Jaime Guzman1, Oralia Gómez-Ramírez2, Roman Jurencak2, Natalie J Shiff2, Roberta A Berard2, Ciaran M Duffy2, Kiem Oen2, Ross E Petty2, Susanne M Benseler2, Rollin Brant2, Lori B Tucker2. 1. From the British Columbia Children's Hospital; University of British Columbia, Vancouver; Children's Hospital of Eastern Ontario; University of Ottawa, Ottawa, Ontario; University of Saskatchewan, Saskatoon; Children's Hospital, London Health Sciences Centre; Western University, London, Ontario; Children's Hospital of Winnipeg; University of Manitoba, Winnipeg; Alberta Children's Hospital; University of Calgary, Calgary, Alberta, Canada.J. Guzman, MD, MSc; O. Gómez-Ramírez, MA, PhD Candidate; R.E. Petty, MD; R. Brant, PhD; L.B. Tucker, MD, British Columbia Children's Hospital, University of British Columbia; R. Jurencak, MD; C.M. Duffy, MB, BCh, MSc, Children's Hospital of Eastern Ontario, University of Ottawa; N.J. Shiff, MD, MHSc, University of Saskatchewan, Saskatoon; R.A. Berard, MD, MSc, Children's Hospital, London Health Sciences Centre, Western University; K. Oen, MD, Children's Hospital of Winnipeg, University of Manitoba; S.M. Benseler, MD, Alberta Children's Hospital, University of Calgary. jguzman@cw.bc.ca. 2. From the British Columbia Children's Hospital; University of British Columbia, Vancouver; Children's Hospital of Eastern Ontario; University of Ottawa, Ottawa, Ontario; University of Saskatchewan, Saskatoon; Children's Hospital, London Health Sciences Centre; Western University, London, Ontario; Children's Hospital of Winnipeg; University of Manitoba, Winnipeg; Alberta Children's Hospital; University of Calgary, Calgary, Alberta, Canada.J. Guzman, MD, MSc; O. Gómez-Ramírez, MA, PhD Candidate; R.E. Petty, MD; R. Brant, PhD; L.B. Tucker, MD, British Columbia Children's Hospital, University of British Columbia; R. Jurencak, MD; C.M. Duffy, MB, BCh, MSc, Children's Hospital of Eastern Ontario, University of Ottawa; N.J. Shiff, MD, MHSc, University of Saskatchewan, Saskatoon; R.A. Berard, MD, MSc, Children's Hospital, London Health Sciences Centre, Western University; K. Oen, MD, Children's Hospital of Winnipeg, University of Manitoba; S.M. Benseler, MD, Alberta Children's Hospital, University of Calgary.
Abstract
OBJECTIVE: To assess which clinical features are most important for patients, parents, and clinicians in the course of juvenile idiopathic arthritis (JIA). METHODS: Forty-nine people participated in 6 audience-specific focus group discussions and 112 reciprocal interviews in 3 Canadian cities. Participants included youth with JIA, experienced English- and French-speaking parents, novice parents (<6 mos since diagnosis), pediatric rheumatologists, and allied health professionals. Participants discussed the importance of 34 JIA clinical features extracted from medical literature. Transcripts and interview reports underwent qualitative analysis to establish relative priorities for each group. RESULTS: Most study participants considered medication requirements, medication side effects, pain, participant-defined quality of life, and active joints as high priority clinical features of JIA. Active joint count was the only American College of Rheumatology core variable accorded high or medium priority by all groups. Rheumatologists and allied health professionals considered physician global assessment as high priority, but it had very low priority for patients and parents. The parent global assessment was considered high priority by clinicians, medium to high by parents, and low by patients. Child Health Assessment Questionnaire scores were considered low priority by patients and parents, and moderate or high by clinicians. The number of joints with limited motion was given low to very low priority by all groups. Parents gave high priority to arthritis flares. CONCLUSION: If our findings are confirmed, medication requirements, medication side effects, pain, participant-defined quality of life, and active joint counts should figure prominently in describing the course of JIA.
OBJECTIVE: To assess which clinical features are most important for patients, parents, and clinicians in the course of juvenile idiopathic arthritis (JIA). METHODS: Forty-nine people participated in 6 audience-specific focus group discussions and 112 reciprocal interviews in 3 Canadian cities. Participants included youth with JIA, experienced English- and French-speaking parents, novice parents (<6 mos since diagnosis), pediatric rheumatologists, and allied health professionals. Participants discussed the importance of 34 JIA clinical features extracted from medical literature. Transcripts and interview reports underwent qualitative analysis to establish relative priorities for each group. RESULTS: Most study participants considered medication requirements, medication side effects, pain, participant-defined quality of life, and active joints as high priority clinical features of JIA. Active joint count was the only American College of Rheumatology core variable accorded high or medium priority by all groups. Rheumatologists and allied health professionals considered physician global assessment as high priority, but it had very low priority for patients and parents. The parent global assessment was considered high priority by clinicians, medium to high by parents, and low by patients. Child Health Assessment Questionnaire scores were considered low priority by patients and parents, and moderate or high by clinicians. The number of joints with limited motion was given low to very low priority by all groups. Parents gave high priority to arthritis flares. CONCLUSION: If our findings are confirmed, medication requirements, medication side effects, pain, participant-defined quality of life, and active joint counts should figure prominently in describing the course of JIA.
Entities:
Keywords:
CHILD HEALTH ASSESSMENT QUESTIONNAIRE; JUVENILE IDIOPATHIC ARTHRITIS; PAIN; PARENT GLOBAL ASSESSMENT; PHYSICIAN GLOBAL ASSESSMENT; TREATMENT
Authors: Esi M Morgan; Constance A Mara; Bin Huang; Kimberly Barnett; Adam C Carle; Jennifer E Farrell; Karon F Cook Journal: Qual Life Res Date: 2016-12-02 Impact factor: 4.147
Authors: Megan L Krause; Jorge A Zamora-Legoff; Cynthia S Crowson; Theresa Wampler Muskardin; Thomas Mason; Eric L Matteson Journal: Semin Arthritis Rheum Date: 2016-07-18 Impact factor: 5.532
Authors: Mark Connelly; Laura E Schanberg; Stacy Ardoin; Michael Blakley; Ruy Carrasco; Peter Chira; Kristen Hayward; Maria Ibarra; Yukiko Kimura; Daniel J Kingsbury; Marisa S Klein-Gitelman; Erica Lawson; Jennifer Stinson Journal: J Pediatr Psychol Date: 2019-04-01
Authors: Eva S van den Ende; Bo Schouten; Mikkel Brabrand; Prabath W B Nanayakkara; Christian H Nickel; Marjolein N T Kremers; Tim Cooksley; Chris P Subbe; Immo Weichert; Louise S van Galen; Harm R Haak; John Kellett; Jelmer Alsma; Victoria Siegrist; Mark Holland; Erika F Christensen; Colin A Graham; Ling Yan Leung; Line E Laugesen; Hanneke Merten; Fraz Mir; Rachel M Kidney Journal: BMC Health Serv Res Date: 2021-05-19 Impact factor: 2.655
Authors: Amir Rashid; Lis Cordingley; Roberto Carrasco; Helen E Foster; Eileen M Baildam; Alice Chieng; Joyce E Davidson; Lucy R Wedderburn; Yiannis Ioannou; Flora McErlane; Suzanne M M Verstappen; Kimme L Hyrich; Wendy Thomson Journal: Arch Dis Child Date: 2017-11-25 Impact factor: 3.791
Authors: Daniel B Horton; Jomaira Salas; Aleksandra Wec; Melanie Kohlheim; Pooja Kapadia; Timothy Beukelman; Alexis Boneparth; Ky Haverkamp; Melissa L Mannion; L Nandini Moorthy; Sarah Ringold; Marsha Rosenthal Journal: Arthritis Care Res (Hoboken) Date: 2021-03 Impact factor: 4.794