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Resilience Among Caregivers of People With Multiple Sclerosis:  Exploring the Influence of Personality Traits, Coping, and Caregiver Burden

To access the article, post-test, and evaluation online, go to 

The target audience for this activity is physicians, physician assistants, nursing professionals, and other health-care providers involved in the management of patients with multiple sclerosis (MS).

1) Describe new approaches to optimize adherence through shared decision-making and patient engagement principles.

2) Integrate shared decision-making principles and models into clinical practice.

In support of improving patient care, this activity has been planned and implemented by the Consortium of Multiple Sclerosis Centers (CMSC) and Delaware Media Group. CMSC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.

The CMSC designates this journal-based activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

The CMSC designates this enduring material for 1.0 contact hours (none in the area of pharmacology).

Francois Bethoux, MD, Editor in Chief of the International Journal of MS Care (IJMSC), has served as Physician Planner for this activity. He has received royalties from Springer Publishing, served on a speakers' bureau for Biogen, and done contracted research for Adamas Pharmaceuticals.Francois Bethoux, MD

Laurie Scudder, DNP, NP, has served as reviewer for this activity. She has disclosed no relevant financial relationships.

Aliza Ben-Zacharia, DNP, ANP, MSCN, has received consulting fees from Biogen, Bayer, EMD Serono, Celgene, Novartis, Genentech, and Genzyme and research grants from Biogen and Novartis.

Meagan Adamson, DNP, FNP-BC, MSCN, has served on speakers' bureaus for Biogen, EMD Serono, Genentech, Novartis, Genzyme, Acorda, Teva, and Mallinckrodt.

Allison Boyd, MPAS, PA-C, MSCS, has received consulting fees from Genzyme, served on a speakers' bureau/advisory board for EMD Serono, and has been a speaker for Teva Neurosciences and Biogen.

Paula Hardeman, MPAS, PA-C, has disclosed no relevant financial relationships.

Jennifer Smrtka, MSN, ARNP-C, MSCN, has served on advisory boards for Biogen, EMD Serono, Genentech, Novartis, Sanofi Genzyme, and Teva Neuroscience and as a speaker for EMD Serono, Genentech, Mallinckrodt, Sanofi Genzyme, and Teva Neuroscience; she receives salary from Biogen.

Bryan Walker, MHS, PA-C, has received consulting fees from Biogen, EMD Serono, and Sanofi Genzyme and served on speakers' bureaus for Novartis and Biogen.

Tracy Walker, FNP-C, WOCN, MSCN, has received grant support from EMD Serono, Genzyme, and Teva and personal fees from Acorda, Genentech, Sanofi Genzyme, Mallinckrodt, and Teva, and served on speakers' bureaus for EMD Serono, Acorda, Teva, and Genzyme.

 has received consulting fees from and participated on speakers' bureaus for Biogen, Novartis, Genentech, Sanofi Genzyme, and EMD Serono. The other peer reviewer disclosed no relevant financial relationships. 

The staff at the IJMSC, CMSC, and Delaware Media Group who are in a position to influence content have disclosed no relevant financial relationships.

 Financial relationships for some authors may have changed in the interval between listing these disclosures and publication of the article.

Valid for Credit Through: December 1, 2019

In order to receive CME/CNE credit, participants must:

1) Review the continuing education information, including learning objectives and author disclosures.

3) Complete the post-test and evaluation, which are available at 

Statements of Credit are awarded upon successful completion of the post-test with a passing score of >70% and the evaluation.

There is no fee to participate in this activity.

This educational activity may contain discussion of published and/or investigational uses of agents that are not approved by the FDA. CMSC and Delaware Media Group do not recommend the use of any agent outside of the labeled indications. The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of CMSC or Delaware Media Group.

Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any medications, diagnostic procedures, or treatments discussed in this publication should not be used by clinicians or other health-care professionals without first evaluating their patients' conditions, considering possible contraindications or risks, reviewing any applicable manufacturer's product information, and comparing any therapeutic approach with the recommendations of other authorities.

Shared decision making (SDM) and adherence to treatment are an integral part of multiple sclerosis (MS) care. A collaborative process, SDM actively involves the patient, the health care provider, and an extended network in making treatment decisions. Adherence to disease-modifying drug therapies in patients with MS presents an ongoing challenge for patients and health care providers due to the chronic nature of this disease. This narrative review aims to explore the impact of SDM on adherence based on existing literature and to identify new approaches to optimizing adherence.

A search was conducted using medical subject heading terms, including 

decision-making, adherence, shared decision-making, compliance

Shared decision making between patients and clinicians promotes adherence to the treatment plan in MS. A proactive SDM approach is based on patient preferences, education, and engagement. Providing credible and accurate sources of information is essential for improving patient engagement. Home monitoring, computerized models, and active patient engagement are a few new approaches to improve adherence in patients with MS.

Shared decision-making interventions can have a positive effect on patient adherence to disease-modifying drug therapy in MS care. A range of new strategies is emerging that may help promote optimal disease management.

The authors thank Stacey Reeber and Lindsay Craik of Caudex, New York, NY, USA (supported by EMD Serono), for editorial assistance in drafting the manuscript, collating the comments of authors, and assembling figures.

Multiple sclerosis (MS) is a chronic, heterogeneous, inflammatory, neurodegenerative autoimmune disease that leads to physical, emotional, and cognitive disability. Although there is no cure for MS, there have been remarkable advances in the treatment of MS during the past 20 years. The goals of MS treatment are to reduce disease activity and delay disability. Several disease-modifying drugs (DMDs) are approved for the treatment of relapsing forms of MS, and recently a DMD has also been approved for primary progressive MS. The approved DMD landscape includes medications with various routes of administration (injectable, oral, and infusion), frequencies, mechanisms of action, and safety and tolerability profiles.

 These drug-related factors—combined with patient preference, lifestyle, disease course, disability, and motivation, as well as insurance status and cost of DMDs—can potentially affect treatment adherence. In general, rates of adherence in MS range from 49% to 88%, with variations reported across studies.

The efficacy of DMDs in MS depends on high levels of adherence. Data from managed care databases show that the incidence of relapses and relapse-associated hospitalizations increased in patients who were nonadherent or discontinued treatment with DMDs.

 In addition, data from an observational, multinational, postmarketing study of 2566 patients with relapsing-remitting MS demonstrated that adherent patients had a better Multiple Sclerosis International Quality of Life Questionnaire score compared with nonadherent patients.

 Studies have also shown that higher rates of adherence are linked with a lower risk of severe relapses. Longer gaps in DMD therapy (>90 days) may be associated with a higher risk of relapse.

 Because adherence to DMD therapy is critical for the treatments to be fully effective in MS, maximizing adherence is essential. Interdisciplinary expertise and services in a treatment plan may facilitate treatment adherence.

In a survey of patients with mild-to-moderate MS, patient-centered care and shared decision making (SDM) were significantly associated with better adherence rates.

 Shared decision making is a collaborative approach that actively involves the patient, the health care provider, and possibly an extended network in the decision-making process. Throughout the disease course of MS, there are many points where decisions are required, including if and when to initiate DMD therapy and which DMD therapy to initiate. These are issues in which the patient's values and preferences should contribute to the final decision.

 The purpose of this narrative review is to explore the impact of SDM on adherence to DMDs in MS and to present new and emerging approaches to optimize adherence through enhanced patient support and engagement.

A narrative literature search was conducted using the CINAHL, Embase, MEDLINE, and PsyclNFO databases, including publications from 1946 to present. We applied the search to the earliest limits of the databases to track the evolution of patient participation in their own care. Medical subject heading terms used were 

multiple sclerosis, multiple sclerosis – psychology, patient compliance, adherence, personal autonomy, risk factors, physician-patient relations, decision-making, shared decision-making, patient participation, patient participation – psychology, motivation, patient-centered care, quality of life

. Initial searches were performed using each term, and subsequent searches used different combinations of the terms. Inclusion criteria consisted of peer-reviewed articles written in English, with no limitations on publication date or country. Exclusion criteria included focus on adherence responses related to specific DMDs. Final results yielded 156 publications, 62 of which were determined to be relevant to the review.

 defines patient adherence to long-term therapy as “the extent to which a person's behavior—taking medication, following a diet, and/or executing lifestyle changes—corresponds with agreed recommendation from a healthcare provider.”

 This definition puts the responsibility of continuously taking treatment on the patient but does not consider the collaborative network involved in the treatment paradigm. Continued vigilance of patient adherence to DMD therapy requires an interdisciplinary approach that involves the patient, health care providers, and care-givers (eg, physician, family, MS center staff).

Shared decision making is a process in which patients, health care professionals, and caregivers work together and collaborate to select appropriate diagnostic tests, treatment, and disease management strategies based on clinical evidence and the values and preferences of patients.

 It represents a distinct departure from the conventional paternalistic model, which assumed a passive role for the patient in the treatment decision-making process.

 “shared decision making is seen as a mechanism to decrease the informational and power asymmetry between doctors and patients by increasing patients' information, sense of autonomy and/or control over treatment decisions that affect their well-being.”

An SDM model has been shown to be valuable in preference-sensitive conditions, in which several treatment options of similar efficacy but with differences in risks and benefits are available.

 Moreover, a study that assessed decision-making preferences in 283 patients with MS who were considering starting DMD treatment or reconsidering their current DMD treatment revealed that 90% of patients preferred to make an autonomous or shared decision, compared with 10% of patients who preferred to have the physician alone make the decision.

 These findings have also been borne out in a survey of nearly 7000 respondents conducted by the North American Research Committee on Multiple Sclerosis investigators in which most participants taking a DMD preferred patient-centered decision making or SDM.

 This further illustrates that an overall collaborative network may be an important factor for treatment success and optimal health and wellness (

It is worth noting that challenges associated with defining these concepts have been identified in the literature. Trenaman et al.

 identified variation in how adherence has been defined and measured in clinical trials, distinguishing trials measuring adherence to medication choice from those measuring adherence to treatment. The authors concluded that further study is warranted to help standardize how adherence is conceptualized, measured, and reported.

 recognized that the concept of SDM has not been clearly and consistently defined and that challenges in measuring the effects of SDM result from the wide range of interpretations of the type and degree of characteristics required for SDM models.

In patients with chronic diseases, including MS, health care providers are faced with the challenge of accurately assessing the degree of adherence. There is minimal guidance for health care providers in selecting the most appropriate adherence measures.

 In clinical trials of DMDs in patients with relapsing MS, adherence is determined by the amount of drug returned on each visit and may not reflect the actual amount of DMD received.

 In a real-world setting, estimating adherence rates in patients with MS is difficult due to the lack of standardized measures. Scanning a bar code before dosing of injectable therapy, checking whether a pill was dispensed, or even checking whether prescriptions were filled can serve as potential measures of adherence. Medication possession ratio, defined as the number of days' supply of dispensed medication divided by either the refill interval (where the last refill is the end point) or a preset specific fixed refill period, is a common way to measure adherence; however, this ratio does not account for whether the treatment is being taken as prescribed.

 Understanding the behavioral reasons for nonadherence may help to select an appropriate DMD for each patient. Behavioral measures that focus on the underlying reasons for being adherent (eg, the Morisky Medication Adherence Scale,

 the Multiple Sclerosis Treatment Adherence Questionnaire

), combined with patient preferences and lifestyles, are useful self-reporting tools that assess the potential for DMD adherence. Although self-report studies are important for patient behavioral assessment, these studies are open to methodological limitations, such as overestimating or underestimating adherence.

 Because there is no ideal medication adherence measure, health care providers should consider using more than one measure to assess adherence.

Although SDM is increasingly recognized as the ideal model of communication between patients and health care practitioners, especially in chronic conditions with partially effective treatments such as MS,

 its empirical impact has been difficult to evaluate in clinical trials. Recent systematic reviews of clinical trials evaluating SDM and information provision have found marked heterogeneity in the number and extent of interventions used and in the quality of evidence. This has made comparisons and examination of the effects of collaborative provider-patient interventions difficult.

In two randomized controlled trials, nurse-led information provision and counseling were shown to have the potential to increase informed choices.

 However, a systematic review of randomized controlled trials and quasi-randomized trials evaluating the effectiveness of information-sharing approaches between providers and patients with MS found mixed results. Interventions studied included decision aids, educational programs, self-care interventions, and personal interviews with physicians. The authors concluded that providing information to people with MS seems to increase disease-related knowledge, although the effect on decision making and quality of life was less clear. However, the authors noted that interpretation of study results remains challenging due to the diversity of the interventions and outcome measures investigated.

Although SDM is conceptualized as a process involving the patient and the health care provider, only a few scales are available that assess the SDM process from the point of view of both participants, including the dyadic OPTION (“observing patient involvement”) scale,

 the Multifocal Approach to Sharing in Shared Decision Making measure,

 and the 9-item Shared Decision Making Questionnaire (SDM-Q-9), published in 2010.

 The SDM-Q-9, in which patients evaluate the quality of nine aspects of the decision-making process,

 is the most frequently used of the three scales.

 However, a systematic review of studies evaluating the SDM-Q-9 revealed poor quality of evidence, suggesting that its value as an assessment tool may be limited.

A better understanding of barriers to adherence and SDM, whether related to the patient, provider, or health care environment, could improve clinical outcomes.

 Factors that have been shown to be predictors of adherence include ease of injection, satisfaction with treatment, treatment support, patient–provider relationships, and complete insurance coverage (

 A survey performed in the United States in 2012, which evaluated data from the Pacific Northwest Registry of DMD-treated patients with relapsing forms of MS, found that the most common reasons for nonadherence were forgetfulness, injection-site pain, and other adverse effects (

 Whereas clinicians generally attribute patient nonadherence to adverse effects (82%), patients have a variety of reasons for nonadherence to a particular DMD, including adverse effects from treatment (42%), treatment fatigue (13%), practical issues relating to self-injection (9%), and perceived lack of efficacy (9%).

 Patient behavior-specific factors associated with nonadherence include forgetfulness, perceived lack of DMD effectiveness, lack of realistic expectations (eg, DMD not addressing symptoms but preventing disability accumulation), and adverse effects and tolerability issues (Figure 2B).

Patient clinical characteristics that may influence adherence and SDM include depression or other mood disorders, cognitive dysfunction and decline, fatigue, physical disability or limitations, social limitations, and absence of social support/network (Figure 2B).

 Fatigue is one of the most common symptoms of MS, occurring in approximately 80% of patients.

 More than half of all patients with MS will develop cognitive problems, including deficits in information processing, memory, attention and concentration, and executive functions (eg, planning and organizing).

 Considering that most MS therapies require continuous administration, fatigue, impaired cognitive function, or depression or other mood disorders may reduce the likelihood of accurate administration, thus affecting treatment adherence.

Patient social and cultural factors must also be taken into account. In today's multicultural environment, language differences may present a barrier to both SDM and adherence, and cultural-specific attitudes and values may also influence patients' expectations as to how their health should best be managed. By learning about their patients' social and cultural beliefs, staying nonjudgmental when differences arise, and being alert for signs of discontent or lack of engagement, physicians can help mitigate these differences.

Misinformation and lack of education may further affect patient ability and willingness to engage in their own care. Patients with MS frequently report difficulties in finding useful information on the internet.

 This access to information that may be inappropriate, inaccurate, or overwhelming can negatively affect patient motivation and self-reliance.

 Lower educational levels may prevent understanding of health information, compromising effective participation in decision making.

Barriers to adherence and SDM may also be related to the health care provider. A more paternalistic approach from a clinician does not take patient perspective into account and alienates the patient from the decision-making process. This may result in the patient being prescribed a DMD to which they have difficulty adhering. The medical professional's manner of interaction can affect the patient's level of participation in their care. Patients whose health care providers respond positively and provide feedback about their needs, views, and concerns are more likely to participate in SDM than patients who feel that their physician is dismissive of their concerns.

 Time constraints limiting the length of clinical consultations are also recognized as a major obstacle to effective communication.

 In an international study of neurologists and nurses caring for patients with MS, two-thirds of participants recognized engaging patients in SDM as an essential skill. However, the same participants self-reported significant deficits in their abilities to engage patients and/or caregivers in SDM due to insufficiencies in knowledge, skill, and confidence. These results suggest that continuing medical education and performance improvement initiatives should be implemented and would be welcomed by practitioners caring for patients with MS.

 However, the additional time and resources required for training may be an impediment to implementation of such programs.

Nonclinical factors, including costs and health care barriers, can also affect adherence and SDM. The costs of all DMDs in MS are high, and the level of coverage varies for each of these treatments.

 The health care system can create barriers to treatment adherence by limiting access to health care, using a restricted formulary, or switching to a different formulary, in addition to high costs or copayments.

 For newly diagnosed patients, insurance companies may require that patients take DMDs in a certain sequence rather than allowing them to start with the agreed-on regimen. A change in a formulary, which may or may not be based on effectiveness of a particular therapy, can require a patient to discontinue a preferred treatment. Addressing other potential contributors to nonadherence, such as drug cost or availability, should involve the collaborative network (eg, social workers, insurance companies, MS patient advocacy societies, and DMD manufacturers) for the patient and health care provider to choose an optimal treatment.

The success of the SDM is based on a positive patient–provider relationship,

 and the development of this relationship begins at the initial visit and diagnosis. Data from the MS Choices Survey across seven countries demonstrated that there are several differences between patient and physician responses to questions exploring reasons for poor treatment adherence.

 These findings illustrate the importance of establishing a strong patient–provider relationship and more active communication to combat nonadherence. It is imperative for both the patient and the provider to clearly understand their role, responsibilities, and goals. In particular, the health care provider should adequately weigh the benefits and risks of each DMD based on patient treatment preference (eg, route of administration), tolerance, work environment, and other lifestyle factors. Ultimately, these efforts will lead to choosing an optimal DMD for a patient.

When health care providers and patients disagree on treatment choice, both are faced with the challenge of evaluating the decision from the other's perspective.

 Data from a survey to analyze patient preferences for risk-benefit trade-offs for hypothetical DMDs can help providers understand patient perspectives.

 Although the provider and patient have the same goals for a positive outcome, it is important to reevaluate these goals. There needs to be a conversation between the patient and provider to explain the rationale for a treatment choice and the associated risks and benefits. A patient may be willing to take a significant risk, but the health care provider should advocate for the patient's best interests based on the provider's knowledge and experience with various MS therapies.

The health care provider is critical in presenting and mobilizing a treatment plan. The provider's ideas and plans are not effective unless matched appropriately with patient expectations and goals. The accessibility of information on the internet and social media creates a wealth of information easily obtained by patients. Patients are often misinformed about MS from these resources; therefore, the role of the health care provider is to educate patients with reliable and valid data, correcting any misconceptions about the disease or treatment options. In addition, it is important for providers to educate patients on the disease process, rationale for DMD choice, and expectations for treatment. A study of newly diagnosed patients with MS demonstrated that patients preferred knowing the benefits and risks associated with first-line treatment; in particular, patients with higher disability preferred to take a more active role in the decision-making process.

 Clearly discussing the impact of treatment on quality of life and potential long-term outcomes while having open lines of communication with the patient will improve the relationship and foster treatment adherence.

 When patients understand the reasoning for treatment, they are more likely to remain adherent. In a small sample of patients surveyed about their perceptions of MS and treatment, it was found that a greater number of patients were nonadherent to treatment if they did not feel well informed about the disease or treatment by their neurologist.

 In addition, having a greater degree of information about the disease

 and greater autonomy in treatment options have been shown to be associated with a greater likelihood of patient adherence.

 Patients are also seeking more active involvement and more regular interaction with their clinicians,

 which indicates a greater need for more communication with patients with MS. By having more interaction with health care providers, the relationship remains more dynamic and may lead to improved adherence rates. The options for treatment may change throughout the course of an individual's disease process, and it is important to be able to develop that dynamic treatment plan in an effective manner. When there is an SDM process, patients are well educated and offered the information to guide them in the direction of optimal disease management (

Role of SDM in DMD Selection and Adherence 

A thorough understanding of available DMDs for the treatment of MS is imperative for both the patient and the clinician. Behavioral, clinical, social, and financial factors should be considered when selecting a DMD. Furthermore, proper understanding of these factors may help promote adherence in patients with MS. Although each of the approved treatments reduces clinical exacerbations, delays disability, and improves radiologic outcomes, DMD efficacy and response to treatment vary among patients with MS.

 The differences in responses among patients may be due to individual patient characteristics, pathophysiology and patterns of the disease, and mechanism of action of a given DMD. When initiating or switching therapies, differences in drug mechanisms of action, as well as the risks and benefits of each, should be discussed with patients. Before switching to a different DMD due to breakthrough disease and suboptimal response, discussion with patients and their families should focus on patient preferences (eg, route and frequency of administration). As new, more potent, immunologically active substances become available for MS treatment, individualized risk aversion and tolerance of risk should be considered by the prescribing health care provider and the patient. Currently, there are no biomarkers available to determine which therapy will be most beneficial clinically; therefore, a principle of partnership that considers both clinical expertise and patient preference can be valuable in addressing the challenge of choosing the right DMD.

Adverse effects or safety concerns are important to consider in the process of DMD choice and adherence. Adverse effects associated with injectable DMDs may include injection-site reactions and flulike symptoms. As a result, adherence to injectable therapy is often a challenge for patients,

 with more than 25% discontinuing therapy within 1 to 2 years.

 As DMD treatment options have expanded to include oral therapies, studies are investigating whether adverse effects of oral medications (eg, gastrointestinal issues) are associated with nonadherence. Data from a real-world study demonstrated that discontinuation rates for the two most common oral medications were driven by tolerability issues.

 Studies are also investigating whether an oral route of administration is associated with improved treatment adherence. Data from a large US administrative claims data set demonstrated that DMD type, stratified by route of administration (self-injectable vs. oral DMDs), was not a significant predictor of DMD adherence.

 Considering that intravenous administration of DMD occurs during a clinic visit, this may be the most reliable route of administration regarding adherence; however, the benefits and risks should be discussed with patients.

New Approaches to Optimize Adherence Via SDM and Patient Engagement  

New strategies based on the principles of SDM are required to promote optimal patient involvement and treatment adherence. Given the chronic nature of MS, the importance of ongoing partnerships between patients, members of health care teams, and caregivers cannot be overstated. Home monitoring, computerized models, and active patient engagement are a few new approaches being applied to improve self-management and adherence in patients with MS.

Telephone-based home monitoring may represent an efficient method for assessment of medication adherence and early detection of individuals who may be at risk for nonadherence. Preliminary evidence from a longitudinal study of veterans with MS who completed monthly telephone-based interviews for 6 months demonstrated that adherence expectations predicted actual adherence after adjusting for demographic, illness-related, and psychosocial factors.

 One-on-one pharmacist counseling/consultations from a patient's home can also be beneficial for patients and lead to improved adherence. For example, data from an analysis of patients new to DMD therapy who did and did not receive a one-on-one pharmacist counseling video conferencing session from a specialty pharmacy revealed that patients had significantly higher odds of being adherent if they had a video consultation.

Computerization, electronic aids, and Web-based tools are other potential methods to assist with assessing and preserving adherence to DMDs. Computerization and the use of databases provide an opportunity to follow patients through the hospital pharmacy, where they receive the prescribed dose, and for clinicians to calculate key drug use parameters (eg, received daily dose, prescribed daily dose).

 Electronic autoinjectors allow for individual injection settings and recording of dose history, which can help patients who have cognitive deficits. Injection reminders such as telephone alerts or smartphone applications (apps) can help patients to remember to take their medications.

 Smartphone apps may also be useful to track symptoms and medications using a treatment diary, which can be shared with the health care team.

Interactive, Web-based, patient-focused programs may enhance self-management and allow for an integrated interdisciplinary approach. Examples include MSmonitor, a program for self-monitoring, self-management, and integrated, multidisciplinary care in MS,

 and MSInvigor8, a cognitive behavioral therapy self-management program for MS fatigue.

 MSmonitor comprises six validated questionnaires, two inventories (medication and adherence), two diaries, and two functionalities (e-consult and personal e-logbook).

 A pilot study using this program suggested that repeated use of the short Modified Fatigue Impact Scale—5-item version and the 8-item Leeds Multiple Sclerosis Quality of Life questionnaire was associated with an increase in health-related quality of life.

 MSInvigor8 consists of eight tailored, interactive sessions,

 and a pilot randomized trial demonstrated that addition of e-mail—based support (MSInvigor8-Plus) significantly reduced fatigue severity.

 In addition, patient-reported outcomes are starting to be recognized as an integral part of disease management, which can be collected using digital-based technology (eg, the Multiple Sclerosis Documentation System 3D) or identified from online community sites (eg, PatientsLikeMe.com).

Patient engagement is essential for improving the quality, safety, and costs of health care interventions.

 In 2011, the Multiple Sclerosis in the 21st Century initiative was established to define and update MS treatment and standards of care, develop a minimum international standard of care, and encourage the MS community to challenge the existing treatment paradigm. This group, composed of international experts in MS management and patient group representatives, recognized the importance of increasing patient engagement; they have identified five principles of active patient engagement (

 Given the complexity of MS pathology, the heterogeneity of the disease, and the variety of management options available, providing credible and accurate sources of information is essential for improving patient health literacy and engagement.

 The responsibility for engagement is shared by the patient, the health care team, and other support systems (eg, family). The ability to build on this sense of responsibility may empower a patient's engagement. The US Center for Advancing Disease has developed a national Engagement Behavior Framework to help patients understand how they can become involved in their own care. The framework includes a description of ten behaviors, such as how to communicate with health care professionals, make good treatment decisions, participate in treatment, promote health, and seek health knowledge. In addition, the framework highlights the challenges patients may face in managing their care.

 Overall, engaging the patient is essential to achieve an SDM portfolio to maximize patient care and adherence. Additional studies are needed to demonstrate the role of these new approaches, such as home monitoring, computerized models, and patients' active engagement in optimizing DMD adherence.

There was consensus among the authors that a review of the existing literature was needed as a foundation on which to offer models of SDM in MS. This review of the evidence supporting SDM shows that a positive effect on adherence has primarily been reported by studies with moderate levels of evidence, such as observational studies, surveys, and questionnaires. Randomized controlled trials have been conducted to assess the impact of SDM on patient behavior, but there is a marked lack of standardization in definitions and measurements in these trials, making it difficult to draw conclusions with confidence. Although we acknowledge that the evidence base supporting the benefits of SDM on patient outcomes is not yet robust, we nonetheless endorse SDM as a promising approach to increase adherence. Systematic reviews of the literature evaluating SDM interventions in other therapy areas, including type 2 diabetes mellitus, asthma, and adherence to cancer screening, underscore the importance of provider—patient communication in improving adherence.

 Further study is warranted to standardize SDM models and produce evidence to conclusively determine the impact of SDM on adherence in MS.

Moreover, it is important to have multidimensional patient information and educational programs in place that take into account different aspects of the disease, therapeutic options (eg, immunotherapy, symptomatic therapy), barriers to adherence, natural evolution of the disease, encouragement of self-management, and emotional support systems.

 Importantly, educational programs should include a lesson about SDM.

 Studies have shown that a collaborative effort between patients and the health care team is essential for establishing clear communication and enhancing a patient's confidence with the health care process.

 Given the wide-ranging effects of MS, patient quality of life can be significantly affected by psychological, physical, social, and financial factors throughout the course of the disease. The challenge for health care providers is to implement a management plan that addresses the full range of symptoms affecting each patient's quality of life.

In conclusion, SDM and adherence to DMDs are key principles in MS care. Use of DMDs reduces the frequency of relapses and radiologic disease activity and slows the progression of disability. However, it is critical that the patient with MS remains adherent to treatment over the course of their disease. Although multiple factors contribute to the success or lack of success with a particular treatment, an SDM process should be undertaken by the patient, the health care provider, and the extended collaborative network to maintain patient adherence and maximize beneficial outcomes. We conclude that the results of this narrative review support the concept that SDM interventions can have a positive effect on patient adherence to DMD therapy in MS care. Accordingly, we presented new and emerging collaborative strategies that may help promote optimal disease management.

Impact of Shared Decision Making on Disease-Modifying Drug Adherence in Multiple Sclerosis

There are approximately 1 million adults in the United States with multiple sclerosis (MS). Persons with MS are interested in diet as a second-line therapy for improving MS symptoms and disease progression. Examination of desired resources regarding diet among persons with MS is necessary for supporting behavior change.

Twenty-five adults with MS completed 1-on-1, online semistructured interviews. An inductive, 6-phase, semantic thematic analysis was applied to identify themes associated with participant preferences for dietary behavior change.

The research team crafted 4 key themes from the data that encompassed participants’ desired resources for dietary behavior change. Theme 1, MS-specific evidence, involved the need for clear information about the impact of diet regimens or specific foods on MS. Theme 2, dietary guidelines, was related to guidelines provided by a reliable source such as a registered dietitian. Theme 3, behavioral supports, underscored the need for support for behavior change, including accountability, self-monitoring, motivation, habituation, and incremental changes. Theme 4, diet resources, highlighted tangible resources for supporting dietary change, including recipes, food lists, meal services, or games.

This study provides a foundation for guiding dietary interventions for persons with MS that incorporates their needs and preferences and could improve their overall health. Such dietary change can be facilitated by theory-based behavioral interventions that incorporate behavior change techniques such as self-monitoring and goal setting for supporting behavior change.

The authors thank the participants in this study for their time and the insights that made this research possible.

 The authors declare no conflicts of interest.

 This work was supported, in part, by the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health (grant F32HD101214) and the Healthy Aging through LifesTyle (HALT) Research Center, which was supported by the National Multiple Sclerosis Society (grant 000518032).

 The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

There are an estimated 1 million adults in the United States and 2.8 million adults globally with multiple sclerosis (MS),

 a disease of the central nervous system wherein immune-mediated inflammation causes demyelination and transection of axons and results in hallmark debilitating outcomes such as mobility impairment, cognitive dysfunction, and fatigue.

 The pro-inflammatory nature of MS has prompted interest in lifestyle approaches that may be anti-inflammatory as second-line therapies for managing disease manifestations, in conjunction with first-line pharmaceutical interventions such as disease-modifying therapies.

 A recent study indicated that persons with MS are interested in wellness approaches, particularly regarding diet, to manage the disease, and diet is the most frequently searched wellness strategy on the internet by persons with MS.

The National Multiple Sclerosis Society (NMSS) recently convened a Wellness Research Working Group that reviewed the literature on diet in MS and provided guidance for further research.

 The NMSS Wellness Research Working Group concluded that the study of specific dietary regimens and how they affect MS symptoms and disease progression is in its infancy.

 Research regarding diet and MS has largely focused on inflammation, given the pathogenesis of MS, and examined the associations among saturated fatty acids, leptin, cytokines, and, more recently, dysbiosis of gut microbiota with MS manifestations.

 This evidence has generated increased research regarding the effects of specific diets, vitamins/minerals, essential fatty acids, and antioxidant supplements in MS.

 One ongoing quandary remains: there is currently no class I evidence from randomized controlled trials of the benefits of any specific diet in MS. The provision of a behavioral knowledge base that focuses on the dietary information needs and preferences of persons with MS is required before implementation of any dietary intervention and for the purposes of enhanced health and wellness and long-term adherence.

The tradition of qualitative research is an important approach to understand diet in MS. Qualitative methods gather first-hand, lived experiences and opinions such that interventions can be designed that more closely meet the needs, wants, and desires of persons with MS.

 A recent study explored perceptions about dietary information among persons newly diagnosed as having MS

 and added further support to the necessity to generate a focused line of research on diet. Study participants requested further research given the perceived incompatibility or lack of general dietary advice considering disease seriousness (their first theme) that can underpin participant-reported engagement in self-experimentation with dietary approaches for managing MS (their third theme).

 This is but 1 example demonstrating that a focus on diet is a key priority for persons with MS

 and that qualitative inquiry is a meaningful approach to capture the needs, wants, desires, opinions, fears, and experiences regarding diet among persons with MS. Previous qualitative research further highlights a current lack of resources for supporting changes in healthy eating behaviors.

 An in-depth understanding regarding desired resources for supporting future dietary change from a behavioral perspective would complement adjacent research examining biological changes and specific dietary regimens for improving outcomes among persons with MS.

One primary research question put forth by the NMSS working group was, “What are the optimal ways to promote the adoption and maintenance of specific dietary regimens?”

 Qualitative inquiry is an ideal approach for providing a foundation that addresses this question because it allows a research team to identify barriers to and facilitators of adoption and maintenance of behavior change from the viewpoint of the target population. To that end, the present study adopted qualitative inquiry and examined the desired resources for supporting dietary changes in persons with MS. The overarching goal of this research involved the provision of guidelines for behavioral interventions promoting healthy eating based on the preferences of persons with MS.

This study was approved by the University of Alabama at Birmingham institutional review board. An inductive, exploratory qualitative design was used to explore desired dietary resources of persons with MS.

 This study was underpinned by an interpretative paradigm framed by ontological relativism and epistemological subjectivism. As such, we perceived reality as multiple and subjective, depending on each individual participant, and each participant’s “truth” or reality as unique to them but equally valid.

 We further perceived that the creation of knowledge was a cooperative effort between ourselves and the participants, and this knowledge creation was influenced by the experiential, historical, political, and cultural background of each individual’s lived experience. All members of the research team have previous experience designing and conducting qualitative studies that examine health behaviors in diverse samples of persons with disabilities, including MS. The first author (S.L.S.) previously conducted a qualitative study of exercise preferences among wheelchair users with MS that led to the development of a behavioral intervention. The second author (E.V.R.) is a leading expert in qualitative methods and disability studies who has led more than a dozen individual qualitative studies regarding physical activity and wellness in samples with MS, spinal cord injury, and other disabilities. The third author (R.W.M.) is a leading expert on wellness in persons with MS who has implemented qualitative methods in research for the past decade.

Participants were recruited using purposive sampling methods involving convenience and maximum variation strategies. Regarding convenience strategies, we contacted individuals who expressly desired information about future research conducted by the team. To honor this request, we used a maximum variation technique by designing a call-to-research flyer that was purposefully distributed among individuals with a wide range of clinical and demographic characteristics, such as MS type and duration, socioeconomic status, location, and race. The rationale for this approach was to capture as wide a range of opinions and desires for dietary resources as possible. The email invitation was distributed among 40 potential participants, and 26 expressed interest. The inclusion criteria were (1) age 18 years or older, (2) confirmed diagnosis of MS, and (3) willingness to take part in a recorded interview.

Participants were emailed instructions for the online interview platform and an information sheet before the interview session that explicitly stated what was being asked. All interviews began with a discussion regarding the information sheet, and verbal informed consent was received before interviews began. Participants were further informed that they could terminate the interviews at any time and sit in a location of choice, thereby aligning with best practices for facilitating comfort and convenience.

Data were collected through online, semistructured, 1-on-1 interviews via video teleconferencing software (Zoom; Zoom Video Communications Inc) licensed by the University of Alabama at Birmingham. This software was chosen given the higher levels of security afforded with university-sponsored accounts that require the use of waiting rooms and passwords for entering meeting rooms and an individual option for use of a camera. In addition, the software allows users to download recordings directly to a password-protected computer as opposed to the Kaltura Cloud. The research team examined previous literature regarding dietary behaviors in persons with MS and then created and refined an interview guide. Online interviews were chosen for numerous reasons. First, this allowed researchers to interview individuals from a wide geographic range, capturing not only those local to the research laboratory but also individuals from across the United States. This allows for a cultural snapshot of desired resources within this country. Second, online interviews are a preferred method of data collection among persons with MS because they can reduce the fatigue, pain, and stress associated with travel.

 Third, this method ensured the safety of both the researcher and the participant not only regarding travel but also because these interviews were conducted in April and May 2020, during COVID-19 restrictions.

The semistructured approach was taken to allow participants freedom to discuss experiences and opinions important to them while allowing interviewers/researchers to ensure that areas of interest that spoke to the research questions (ie, desired resources for nutrition) were meaningfully captured.

 The interview began with general introductions (ie, grand tour) wherein researchers inquired about demographic and clinical characteristics. Participants were then asked about personal informational needs for dietary behavior change, for example, “What information do you want to know about nutrition and MS?” We further inquired about resources that participants would need to support changes in diet, for example, “What would help you incorporate nutrition into your management plan for MS?” and “How would you change your diet? What tools or resources?” The other questions asked are provided in 

, which is published in the online version of this article at ijmsc.org. The semistructured design allowed flexibility for participants when providing specific information regarding previous experiences with various diet regimens and future diet preferences and providing rich, in-depth data.

The first and second authors conducted the interviews, and they engaged in critical reflection after each interview was conducted. All the interviews were deidentified before transcription. Audio data were transcribed by a third-party transcription company (Rev.com).

Svetlana P. Eckert, MD

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