This study aimed to explore what intervention specificities or attributes newly diagnosed individuals with multiple sclerosis (MS) find important and to explore possible reasons behind their evaluations.

A stepwise approach began with a systematic literature review to identify significant attributes. Patients with MS then assessed these attributes through an online survey, which included a ranking exercise and open-ended questions. Finally, the results were evaluated by the clinical team to select the most relevant factors for personalised care.

From June 2023 to December 2023, all consecutive patients referred to the MS Center of Careggi University Hospital were screened for inclusion. Following recruitment, cognitive and physical assessments were administered at the Don Gnocchi Centre. All participants were interviewed by an experienced neuropsychologist.

Participants were enrolled in the RELIABLE clinical trial, which included a ranking exercise and open-ended question. In the ranking exercise, patients prioritised levels of treatment attributes: treatment effects, methods of intervention, type of monitoring, monitoring, mode and mental support. The open-ended questions addressed the reasons behind the level rankings.

Participants’ rankings revealed the most important levels of each attribute. The highest-ranked method of intervention was disease-modifying treatment, which received 164 points. For mental support, individual psychotherapy was deemed most important with 149 points. Preservation of cognitive function, a key treatment effect, received 144 points. Clinical check-ups were the top type of monitoring with 129 points. Lastly, the hybrid mode of monitoring (half remote/half in-person) was ranked with 77 points. Open-ended responses provided insights into the reasons behind these preferences, emphasising the importance of maintaining mobility, cognitive function and emotional well-being. The clinical team evaluated these findings, confirming that the selected attributes were both clinically relevant and aligned with patient priorities. This evaluation process ensured that the treatment specificities chosen for individualised care were comprehensive and reflective of patient needs.

By identifying and prioritising key treatment attributes, this research highlights the multifaceted nature of MS management and emphasises the importance of aligning treatment options with patient preferences. Addressing these factors through further quantitative preference assessments is essential for preventative MS care, improving patient outcomes and promoting a more patient-centred approach to treatment.

Data are available upon reasonable request. Data will be made available under reasonable demand by the corresponding authors.

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Multiple sclerosis (MS) is a chronic neurological disease that impacts the central nervous system.1 It is one of the most common neurological conditions among young adults (aged 18–40 years), with a prevalence of approximately 2.8 million people worldwide and an incidence that varies geographically.2 Characterised by its unpredictable nature and a wide range of symptoms, MS poses a substantial challenge for both patients and healthcare providers.3 MS is an inflammatory disease where immune cells attack and damage the myelin sheath and nerve fibres in the brain and spinal cord.4 Initially, the inflammation can heal, causing symptoms to come and go. However, over time, the damage becomes more extensive and permanent, leading to a gradual increase in disability. MRI scans are fundamental for establishing diagnosis and for evaluating treatment response.

MS is triggered by environmental factors in individuals with certain genetic risks.5 Current medications reduce the frequency of new episodes but cannot repair existing damage and partially fail to stop progression independent from relapse activity.6 Future research aims to improve treatment by focusing on the underlying mechanisms of the disease.7 As a lifelong condition, MS necessitates ongoing medical supervision and treatment, tailored to the individual’s specific needs and the progression of the disease.8 The interventions for MS are diverse, encompassing disease-modifying therapies, symptomatic treatments, rehabilitation and lifestyle modifications.9

Given the chronic and unpredictable nature of MS, it is crucial to thoroughly assess and comprehend the treatment specifics (also called attributes) that are most important for individuals living with the condition.10 In preference studies, an attribute is a characteristic or feature of something being evaluated; it is a specific aspect that can vary and influence a person’s choices. For example, it can be viewed as a quality that helps to compare different options, such as the price or colour of a product. Researchers use these attributes to understand how people weigh different factors when making decisions. These attributes considered in one’s decision making can vary significantly from person to person, influenced by their symptoms, disease progression, personal preferences and lifestyle.11 Recognising these critical factors is essential for tailoring a more personalised and patient-centred approach to MS care.12 This approach not only enhances treatment effectiveness but also enables collaborative decision-making between patients and healthcare providers regarding the most suitable treatment options at each stage of the disease. Such collaboration is vital for fostering patient ownership and adherence to the treatment regimen.13

Furthermore, early prevention strategies play a crucial role in mitigating the risk of MS development.14 By identifying and addressing risk factors and promoting healthy lifestyle choices, it is possible to reduce the likelihood of MS onset or delay its progression. Therefore, incorporating preventive measures into MS care plans is imperative for improving long-term outcomes and the overall quality of care.

This study was part of the RELIABLE project (Vinnova (ERA-permed project) 2022–00564), which aimed to assess the subclinical burden of neurological impairments in early relapsing-remitting MS patients with no evident neurological disability (Expanded Disability Status Scale (EDSS) score of 2.0 points or less). This comprehensive assessment includes comorbidities, lifestyle, imaging, neuropsychological, gait and balance analyses. Additionally, the RELIABLE project seeks to understand patient preferences, which serves as motivation for this study. A clinical trial part of the project is dedicated to the definition of risk-based classification for newly diagnosed patients, integrating patients’ preferences in the research. This study aimed to explore what intervention specificities or attributes newly diagnosed individuals with MS find important and to explore possible reasons behind their evaluations.

The aim of this study was to explore what intervention specificities or attributes newly diagnosed individuals with MS find important and to explore possible reasons behind their evaluations. This study outlined a stepwise approach that consisted of three steps. Step 1 was a literature review to identify important treatment specificities for newly diagnosed patients with MS. Step 2 was a quantitative ranking exercise, where patients with MS ranked a list of possibly patient-relevant factors. Finally, in step 3, the results of steps 1 and 2 were evaluated within the clinical team of the RELIABLE project to select the most clinically and patient-relevant treatment attributes for individualised treatment for newly diagnosed patients with MS. Within this procedure, five treatment aspects, with three to four levels each, were identified as being relevant for patients and clinicians.

The analysis revealed distinct preferences across five key treatment aspects. First, regarding mental support, individual psychotherapy was most highly valued. Second, for monitoring mode, a hybrid approach (half remote/half in-person) was preferred over in-person or remote-only options. Third, clinical check-ups were favoured. Fourth, disease-modifying treatment was the most desired intervention method, even at this early stage of the disease. Finally, preservation of cognitive function and prevention of disability were the most highly ranked treatment effects.

The final attributes selected were: physical activity, cognitive training, disease modifying drugs, emotional support and treatment effectiveness. The results from the ranking exercise were in line with previous research in the same field regarding preferences among patients with MS.10 11 13 26–29 This departure from solely quantifiable or directly comparable attributes acknowledges the complex interplay of clinical and psychosocial factors inherent in MS management. The MS field appeared to be conservative about drug-based and classical clinical checkups expectation by the patient even at early stages of the disease when it may not be clinically needed, showing that education and communication about MS are needed.

Indeed, qualitative research also showed similar views of patients who do not see the interest of the long-term vision of their disease, for example, struggling with advance care planning at later stages. Even if good options for remote care exist,30 patients reported struggles, and when interrogated about the need for improvements, they clearly expressed the importance of getting more guidance and to ensure that they will get all the needed information to be transferred to their clinician, that they will favour digital equipment that will help them monitor their health and maintain access to local clinic with online facilities linking them to their specific care team (first 3 out of 8 items).31 A suggestion for further research is to account for these specific attributes when offering remote or hybrid options to MS patients. It is also notable that patients themselves identified the need for cognitive function preservation to be a priority even at early stages,32 confirming the current rise of interest in refined evaluation of minimal changes.33 But also the use of targeted interventions using different techniques, from therapy to exercise34 35 or different types of cognitive rehabilitation techniques (computer based, manual based or combined) was observed.36

Recently, reviews about clinical outcomes in MS still did not include specific measures of social connectivity,37 continuing the tradition of measuring optical, motor, balance, sensory or cognitive symptoms.38 Further research could encourage the use of social connectedness measures like the revised Social Connectedness Scale.39

The results for this study may be used for a future quantitative preference assessment in MS to assess the relative importance of treatment attributes and preference heterogeneity.40 While previous preference studies in MS have mainly focused on drug development, such as the work by Lynd et al,41 the results of this study imply that patients consider treatment attributes related to preventative treatment, such as individual psychotherapy, preservation of cognitive function and clinical check-ups, to be important for their preferences of MS care. By integrating patient perspectives by assessing patient preferences and clinical insights, the research highlights the need for a personalised approach to MS care. This approach not only aligns treatment options with patient preferences but also addresses the multifaceted nature of MS management.

A strength of this study was the explorative stepwise approach that included a systematic literature review, patients with MS, healthcare professionals working with MS patients and preferences of researchers aligning with the stepwise method approach that expanded in the social sciences field, representing the excellence of preference studies across fields.42 43 A limitation of this study may have been the limited number of included patients with MS in the recruitment for the ranking exercise (n=41). Therefore, the results of this study may not be generalisable to the general MS population in Italy. However, we suggest further assessing patients’ preferences for the identified MS treatment attributes in this study within a bigger patient sample and with a more robust preference elicitation method. Thereafter, it may be possible to draw conclusions on what treatment attributes MS patients in Italy prefer.

Additionally, the study also reveals gaps in current research, particularly in understanding how to effectively tailor treatments to individual needs and preferences, as most of the research focused on disease-modifying treatment.11 44 These insights pave the way for further investigation into optimising MS care, ensuring that treatment plans are both patient-centred and evidence-based when literature showed the importance of different factors influencing patient preferences in MS.45 Additionally, further research is required for the development of methods to quantitatively assess patient-relevant benefits and risks to support shared decision-making in treatment plans.29

A key innovation lies in the study’s explicit focus on a drug-centric paradigm, even if preventative measures are more and more emphasised and gaining more recognition as adequate intervention and most relevant personalised care in MS.46 This is counterintuitive regarding the patient preferences for non-pharmacological interventions, such as lifestyle modifications and cognitive training.47 The study’s findings, particularly the low ranking of psychosocial engagement preservation, underscoring the lack of importance of quality-of-life considerations in MS care,48 may be due to the fact that they are often overlooked in traditional clinical trials. For example, in a recent systematic review about quality of life aspects in MS, only two papers among 106 mentioned the importance of social aspects.49

By identifying treatment attributes such as physical activity, cognitive training, disease-modifying drugs, emotional support and treatment effectiveness as key for patients, the research underscores the multifaceted nature of MS management. However, the study also reveals significant gaps in current research, particularly in tailoring treatments to individual needs and preferences, and developing quantitative methods to assess patient-relevant benefits and risks. Addressing these gaps through further research is essential for advancing MS care, improving patient outcomes and promoting a more patient-centred approach to treatment.

Data are available upon reasonable request. Data will be made available under reasonable demand by the corresponding authors.