Knowledge Translation in Juvenile Idiopathic Arthritis Research in Canada: A Focus on Pediatric Rheumatologists and Allied Health Professionals

Benjamin Rose-Davis¹, Janet Curran², Tania Cellucci³, Ciarán M. Duffy⁴, Lori Tucker^5,6, Michelle Batthish⁷, Adam Huber⁸, Bianca Lang^9,10, Deborah M. Levy¹¹, Dax Rumsey¹², Karen N Watanabe Duffy¹³ and Elizabeth Stringer¹⁴, ¹Division of Pediatric Rheumatology, IWK Health Centre, Halifax, NS, Canada, ²Department of Pediatrics, IWK Health Centre, Halifax, NS, Canada, ³Pediatrics/Rheumatology, McMaster Children's Hospital, Hamilton, ON, Canada, ⁴Children's Hospital of Eastern Ontario and University of Ottawa, Ottawa, ON, Canada, ⁵Rheumatology, BC Childrens Hospital, Vancouver, BC, Canada, ⁶Pediatric Rheum/Rm K4-120, BC Childrens Hospital, Vancouver, BC, Canada, ⁷Division of Pediatric Rheumatology, McMaster Children's Hospital, Hamilton, ON, Canada, ⁸IWK Health Centre, Halifax, NS, Canada, ⁹Pediatrics, IWK Health Centre, Halifax, NS, Canada, ¹⁰Rheumatology, IWK Health Centre, Halifax, NS, Canada, ¹¹Division of Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada, ¹²Stollery Children's Hospital, Edmonton, AB, Canada, ¹³Rheumatology, Children's Hospital of Eastern Ontario and University of Ottawa, Ottawa, ON, Canada, ¹⁴Department of Rheumatology, IWK Health Centre, Halifax, NS, Canada

Meeting: 2017 Pediatric Rheumatology Symposium

Keywords: Counseling, Juvenile Arthritis, knowledge and outcomes

Session Information

Date: Saturday, May 20, 2017

Title: Quality, Health Services and Education Research Poster Breakout II

Session Type: Abstract Submissions

Session Time: 5:15PM-5:45PM

Background/Purpose: Knowledge Translation (KT) is an iterative process that includes synthesis, dissemination, and application of knowledge to improve health. The aim of this study is to identify the barriers and facilitators identified by Pediatric Rheumatologists (PRs) and Allied Health Professionals (AHPs) to incorporating research findings from Canadian JIA research in clinical care.

Methods: Canadian PRs and AHPs who care for children with JIA were invited to participate via an email survey. Purposeful sampling was used to choose subjects from across the country, including small and large centres. Telephone interviews, which focused on the use of information obtained from the ReACCh-Out Study (Research in Arthritis in Canadian Children emphasizing Outcomes) by PRs/AHPs in clinical care, were conducted using a standardized interview guide. The ReACCh-Out inception cohort characterizes outcomes for over 1000 Canadian children with JIA. Transcripts were coded (BRD, ES) in NVivo 11 using the validated Theoretical Domains Framework (TDF). The 14 domains of the TDF provide a framework for qualitative data analysis informing interventions aimed at behavior change, improving knowledge uptake and patient counselling.

Results: 8 PRs and 10 AHPs (4 PTs, 3 RNs, 3 OTs) representing 11 centres were interviewed. All PRs had knowledge of the ReACCh-Out study. 3/10 AHPs were not aware of the study, 4/10 had heard of it, and 3/10 had a more in-depth knowledge. The PRs and AHPs feel it is their role to share the most up-to-date information with families. It is important to them for a variety of reasons, including the potential to improve shared decision-making and self-management, and decrease anxiety for families. Domains of the TDF and specific beliefs deemed to be important barriers and facilitators are found in Tables 1 and 2.

Table 1: Barriers and Facilitators PRs (n=8)

Domains likely to be barriers for PRs	Specific Beliefs (frequency) and sample quote
Memory, Attention, Decision Process	It is difficult to recall the results of the research (7/8) “the manuscript itself is very information heavy…I think that reading it is all fine and well but to keep the number at hand is hard”
Environment, Context, Resources	Receptiveness, emotional state, and literacy of the patient can be barriers (7/8) “they are not in the right frame of mind to have that kind of discussion. They are too upset, or overwhelmed…” There is a lack of time to search/read the literature (6/8) and in the clinic (6/8) “Taking the time to synthesize the data and then to be able to create the necessary dialogue with families. I think that is probably more of the barrier for me.” “I would say that how much time I have with the patients in the clinic. How, you know, busy the rest of my day is outside of clinic might affect the amount of quality time I can spend on this interaction.” There is a lack of non-verbal means to provide research information (7/8) “like sometimes I guess if the information is very technical it is a bit hard to put into layman’s terms, so maybe some aid, like visual aids to help with that.”
Domains likely to be facilitators for PRs
Memory, Attention, Decision Process	Triggers for sharing information (diagnosis, flares, medication changes) (8/8) “…that happens in three different situations. One is when I am making a new diagnosis of a patient and trying to tell the families what is going to happen. Second is when I’m prescribing treatments for patients with arthritis or other conditions and trying to describe the possible things that are going to happen. Third is when families ask me about what the future holds and why we make certain decisions…”
Behavioral Regulation	A tool or trigger to facilitate knowledge translation (4/8) “… it would be very helpful to me to have like some kind knowledge translation tool to be able to practice it better I think.”

Table 2: Barriers and Facilitators AHPs (n=10)

Domains likely to be barriers for AHPs	Specific Beliefs (frequency) and sample quote
Memory, Attention, Decision Process	It is difficult to recall the results of the research (8/10) “right off the top of my head I might not remember all the specifics of the research”
Environment, Context, Resources	There is a lack of time to search/read the literature (9/10) and in the clinic (6/10) “we don’t always have time to go and look for the most current information” Perceived patient ability and readiness causes clinician to hold back info (5/10) “for some too much information is overwhelming”
Knowledge	Unaware of recent research (7/10) “in the last while I have not been up on the research” Relying on anecdotal evidence (5/10) “It’s more my clinical knowledge…and what’s been reported by other patients”
Professional Role and Identity	Perceive it is not their primary role to communicate this information (7/10) “I think like actually discussing those outcomes…would be more the owned by the rheumatologist”
Domains likely to be facilitators for AHPs
Social Influences	Learning about using research from peers (9/10) “just having rheumatologist around to talk about the research they’re involved in can help to kind of spur that on”
Memory, Attention, Decision Process	Triggers for sharing information (diagnosis, flares, medication changes) (5/10) “any sort of changing in clinical status…a change in therapy, then for sure that’s probably the most common time that I would be accessing research”
Behavioral Regulation	A tool or trigger to facilitate knowledge translation (6/10) “one thing that we’ve often wished to have is more, sort of, updates that…would support the clinician”

Conclusion: PRs and AHPs find it challenging to recall specific study results, stay abreast of current research and distill it down for patients. Lack of time is a factor in the clinic, as well as the perception that families are not ready or able to understand information presented to them at certain times. Availability of KT tools are likely to be important, both as resources and regulators of behavior, particularly at specific time points in care (e.g. diagnosis, discussions around medication changes). Future work will be aimed at addressing barriers and leveraging facilitators in the design of KT interventions in the clinical setting.

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

To cite this abstract in AMA style:

Rose-Davis B, Curran J, Cellucci T, Duffy CM, Tucker L, Batthish M, Huber A, Lang B, Levy DM, Rumsey D, Watanabe Duffy KN, Stringer E. Knowledge Translation in Juvenile Idiopathic Arthritis Research in Canada: A Focus on Pediatric Rheumatologists and Allied Health Professionals [abstract]. Arthritis Rheumatol. 2017; 69 (suppl 4). https://acrabstracts.org/abstract/knowledge-translation-in-juvenile-idiopathic-arthritis-research-in-canada-a-focus-on-pediatric-rheumatologists-and-allied-health-professionals/. Accessed .

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