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Research ArticlePediatric Rheumatology

What Matters Most for Patients, Parents, and Clinicians in the Course of Juvenile Idiopathic Arthritis? A Qualitative Study

Jaime Guzman, Oralia Gómez-Ramírez, Roman Jurencak, Natalie J. Shiff, Roberta A. Berard, Ciaran M. Duffy, Kiem Oen, Ross E. Petty, Susanne M. Benseler, Rollin Brant and Lori B. Tucker
The Journal of Rheumatology November 2014, 41 (11) 2260-2269; DOI: https://doi.org/10.3899/jrheum.131536
Jaime Guzman
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.
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  • For correspondence: jguzman@cw.bc.ca
Oralia Gómez-Ramírez
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Roman Jurencak
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Natalie J. Shiff
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Roberta A. Berard
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Ciaran M. Duffy
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Kiem Oen
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Ross E. Petty
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Susanne M. Benseler
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Rollin Brant
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Lori B. Tucker
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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.

Key Indexing Terms:
  • JUVENILE IDIOPATHIC ARTHRITIS
  • PAIN
  • PHYSICIAN GLOBAL ASSESSMENT
  • TREATMENT
  • PARENT GLOBAL ASSESSMENT
  • CHILD HEALTH ASSESSMENT QUESTIONNAIRE

Footnotes

  • Supported by a research grant from the Canadian Rheumatology Association under the Canadian Initiative for Outcomes in Rheumatology Care/Initiative Canadienne pour des resultats en soins rhumatologiques (CIORA/ICORA) program.

  • Accepted for publication July 15, 2014.
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The Journal of Rheumatology
Vol. 41, Issue 11
1 Nov 2014
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What Matters Most for Patients, Parents, and Clinicians in the Course of Juvenile Idiopathic Arthritis? A Qualitative Study
Jaime Guzman, Oralia Gómez-Ramírez, Roman Jurencak, Natalie J. Shiff, Roberta A. Berard, Ciaran M. Duffy, Kiem Oen, Ross E. Petty, Susanne M. Benseler, Rollin Brant, Lori B. Tucker
The Journal of Rheumatology Nov 2014, 41 (11) 2260-2269; DOI: 10.3899/jrheum.131536

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What Matters Most for Patients, Parents, and Clinicians in the Course of Juvenile Idiopathic Arthritis? A Qualitative Study
Jaime Guzman, Oralia Gómez-Ramírez, Roman Jurencak, Natalie J. Shiff, Roberta A. Berard, Ciaran M. Duffy, Kiem Oen, Ross E. Petty, Susanne M. Benseler, Rollin Brant, Lori B. Tucker
The Journal of Rheumatology Nov 2014, 41 (11) 2260-2269; DOI: 10.3899/jrheum.131536
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Keywords

JUVENILE IDIOPATHIC ARTHRITIS
PAIN
PHYSICIAN GLOBAL ASSESSMENT
TREATMENT
PARENT GLOBAL ASSESSMENT
CHILD HEALTH ASSESSMENT QUESTIONNAIRE

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Keywords

  • juvenile idiopathic arthritis
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  • PHYSICIAN GLOBAL ASSESSMENT
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  • PARENT GLOBAL ASSESSMENT
  • CHILD HEALTH ASSESSMENT QUESTIONNAIRE

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