Practice Points
- Evaluate individual support preferences whenever possible, recognizing that needs vary among people with multiple sclerosis. When detailed assessment is not feasible, support provision may emphasize clear, evidence-based informational guidance for men and a broader spectrum, including informational, emotional, and esteem support, for women.
- Ensure patients feel heard and taken seriously. Interactions that are nonjudgmental and respectful and validate patient experiences and choices help build trust and strengthen the therapeutic relationship.
- Combine expertise with kindness, warmth, friendliness, calmness, patience, humor, and attentiveness, alongside constructive skills such as openness, honesty, directness, solution focus, interest, and idea generation, to enhance perceptions of support.
Sex and gender differences in multiple sclerosis (MS) extend beyond the higher prevalence and incidence in women,1,2 affecting risk factor susceptibility,3-5 disease activity and course,6,7 treatment decisions,8 use of nonpharmacological treatments,9 and health care utilization.10 These differences shape the lived experience of MS and likely generate gender-specific preferences, expectations, and needs in interactions with health care professionals (HCPs).9
Existing evidence suggests that people with MS differ in how they seek advice from and communicate with HCPs based on their gender. Women with MS place greater emphasis on receiving depression-related information, including information on treatment options, risks, and benefits,11 and more frequently seek guidance about exercise. Men and women equally request information about medication, complementary therapies, finances, and housing.12 Further, neurologists have reported that men with MS tend to minimize physical complaints and underreport changes in mood, sexual function, relationships, cognition, and the impact of disability on daily activities.9
Beyond advice-seeking behavior and information disclosure, gender differences may exist in preferences for the type of support patients expect from neurologists, for whom support provision is recognized as one of several core roles.13 Our previous quantitative findings indicated that women with MS 55 years and older may place greater value on emotional support from their neurologists, whereas older men tend to prioritize informational support.14 However, systematic, comprehensive, and qualitative investigations into these gender-specific support preferences are still lacking.
Using Cutrona and Suhr’s social support coding framework,15 in this exploratory qualitative study, we aimed to identify similarities and differences in met and unmet needs and expectations for neurologist-provided informational, emotional, esteem, network, and tangible support between men with MS and women with MS. Ultimately, our goal was to contribute to a better understanding of patient expectations and to inform support strategies that may improve satisfaction with care, particularly in contexts where differences between men and women have been observed, such as the initial diagnostic consultation.16
Methods
Study Setting and Population
We utilized data from the Swiss Multiple Sclerosis Registry (SMSR), an ongoing observational study of adults with MS residing or receiving treatment in Switzerland. Participation in the SMSR is voluntary and requires informed consent as well as confirmation of an MS diagnosis. Participants complete a baseline survey at enrollment, followed by semiannual follow-up surveys. Surveys, available online or on paper, are developed in collaboration with participants, who help identify key research topics. The SMSR received approval from the Ethics Committee of the Canton of Zurich (PB-2016-00894; BASEC-NR 2019-01027), and detailed descriptions of its methods appear elsewhere.17,18
For this study, we analyzed free-text responses to questions concerning neurologist-provided support, which were embedded within the SMSR follow-up survey distributed in November 2021. All participants who were enrolled in the registry and had not withdrawn consent at that time were invited to complete the follow-up. The present analysis was limited to respondents who reported being under the care of a neurologist, provided an analyzable response to at least 1 of the 3 support-related questions, and had complete data on gender and age. An analyzable response was defined as one relevant to the question posed, with no minimum word count required; however, noninformative entries (eg, “NA,” or a 1-word reply such as “yes” to a question requiring elaboration) were excluded.
Data Collection
Perceived support provided by neurologists was assessed using 3 open-ended questions. In the online questionnaire, these questions were presented only to participants who indicated they were currently receiving care from a neurologist, and participants completing paper questionnaires who did not report neurologist care were instructed to skip them. Participants were asked to describe the ideal support they wished to receive from their neurologist, identify the most valuable forms of support currently provided by their neurologist with explanations for their choices, and report any additional support they would like to receive but were not currently receiving. The development of these questions has been described elsewhere,14 and the questions can be found in Table S1 (all supplemental materials are available in a PDF at the end of the online article). Responses were collected in German, French, and Italian. After removal of potentially identifying information, anonymized free-text responses were translated into English for analysis using DeepL Pro (DeepL SE). Translations were reviewed for plausibility by the first author; ambiguous passages were additionally checked by the second author, who has native-level proficiency in English, German, French, and Italian; and further spot checks were conducted jointly by the first and second authors.
Sociodemographic data from the SMSR baseline questionnaires and MS-related data from the 2021 follow-up survey were used for sample description. To determine gender, we used data collected at enrollment during which participants selected either “female” or “male.” The question did not explicitly distinguish between biological sex and gender identity. Given our study’s focus on social interactions, we interpreted this as representing gender rather than biological sex.19
Analysis
Sociodemographic and MS-related data were summarized using counts, frequencies, means, and medians. Free-text data from all 3 questions on neurologist-provided support were pooled and analyzed deductively for fulfilled and unmet support needs and expectations using the social support coding framework developed by Cutrona and Suhr.15 This framework comprises 5 main categories of support (informational, emotional, tangible, esteem, and network support), subdivided into 23 subcategories (italicized throughout the text). Subcategories are briefly defined in parentheses at their first mention in the narrative summary of the Results section, with detailed definitions provided in Figure S1. Additional methodological details, including framework adaptation, are described elsewhere.14
The first and second authors conducted a multistage coding process, assigning survey responses to all 3 questions to support subcategories separately for fulfilled vs unmet needs and expectations. First, a subset of responses was independently pilot-coded to align interpretation of the coding framework. Next, both authors independently coded the full data set, yielding an intercoder agreement of 68.7% prior to consensus. Coding discrepancies were resolved through cross-author discussion. The consensus-coded data set was then iteratively reviewed by the first author and subsequently by the second author. Nonresponses were not assumed to indicate a lack of valuable support or a lack of need for additional support; only explicit statements to that effect were coded as such. Any data that did not fit the predefined framework categories were analyzed inductively to identify new themes. Findings were then compared for men and women. Codes or topics that appeared exclusively in one group (ie, present in women but absent in men or vice versa) were classified as differences, whereas those observed in both groups were categorized as similarities. These differences and similarities are presented in a narrative summary, including both common and less frequent codes and topics, with codes supported by only a single participant specifically noted.
To contextualize the identified differences and similarities, we provided a descriptive quantitative summary, presenting counts and frequencies of codes by support category for men and women. Within each category, codes were counted at most once per participant; however, participants could contribute to multiple categories. Additionally, we provided word clouds illustrating the most frequently found codes within support subcategories for men and women. Data analyses were performed using R (R Foundation) and RStudio (Posit Software PBC) and MAXQDA software (VERBI Software) for qualitative data analysis.
Results
Study Participants
Of the 1016 participants who completed the follow-up questionnaire (45.4% response rate), 672 (66.1%) responded to at least 1 question on neurologist-provided support. After excluding 2 respondents for missing gender and age data, the final sample included 670 participants, contributing 1446 text inputs: 372 from 163 men and 1074 from 507 women. Table S2 presents participant characteristics.
Frequency Analysis of Codes on Needs and Expectations for Neurologist Support
Informational support was the most frequently reported category of fulfilled needs and expectations among men, accounting for 39.0% of responses. Among women, emotional support was most common (27.6%), followed by informational support (26.8%). Unmet support needs and expectations were reported by 86 women (17.0% of women in the study) and 40 men (24.5% of men). Informational support made up 65.3% of unmet needs and expectations codes among men. Among women’s unmet needs and expectations codes, informational support accounted for 32.9%, emotional support for 20.9%, and network for 28.0% (Table S3).
At the subcategory level, presence (a subcategory of network support, defined as spending sufficient time with the recipient and being available) was predominant in both fulfilled and unmet needs and expectations among women. In contrast, teaching (a subcategory of informational support, defined as providing detailed information, facts, or news about the situation or about skills needed to deal with the situation) was most frequently mentioned in both fulfilled and unmet needs and expectations among men (Figure S2).
A total of 147 (29.0%) women and 61 (37.4%) men explicitly stated that they did not desire any additional support beyond what they were already receiving from their neurologists. Among these participants, some expressed high satisfaction with their neurologists, noting that they felt well taken care of. Others used phrases such as “so far,” “yet,” or “currently” in their responses (eg, “No, I have received excellent help so far.”) suggesting that their needs might change over time.
Narrative Summary of Similarities and Differences Between Men and Women in Fulfilled and Unmet Needs and Expectations for Neurologist Support
Informational Support
“I gain insight into current medical advances, ie, [my neurologist] supports me with [their] expertise and informs me openly and directly about the advantages, disadvantages and, [most importantly], the unknown when making decisions.” (Man)
Both men and women reported fulfilled informational support needs and expectations in the subcategories of suggestion and advice (offering ideas and suggesting actions), situational appraisal (reassessing or redefining the situation at hand), and teaching. However, the referral (referring the recipient to some other source of help)subcategory was identified only in women’s data. Unmet needs across all 4 subcategories were found in both men and women (Table 1).
Tangible Support
“Cost approvals/regulations and all the other paperwork are dealt with quickly, which I appreciate.” (Woman)
Data related to neurologists performing administrative tasks (offering to perform an administrative task, including instead of the recipient) or expressing a willingness to do so were found in data of both men and women (Table 2).
Network Support
“I appreciated that I can always get in touch with my neurologist, even when I’m on holiday. I appreciate the time allocated for the consultation and that I can ask all my questions and don’t have the feeling that I need to hurry.” (Woman)
The data supported 2 subcategories of network support: presence and companions (reminding the person of the availability of others with shared interests or experiences). Although no differences between men and women were found in the presence subcategory, topics related to companions appeared only in the data from women among fulfilled needs and from 1 woman and 1 man among unmet needs (Table 3).
Esteem Support
“My neurologist doesn’t try to persuade me to do anything but accepts my opinion and my decisions.” (Woman)
The only subcategory of esteem support identified in the data was validation (expressing agreement with the recipient’s perspective on the situation). This was reflected in the experiences of both men and women in both fulfilled and unmet needs, although unmet needs were reported by only 1 man (Table 4).
Emotional Support
“The conversations with [my neurologist] are very personal, and I need that. I trust [my neurologist] 100%, and they give me a sense of security. I talk a lot, which is certainly not easy for many people. But for me, there is a connection to the other person.”(Woman)
Fulfilled emotional support needs and expectations were reflected in the subcategories of relationship (acknowledging the importance of trust and familiarity with the recipient), sympathy (expressing sorrow or regret for the recipient’s situation), listening (attentive and responsive engagement while the recipient speaks), understanding and empathy (expressing an understanding of the situation), and encouragement (instilling confidence in the recipient) for both men and women. Unmet needs were reported in all subcategories except sympathy, which was mentioned only by women (Table 5).
Absence of need for emotional support from the neurologist. A total of 29 men (17.8% of men in the study) and 47 women (9.3% of women) explicitly stated they did not need or expect emotional support from their neurologists. Reasons given included experiencing a mild disease course; receiving sufficient support from partners, friends, or family; or relying on other HCPs such as family physicians, psychologists, psychiatrists, MS nurses, advanced practice nurses, and physiotherapists.
“Since my MS has been calm since the first attacks and I only have minor complaints, I don’t need any emotional support; I feel that my wife and family are looking after me very well.” (Man)
Some participants distributed their emotional support needs across multiple providers to ensure comprehensiveness. Others felt neurologists lacked the training to offer emotional support and could not replace psychologists. Time constraints during consultations were also cited as a barrier, with participants viewing it as appropriate for neurologists to focus on other aspects of care. As a result, many felt it was their responsibility to communicate emotional needs explicitly, if necessary.
“The [desired] support is not possible in the hospital, and I think that’s OK because it’s better to deal with many urgent concerns and patients there. The emotional part can also be provided outside the highly specialized hospital. For example, [by] a family doctor of many years.”(Woman)
Emerging Themes Beyond the Support Coding Framework
We identified 3 additional themes that participants considered beneficial or lacking in their care but that did not fit within our predefined support framework: health care site features, disease management and diagnostic strategies, and neurologists’ traits.
Health Care Site Features
Only women conveyed the importance of health care site features. Women valued having multiple specialists, MRI testing, therapy, and support services (eg, social work) available at 1 convenient site near their homes. They also emphasized infrastructure quality, including accessibility and modern equipment. One woman noted the absence of onsite MRI as an unmet expectation.
Therapy and Diagnostics
Both men and women appreciated neurologist-facilitated access to optimal and innovative therapies, including preferred disease-modifying therapies, physiotherapy, and complementary medicine. Participants stressed the importance of having comprehensive disease monitoring, particularly regular MRI, and appropriate therapy adjustments based on results ion, and 1 noted that medication cost should not influence therapy choice. Two women appreciated not having to attend frequent checkups.
Participants reported dissatisfaction with insufficient referrals from neurologists to other specialists, physiotherapists, MS nurses, and rehabilitation services. They also expressed dissatisfaction with the exclusion of treatments such as riding therapy, cannabis-based products, osteopathy, and acupuncture. Difficulties obtaining sick leave approvals, especially related to fatigue, were reported. Two participants (1 man and 1 woman) reported a lack of neurologist support for their euthanasia recommendations when describing the further support they wished to receive.
Neurologists’ Traits
“He has a strong and decisive character; he knows what he’s doing.” (Woman)
“[My neurologist] could show more initiative for new things; I always have to make suggestions myself.” (Man)
Both men and women wrote about the professional and personal qualities of neurologists when describing the support they received. Professional attributes encompassed expertise, professionalism, scientific rigor, experience, knowledge, continual learning, and training. Personal traits were divided into human-centric (kindness, warmth, friendliness, calmness, patience, humor, attentiveness) and constructive skills (openness, honesty, directness, solution focus, interest, idea generation, optimism). Women specifically appreciated assertiveness, describing neurologists as “strong and decisive,” “objective,” “confident,” and convincingly competent with a matter-of-fact style. Unmet expectations regarding neurologists’ demeanor included perceptions of coldness, disinterest, and a lack of attentiveness. Additionally, 3 women expressed a desire for a more confident demeanor and more experience in their neurologists.
Discussion
We analyzed free-text survey responses on desired support from neurologists from 507 women and 163 men with MS. Informational support dominated men’s responses, whereas women’s responses were more evenly distributed across informational, emotional, and network support. Although there was considerable overlap in support needs and expectations between men and women, some differences emerged, particularly in the areas of informational and esteem support. Additionally, 3 themes beyond the predefined support coding framework appeared to influence participants’ perceptions of support: health care site features, therapy and diagnostics, and neurologist traits. Within these themes, women uniquely emphasized the importance of convenient care locations and assertive neurologists.
We identified a comprehensive range of social support within neurologist-patient relationships for both men and women with MS. Informational, emotional, tangible, network, and esteem support manifested through holistic care delivery, including accessible and detailed information about MS, guidance on treatment options (including novel and complementary therapies), practical advice for daily living, assistance in navigating health care services, and respectful, empathetic communication. These findings are consistent with prior literature outlining the essential components of effective neurologist-patient interactions in MS care.11,12,20,21
Although men and women shared a common understanding of what effective neurologist support entails, men most frequently described informational support, whereas women’s responses spanned informational, emotional, and network support more evenly. Although these differences may partly reflect underlying sample characteristics, such as higher educational attainment and a greater proportion of married participants among men, both factors known to shape perceptions and availability of social support,22 they may also indicate that men and women assign different relative importance to specific support dimensions. This distinction may be relevant when prioritizing care elements during time-limited consultations.
Fulfilled support needs and expectations that appeared exclusively in the data of one gender were almost entirely reported by women. This is likely attributable to the greater data granularity afforded by the higher proportion of women in the sample. Among the most prominent of these themes was the value women placed on encouragement, specifically receiving praise, reassurance about their ability to manage MS, and support in alleviating disease-related fears. Fear associated with MS can have a detrimental impact on quality of life23; however, motivation-oriented support from HCPs can enhance physical, psychological, and social functioning and facilitate the achievement of health-related goals.24,25 Consequently, addressing fear and low self-confidence through such supportive interactions may be particularly beneficial for improving the overall well-being of women with MS.
Men reported unmet support needs with greater frequency than women. Findings from prior studies indicate that men with MS report lower levels of available social support and self-efficacy26,27 and demonstrate reduced participation in support groups,21 potentially increasing reliance on their neurologist for support. However, men’s unmet needs in our data focused predominantly on gaps in informational support, with relatively few mentions of other support categories. This pattern may indicate that men primarily look to neurologists for information while meeting other needs through informal networks (eg, family and friends) or that they are less inclined to articulate noninformational needs in clinical contexts. Men expressed a need for improved information provision regarding driving cessation, vaccination, and proactive symptom assessment. Because men are generally less likely to voluntarily report symptoms and may downplay the impact of disability on daily life,9 systematic symptom screening combined with direct inquiry about the effects of MS could be especially beneficial. Follow-up education tailored to these insights may offer significant value for men with MS.
Women, on the other hand, expressed unmet needs for information and guidance specifically related to treatment decisions. This insight may help explain women’s lower rates of initiating high-efficacy treatments8 and their greater likelihood of discontinuing therapy.28 Addressing these information gaps could therefore enhance women’s engagement with treatment and improve outcomes. Additionally, women reported feeling invalidated during clinical discussions, particularly when describing fatigue. This concern is especially significant given the higher prevalence of fatigue among women with MS,29 suggesting that women’s experiences with this common symptom may be underacknowledged. Moreover, women described experiencing insufficient empathy during the diagnostic process, a finding consistent with prior research showing lower satisfaction among women during initial diagnostic consultations.16
Although not constituting direct support provision, health care site features, therapy and diagnostics, and neurologist characteristics may influence participants’ perceptions of neurologist-provided support, as these factors were frequently mentioned when participants described their experiences of support. Both men and women valued professional, knowledgeable, and approachable neurologists. However, women emphasized the importance of assertive neurologists, a preference not reported by men. This preference may relate to their expressed desire for more directed treatment guidance, with women potentially viewing assertiveness as indicative of reliable decision-making.
Strengths and Limitations
To our knowledge, this is the first study to systematically compare how men and women with MS differ in their preferences for neurologist-provided support. With nearly 700 participants representing diverse sociodemographic and MS characteristics, the study combined deductive and inductive analyses to capture both expected and emerging aspects of care valued by participants. This approach broadened our understanding of factors influencing support provision. However, some limitations should be noted. First, data were collected during the COVID-19 pandemic. Although access to care in Switzerland remained relatively stable30 and participants did not explicitly link their responses to the pandemic, the broader context may have influenced perceptions of patient-provider relationships.31 Further, although the response rate was comparable to other SMSR follow-up waves, selection bias remains possible, particularly if the survey’s COVID-19 focus led to differential participation. Second, an overrepresentation of respondents with particularly salient support experiences or expectations cannot be excluded; the end-of-survey placement of the support items may have amplified this through fatigue-related break-off and item nonresponse. Third, despite rigorous review of translations across languages, subtle semantic differences may have influenced interpretation and coding. Fourth, the survey did not differentiate between sex and gender identity, and the resulting binary measure does not capture gender diversity. Fifth, the approximately 3:1 ratio of women to men, although reflecting MS prevalence, may have limited depth of insight for men, potentially influencing the observed differences. Finally, because both gender and social support are culturally shaped and because social support processes may vary by sociodemographic and clinical characteristics, our findings may have limited transferability to MS populations in other settings or with different profiles.
Conclusions
Men and women share a common understanding of effective neurologist support, which includes continuous and person-centered care, clear explanations, detailed information about MS and treatments, guidance on living with MS, and empathy. However, they may differ in the relative emphasis placed on specific support dimensions: Men may prioritize informational support, whereas women may value various types of support more evenly. Health care site features, therapy and diagnostics, and neurologist characteristics can shape how individuals perceive the support provided by neurologists.
