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Assessment of Users' Needs and Expectations Toward Clinical Practice Guidelines to Support the Rehabilitation of Adults With Moderate to Severe Traumatic Brain Injury

Lamontagne, Marie-Eve, PhD; Bayley, Mark Theodore, MD; Marshall, Shawn, MD, MSc (Epi), FRCPC; Kua, Ailene, MSc, PMP; Marier-Deschênes, Pascale, BSW; Allaire, Anne-Sophie, MSc; Schmouth, Marie-Eve, MSc; Kagan, Corinne, BA, BPS Cert; Truchon, Catherine, PhD, MSc Adm; Swaine, Bonnie, PhD

Section Editor(s): Swaine, Bonnie R. PhD; Bayley, Mark T. MD

The Journal of Head Trauma Rehabilitation: September/October 2018 - Volume 33 - Issue 5 - p 288–295
doi: 10.1097/HTR.0000000000000429
Clinical Practice Guidelines for TBI: Meeting the Needs of Users

Objective: Stakeholder engagement in clinical practice guideline (CPG) creation is thought to increase relevance of CPGs and facilitate their implementation. The objectives were to survey stakeholders involved in the care of adults with traumatic brain injury (TBI) regarding general perceptions of CPGs, key elements to be included, and needs and expectations about format and implementation strategy.

Settings: Hospitals and inpatient and outpatient rehabilitation facilities providing services to persons with TBI.

Participants: Stakeholders identified as primary end users of the CPG: clinicians, hospital leaders, health system managers, and funders in Quebec and Ontario (Canada).

Design: Cross-sectional online survey conducted between May and September 2014.

Results: In total, 332 individuals expressed their needs and expectations. Despite positive perceptions of CPGs, only a small proportion of respondents used them. Intensity and frequency of interventions, behaviors disorders and cognitive function impairment, and social participation and community life were important subjects to cover in the CPG. Finally, respondents asked for specific recommendations including a ranking of recommendations based on level of underlying evidence.

Conclusion: Respondents have important expectations toward a CPG. We anticipate that early and meaningful engagement of end users could facilitate CPG implementation.

Centre interdisciplinaire de recherche en réadaptation et en intégration sociale (CIRRIS), Université Laval, Quebec City, Quebec, Canada (Dr Lamontagne and Mss Marier-Deschênes, Allaire, and Schmouth); Brain and Spinal Cord Rehabilitation Program, Toronto Rehabilitation Institute/University Health Network, Toronto, Ontario, Canada (Dr Bayley and Ms Kua); Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada (Dr Bayley); Ottawa Hospital Research Institute (OHRI), University of Ottawa, Ontario, Canada (Dr Marshall); Ontario Neurotrauma Foundation (ONF), Toronto, Ontario, Canada (Ms Kagan); Institut national d'excellence en santé et en services sociaux (INESSS), Québec, Quebec, Canada (Dr Truchon); Centre de recherche interdisciplinaire en réadaptation du Montréal métropolitain (CRIR); and Université de Montréal, Montreal, Quebec, Canada (Dr Swaine).

Corresponding Author: Marie-Eve Lamontagne, PhD, Centre interdisciplinaire de recherche en réadaptation et en intégration sociale (CIRRIS), Université Laval, 1050, avenue de la Médecine, Quebec, QC G1V 0A6, Canada (Marie-Eve.Lamontagne@fmed.ulaval.ca).

The project described in this article was funded through the Institut national d'excellence en santé et en services sociaux (INESSS) and the Ontario Neurotrauma Foundation (ONF).

The authors gratefully acknowledge the Institut national d'excellence en santé et en services sociaux (INESSS) and the Ontario Neurotrauma Foundation (ONF) for their support of this project.

The authors declare no conflicts of interests.

This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.

DESPITE IMPORTANT ADVANCEMENTS in clinical sciences and rehabilitation over recent decades, people having sustained moderate to severe traumatic brain injury (MSTBI) still do not consistently receive evidence-based care and services. Clinical practice guidelines (CPGs) provide evidence-informed recommendations for interventions demonstrating good clinical results1 , 2 and thus have been proposed as tools to improve the quality and consistency of healthcare services. Many organizations have published CPGs to enhance the quality of rehabilitation services offered to persons with brain injury,3 including, among others, the Scottish Intercollegiate Guideline Network (SIGN) CPG,3 the New Zealand Guidelines Group CPG,4 and the American Occupational Therapy Association CPG.5 These CPGs vary considerably6 with regard to the clientele covered (pediatrics, adults, and the elderly), to the nature of the injury (traumatic brain injury vs acquired brain injury), to the rehabilitation setting (inpatient, outpatient, community), and to the topics covered, ranging from initial evaluation to community life.

However, traditionally, the awareness, uptake, and adherence to CPGs by clinicians have been low in MSTBI as in others patient populations.7 , 8 For example, Hesdorffer et al9 studied the implementation of the recommendations from the American Medical Association guideline for the medical treatment of severe head injury, observing adherence to only 16% of the recommendations 5 years after the passive dissemination of the CPG to the targeted clinicians. Similarly, Kerr et al10 found that publication of the SIGN guidelines had little impact on the medical management of imaging and hospital discharge disposition for head-injured individuals. These studies suggest that improvements in the guideline development and implementation processes were needed to ensure a significant and sustainable change in the clinical practices.

A current idea rooted in implementation theories and models suggests that uptake of guidelines could be improved by optimizing the fit between guideline characteristics and users' needs and expectations.11 This hypothesis is interesting since, to date, if considerable efforts have been made in improving guideline implementability, little explicit consideration has been paid to users' preferences during the guideline development process. Indeed, Eccles et al2 emphasized that CPG topics should be chosen with consideration for needs of the audience. These authors add that the CPG topics consider the condition's prevalence, cost and effect on premature mortality or avoidable morbidity, and the strength of the evidence for improved outcomes. Nowhere are the users' needs and expectations explicitly mentioned as criteria to define the topics of a CPG. Oxman et al12 also highlighted that stakeholders should be consulted when defining guideline topics. However, these authors did not provide explanations on how to consult them, nor did they address the importance of getting stakeholders' input on guideline usability considerations8 , 13 such as format or preferred implementation process. A rigorous approach to identifying users' needs and expectations, prior to CPGs' development process, could be a promising strategy to facilitate guideline uptake.

In Canada, stakeholders from hospital and rehabilitation settings explicitly requested a CPG to support clinical decision-making regarding rehabilitation of adults with MSTBI since existing TBI guidelines did not completely address all important clinical questions and were not adapted to the Canadian healthcare context. The Ontario Neurotrauma Foundation (ONF) and the Institut National d'Excellence en Santé et Services sociaux (INESSS) joined efforts with researchers to address this gap. An important first step was the assessment of the needs and expectations of frontline users, that is, clinicians and managers from the programs providing rehabilitation to this patient population. We expected that engaging users in the predevelopment of guideline recommendations and then meeting users' needs would increase awareness of the guideline and implementation efficiency and result in improved adherence to guideline recommendations, subsequently leading to better and more consistent quality care.

The goal of this article is to share the process of consultation and its results. Specifically we sought to:

  1. Evaluate users' general perceptions of CPGs (knowledge, acceptance, usefulness, actual use, projected use);
  2. Identify users' needs concerning the key elements to be included in the CPG; and
  3. Clarify users' needs and expectations concerning the format and implementation strategies.
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METHODS

Design

The study consisted of an online cross-sectional survey conducted between May and September 2014.

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Participants

The CPG user population comprised managers, coordinators, and clinicians providing rehabilitation services to adults with MSTBI in Quebec and Ontario in hospitals and inpatient and outpatient rehabilitation facilities. To be eligible, individuals had (1) to have worked with MSTBI clients for at least 6 months and for at least 2 days per week (1 day a week for physicians) and (2) to speak and read either English or French. No exclusion criteria were specified. Patients' preferences and perceptions were not considered in this survey as we planned to include consumers in a separate consultation phase. The ethics committee of the Institut de réadaptation en déficience physique de Québec considered this project to be a quality improvement initiative and thus did not require participants to provide informed consent.

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Recruitment

Participants were recruited with the help of the ONF in Ontario and from the hospital and rehabilitation facility associations in Quebec. The managers of TBI rehabilitation programs in both provinces were first informed of the study through written communications and telephone meetings with the INESSS and the ONF. They then each received a templated e-mail message containing an invitation to participate with a link to access the online survey, which they were asked to forward to all eligible clinicians in their teams, inviting them to take part in the study. The managers were asked to provide the research team with the number of individuals to whom the invitation was sent. Reminders were sent to the managers 2 and 3 weeks after the initial invitation, to be forwarded to the participants.

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Survey

An online bilingual survey was developed specifically for this study using Fluid Surveys. This survey included 3 sections. The first section presented the context and purpose of the survey, whereas the second section detailed participants' eligibility and sociodemographic characteristics. The third section was a questionnaire divided into 3 parts: (1) general perceptions about CPGs (knowledge, acceptance, usefulness, actual use, projected use); (2) domains, nature, and form of the expected recommendations; and (3) characteristics of an optimal implementation process of the CPG.

A Likert rating scale ranging from 0 (“strongly disagree”) to 10 (“strongly agree”) with only the endpoints anchored was used to answer the first 5 questions. The remaining 10 questions were of multiple-choice format. Additional space was provided for comments in each question.

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Analyses

The data were exported from the survey platform and rendered anonymous. To be included in the analyses, participants had to respond to at least 3 of the 15 questions (ie, 20%). In the descriptive analysis, we considered respondents disagreed with the statement when they responded 0 (strongly disagree) to 4, and they agreed with the statement when providing a score from 6 to 10 (strongly agree). A score of 5 was considered neutral. Descriptive statistics were performed using SPSS version 23. Answers to the open-ended questions underwent thematic content analysis for which the coding was double-checked by a second analyst to ensure its representativeness. Throughout this article, themes/content is presented when 10 or more of the respondents made similar comments. Explanatory quotes are presented to clarify the theme where relevant.

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RESULTS

Participants

Five hundred ten individuals completed the section of the survey to determine eligibility. Of these, 487 met the criteria and 332 completed questionnaires were analyzed. It was not possible to determine the number of potential survey participants since programs were encouraged to circulate the survey widely to all of their clinical staff members.

Table 1 shows sociodemographic characteristics of respondents. The majority (64%) of the respondents were from Quebec, and a vast majority were female (83%). Around half of respondents in the sample (55%) worked in rehabilitation institutions with an inpatient unit. More than three-fourths of the respondents (77%) were physicians and other healthcare clinicians, 34% had a few months to 5 years of experience in their position, and 30% of the respondents had a few months to 5 years of experience working with adults with an MSTBI.

TABLE 1

TABLE 1

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General perceptions about CPGs: Knowledge, acceptance, usefulness, and perceived competencies to use

Overall, 47% (n = 158/332) of the respondents knew of at least 1 practice guideline to support the rehabilitation of people with MSTBI. However, only 34% of the documents named by respondents actually met the definition of a CPG. Many people reported being aware of guides, tables, or knowledge synthesis, such as the Evidence-Based Review of Moderate to Severe Acquired Brain Injury (ERABI) or the Guide des meilleures pratiques en réadaptation [Guide for Rehabilitation Best Practices]. The majority of respondents (53%) reported not using a CPG to support rehabilitation of adults with MSTBI as indicated by a score of “0” for the usage of CPG question (see Figure 1). Other sources of evidence listed as being used to frame their interventions included continued education, colleagues' opinions, clinical experiences, scientific articles, or even stroke guidelines.

Using a CPG would be nice, but it is too voluminous and not that useful.

Figure 1

Figure 1

The overall belief that a CPG provides a solid evidence base to support the rehabilitation of adults with MSTBI was high (median score = 8); only 26 respondents (8%) disagreed with this statement (see Figure 1). The respondents specified that CPGs allow for interventions that are effective and efficient, while based on strong and well-interpreted objective evidence from multiple individual studies. They were seen as good training sources for clinicians who have less experience with persons with TBI. CPGs were also valued by respondents who considered they had the potential to standardize practices within teams or across institutions.

[CPGs] provide a framework of what is expected, how care for a certain population can be approached, and a way to facilitate outcome measurement.

Only about half of the respondents (n = 183; 56%) indicated they felt well-equipped to use a CPG (scores ranged from 0 to 4, and the median score was 6). Knowledge, judgment, and comprehension skills gained from their educational background, clinical experience, ongoing training, or the previous use of a CPG were perceived by respondents as providing the necessary competencies to use a new CPG. Some respondents also felt well-equipped because of the anticipated support from their manager, clinical practice leaders, or team members.

I feel that I will have the support of the organization in whatever I develop as I will have TBI expertise guiding my work.

However, for some respondents, basic training is considered a necessity in the implementation of such a guide.

I feel like I would need some training to implement guidelines in the clinical setting.

The lack of time and/or staff and a heavy caseload were the most cited reasons why respondents did not feel well-equipped to use a new clinical guide.

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Identification of users' needs concerning the key aspects/elements to be included in the CPG

Respondents identified the most important aspects of rehabilitation services as well as key elements of the rehabilitation process (see Table 2).

TABLE 2

TABLE 2

First, 318 respondents identified up to 5 important aspects of the rehabilitation services that should be covered by a new CPG to best support practice. The 5 most common aspects identified were as follows: (1) “intensity/frequency of interventions”; (2) “rehabilitation models or reference frameworks”; (3) “duration of interventions”; (4) “continuity-of-care mechanisms”; and (5) “program evaluation measures” (see Figure 2).

Figure 2

Figure 2

The open-ended comments highlighted the need for a CPG to cover the entire rehabilitation process continuum, from the acute care setting to the community. They also stressed the importance of information about treatment modalities and lengths of stay, while focusing on the importance of patient needs first.

We always look at length of stay (LOS) and frequency of intervention. But the entire system is set up to get people through the doors quickly so that by the time they have completed their outpatient rehabilitation they are still far too acute to do things like return to work or return to driving. [...]

The importance of collaboration among different types of rehabilitation providers should also be addressed in the CPG, that is, team members, professionals from different disciplines, partners in the community sector, as well as the involvement of close relatives and patients themselves in the rehabilitation process.

Respondents also reported that the services offered should be comprehensive and holistic to better match the various needs of people with MSTBI:

Emotional/psychiatric issues need to be addressed.

[There is] too much focus on physical rehab[ilitation,] rather than cognitive/communication.

Second, respondents identified up to 10 important sequelae of TBI and elements of the rehabilitation process that should be covered in a new CPG to best support practice. As shown in Figure 2, at least 75% of the sample endorsed the following: (1) “behavior disorders”; (2) “cognitive function impairments”; and (3) “fatigue and sleep disturbances.” The elements mentioned by fewer than 10 respondents are not presented here.

Third, respondents also gave their opinion about social integration and rehabilitation activities that should be included in a new CPG to best support practice (n = 311). Respondents were asked to identify between 1 and 5 important activities, and the 5 most commonly identified were as follows: “social participation and community life” (67%); “skill maintenance and quality of life” (61%); “work, school, and productivity” (58%); “caregiver support” (58%); and “psychosocial strategies” (50%). They indicated that the social integration and rehabilitation activities presented in the survey should be covered in a new CPG (psychosocial strategies, sports and physical activity; social participation and community life; leisure activities; caregiver support; skill maintenance and quality of life; activities of daily living; household activities; home adaptations; work, school, and productivity; driving and travelling; responsibilities).

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Users' needs and expectations concerning the format and implementation strategies

The respondents noted that the recommendations included in the CPG should be “specific recommendations (who, when, how) when possible” (68%) and should propose a “ranking of recommendations based on the level of underlying evidence” (53%).

When asked to identify their top 2 considerations for the CPG format, most respondents (77%) stated that an “electronic copy” may facilitate the use of a new CPG, but “Summary paper copy” (38%) and “Online audiovisual format (podcasts, webinars)” (35%) were formats also mentioned.

When questioned about what could facilitate CPG use, two-thirds of respondents (69%) replied that “Training on the CPG” was an important determinant of the implementation of recommendations within their practice. The “Presence of copies of the CPG and tools used in the program” (58%) and the “Use of the CPG by their colleagues and team” were important determinants of use. Most of the qualitative comments provided related to the usability of the CPG, for example, versions provided in the working language (ie, French) and format support resources such as a community of practice.

Finally, respondents commented on complementary tools likely to facilitate the use of a new CPG. The 3 most common responses were as follows: (1) “Presence/availability of recommended treatment protocols and resources” (63%); (2) “Lists of interventions provided in relation to the CPG recommendations” (61%); and (3) “Presence/availability of recommended assessment tools and resources” (60%).

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DISCUSSION

To our knowledge, consultation of end users as part of the development process of a CPG is a novel methodological step, and we found no evidence of similar consultation in the literature. Despite showing a positive attitude toward the new CPG, very few respondents knew about or used CPGs and many did not feel well-equipped to do so. There were a variety of subjects of interest for the respondents, highlighting the need for further guidance with regard to many aspects of rehabilitation of persons with TBI that have not been previously covered in CPGs. Finally, end users expressed their interest about nontraditional and more technologically current CPG formats and implementation strategies, asking for electronic and synthesized versions and a variety of implementation strategies (case study, role-playing, multimodal).

The respondents appear representative of allied health professionals questioned in other studies. In fact, literature consistently reports positive attitudes of occupational therapists and physical therapists toward evidence-based practice in general14 , 15 and toward CPGs in particular.16 However, our study illustrates that the underuse of CPGs in rehabilitation of adults with MSTBI might, in part, be due to a lack of knowledge of existing CPGs and/or to a suboptimal understanding of “what is a CPG?” Just over 50% of respondents were not aware of any CPG, and among those reporting they knew of at least one CPG, many of them named documents that were actually reports, books, or other types of references. Despite their potential value, these documents neither are presented in the appropriate format (eg, include recommendations) nor may provide evidence-based content. The lack of awareness of CPGs' existence is a primary factor to address in guideline implementation. It is crucial to remember that passive dissemination of information remains a very first step in the implementation process. In this vein, we believe that inviting frontline healthcare providers to respond to our survey to assist in creating a new CPG is a novel first step to implementation of the guideline. Their engagement should assist in establishing early buy-in of end users in the CPG development process. In fact, while just over half of the respondents reported feeling equipped to use guidelines, they mentioned the need for further guidance to incorporate guidelines into their practice. Our results are similar to those of Weng and colleagues,14 who found that despite positive beliefs and attitudes, allied health professionals deemed their knowledge and skills insufficient to implement evidence-based practice.

Our study also informs us about users' specific content areas of interest. Respondents identified a number of elements deemed important, suggesting the need for guidance in many areas of the rehabilitation process for persons with TBI. It is not surprising that users would like guidance about the ideal models of care and intensity and duration of rehabilitation, but some responses also indicated the need for guidance about innovative therapies. However, some of these new areas may not yet be supported by high-quality evidence due to the small amount of research on the topic. Indeed, considering the paucity of either empirical or experiential evidence, it is difficult to produce robust recommendations to meet these needs of clinicians. This represents a limit of CPGs in general, that is, in general not well recognized by clinicians and researchers. In fact, CPGs are often deemed as state-of-the-art tools to improve the quality of cares, but one must recognize that their robustness does not allow for the inclusion of very innovative therapeutic avenues or for emergent preoccupation such as the use of social media or impact of some legalized substances (marijuana) on TBI. Until robust evidences are produced on these topics, CPG users have to rely on experts opinions to orient their practices. Again, this result emphasizes the necessity to continue to educate potential users about the exact nature, process of creation, and specific content of CPGs to clarify the expectations that users might have toward this knowledge translation tool.

It is interesting to note that, in regard to specific brain injury sequelae, the topics deemed most important to cover related to behavior, cognition, and fatigue and sleep disturbance being of interest to 87%, 87%, and 75% of the respondents, respectively. These issues may be more prevalent early in the rehabilitation process and also some of the most challenging to deal with; indeed, given the importance of cognition problems, specific guidelines exist to support the cognitive rehabilitation of persons with TBI.17 These issues are more specific to TBI than motor impairments or pain that may be more familiar to service providers with experience in persons with stroke or spinal cord injuries.

Finally, interestingly, respondents requested the recommendations be specific as opposed to general, be accessed via electronic and online formats rather than traditional extensive paper versions, and consider important protocols and resources, lists of interventions, and communication tools for patients. These results emphasize the important need for improved implementability1 , 8 , 18 of CPGs for MSTBI. In fact, some authors have already stressed the fact that despite their scientific robustness and advantage over traditional individual scientific publications, CPG recommendations are not easy to put into practice and still require a certain amount of translation by clinicians.19 , 20 Indeed, tailoring the CPG to intended users, providing, for example, multiple formats and alternate versions,18 or creating or providing tools and resources (protocols, lists, outcome measures)13 , 19 to explain how a given recommendation could be put into practice should improve its implementation.

The results of the study were instrumental in the creation of the ONF-INESS TBI-CPG to be discussed in a separate article (see other article in our series). Our study has some limitations and some strength. Its innovative nature precluded the use of an existing, validated tool or questionnaire to gather respondents' perceptions. In addition, the large number of potential users to complete the survey and their geographic dispersion limited the use of other data collection techniques such as interviews or focus groups that could have provided a deeper understanding of their needs and expectations. Respondents, however, provided numerous comments and suggestions, which expanded on the answers to closed-ended questions and allowed for a better understanding of their responses. For methodological reasons, we also chose to limit our survey to clinical users of the CPG and to delay the consultation with persons with TBI and their close relatives. We sent the invitation to a large number of potential users from the 2 provinces to participate in the survey and were pleased to obtain more than 500 completed surveys. However, this survey would need to be repeated in other jurisdictions with differing health systems to ensure the generalizability of the findings internationally, as our results are representative of the reality prevalent in some regions of Canada (Quebec and Ontario) and reflect predominantly the needs and expectations of occupational and physical therapists who are important rehabilitation providers in our context.

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CONCLUSION

Inconsistent implementation of CPG recommendations is often reported; however, to our knowledge, few empirical efforts have assessed and described the needs and expectations of guideline users before producing and implementing a CPG. We anticipate that early and meaningful engagement of end users may also facilitate implementation. Tailoring CPGs to the needs and expectations of potential users intuitively appears as an interesting avenue to increase uptake and, ultimately, the quality of care. Further research is required to determine the effectiveness of such strategies as well as the mediating factors that could influence the adoption of a CPG.

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REFERENCES

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Keywords:

guidelines; knowledge translation; rehabilitation; therapeutic approaches for the treatment of CNS injury; traumatic brain injury

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