- Exercise yields benefits for fitness, symptoms, functions, and quality of life among persons with multiple sclerosis (MS).
- Persons with MS do not engage in sufficient amounts of health-promoting physical activity, and this supports the search for new approaches targeting exercise promotion.
- We developed a conceptual model for the patient-provider interaction as an approach for exercise promotion in multiple sclerosis (MS).
- We present two sets of driver diagrams that can inform interventions necessary for exercise promotion through the patient-provider interaction in MS.
- We outline the next steps in research and a long-term goal for changing the paradigm and approach of exercise promotion among persons with MS.
Multiple sclerosis (MS) is an immune-mediated disease of the central nervous system (CNS) with secondary neurodegenerative processes in its pathogenesis (1). MS is clinically characterized by relapses, lesions, and progression of neurological disability brought about by inflammatory demyelination and transection of axons, along with ongoing neurodegeneration involving loss of neurons. The disease activity and damage results in symptoms such as fatigue, depression, and pain, as well as dysfunction of ambulation, balance, sleep, and cognition. Those manifestations of MS may compromise quality of life (QOL), independence, and participation. The first line of treatment involves disease-modifying drugs that target immunological signaling proteins or populations of immune cells, but persons with MS still experience residual symptoms and dysfunction. This underscores the importance of other approaches such as exercise, defined as planned, structured, and repetitive physical activity with the objective of improving fitness and other outcomes (2), for managing the residual consequences of MS.
There has been abundant research over the past 25 yr examining the benefits of exercise training in MS, and this research expands on our understanding of physical activity, exercise, and fitness in the general population (3,4). One recent scoping review reported that 54 studies have been published on exercise training in MS during the past decade alone (5). Exercise training can improve aerobic and muscular fitness (6), fatigue (7), depression (8,9), walking (10,11), balance (12), cognition (13), and QOL (14) in MS. There may be additional benefits for CNS structure (15), sleep quality (16), and cardiovascular/metabolic comorbidity (17,18). Exercise training has been associated with reduced rates of relapses (19) and slowed disability progression (20). The safety profile of exercise in MS, based on the occurrence of adverse and serious adverse events, is comparable with that of the general population of adults (19). The cumulative evidence has yielded guidelines for prescribing exercise training in persons with MS who have mild or moderate neurological disability (21) that can be implemented for promotion within comprehensive MS care (22).
Unfortunately, the majority of people with MS do not engage in sufficient amounts of health-promoting physical activity or exercise behavior. People with MS engage in substantially less physical activity than healthy controls from the general population (23). There is evidence that fewer than 20% of people with MS from the United States engage in recommended amounts of moderate-to-vigorous physical activity necessary for health benefits compared with 40% of healthy control samples (24).
There is an obvious disconnect between evidence of benefits and rates of participation. The presence of this disconnect is alarming because the chasm between benefits and participation is larger in MS than the general population, and exercise might be critically important in a disease wherein people are facing functional declines and other outcomes (25). The problem is not necessarily linked with compliance regarding specific exercise programs — more than 80% of people with MS who are enrolled in randomized controlled trials of structured, supervised exercise training complete the programs (19). We further note that the difference in physical activity levels between MS and healthy controls has not changed over the past 25 yr (23), although the evidence base for benefits has expanded considerably during the past decade (5). This disconnect may reflect a problem with the successful translation of knowledge about exercise and its benefits into real-world behavior change in MS.
The translation of evidence into practice through comprehensive care by health care providers might be a key factor for the successful adoption and maintenance of exercise behavior in persons with MS (26). Research indicates that people with MS seek information on behavioral approaches for managing MS and optimizing wellness (27,28), particularly exercise and diet. One study of 930 adults with MS in the United States indicated that between 34% and 50% of the sample, depending on the health care setting, wanted substantially more information about exercise and nutrition in the context of health care services (29). Qualitative research has indicated that people with MS want the promotion of exercise behavior through interactions with health care providers (21,30), and the latter group is supportive of exercise promotion as part of comprehensive MS health care (31). The notion of focusing on providers and health care settings for promoting exercise is not necessarily new (32–34), but it represents a fresh perspective in MS that is particularly suited for this population considering the importance placed on ongoing, comprehensive care through the patient-provider interaction.
Our central hypothesis is that the patient-provider interaction offers a new and exciting opportunity for promotion of exercise behavior among persons with MS. Accordingly, the current paper builds on recent qualitative research (30,31,35) for developing a conceptual framework and generating driver diagrams that support the patient-provider interaction as a potent opportunity for the promotion of exercise behavior in persons with MS. We organized the article in four sections, wherein we (a) reviewed formative, qualitative research on the needs of people with MS for exercise promotion through health care providers (30,31,35); (b) developed a conceptual framework that undergirds the patient-provider interaction for exercise promotion in MS; (c) presented driver diagrams for identifying specific targets that inform interventions for addressing the needs of patients and health care providers for exercise promotion in MS; and (d) identified next steps involving the conceptual model and driver diagrams for exercise promotion in MS.
Formative, Qualitative Research
We have undertaken two qualitative research studies focusing on the patient-provider interaction for promoting exercise behavior change and maintenance over time in MS (30,31,35). The first study explored the needs and wants of people with MS regarding exercise promotion through health care providers (30). Using a criterion sampling strategy, we purposefully recruited persons with MS (N = 50) who had mild or moderate neurological disability and were insufficiently active, moderately active, or sufficiently active; the levels of disability status map with those outlined in the guidelines for physical activity behavior in MS (21). We adopted a semistructured, one-on-one interview approach that was guided by a script developed based on discussions with researchers, health care providers, and persons with MS. The data supported the interest of people with MS in receiving exercise promotion through providers. The data further yielded three themes indicating a need for (a) knowledge on the benefits of exercise and its prescription, (b) materials supporting home and community exercise, and (c) strategies for initiating and maintaining exercise behaviors that are delivered through interactions with health care providers (30). We further analyzed those data for identifying the preferred format and source of delivery for exercise information from providers (31). We learned that persons with MS want exercise information through in-person consultations with health care providers, print media, and electronic media and by health care providers with expertise in MS such as neurologists and nurses and exercise such as physical and occupational therapists.
The second study explored the needs of health care providers for promoting exercise behavior among persons with mild or moderate MS (35). We purposefully recruited neurologists, occupational therapists, physical therapists and nurses (N = 44) using a criterion-sampling strategy. We again undertook semistructured, one-on-one interviews that were guided by a script developed based on discussions with researchers, health care providers, and persons with MS; the interviews further included a secondary, reactionary inquiry based on the identified needs of patients with MS. The data indicated that providers too are interested in, and capable of, addressing the unmet needs of people with MS for exercise promotion (35). The emerging themes indicated that providers identify opportunities for exercise promotion through the health care system and comprehensive team during clinical appointments using appropriate patient tools and strategies (35). Providers particularly seek professional and service training for information on benefits of exercise, provision of protocols for exercise promotion, and prescriptive exercise guidelines for promoting behavior change among people with MS (35). One clear message was heard from our discussions with providers — such information must be organized into a conceptual framework that drives the development of interventions for meeting the unmet needs of persons with MS for exercise promotion.
The conceptual model for describing the patient-provider interaction for exercise promotion among people with MS was developed based on our previous qualitative research (30,31,35). This conceptual model is provided in Figure 1 and involves three hierarchically organized, interactive layers displayed as a pyramid. The three layers are health care provider training/support, patient-provider interaction, and participant exercise engagement, and these represent a larger process for shifting the distribution of physical activity in MS. The base layer of the conceptual model (health care provider training/support) involves professional training, service training, and provision of protocols for practitioners. This base layer essentially provides the educational resources for providers that then support the middle layer (patient-provider interaction); this middle layer represents the actual interaction between the person with MS and the provider during a patient-provider interaction. This middle layer outlines a process of consultation between patient and provider, exercise preparation, and referrals for appropriate exercise resources. The top layer (participant exercise engagement) involves the initiation and maintenance of exercise behavior by people with MS. This is the point wherein persons with MS use the resources gleaned from the patient-provider interaction for initiating an exercise program, optimizing/refining an already existing exercise program, or maintaining an exercise program over time. This latter section of the conceptual model is the point that yields a tipping, or shift, of the scale whereby we alter the distribution of physical inactivity (80%) and physical activity (20%) in the MS population. Importantly, these layers of the pyramid do not exist in a purely linear, unidirectional landscape, but rather in a bidirectional, interactive pattern whereby experiences within the middle layer (patient-provider interaction), for example, could inform a provider about the need for additional education and resources in the base layer (health care provider training/support). The top layer (participant exercise engagement) would inform discussions during the patient-provider interaction in the middle layer (patient-provider interaction).
Driver diagrams are a powerful visual representation of an improvement project. These diagrams are commonly used in continuous quality improvement initiatives and provide a tool that illustrates a project’s aim and the factors that influence the achievement of the aim, or drivers. Primary drivers are factors that contribute directly to the project aim, and secondary drivers are components or conditions necessary to achieving primary drivers (36). Interventions are strategies that target the secondary and primary drivers.
Driver diagrams organize the “theory behind improvement” for a specific aim. That is, driver diagrams graphically display the putative cause and effect relation within a system or the changes that likely will cause the desired effects (36). Driver diagrams can be read as a series of “if-then” statements: if you perform specific interventions that target secondary drivers, then the primary drivers will improve, and the improvement of the primary drivers will satisfy/achieve the aim (36). In the broadest sense, driver diagrams help articulate the processes that comprise the system to make them more reliable and reduce inappropriate or unintended variation (37). The use of driver diagrams recognizes that change is required to improve a system (38). Driver diagrams quickly identify the important aspects of the improvement project by explicitly defining the logic behind the change effort (39). Moreover, it provides a shared mental model for the team (40).
The aforementioned conceptual model provided the starting point for developing driver diagrams; one describing interventions for patient exercise engagement and the second for health care provider education/training. Our formative research (30,31,35) allowed population of the driver diagrams. These two driver diagrams collectively catalyze the interaction between patients and health care providers for increasing the percentage of persons with MS who engage in regular exercise behavior. To the best of our knowledge, this is the first use of two complementary driver diagrams to address priorities for both health care providers and patients with MS to reach a common aim — increase and maintain exercise engagement among people with MS.
Figure 2 describes the essential components that patients with MS reported as necessary to increase exercise engagement. The increase in exercise engagement is most likely to occur when patients are provided with materials needed to be physically active and have knowledge of how and why to engage and apply behavioral strategies to sustain exercise (30,35). These primary drivers underscore secondary conditions and interventions that are most likely to contribute to achievement of this aim. Whereas some interventions independently serve single secondary drivers, others exert influence over many drivers. Operationalization of this driver diagram is described in the following example. Knowledge acquisition is a factor contributing directly to the driver aim and occurs when patients with MS are aware of the benefits and outcomes of exercise, use exercise plans to achieve goals and manage symptoms, and receive information that is timely, repeated, and relevant. To obtain this knowledge, one example might require that the patient with MS receive one-on-one consultations with health care providers, receive referral to additional health care providers as needed for successful exercise promotion, and receive personalized exercise plans using a toolkit of exercise protocols and resources in a preferred format of either paper or electronic media.
Figure 3 describes the training components that health care providers identified as necessary for promotion of exercise among patients with MS. Health care providers reported that adequate intervention would require organizational support, education on appropriate exercise, and access to specific protocols illustrating strategies for exercise promotion for persons with MS (31). Strategies emerged to describe the processes of education and protocol access, but health care providers did not identify specific interventions ensuring organizational support. Health care providers simply reported that an environmental culture supporting exercise promotion was a necessary prerequisite. Operationalization of this driver diagram is described for the pathway training/education. Health care providers identify a need for education on specific exercise for persons with MS. This should be provided through ongoing professional training, service training for knowledge transfer across disciplines, training on how to refer to other health care providers, and training on the application of exercise protocols. Professional training is achieved by participation in formal conferences and continuing education involving exercise and MS. Training for transferring knowledge across disciplines and referral to other health care providers is achieved through sessions that serve to translate knowledge among providers of different disciplines within the MS health care community. To receive training on the application of developed exercise protocols, health care providers would attend meetings and lectures or view online continuing education courses on how to use the exercise promotion toolkit.
We further merged these two sets of driver diagrams together considering that our qualitative research with providers involved a reactive component whereby providers shared thoughts regarding the themes reported by patients with MS. The Table depicts a comparison of the needs and wants for exercise promotion between patients with MS and health care providers. Of note, there is considerable overlap when mapping the components of the driver diagrams between patients with MS and health care providers. This is consistent with our qualitative research that adopted a reactive component with health care providers based on the needs of patients, and further represents a novel integration and alignment of driver diagrams between two groups for a greater likelihood of behavior change.
This article developed a conceptual model and associated driver diagrams based on formative qualitative research, and those can inform the development of a toolkit for interventions delivered in health care settings that target exercise behavior change in MS. We believe that there are three major next steps in moving this research forward. The first involves vetting and refining the conceptual model and driver diagrams through qualitative research among people with MS and health care providers. This is necessary because the model and diagrams were developed through deep and extensive interaction among authors on this article, and may reflect our biases or misunderstanding of patient-provider interests in exercise promotion. We believe that the first next step should involve one-on-one interviews or focus group evaluations of the conceptual model and driver diagrams among representative samples of patients with MS and health care providers. The data collected will provide opportunities for confirmation, refinement, or revision of the conceptual model and driver diagrams we present in this article, and we recognize that there might be multiple cycles of such evaluation before reaching saturation and agreement on the model and approach.
The second step after refinement of the conceptual model and driver diagrams involves the development of a toolkit. This toolkit will essentially operationalize the driver diagrams for provision of exercise promotion among people with MS through the health care setting and associated professionals. We envision the toolkit being derived through a process again involving deep and extensive interaction among the authors, followed by vetting and refinement of the toolkit through one-on-one interviews or focus groups before moving forward with the third, evaluation, stage.
The third step will seemingly involve a sequential path of research starting with a feasibility trial and moving through pilot, efficacy, and effectiveness stages of research that evaluate change in exercise behavior and associated outcomes for people living with MS. The sequential stages of research depend on the successes/failures of earlier stages of research. We offer this third stage of the research as our ultimate end point in changing the lives of persons with MS through exercise promotion.
This article focuses on the hypothesis that the patient-provider interaction offers a fertile opportunity for promotion of exercise behavior among persons with MS. We offer a new conceptual model for the patient-provider interaction as an approach for exercise promotion that was developed based on formative, qualitative research with patients and providers. We present two sets of driver diagrams that can be aligned for understanding the synergy of interventions necessary for exercise promotion through the patient-provider interactions. We lastly outline the next steps in this research line and our long-term goal of changing the paradigm and approach of exercise promotion among persons with MS — this is essential considering the disparity between physical activity participation rates and evidence of substantial, life-changing benefits of exercise training in MS (41,42). We offer this article and its contents as a clarion call and opportunity for a new approach toward initiating and undertaking research driven by qualitative inquiry through concept mapping and driver diagrams for moving the patient-provider interaction forward for exercise promotion in MS.
This study was supported by a grant from the National Multiple Sclerosis Society (HC1411).
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