Risks of Open Communication About Disease Progression
MS disease progression is a controversial topic within the healthcare community. There are ongoing debates around the accuracy of existing disease classifications, and prognosis varies substantially between individual patients, with accurate long-term prognostic forecasting often impossible [15–17]. HCPs can therefore be reluctant to communicate prognostic uncertainty to patients for a variety of reasons, in particular the fear that it would undermine patient trust in the relationship [18, 19]. Full understanding of the complexity of disease progression is reliant on long-term specialist training. Particularly in MS, given the potential impact of cognitive impairment, there is a risk that too much information may overwhelm patients and raise the risk of misunderstandings that could negatively impact both treatment adherence and patient well-being, for example by increasing the likelihood of depression .
Added to this, many patients will comment that the word ‘progression’ produces an almost visceral reaction. A sense of the inevitability of neurodegeneration can leave patients feeling hopeless and can increase the risk of treatment non-adherence [21, 22]. A more patient-oriented care approach, which looks at symptom management, quality of life, and things that patients can control, can be more motivating than focusing on a negative future [5, 23]. Further, many PwMS may not be emotionally ready to hear about MS disease progression—in which case an insensitive or premature discussion of the topic may damage the relationship with their healthcare team and adversely affect future care utilisation [5, 20].
Arguably the greatest challenge for both HCPs and patients in discussing disease progression is that they inherently have different perspectives and priorities. MS disease progression means different things to patients and HCPs. HCPs generally define progression clinically in terms of measurable change either radiologically or through common metrics of physical impairment. By contrast, patients are more likely to see the worsening of invisible symptoms, for example extreme fatigue or a bad mood episode, as signifying progression. Since these changes are not picked up via magnetic resonance imaging (MRI) or the expanded disability status scale (EDSS), the HCP may not consider or discuss them as signs of progression , yet failure to recognise changes in these invisible symptoms causes significant problems with regard to both mutual understanding of progression and patient satisfaction [24, 25]. In addition, the use of clinical terminology, coupled with the complexity and variability of MS progression, can make conversations around the topic difficult for patients to fully understand .
Benefits of Open Communication About Disease Progression
Despite the risks, there are also considerable benefits to open communication regarding MS disease progression. Slowing disease progression is the primary aim of HCPs treating MS ; however, real-world studies show treatment discontinuation and non-adherence rates of around 30% [28–31]. Indeed, the actual rates of non-adherence may be even higher than reported . There is evidence to suggest that a common misunderstanding amongst PwMS is that progression is the same as treatment failure, and this perceived lack of treatment efficacy is one of the driving factors behind cessation of adherence [33, 34]. This concern could be allayed through open communication, as there is also evidence that treatment adherence rates are positively linked to patients’ levels of education about—and understanding of—MS .
Disease progression discussions can also help patients to understand the need for certain clinical tests which they might otherwise feel are invasive and unnecessary, and can contribute to the development of a trusting relationship in which patients do not feel that their HCP is withholding information from them [20, 26, 28]. These discussions are important for creating realistic treatment expectations, leading to improved patient satisfaction and engagement, and enabling shared decision-making [5, 28, 35–39]. In addition, they can help to motivate patients to take responsibility for managing their disease , as they begin to better understand the importance of actions like regular physiotherapy appointments, eating healthy, exercising frequently, and staying mentally active. Allowing for practical planning for the future can also help to mitigate the impact of disease progression at the point of disease worsening, by temporally separating the decision-making process from the situational stress at the time of additional disease burden. Examples of this include patients installing a walk-in shower in their house or adapting their car to use hand controls before these adaptations are needed, allowing continued independence, without interruption, at the point where these become necessary.
Furthermore, PwMS learn about the disease from a whole variety of sources, including other patients, the internet, news, and social media . Discussions with HCPs regarding disease progression can thus be valuable opportunities to counter any misinformation and allay anxieties resulting from online research . Among patients with chronic illness, PwMS are some of the highest-frequency users of the internet . They are often less optimistic about their prognosis than HCPs; for example, believing that their MS means they will inevitably become wheelchair-bound , fuelled by negative depictions of the disease via television, films, and print media. HCPs can therefore play a helpful role in countering such depictions or misinformation and provide a trusted sounding board for patients , as despite their comparatively high reliance on online information, many patients still place greater trust in their physician . However, while studies have shown that the majority of MS patients do in fact want to talk about progression, many find that this need goes unmet [14, 45].
Optimising Conversations About Disease Progression
Since negative communication can impact both patient well-being and engagement, the importance of effective and transparent communication cannot be overstated. Achieving it requires a move from present-focused discussions of clinical findings to addressing patients’ priorities regarding their present and future well-being, quality of life, and the day-to-day challenges of living with MS. Clinical information needs to be translated into easily understandable language, couched in patient-friendly terminology, and adjustments made for individual patients . It may be helpful for HCPs to use more neutral terms; for example, ‘progression’ can have negative connotations that may be avoided by the use of alternatives such as ‘evolution’ or ‘spectrum’, or referring to varying levels of ability rather than increased disability. Discussions also need to be personalised with regard to timing, patient circumstances, and cultural considerations in order to provide tailored, personalised care [20, 24, 46].
Given the multidisciplinary nature of MS care, it is also important to consider who is best placed to provide information on the topic of disease progression to patients. While neurologists are typically the primary source of patient information, MS nurses often have more regular interaction with patients, which may make them better suited to having conversations on associated sensitive topics such as sexual dysfunction or urinary disturbances, and answering questions regarding the day-to-day management of the disease [20, 21, 28, 32]. The timing of these conversations is also important to consider, as patients will probably have different views about when they want to receive information on disease progression, with some wanting the information as early as possible. HCPs should therefore be ready to raise the topic early after diagnosis, but keep in mind that others may prefer to receive information only when it becomes relevant, for instance when making important life decisions such as having a child or changing their employment.
For HCPs, the point at which a patient transitions to secondary progressive MS (SPMS) would historically have been a particularly challenging time to try to discuss disease progression, due to potential treatment limitations and the fears of a subsequent breakdown of trust [17, 26, 47]. However, clinical management of MS today is on the cusp of a transformation of treatment paradigms regarding progressive disease . There is now clinical trial data on the use of siponimod for SPMS  and the established use of ocrelizumab in primary progressive MS , and promising treatments are in development for reducing nerve cell loss  and alleviating disability —all making it easier to discuss disease progression more openly and positively. All of this combined should help to alleviate some of the previous concerns about having these conversations.
In light of this, it is important therefore that HCPs are supported as much as possible through access to appropriate communication skills training. Frameworks such as ‘ask-tell-ask’ and the SPIKES tool may help HCPs to deliver information in a way that reduces the chances of overwhelming patients . In addition, understanding the patient’s priorities and psychological state are essential steps before approaching any discussions about disease progression . MS in the 21st Century have developed two communication tools, myMS priorities and myMS commitments, specifically designed to support better mutual understanding of priorities and responsibilities in MS care . Focused and effective disease progression conversations will enable the HCP and patient to set personalised and achievable goals for the future, acknowledge the possibility of future decline but demonstrate opportunities for action and prevention, and empower patient agency. Shared decision-making provides a framework within which it is easier to raise conversations on disease progression over time [6, 43].
Patient empowerment involves educating patients to make informed decisions about their care . Therefore, supplementary educational initiatives are important aspects of fostering good communication and building a shared decision-making framework . The role of educational initiatives in encouraging patient self-management in chronic conditions such as MS has also been widely acknowledged for decades . ‘Newly diagnosed patient days’ are one type of these sorts of patient education initiatives. An example of this is the ‘Ecole de sclerose en plaques’ (School of MS) in France, which is run by the APF France handicap (http://www.sclerose-en-plaques.apf.asso.fr/spip.php?article427). The purpose of these initiatives is to provide those attending with a better understanding of MS and, crucially, an open opportunity to ask questions to the multidisciplinary team. These days may also include peer support, with more experienced PwMS able to present discussions about their own experiences and how they have learned to cope with MS and its symptoms.
One of the biggest barriers to optimal communication around disease progression is the lack of a reliable measure for progression, with the most common clinical scoring system, the EDSS, referred to as MS’s ‘tarnished’ gold standard . Clinical measures such as EDSS and radiological findings often do not take into account the patient’s perspective . A potential solution to this may be to combine clinical assessment scales with parallel feed-in from subjective patient evaluations . From the patient side, it is also helpful for discussions to focus on disability progression rather than disease progression—and for physicians to differentiate the subjective experience of MS from the concept of disease activity and MRI changes, which may not be synonymous [15, 25, 58]. These changes may help to alleviate difficulties for HCPs in distinguishing secondary progression from silent progression—which could, at times, represent an ageing effect —and help PwMS to understand the difference between ‘disease progression’ and ‘progressive MS’, preventing distress that can arise from conflating these concepts.