title: What matters most for patients, parents, and clinicians in the course of juvenile idiopathic arthritis? A qualitative study.
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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: 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.
authors.forename: Jaime
authors.initials: J
authors.lastname: Guzman
authors.affiliation: 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.
authors.forename: Oralia
authors.initials: O
authors.lastname: Gómez-Ramírez
authors.affiliation: 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.
authors.forename: Roman
authors.initials: R
authors.lastname: Jurencak
authors.affiliation: 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.
authors.forename: Natalie J
authors.initials: NJ
authors.lastname: Shiff
authors.affiliation: 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.
authors.forename: Roberta A
authors.initials: RA
authors.lastname: Berard
authors.affiliation: 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.
authors.forename: Ciaran M
authors.initials: CM
authors.lastname: Duffy
authors.affiliation: 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.
authors.forename: Kiem
authors.initials: K
authors.lastname: Oen
authors.affiliation: 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.
authors.forename: Ross E
authors.initials: RE
authors.lastname: Petty
authors.affiliation: 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.
authors.forename: Susanne M
authors.initials: SM
authors.lastname: Benseler
authors.affiliation: 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.
authors.forename: Rollin
authors.initials: R
authors.lastname: Brant
authors.affiliation: 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.
authors.forename: Lori B
authors.initials: LB
authors.lastname: Tucker
mesh_terms: D000293:Adolescent; D000328:Adult; D018501:Antirheumatic Agents / Q000008:administration & dosage*; D001171:Arthritis, Juvenile / Q000175:diagnosis* / Q000188:drug therapy* / Q000534:rehabilitation; D001291:Attitude of Health Personnel; D001955:British Columbia; D002648:Child; D002675:Child, Preschool; D019468:Disease Management; D018450:Disease Progression; D017144:Focus Groups; D006801:Humans; D033183:Interdisciplinary Communication; D007407:Interviews as Topic; D008875:Middle Aged; D010147:Pain Measurement; D010290:Parents; D010817:Physician-Patient Relations; D036301:Qualitative Research; D011788:Quality of Life; D016059:Range of Motion, Articular / Q000502:physiology; D018570:Risk Assessment; D012720:Severity of Illness Index; D018434:Sickness Impact Profile; D016896:Treatment Outcome; D055815:Young Adult
chemical_list: D018501:Antirheumatic Agents
keywords: CHILD HEALTH ASSESSMENT QUESTIONNAIRE; JUVENILE IDIOPATHIC ARTHRITIS; PAIN; PARENT GLOBAL ASSESSMENT; PHYSICIAN GLOBAL ASSESSMENT; TREATMENT