medicine; Katharine F. Moore, MD, 0000-0001-7094-5745 Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine; Rosemary G. Peterson, MD, MSCE 0000-0002-0959-2343, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin; Jordan E. Roberts, MD, 0000-0002-0976-5697, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital; Tova Ronis, MDCM 0000-0003-3223-5069, Pediatric Rheumatology, Children's National Hospital, Dept of Pediatrics, George Washington University; Rebecca E. Sadun, MD, PhD, 0000-0001-7768-3565, Department of Pediatric and Department of Medicine, Duke University Medical Center; Emily A. Smitherman, MD, MS., 0000-0001-6226-9265, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham; Elizabeth Stringer, MD MSc FRCPC, 0000-0002-1863-2562, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada; Patience H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences; Joyce C. Chang, MD, MSCE 0000-0002-1691-4814, Division of Immunology, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, for the CARRA Transition Workgroup. Conflict of Interest Disclosures: The authors have no conflicts of interest relevant to this article to disclose. Funding/Support: Research reported in this publication did not receive financial support. Statement of Ethics: An Institutional Review Board exemption was obtained from Boston Children's Hospital (protocol number IRB-P00039656) for survey dissemination. Contributors' Statement: All authors contributed to the conception and design, execution or analysis and interpretation of data. All authors revised the manuscript critically, read, and approved the final version. Corresponding Author: Nicole Bitencourt, MD, Loma Linda University Medical Center, Pediatric Rheumatology, Address: 1175 Campus Street, Loma Linda, CA 92354. Email: Nicole_Bitencourt@yahoo.com.
Joyce C. Chang

Document Type

Journal Article

Publication Date

8-1-2022

Journal

The Journal of rheumatology

DOI

10.3899/jrheum.220262

Abstract

The transition from pediatric to adult care is the focus of growing research. It is important to identify how to direct future research efforts for maximum impact. Our goals were to perform a scoping review of the transition literature, highlight gaps in transition research, and offer stakeholder guidance on the importance and feasibility of research questions designed to fill identified gaps.The transition literature on rheumatic diseases and other common pediatric-onset chronic diseases was grouped and summarized. Based on the findings, a survey was developed and disseminated to pediatric rheumatologists and young adults with rheumatic diseases as well as their caregivers.The transitional care needs of patients, healthcare teams, and caregivers is well-described in the literature. While various transition readiness scales exist, no longitudinal post-transfer study confirms their predictive validity. Multiple outcome measures are used alone or in combination to define a successful transition or intervention. Multimodal interventions are most effective at improving transition-related outcomes. How broader health policy affects transition is poorly studied.Research questions ranked highest for importance and feasibility included those related to identifying and tracking persons with psychosocial vulnerabilities or other risk factors for poor outcomes. Interventions surrounding improving self-efficacy and health literacy were also ranked highly. In contrast to healthcare teams (n=107), young adults/caregivers (n=23) prioritized research surrounding improved work, school or social function.The relevant transition literature is summarized and future research questions prioritized, including the creation of processes to identify and support young adults vulnerable to poor outcomes.

Department

Pediatrics

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