Publication
Research Article
Background: To improve the quality and standard of care, considerable resources are invested to produce clinical guidelines for multiple sclerosis (MS) management. We aimed to investigate MS clinicians’ use of guidelines and factors that influence use.
Methods: Interview guides were developed using Fisher’s framework to assess factors that influence guideline application (categorized as personal, guideline related, and external). Nurses and neurologists experienced in MS health care were recruited through convenience sampling. Semistructured online interviews were conducted from June 2023 to October 2023, and data were analyzed using inductive and deductive methods.
Results: We interviewed 16 MS clinicians (10 nurses, 6 neurologists). Despite most clinicians believing that guidelines can improve consistency, safety, and quality of care, the application of guidelines was highly variable. Participants reported that clinical decision-making in MS management involves integrating guideline recommendations with clinical reasoning while considering patients’ circumstances and preferences, the complex nature of MS, and resource constraints. Personal barriers to guideline application included low awareness and familiarity. Guideline-related barriers included evidence, plausibility, accessibility, layout, and complexity. External barriers included a lack of resources. Facilitators were mostly guideline related, including relevance to local protocols, covering complex treatment or unfamiliar topics, and when guidelines were up to date and credible. Participants suggested various strategies to overcome barriers to guideline use.
Conclusions: Australian MS clinicians reported low awareness and high variability in the application of national and/or international MS guidelines. Clinical practice guidelines should be adaptable to local contexts, accessible, and regularly updated. Multifaceted strategies to better distribute and champion guidelines should be employed.
From the Disability and Health Unit, The Melbourne School of Population and Global Health (IW-B, CHM) and the Melbourne School of Health Sciences (MK), The University of Melbourne, Melbourne, VIC, Australia; the Discipline of Exercise Science (YCL) and the Personalised Medicine Centre, Health Futures Institute (YCL, AK), Murdoch University, Perth, WA, Australia; Perron Institute, University of Western Australia, QEII Medical Centre, Perth, WA, Australia (YCL, AK); Health and Social Care Unit, the School of Public Health and Preventive Medicine (DA) and Alfred Health (JH), Monash University, Melbourne, VIC, Australia; School of Medical, Indigenous and Health Sciences, University of Wollongong, Wollongong, NSW, Australia (YP); and the Institute of Neuroimmunology and Multiple Sclerosis Research, University Medical Center Hamburg-Eppendorf, Hamburg, Germany (CH). Correspondence: Claudia H. Marck, The University of Melbourne, Grattan Street, Parkville Victoria, 3010, Australia; email: claudia.marck@unimelb.edu.au.
Management of multiple sclerosis (MS) is complex and requires multidisciplinary care. Over 33,000 people live with MS in Australia, and the prevalence is increasing faster than population growth.1 However, although the standard of medical care is generally high in Australia, recent reports conclude that the standard of MS care is variable and impacts health outcomes. For example, 31.5% of people living with MS in Australia lack access to a specialist MS nurse, which is associated with worse health outcomes.2 Further, MS care provision in the Australian Capital Territory was reported to be fragmented, below the standard of recommended care, and lacking multidisciplinary integrated care.3 Other reports of inconsistencies or gaps in MS care include family planning,4 tobacco smoking,5 mental health,6 and referral to allied health for symptom and comorbidity management.7 These findings are in line with those of a large study that found that Australian adults received appropriate evidence-based health care in only 57% of health care encounters.8
Opportunities to improve the standard and quality of care should be identified to ensure optimal outcomes and health equity for all Australians living with MS. Clinical practice guidelines (hereafter, guidelines) are designed to improve and maintain standards, effectiveness, and consistency of care; reduce inappropriate care; and reduce geographic variations and other inequities.9,10 High-quality guidelines are based on rigorous syntheses of best available evidence and expert consensus to support clinical decision-making. The application of guidelines should be viewed through the lens of comprehensive clinical decision-making, considering elements such as professional expertise, patient preferences, and practical feasibility.
The acceptability and uptake of guidelines among MS clinicians remain unclear in Australia, and only limited data exist globally. One Australian study assessed compliance among radiologists with the 2003 Consortium of Multiple Sclerosis Centers MRI diagnostic protocol and found incomplete compliance, potentially leading to incorrect or delayed diagnosis.11 Results from 2 German studies found that although there was an overall high level of agreement among 327 neurologists with the German MS treatment guidelines, many considered them too prescriptive and conservative.12,13 Findings from a 2024 study identified a large gap between the international MS Brain Health quality standard and its real-world adaptations among 71 German neurologists, many of whom reported that the standard was too ambitious, mostly due to a lack of resources.14
Although barriers to MS guideline application are largely unknown, from other clinical areas, we know that barriers are commonly clinician related (such as lack of awareness, agreement, self-efficacy, outcome expectancy) or related to organizational factors such as lack of time and resources.10,15 Guideline-related barriers are also commonly reported, including shortcomings in validity, format, accessibility (eg, paywall, language barrier), credibility, and usability or specificity.10,16 Our review of 31 guidelines regarding complementary therapies in MS showed variable methodological quality,17 which may lead to suboptimal implementation. In addition, our systematic review of 19 physical activity guidelines for application by MS clinicians showed that these guidelines rarely specify the actions that clinicians should take, likely hindering application.18 Understanding barriers and facilitators to guideline application is the first step to creating strategies to improve guideline implementation and, ultimately, health outcomes.10
Therefore, this study aimed to investigate the extent to which MS clinicians apply treatment guidelines and the barriers and facilitators to application. The study is underpinned by Fisher’s framework, designed to assess factors influencing guideline application, which includes 3 domains: personal/clinician factors, guideline-related factors, and external factors.19
Study Design
This study was a cross-sectional qualitative exploration using online semistructured interviews. The interview guide (See Table S1, which is included as a PDF at the end of this article.) was informed by Fischer et al’s framework,19 tested for content and construct, and refined iteratively by the research team that included clinicians, researchers, and people with lived experience of MS (n=9). Ethics approval was obtained through the University of Melbourne Human Research Ethics Committee (Ethics ID 2023-26508-41004-3). We report our findings using the Consolidated Criteria for Reporting Qualitative Research checklist.20
Research Team and Reflexivity
Interviews were conducted by 1 of 3 researchers (I.W-B., junior medical doctor and researcher, female; C.H.M, researcher, female; and Y.C.L, researcher and physiotherapist, female) with relevant training and experience in interviewing for clinical practice and/or qualitative research. There was no established relationship between the interviewer and any participants, and participants did not have knowledge about the interviewer that may have impacted the interview. Although several authors have previously been involved in developing guidelines for MS management, none have any competing interests or biases relevant to this work.
MS clinicians were eligible to participate if they were neurologists or MS nurses currently delivering or overseeing health care for people with MS in Australia in a public and/or private capacity. The sample represents the main clinician groups who deliver MS care in Australia and are the primary target audience of most MS guidelines. Participants were recruited through convenience sampling, including direct emails to clinicians and MS clinics, newsletters and websites of professional bodies and MS societies, online social media, professional contacts of our research team (via email or verbal invitation), and snowballing recruitment.
Data Collection
Researchers conducted one-to-one, semistructured 20- to 40-minute interviews online between June 2023 and October 2023. Interviews were conducted and recorded using an online platform (ie, Zoom or Microsoft Teams, depending on participant preference). Verbal informed consent was obtained at the start of each interview. Transcripts were not returned to participants for comment, but participants were asked to email the interviewer if they had any additional thoughts.
Data Analysis
Data were analyzed using an iterative deductive-inductive thematic approach.21 An initial coding tree was created a priori based on the framework by Fischer et al,19 with theme descriptions clarified by Cabana et al.15 Data were first coded deductively according to Fischer et al’s framework and further coded as barriers, facilitators, or preferences and needs. Inductive coding was then performed to create new codes for emerging themes and delete irrelevant codes. Two researchers (I.W-B., C.H.M.) independently coded 3 transcripts, discussed discrepancies to reach consensus and ensure reliability, and then consulted with a third researcher (Y.C.L.) to reach agreement on the draft coding structure. One researcher (I.W.B.) coded the remaining transcripts. We integrated the deductive and inductive coding to identify final themes (Table 1). Exemplar quotes are provided with the participant’s profession and years in specialist practice. Data were managed using NVivo 14 (QSR 14.24.0, 2023).
Table 1. Guideline Application Themes and Subthemesa
We interviewed 10 MS nurses and 6 neurologists from public and private settings (11 women and 5 men); 10 had 10 or more years of neurology specialty experience (Table 2). Clinicians used the term guidelines to describe both formal resources developed by a professional body or group of experts (external guidelines) and local hospital or clinic protocols (internal guidelines). The application of external guidelines was highly variable among clinicians and generally lower among neurologists compared with nurses, whereas internal guidelines were more widely used. Barriers and facilitators to guideline application are summarized below and in Table 3. Table 4 lists strategies proposed by participants to overcome commonly identified barriers.
Table 2. Participant Demographics
Table 3. Overview of Facilitators and Barriers to Guideline Use Among Multiple Sclerosis Clinicians in Australia
Table 4. Strategies to Overcome Common Barriers to Guideline Application Identified in Our Qualitative Study
Factors Impacting Guideline Application
Clinician-Related Factors
Awareness and familiarity with guidelines. Clinicians were familiar with internal guidelines and protocols produced by their organizations. Most clinicians were also aware of guidelines produced by recognized bodies such as the United Kingdom’s National Institute for Health and Care Excellence (NICE), the Brain Health Initiative, the American Academy of Neurology, and Australian guidelines for treating MS during the COVID-19 pandemic, which were produced by a team of Australian and New Zealand neurologists.22,23 Clinicians often read new external guidelines at the time of publication, but they rarely returned to them and could not recall specific content, resulting in low familiarity, a major barrier to guideline application (quotations associated with clinician-related factors are available in Table 5). Experienced clinicians frequently reported relying on their clinical acumen rather than a particular guideline. Inversely, clinicians often reported using guidelines when faced with an unfamiliar or complex clinical scenario or if they did not manage many individuals with MS.
Table 5. Clinician-Related Factors Impacting Guideline Application
Agreement with the guidelines. Despite generally agreeing with guideline recommendations on clinical practice, clinicians consistently expressed a strong desire to reserve autonomy in their practice and adapt recommendations to their patients’ contexts and preferences. If clinicians disagreed with the content of the guidelines, this was a strong barrier to application. Disagreement with guideline recommendations was often contextualized within the broader lack of consensus among neurologists, which was attributed to limited data and clinician differences in risk management.
Outcome expectancy. Most clinicians agreed that guidelines improve patient outcomes and clinical practice. Nurses often remarked that both internal and external guidelines could ensure standard of care, improve consistency in practice, be a part of practice review, provide a foundation on unfamiliar topics, reassure that your practice is evidence based, help with busy workloads, keep all providers up to date, and increase generalists’ comfort levels with the delivery of new therapies. These practice improvements were broadly thought to lead to higher quality care and better safety and health outcomes for patients. However, some neurologists were concerned that when guidelines are out of date or overly conservative, this may adversely affect patient outcomes; this was cited as a major barrier to implementation.
Guideline-Related Factors
Evidence. Most clinicians regarded guidelines produced by well-known professional bodies (eg, MS Australia, NICE) as evidence based, which they identified as a facilitator to guideline use.However, clinicians noted variation in reporting of levels of evidence in guidelines, leading to skepticism in the development process, a barrier to adoption(quotations associated with guideline-related factors are available in Table 6).
Table 6. Guideline-Related Factors Impacting Guideline Application
Clinicians perceived external guidelines as often out of date given the fast-moving pace of MS research, particularly in relation to disease-modifying therapies (DMTs). However, some neurologists trusted that guidelines developed by reputable organizations have established processes for regular (ie, at least annual) updates. Published updates of guidelines were perceived to prompt discussion within clinical teams.
Plausibility of recommendations. Clinicians generally attributed trustworthiness to guidelines developed by appropriate experts, including neurologists, nurses, pharmacists, allied health providers, and consumer organizations. The aforementioned COVID-19 guidelines were quoted as an example of highly trustworthy and plausible guidelines. Endorsement and/or promotion of guidelines through reputable organizations also bolstered clinicians’ confidence in their validity and facilitated application.
Most neurologists expressed major concerns that DMT recommendations in international guidelines may be influenced more by health care funding than by evidence on patient outcomes, reducing clinician confidence in them. In addition, some believed guideline producers were reluctant to favor certain pharmaceutical companies over others. These concerns were major barriers to guideline application.
Complexity and layout of guidelines. Clinicians noted that long, complex documents were often impractical given the practice time constraints; they preferred brief and digestible documents, checklists, and visual aids to facilitate day-to-day application. Most participants said guidelines do not need to consider comorbidities; this is a role for the clinician when interpreting the guidelines.
Accessibility and availability. Clinicians commonly reported difficulties in accessing MS guidelines due to their dispersion across multiple platforms as well as restrictions imposed by paywalls and login requirements; these were a major barrier to application. At the time of the interviews, clinicians cited helpful guidelines on topics such as treatment initiation, management and monitoring of infusion therapies, acute therapy for relapses, some symptom management, and new and evolving topics such as COVID-19. Clinicians reported a lack of available guidance on DMTs during pregnancy and breastfeeding; management of primary progressive MS; treatment cessation; stem cell therapy; emotional well-being; and management of pain, fatigue, cognition, and continence as common yet complex symptoms requiring individualized treatment.
Applicability. Many clinicians were cautious about using external guidelines from countries other than Australia. Clinicians consistently expressed the need for local area-specific guidelines due to differences in funding, medications, resources, and available services across countries. Most participants reported the application of internal guidelines and protocols because they are often adapted from external guidelines to be more relevant to the local health context by groups they trusted to be up to date. Clinicians expressed a need for guidelines to include actionable recommendations or links to services and/or resources.
Target user. A cohesive guideline for all MS clinicians, including neurologists, MS nurses, and allied health providers, was seen as a crucial facilitator to providing comprehensive and consistent care. Clinicians also noted that guidelines could be particularly useful for clinicians who do not frequently treat people with MS as well as for junior clinicians. Some clinicians stated that general practitioners should also have guidelines that are relevant to their scope, due to access barriers to MS neurologists in some areas of Australia.
Target patient. Clinicians often found that guidelines were applicable to most people living with MS, but they still emphasized the need to tailor recommendations to each patient. This was especially prominent when it came to family planning and lifestyle or health behavior. Having guidelines available for patients (eg, handouts) aided consistent messaging and combated misinformation. Several clinicians noted the heterogeneity of MS disease course and symptoms as a barrier to development and application of guidelines. Some clinicians noted that the complexity of MS management has gone up exponentially and that there has been a shift toward “living well with MS” but the resources have not kept up.
External Factors
Health care systems and funding. Clinicians regularly spoke positively about the freedom they have in Australia when it comes to prescribing high-efficacy DMTs. The mandated guideline compliance and restrictions on prescribing in some other countries were thought to hinder best practices and patient outcomes (see Table 7). However, it was also reported that limited access to an MS nurse specialist impacted best care.
Table 7. External Factors Impacting Guidelines
Workplace resources, policies, and procedures. Several clinicians reported that team-based practice and multidisciplinary teams included MS nurses as facilitators to guideline application; these accommodations are often facilitated in the public sector but not in private practice. Having internal guidelines available and being involved in a regular review process kept clinicians up to date. Automated reminders generated by hospital systems to review guidelines and policies were reported as helpful.
Lack of resources, which translated into time pressure and staff shortages, resulted in difficulty meeting target time frames set by guidelines. In particular, the inequitable access to resources between clinics, especially in the geographical context of Australia, was highlighted frequently as a barrier to meeting guideline recommendations. Time was repeatedly discussed as the major barrier to guideline application; however, some clinicians also mentioned that if optimized, guidelines could make clinical practice more time efficient.
Professional development and training. There was little mention of formal training on guideline application. Clinicians were receptive to educational workshops and conferences or incorporating further guideline education into journal clubs and unit meetings.
Collaboration. Rather than relying on guidelines, clinicians turned to their colleagues and wider professional networks for information sharing and/or news and guidance. Working with a larger team meant they were more likely to hear about guideline updates through colleagues. Collaboration was therefore described as both a barrier and a facilitator to guideline application.
Social and clinical norms. Most clinicians reported a working culture that is open to guidelines, where clinicians share them and consider integrating the recommendations into their practice, but some reported that guidelines are not promoted. Rather, clinicians reported that practice is commonly determined by the senior medical consultant. They acknowledged that this leads to between-clinic variability in how people with MS are treated. This practice was reported as being particular to MS management, whereas practice in other neurological diseases or other specialties is thought to be more closely directed by guidelines. The trend in guideline application over time is unclear; some say that there are more guidelines available and more clinicians using them, but others say that they have not noticed trainees using them any more than consultants.
Our qualitative study results show that the application of MS management guidelines among Australian clinicians varies widely. Preference was given to using internal (hospital/clinic) guidelines, followed by Australian guidelines, over international guidelines due to differences in resources and available treatments and services across countries, influencing applicability. Barriers to applying evidence-based treatment guidelines were mostly related to the guidelines themselves, followed by clinician-related barriers; a few external barriers were also reported.
Although many clinicians were aware of national and international guidelines, they were not overly familiar with their content. There was overall agreement that guideline application improves the consistency, safety, and quality of MS care (more pronounced among nurses than neurologists) but that guideline application should be considered within the broader context of clinical decision-making. Some neurologists with decades of clinical experience reported that they do not apply external guidelines at all but rely on their clinical acumen. This selective uptake, especially by experienced clinicians, has been reported previously in countries where guidelines are not mandated.24 Others commented that guidelines provide an opportunity to integrate new evidence into practice and reduce the risk of outdated or biased decision-making. Most clinicians reported a working culture that is open to guideline application. However, it was also commonly reported that the senior medical consultant sets the direction in terms of treatment patterns, leading to variability in MS care between clinics or hospitals. Inequities in MS care between clinics or geographical areas have been investigated and reported on in the United States and Canada and are shown to impact health outcomes.25,26 Research from the United Kingdom showed DMT prescribing differences between neurologists due to variability in familiarity with the drugs and their perceived risks as well as organizational and peer network cultures; the conclusion was that more needs to be done to achieve equity in MS care.27
Our participants voiced substantial criticism of international DMT prescribing guidelines. A common argument was that these guidelines did not have best outcomes for patients at their core but may instead have been driven by economic factors (ie, conservative DMT management to keep costs down). Another concern was that they were influenced by pharmaceutical companies (ie, reluctance to strongly favor some DMTs over others). These concerns are in line with findings from Germany12,13 and the United Kingdom.27
These concerns may reflect a change in the field that is moving away from the treatment escalation paradigm (initiation of a moderately effective DMT and, if needed, escalating to a more efficacious DMT with potentially higher risks) toward the early intensive/aggressive (initiation of high-efficacy DMT early) approach.28 As the long-term benefits, risks, and costs of this approach are somewhat unclear, several treatment prescribing guidelines continue to recommend the escalation approach. However, the clinicians in our study were widely supportive of the early intensive approach, in line with the literature12,13,28-30 and with recently published Australian guidelines.31 Clinicians appreciated the absence of mandated prescribing guidelines in Australia; in contrast, neurologists from the United Kingdom reported feeling restrained by mandated NICE guidelines.27 Further, there were concerns that guidelines (especially regarding DMTs) were at risk of being outdated quickly. Suggestions were made that guidelines that using a living evidence approach for rapid updates when new evidence is published could negate this issue. This approach has been shown feasible and acceptable in stroke management32 and diabetes.33
Several areas that lacked guidelines were identified (family planning, primary progressive MS, treatment cessation, stem cell therapy, emotional well-being, management of pain, fatigue, cognition, and continence), although some relevant guidelines were published after our data collection.31,34 Strategies to overcome the most common barriers identified in our study include ongoing promotion and distribution, educational initiatives, endorsement by leaders and professional bodies, demonstration of improved patient outcomes, use of best practices for guideline development and regular updates, stakeholder involvement, area-specific guidelines, demonstration of accessibility and usability, and a centralized guideline library (Table 4).
Strengths and Weaknesses
Our multidisciplinary team included people with lived experience of MS, clinicians, and researchers, most of whom have contributed to MS guideline development; this strengthened the development of the interview guide and the interpretation of our findings. This is an important first step to understand and improve the implementation of guidelines to improve clinician application, given the lack of data in this area. Limitations of this study include the small sample size and use of convenience and snowball sampling; however, the convergence of themes across the interviews, the international literature included, and the diverse roles of the respondents increase our confidence in the results. Our study focused on Australian MS clinicians, which may limit generalizability to the international community.
Implications
and implementation of guidelines, with the aim of improving standards and equity in MS care. Guidelines are often simply released (eg, via journal publications) but not implemented.24 Our study is especially pertinent given the recently published guidelines for MS management in Australia, which included 80 recommendations, a large collaborative effort from MS clinicians with input from a range of stakeholders.31,34 Significant resources go into developing guidelines, and their appropriate implementation ensures a return on resource allocation. Further, access to Australian health care is fragmented and poor for segments of Australian society,3 and guidelines have the potential to play a role in reducing inequities.35
Guideline developers, health care organizations, professional bodies of clinicians, and clinicians caring for people with MS can use the strategies we identified (Table 4), combined with the literature on guideline implementation,19,24,36,37 to work together to better implement where appropriate. These strategies can be effective to improve practice and patient outcomes; however, heterogeneity and gaps in evidence remain.38,39 Further studies should investigate whether these strategies lead to (1) a change in MS clinician practice, (2) improved health outcomes for people with MS, (3) reductions in inequities in MS care and health outcomes, and/or (4) health care efficiencies and cost savings.
The results of our qualitative study found that the application of national or international MS treatment guidelines among MS clinicians in Australia was generally low. We identified barriers and facilitators to guideline application with associated strategies to improve guideline implementation. With considerable resources invested in the development of high-quality and evidence-based guidelines, improving implementation has the potential to reduce variability in treatment quality and advance standards and equity of MS care through more comprehensive and contemporary care.
Disclosures: Yasmine Probst and Darshini Ayton declare that they are people living with multiple sclerosis (MS). Claudia H. Marck, PhD, was funded by a University of Melbourne Momentum fellowship and an MS Australia fellowship (20-216). Yvonne C. Learmonth was funded by an MS Australia fellowship (21-3-053) and the Western Australia Department of Health (WANMA EL 2022). Darshini Ayton is funded by a National Health and Medical Research Council Emerging Leader 1 fellowship (2021-2025; APP1195357). Yasmine Probst was funded by an MS Australia Senior fellowship (21-3-014). All other authors declare no competing interests.
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