THE CONSENSUS about how clinical practice guidelines (CPGs) can promote quality care is evident by the growing number of new CPGs for traumatic brain injury (TBI) of all severities developed over the last 10 years.1,2 One might question, however, the need for a new CPG for the rehabilitation of adults with moderate to severe TBI (MSTBI), and why in 2014, the Institut national d'excellence en santé et services sociaux (INESSS) and the Ontario Neurotrauma Foundation (ONF) initiated the development of such a tool? BECAUSE CLINICIANS TOLD US THAT THEY NEED SPECIFIC FEATURES AND TOOLS. Existing guidelines do not completely address all of the important clinical questions arising where there are trends toward shorter lengths of inpatient stay and more focus on community-based brain injury rehabilitation. Moreover, existing guidelines are not adapted to the Canadian healthcare context.
From the outset, we recognized that developing or adapting a CPG was probably relatively straightforward; implementing such a tool, and having users incorporate and adhere to recommendations in their daily practice, was going to be the greater challenge. CPG recommendations are not easy to put into practice and still require a certain amount of translation by clinicians.3,4 Some propose that uptake of guidelines could be improved by optimizing the fit between guideline presentation and resources and users' needs and expectations.5 Paying close attention to end users' needs and expectations was thus a priority during the development process in the hopes of ensuring usability and creating user-friendly tools to improve both quality and consistency of rehabilitation of adults with MSTBI.
In a special set of 4 articles in this issue, we share aspects of the development/adaptation process that led to the creation of a unique set of CPG recommendations available on our Web site: https://braininjuryguidelines.org/.
This work, funded by the ONF and the INESSS, arises from an interprovincial collaboration of researchers, clinicians, and policy makers from Ontario and Quebec (Canada) interested in improving the quality of practice in MSTBI rehabilitation provided in acute care, rehabilitation facilities, and the community.
Specifically, in the 3 articles that follow, we provide a general overview of the guideline development/adaptation methods (involving a 60-member consensus panel) and overarching principles with a focus on why we felt it was important to approach and engage users from the outset. The key steps of the development process were as follows:
- Assessment of the needs and expectations of frontline users, that is, the clinicians and managers from the programs providing rehabilitation to this patient population. The article “Assessment of Users' Needs and Expectations Toward Clinical Practice Guidelines to Support the Rehabilitation of Adults With Moderate to Severe Traumatic Brain Injury” describes our approach including the evaluation of users' perceptions of CPGs (knowledge, acceptance, usefulness, actual use, projected use) as well as their needs and expectations about the nature, scope, and format of the desired product. This information guided the CPG development strategy.
- Appraise quality of existing TBI guidelines and extract key recommendations: To minimize repetition of previously completed work. Each CPG (n = 8) was evaluated individually by 4 appraisers using the Appraisal of Guidelines for Research and Evaluation II (AGREE II) instrument.6 From high-quality CPGs, we extracted relevant recommendations that could be adapted. All existing documentation and evidence were synthesized and regrouped by clinical topic and then provided to an expert panel at a Consensus Conference held in 2014. Article 3, “Unique Features of the INESSS-ONF Rehabilitation Guidelines for Moderate to Severe Traumatic Brain Injury: Responding to Users' Needs,” presents the details of the conference and highlights some of the distinct features of the guideline. For example, besides reviewing the evidence, experts identified potential structure and process indicators to enable measuring practice changes related to the recommendations. This article also reports on the work conducted postconference and the production of the 266 recommendations included in the CPG. The final set of recommendations is divided into 2 sections to address the needs of both program managers and clinicians, respectively. Section I: Components of the Optimal TBI Rehabilitation System includes 71 recommendations, whereas Section II: Assessment and Rehabilitation of Brain Injury Sequelae includes 195 recommendations. Interestingly, 126 new, original recommendations were formulated, highlighting again the relevance of producing a new CPG to respond to the needs of users.
- Categorize recommendations: To further assist in the implementation of the CPG, we created 2 types of recommendations: Fundamental (n = 11) and Priority (n = 104). Fundamental recommendations are defined as the elements clinical settings need to have in place to build the rest of the service system properly. These recommendations aim to assist program managers in knowing about the service conditions fundamental for optimal rehabilitation provision. Priority recommendations refer to clinical practices or processes deemed most important to implement and monitor during TBI rehabilitation. Specifically, a priority practice was (i) highlighted in the targeted user survey, (ii) supported by strong evidence, (iii) ranked by the experts among the most important within a specific topic area, (iv) deemed feasible to implement by the project team, and (v) likely to have measureable outcomes. We believe that implementation of the priority recommendations would be difficult without the fundamental recommendations in place first.
- Development of implementation tools for clinicians: Other unique features of the CPG include algorithms developed to assist in the management of specific sequelae (eg, pharmacological management of agitation and aggression following TBI) and other implementation tools such as length of stay benchmarks for program managers. Supplementary text also accompanies each section of the recommendations. This includes a brief rationale for the recommendations, system implications, key structure, and process indicators, suggested tools and resources as well as a summary of the evidence. Finally, our CPG is bilingual (English and French), enabling use by French-speaking clinicians.
BECAUSE OUR CONTEXT IS DIFFERENT: The Canadian healthcare system strives to be universal, accessible, comprehensive, publicly administered, and portable. A principle of the healthcare system is that all Canadians should have equal rights to healthcare and equal opportunities to access services. The government pays for basic healthcare (including TBI care/rehabilitation) in Canada. When comparing Canadian data with published US programs, Cullen et al7 reported significant differences in timing and length of care in the 2 systems of care. Provincial governments are each responsible within Canada for delivery of healthcare and therefore regional variability in resources and practices exists. Some provinces have little or no brain injury rehabilitation services, whereas other regions have a relative abundance despite variability in rural and urban settings. Even within Ontario and Quebec, different referral/admission criteria to brain injury inpatient rehabilitation appear to be used.8 On the basis of the clear need for harmonized standards for quality of care across Canada, our team embarked on a partnership to develop a new CPG for adults (16- to 65-year-olds) with MSTBI.
BECAUSE OUR VISION ENCOMPASSES THE WHOLE Knowledge to Action CYCLE. In keeping with our concern about uptake, the last article in the series describes preliminary work related to our implementation strategy (“A Survey of Perceived Implementation Gaps for a Clinical Practice Guideline for the Rehabilitation of Adults With Moderate to Severe Traumatic Brain Injury”). Specifically, we report on an appraisal conducted about the current state of implementation of the CPG by surveying clinical partners across Ontario and Quebec to identify a subset of the recommendations not yet implemented but deemed of high priority and feasible. Despite similar clients and a federal healthcare system, perceived priorities and implementation strategies differed across provinces. Common areas of focus were, however, identified and will be targeted by the ONF and the INESSS that have each formed an Implementation Advisory Committee to guide and advise on key system issues. The ONF is supporting voluntary implementation initiatives at site and regional levels of common recommendations, whereas the INESSS is selecting with end users a final set of recommendations to implement and evaluate as part of their trauma evaluation mandate.
We are most grateful to these 2 organizations for their financial support and dedication to this work. We also thank a long list of collaborators listed on the Web site including clinicians, researchers, administrators, consumer associations, and other stakeholders from both provinces and national organizations such as Brain Injury Canada without whom the recommendations could not have been possible.
In conclusion, to our knowledge, our approach of consulting and working with end users throughout the development process of the CPG is novel. To date, the process appears to have helped improve users' understanding of CPGs. We cannot ensure the generalizability of the findings about users' involvement in the development of the new CPG. Moreover, healthcare professionals must use their clinical judgement and consider other factors such as patient preferences and resource availability in applying recommendations. Nonetheless, we believe our work has important implications for the field of MSTBI rehabilitation and only time will tell whether our attention to user needs and expectations will positively influence the uptake of knowledge using the CPG and, ultimately, patient outcomes following MSTBI. We encourage all to access our guidelines at https://braininjuryguidelines.org/.
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