Knowledge Translation in Juvenile Idiopathic Arthritis in Canada: A Focus on Parents of Children with JIA

Julia Wright¹, Benjamin Rose-Davis², Michelle Batthish³, Tania Cellucci⁴, Ciarán M. Duffy⁵, Lori Tucker⁶, Adam Huber⁷, Bianca Lang⁸, Deborah M. Levy⁹, Dax Rumsey¹⁰, Karen N Watanabe Duffy¹¹, Janet Curran¹² and Elizabeth Stringer¹³, ¹Faculty of Medicine, Dalhousie University, Halifax, NS, Canada, ²Department of Computer Science, Health Informatics, Dalhousie University, Halifax, NS, Canada, ³Division of Pediatric Rheumatology, McMaster Children's Hospital, Hamilton, ON, Canada, ⁴McMaster University, hamilton, ON, Canada, ⁵Children's Hospital of Eastern Ontario and University of Ottawa, Ottawa, ON, Canada, ⁶BC Children's Hospital, Vancouver, BC, Canada, ⁷IWK Health Centre, Halifax, NS, Canada, ⁸Pediatrics, IWK Health Centre, Halifax, NS, Canada, ⁹Division of Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada, ¹⁰Stollery Children's Hospital, Edmonton, AB, Canada, ¹¹Rheumatology, Children's Hospital of Eastern Ontario and University of Ottawa, Ottawa, ON, Canada, ¹²Department of Pediatrics, IWK Health Centre, Halifax, NS, Canada, ¹³Department of Rheumatology, IWK Health Centre, Halifax, NS, Canada

Meeting: 2017 ACR/ARHP Annual Meeting

Date of first publication: September 18, 2017

Keywords: Education, Juvenile Arthritis, knowledge and qualitative, patient

Session Information

Date: Tuesday, November 7, 2017

Title: Pediatric Rheumatology – Clinical and Therapeutic Aspects Poster III: Juvenile Arthritis

Session Type: ACR Poster Session C

Session Time: 9:00AM-11:00AM

Background/Purpose: The Research in Canadian Children with Childhood Arthritis Emphasizing Outcomes (ReACCh-Out) cohort (2005-2010) has characterized outcomes for Canadian children with Juvenile Idiopathic Arthritis (JIA). However, little is known about the uptake of this information, or JIA research findings in general, into clinical care. The aim of this study is to identify barriers and facilitators that influence the uptake and use of these findings by parents of children with JIA.

Methods: This descriptive exploratory study was conducted at 4 Canadian Centres (Halifax, Ottawa, Hamilton, Vancouver). Purposeful samples of parents were assembled based on duration and severity of JIA. Semi-structured focus group (FG) interviews were developed, focusing on perceptions about JIA research, how information from research was obtained/used, and what information was of greatest interest. Analysis comprised an open coding and general inductive approach.

Results: FG interviews were completed at the 4 sites (individual interviews supplemented low turnout at 2 sites). FG numbers ranged from 3-8 [22 parents (16 mothers); mean age 46 (32-59)]. None of the parents were aware of receiving information from the ReACCh-Out study as part of their child’s care, but subjects uniformly agreed on the importance of Canadian JIA research. They indicated a preference to receive information from their child’s health care providers and clinician endorsed organizations. Respondents conveyed a desire to have information at the time of diagnosis and when making decisions. Parents expressed a desire to have their interests taken into account when research questions are formulated. Sample quotes are shown in Table 1. Online or printed information was preferred.

Conclusion: Parents of children with JIA want up-to-date information from research translated and incorporated into clinical care and place trust in the health care team to deliver this information. Parents, however, were generally unaware of specific research findings on JIA. Critical time points when parents feel they need the most up-to-date information have been identified, however many barriers currently exist for parents who wish to access and use this information. Future work will incorporate findings from the other stakeholders in this study and will be directed at developing KT interventions that optimize delivery and utilization of research findings to improve the care of children with JIA.

Table 1: Barriers and Facilitators with Sample Quotes

Identified Barriers	Sample Quote
Lack of awareness of JIA research	“I don’t know a lot about the individual studies going on, but I would trust that the practitioners and physicians here are the top notch and are doing the research that is needed.”
Parent’s don’t want new information when their child’s disease is stable	“Once things were stabilized, we were a bit saturated with all the information and once we were stabilized, we said, well we’re functioning.”
Parents are overwhelmed by the large volume of complex information	“I read the 30 pages of information on juvenile arthritis and it made me scared, I didn’t know how to interpret it, it was too much.”
Research questions misalign with parents’ interests	“I wish there were more information, more studies on whether or not these adjunct therapies would help [if] integrated into the treatment.”
Identified Facilitators
New diagnosis of JIA	“When your child is diagnosed, you research and you try and find everything you can.”
Medication change	“…unless you go on new medication or there’s a reason for something specific, you don’t look for new research actively.”

Disclosure: J. Wright, None; B. Rose-Davis, None; M. Batthish, None; T. Cellucci, None; C. M. Duffy, None; L. Tucker, None; A. Huber, None; B. Lang, None; D. M. Levy, None; D. Rumsey, None; K. N. Watanabe Duffy, None; J. Curran, None; E. Stringer, None.

To cite this abstract in AMA style:

Wright J, Rose-Davis B, Batthish M, Cellucci T, Duffy CM, Tucker L, Huber A, Lang B, Levy DM, Rumsey D, Watanabe Duffy KN, Curran J, Stringer E. Knowledge Translation in Juvenile Idiopathic Arthritis in Canada: A Focus on Parents of Children with JIA [abstract]. Arthritis Rheumatol. 2017; 69 (suppl 10). https://acrabstracts.org/abstract/knowledge-translation-in-juvenile-idiopathic-arthritis-in-canada-a-focus-on-parents-of-children-with-jia/. Accessed .

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