Joint Healthcare Professional and Patient Development of Communication Tools to Improve the Standard of MS Care

There has been significant success in the management of multiple sclerosis (MS) over the last 25 years [1]. Yet, despite these advances, patient outcomes in MS remain suboptimal. Reasons for this include variations in the standard of care as well as in patient satisfaction, engagement and adherence [2‐5].

Patient adherence is an important factor in MS management [4‐6], but can be compromised by poor satisfaction with therapy, perceived lack of efficacy, and the occurrence of side effects and tolerability issues [7, 8]. Good patient–healthcare professional (HCP) communication plays a key role in improving treatment satisfaction and treatment adherence [7, 9, 10]. HCPs have a responsibility to encourage good communication and to provide education, thereby enhancing adherence and addressing low expectations in the management of MS [11‐13].

Despite the known benefits of good patient–HCP communication, there are still significant communication barriers between both parties [3, 10]. The HCP and patient can have different perceptions of the patient’s care priorities [3, 9, 14]. Some patients report unmet needs regarding the amount and quality of information they receive from their HCPs during consultations [15]. HCPs also often misjudge patient discomfort regarding discussion of topics such as tremors and walking abilities, as well as sensitive topics that might be considered private, such as bladder control or sexual difficulties [9, 14]. Worryingly, nearly a fifth of patients report feeling uncomfortable about discussing their symptoms with their HCP, specifically neurologists [9]. Some patients felt that their HCP often adopted a “one-size-fits-all” approach, whereas they would prefer a more personalized discussion about their care [3]. For example, some patients with MS (PwMS) felt important personal aspects such as their changing practical needs due to disease progression, as well as their social care and employment issues, were not fully addressed by their HCP during consultations [3].

Shared decision-making has been described to be at the heart of patient-centered care [15] and is increasingly recognized as best practice [9, 16]. Although it is not suited to all patients, this model, which involves patients making informed decisions regarding their care in partnership with their HCP, has been shown to improve overall patient satisfaction and treatment adherence in MS [9, 15, 16]. Increased shared decision-making, including better patient education may improve disease management [15‐17].

Shared decision-making requires good communication between the patient and the HCP [9, 16]. HCPs should adopt a collaborative approach when working with patients, listening to their needs and informing them about the available treatment options [18]. However, in practice, many PwMS often report a lack of objective information and of difficulties making an informed choice [10]. Moreover, surveys of PwMS have found that many patients feel that they have little input into their treatment decisions [9, 12]. Short consultation times may be one factor contributing to poor patient–HCP communication [19]; many PwMS may feel that they do not get enough contact time with their neurologist [12, 19]. Some patients have also reported a perceived reluctance of HCPs to prescribe certain medications. HCPs, conversely, cited an inability to prescribe certain medications due to cost restrictions [3]. Disconnects in communication such as these need to be addressed if patient outcomes in MS are to be optimized.

Issues around patient–HCP communication are of particular importance to members of the “MS in the 21st Century” initiative. MS in the 21st Century is led by a Steering Group of 15 MS specialists and 12 patient advocates from 15 countries. Members of this unique initiative collaborate to identify and overcome gaps in patient–HCP communication, and have published eight key actions to help bridge communication gaps within MS treatment and improve the standard of patient-centered care [3]. The Steering Group has a strong commitment to equality of input and mutual respect among members and explicitly adopts a collaborative and inclusive stance in their work [20].

In considering ways to further improve patient–HCP communication, MS in the 21st Century has created two communication tools: “myMS Priorities” (see supplementary materials) and “myMS Commitments” (see supplementary materials). These tools and the process of their development are described below.

The development process of the communication tools introduced in this paper took place over a series of HCP–patient joint and separate workshops as part of the activities at the Steering Group’s regular planning meetings. These workshops first identified areas of disagreement in the perceptions of patient and HCP priorities through group discussions and survey data. Following the identification of these gaps in communication, the workshops developed potential solutions to help align patient–HCP perceptions and priorities coming up with the concept of the “myMS priorities” pre-consultation checklist and the “myMS commitments” disease management contract. As the last step, the content and format of these communication tools were presented by members of the Steering Group to audiences at international congresses for feedback and validation. In total, 5 workshops were held between March 2016 and July 2017 (Table 1).

Chronic conditions such as MS for which patients require lifelong treatment, and for which multiple treatment options of similar efficacy exist, may strongly benefit from a good patient–HCP relationship which facilitates shared decision-making [9, 15, 16]. A number of communication tools exist for chronic conditions, including MS, and have been associated with improved outcomes such as increased patient satisfaction and knowledge [21‐23]. In order to improve patient–HCP communication, MS in the 21st Century has developed two communication tools, the pre-consultation checklist-based, “myMS priorities” and the disease management agreement-based, “myMS commitments”.

The MS in the 21st Century Steering Group adopted a broad, iterative and collaborative approach in the development of these tools to help ensure that they would be as useful as possible to both HCPs and PwMS. These tools have been developed through shared patient–HCP expertise and are based on existing tools in other therapy areas, as well as a review of the existing literature and data from MS in the 21st Century Steering Group surveys. Both the literature review and survey data identified lack of HCP time in appointments [12] and misalignment of patient and HCP priorities in MS care as prominent gaps in patient–HCP communication [3, 9].

A series of meetings were held with clear objectives to outline the development and content finalization of the tools. The workshops and sessions were also set up to encourage as much HCP–patient interaction and collaboration as possible. Further, the inclusion of multinational participants aimed to make the tools applicable to the largest population possible. The fact that the tools are not linked to any specific MS treatment means that they can be used by all patients, regardless of their disease status. The tools are currently available in six languages (English, French, German, Spanish, Italian, Romanian) to increase accessibility. The final step in the development of these tools focused on gaining feedback from a wider audience through workshops, specifically at three international congresses.

Existing communication tools which the MS in the 21st Century Steering Group considered when creating “myMS priorities” and “myMS commitments” included patient–physician contracts, symptom diaries and checklists. The patient–HCP contract has been used in fields such as diabetes, hypertension, weight control and opioid addiction management [23‐26]. Contracts are agreements between the patient and HCP detailing the responsibilities of both parties toward the patient’s care. Studies have shown contracts to increase patient adherence in various patient populations [23, 24]. However, many different types of contracts exist and, while there is documented efficacy for some types of contract, other types have shown limited efficacy at best [27].

The patient–provider agreement is an example of a contract used in opioid addiction treatment for which studies have demonstrated only weak efficacy. These contracts often include a section describing the “consequences” (to the patient) of non-compliance with the agreement [28]. When reviewing such contracts, Bachman and Ho [29] identified that “if patients distrust their HCP, or feel distrusted by them, this may destabilize the therapeutic relationship and compromise care”. Colleen [30] also echoed this view, citing that opioid contracts lacked efficacy and diminished patients trust while also mentioning “patient’s trust improves adherence to treatment”.

The diabetes responsibility contract is another type of contract used in clinical practice. This type of agreement focuses on patient empowerment and may increase treatment adherence [31, 32]. In contrast to “consequences” for non-compliance of the patient to opioid agreements, many diabetes responsibility contracts provide positive reinforcement for patients when they fulfil their agreed commitments [32].

When creating the “myMS Commitments” tool, MS in the 21st Century Steering Group members were acutely aware that contracts, while proven to be beneficial, could do more harm than good if not created properly. This is due to the inherent power imbalance that exists in patient–HCP relationships [25]. In attempting to address this imbalance, the group based this contract on shared decision-making and promoting patient empowerment, factors known to increase patient satisfaction and treatment adherence [9, 33].

When creating the “myMS Priorities” tool, the MS in the 21st Century Steering Group wanted to combine selected benefits of symptom diaries and checklists into a new, single tool. Symptom diaries can improve treatment adherence, and both patients and HCPs have shown their willingness to use them. These diaries are traditionally used to help patients record their symptoms—and in some cases their effect on the patient—accurately. Without a diary, the patient would need to rely purely on their memory to recall symptoms at their next consultation with their HCP, which could be imprecise especially when there is a long period of time between consultations [34]. This is particularly relevant in MS where as many as 40–65% of patients may have some form of cognitive impairment [35]. The patient can complete “myMS Priorities” at home with help from their family or caregiver, which again may be particularly relevant for PwMS who have cognitive impairment.

Unlike existing symptom diaries in MS such as the MS symptom and impact diary [36], which are tools which record symptoms as a measure of the impact of MS on the patient, the “myMS Priorities” tool aims to help patients and HCPs start conversations about potentially embarrassing or invisible symptoms. Recording their sensitive symptoms in “myMS Priorities” allows patients to raise such symptoms with their HCP via the tool rather than relying on the HCP to ask the patient about them.

Checklists can help guide the patient and HCP through a consultation and ensure that all relevant topics and needed actions are covered [37, 38]. For example, a “What to ask your doctor” patient appointment guide developed by the NHS lists some suggested questions for consultations [39]. The MS in the 21st Century Steering Group saw the value in the patient listing their priorities, much as they would appear in checklists, to guide and cover topics quickly during a time-limited patient–HCP consultation. They also noted that, unlike checklists, patient diary responses were open-ended as opposed to a tick in the box, thereby allowing the patient to express their priorities in more detail and guide discussions. Consequently, the “myMS Priorities” tool allows patients to list priorities much in the style of a checklist but also describe their priorities in a similar way to describing symptoms in a symptom diary. The availability of both tools in paper or electronic versions offers patients and physicians the option to choose their preferred format based on factors such as convenience and ease of completion.

As with many communication tools, the limitations of “myMS Commitments” and “myMS Priorities” relate to commitment to their use by patients and HCPs. Possible limitations of the tools, including that gathered from feedback in international congresses, are that the HCP may not always have the time in clinical practice to optimally use the tools, and that patients may sometimes not have the will or ability to use them. Another limitation is that, while a diverse range of participants were used in the development of the tool, additional responses from patient caregivers and the families of PwMS could have been beneficial. Finally, patients who are more engaged with their MS care, such as those who research and probatively manage their condition, may be more likely and open to use these tools than patients who take a less active approach to their management. In addition, the data gathered to support the development of these tools were likely predominately from more highly engaged and educated PwMS. While this could lead to a bias in the survey responses, the group would hypothesize that the communication gap between HCPs and PwMS in a standard clinical setting is therefore in fact far greater than has been identified in the data collected here.

To the authors’ knowledge, no communication tools such as “myMS priorities” and “myMS commitments” currently exist for PwMS. While remote and digital tools for PwMS are available, they are not specifically aimed at the doctor–patient relationship in the form of a “contract” or to minimize disparities in treatment perceptions [40]. Nor do such tools have the same basis in research for their development as that for “myMS priorities” and “myMS commitments”.

Development of the pre-consultation checklist-based “myMS priorities” and disease management agreement-based “myMS commitments” tools has followed a thorough and systematic approach. The MS in the 21st Century Steering Group has identified two areas in MS care which are most in need of improvement, and has targeted them with two new communication tools which have evolved through incorporating and combining some features of existing communication tools.

Thus, “myMS priorities” and “myMS commitments” offer an opportunity to engage and empower patients in their MS care through a strengthened patient–HCP relationship. This could therefore meaningfully improve outcomes in MS. The next steps will focus on the validation of these tools through testing them in real-world environments. These data will be assessed for improvements in communication and shared decision-making and to see if this is reflected by improved patient and HCP reported outcomes.