Patients’ Perceptions of Care Integration in Multiple Sclerosis Care in Finland: A Cross- Sectional National Survey

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Laakso, Laura Mäkitie, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7364638/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 7 You are reading this latest preprint version Abstract Background Multiple sclerosis (MS) is a chronic neurologic disease requiring long-term, multidisciplinary management. Integrated care is considered essential for treating chronic conditions, yet there is limited evidence on how people with MS (pwMS) perceive integration in their care. In Finland, MS is one of the most prevalent leading causes of disability with more than 12,000 individuals being affected by the disease. In addition, a major health and social care reform in 2023 was designed to integrate services across primary and specialized care​. This study aimed to assess pwMS perceptions of care integration and identify areas for improvement in their care pathways. Methods We conducted a national cross-sectional web-based survey in collaboration with the Finnish Neuro Society. The target population was adult pwMS in Finland, recruited via the society’s membership (N = 4122 invited). The survey (101 items) covered sociodemographics, experiences and preferences regarding care integration, and self-reported service utilization. Most survey items used response scales. Descriptive statistics were used to summarize responses. Results A total of 1,467 pwMS responded (35.6% response rate), representing ~ 12% of Finland’s MS population. The most common age group was 45–54 years old, and 79.2% were female. A majority of 64.6% reported being satisfied with the care they have received, and 32.6% rated their overall health positively. Approximately 42% reported not receiving provider-initiated follow-up in the past year, and 23.6% had left an appointment feeling unsure about the next steps. Moreover, 53.2% reported significant life challenges affecting self-care, while 25.3% had a plan co-created with healthcare personnel to address these challenges. Inter-provider communication was frequently perceived as fragmented and 40% reported that next-of-kin were never involved in their care. Conclusions By adopting a patient-centered care approach, this first nationwide survey of pwMS in Finland reveals high overall care satisfaction alongside specific areas of further improvement in care integration. Patients report fragmented communication between providers, low involvement of family support, and uncertainty about the existence of care plans. The findings underscore the need for health policy and nationwide practice initiatives to improve coordination, communication, and patient engagement in MS care. Further research is needed on the effects of, for example, dedicated care coordinators for MS and other chronic diseases. Multiple sclerosis Integrated care Patient-centered care Health services research Care coordination Finland Figures Figure 1 Figure 2 Figure 3 Figure 4 Introduction Multiple sclerosis (MS) is a chronic inflammatory disorder of the central nervous system that affects over 12,000 people in Finland (Ala-Kauhaluoma & Laurila, 2008), with a global prevalence of 35.9 and an incidence of 2.1 per 100,000 persons/year (Walton et al., 2020). Finland is an especially high-risk region for MS with reported prevalence of 241.4 and incidence of 8.6 per 100,000 persons/year (Maunula et al., 2025). MS is among the leading causes of disability in working-age adults and ranks as the third most common cause of disability pensions in Finland (Ala-Kauhaluoma & Laurila, 2008). The associated socioeconomic impact is substantial, with an average annual cost of approximately €50,000 per patient (Ruutiainen et al., 2016). Given the cost and complexity of MS management, long-term, multidisciplinary follow-up by neurologists, rehabilitation specialists, nurses, general practitioners and other providers is crucial (Harris et al., 2003). Consequently, integrating these services is vital to prevent fragmented care. Ideally, an integrated and multidisciplinary approach should counter fragmentation by bringing specialists together to provide continuous, comprehensive care (Forbes et al., 2007; Harris et al., 2003; Vickrey et al., 2000)​, and improve outcomes (Savio et al., 2025). However, despite this recognized need, people with MS (pwMS) continue to report navigating fragmented healthcare systems; they struggle to find the support they need across multiple providers, reporting inadequate information exchange and little opportunity to voice their concerns during doctors’ appointments (Beczek et al., 2025). These shortfalls can leave patients feeling unheard and less engaged in their care. In response, previous literature has called for better patient–provider communication and shared decision-making in MS management (Péloquin et al., 2021)​. Improved dialogue not only helps align treatment with patient needs but also fosters trust and adherence, which are crucial for long-term disease management (Alroughani, 2015)​. A strong support network, including family, peers, and community resources, is also a key pillar of integrated MS care. Studies indicate that lower social support is associated with higher levels of fatigue and depression, whereas greater support correlates with better quality of life (Eizaguirre et al., 2023). Conversely, according to the same study, patients who feel well-supported tend to experience less anxiety and report higher health-related quality of life. Therefore, a holistic, multidisciplinary approach that facilitates the integration of support groups, counseling, and community services may improve patient well-being and bridge gaps that medical care alone cannot fill. Despite these well-documented challenges, research on integrated MS care remains limited, particularly in the Finnish context. While international guidelines promote interdisciplinary services to address MS’s multifaceted needs (Harris et al., 2003), there is a notable gap in evidence regarding how effectively these recommendations translate into the patient’s experience of everyday practice (Jansen et al., 2007)​. Moreover, few studies capture patients’ actual experiences with care integration, an omission that leaves clinicians and policymakers uncertain about where the most pressing improvements are needed. In fact, pwMS across various countries continue to report unmet needs and dissatisfaction with certain aspects of care​ (Pétrin et al., 2020), suggesting that real-world implementation often falls short of guideline ideals. Consequently, there is a pressing need to explore patient perspectives more thoroughly to both pinpoint the specific gaps in current service provision and to inform actionable strategies for enhancing integrated MS care. To address these gaps, this study investigated Finnish MS patients’ perceptions of how well their care is integrated. To achieve this, we conducted a large-scale national survey to capture patient experiences across multiple dimensions of integrated care, along with respondents’ preferences for potential improvements. Specifically, we addressed the following research questions: How do pwMS in Finland perceive the integration of care across different healthcare providers and services? What gaps in integration can be identified based on pwMS’s perceptions? Which elements of integrated healthcare do pwMS value most? This study’s contributions are threefold. First, this is the first study to quantitatively examine pwMS’ perceptions of care integration at a national level in Finland, with a target population covering roughly one-third of the country’s MS population. Second, the findings highlight concrete, patient-prioritized perceived integration gaps such as low proactive follow-up, minimal cross-provider communication, and limited next-of-kin inclusion. Third, the study offers timely, policy-relevant evidence for the Finnish Well-being Service Counties, highlighting which integration levers such as single point contacts, clear care plans, and automate reminders, patients value the most, informing prioritization efforts in implementation. Collectively, the work complements earlier studies from other countries, fills a national evidence gap, and provides a survey instrument with a baseline against which the impact of the ongoing reform can be tracked. Methods We carried out a cross-sectional national survey of pwMS in Finland. The study was conducted in collaboration with the Finnish Neuro Society (Neuroliitto ry), a non-profit patient organization that supports individuals with MS and rare neurological conditions. As of February 2024, the Finnish Neuro Society had 4,122 members who identified themselves as having MS, representing roughly one-third of the estimated MS population in Finland. These 4,122 individuals constituted the target sample for the survey. Inclusion criteria were broad: adults (age ≥18) with self-reported MS. Membership in the Neuro Society was used as a proxy for reaching a large national cohort of pwMS; no additional exclusion criteria were applied. Research Context In Finland, the context of MS care is characterized by a publicly funded system with specialized MS clinics (Vesinurm, Maunula, et al., 2024). MS diagnoses and initial treatments are almost exclusively handled in public hospitals by neurologists. Follow-up care is typically provided in neurology outpatient clinics (secondary or tertiary care), while a minority of stable patients or those with primary progressive MS (PPMS) without active treatment may be managed in primary care. A small segment of patients chooses private neurologists for follow-up. Diagnostic workups include neurological exams, MRI imaging, and cerebrospinal fluid analysis. After diagnosis, patients commence disease-modifying therapies (DMT) and require regular monitoring (lab tests, MRI at 6 months, and periodic neurologist visits every 6–12 months). Nurse consultations are usually offered shortly after diagnosis for education and psychosocial support, and many hospitals host informational sessions for newly diagnosed patients which also facilitate peer support. In some regions, patients can contact MS nurses between scheduled follow-ups for concerns or symptom flare-ups, and physician appointments can be brought forward if needed. If a patient has no active treatment, they may be discharged to primary care for monitoring. A major health system reform in Finland took effect at the start of 2023. This reform merged over 300 municipal healthcare providers into 22 Well-being Service Counties, integrating primary, secondary, and tertiary health services under unified regional administrations (Tynkkynen et al., 2025). One explicit goal of the reform is to improve service integration across the different levels of care, ensuring smoother coordination between e.g. health centers and hospitals. With the reform ongoing, it is timely to assess the current state of care integration from the patient’s viewpoint and identify areas most in need of improvement. Survey Instrument The survey questionnaire consisted of 101 items designed to capture respondents’ experiences with integrated care and care coordination, as well as background information and service utilization (Appendix 1). The content was organized into six sections as presented in Table 1. [TABLE 1] Summary of the Survey Questionnaire Sections, Their Content, and Origin. Survey section Section content Number of items Origin 1. General experiences of MS care practices Questions on routine care practices (e.g. appointment reminders, preparatory instructions, follow-up contacts, clarity of next steps). Mostly yes/no and “I don’t know” responses. 7 Adapted from the Patient Perceptions of Integrated Care (PPIC) survey, with wording tailored to MS and Finnish context. 2. Integration of care in MS treatment (past year), Part 1 Statements about coordination within MS-related care over the last 12 months, focusing on provider communication and care processes. Rated on a 5-point frequency scale. 23 Derived from PPIC (modified to reflect Finnish MS care setting). 3. Integration of care in MS treatment (past year), Part 2 Continuation of Part 1, further detailing MS care coordination in the previous year (e.g. communication among MS providers, patient involvement). Rated on a 5-point frequency scale. 8 Derived from PPIC (modified to reflect Finnish MS care setting). 4. Integration of care across services (general experience) Broader coordination across the healthcare system (not only MS-related), including family inclusion, cross-sector coordination, and medical record quality. Rated on a 5-point frequency scale. 15 Custom items informed by two preliminary studies (Norway workshops/interviews and Finland focus groups/interviews). 5. Treatment plan and information flow Statements about knowledge and usage of one’s treatment plan, receiving and understanding test results, and care coordination details. Rated on a 5-point agreement scale. 9 Custom items informed by preliminary studies (Norway and Finland). 6. Preferences for care pathway elements Respondents’ views on the importance of potential care improvements (e.g. single point of contact, automated reminders, shared goal-setting). Rated on a 5-point importance scale. 13 Custom items informed by preliminary studies (Norway and Finland). 7. Background information and sociodemographics Questions related to the respondent and their history 22 Required background information The survey instrument has not been previously published elsewhere. All items, their English translations, and abridged versions are reported in the supplement (Annex 1). The survey instrument was developed by adapting existing validated measures and incorporating new items from prior qualitative work. Sections 1, 2 and 3 of the survey instrument were derived by modifying the Patient Perceptions of Integrated Care (PPIC) survey, a validated instrument designed to measure patients’ experience of care integration across multiple domains (Singer et al., 2013). The original PPIC, developed in the United States, encompasses domains such as care coordination, access to information, and team communication. Following recommended practice, we translated the PPIC items to Finnish and then the authors tailored the items to the Finnish MS context. For example, relevant items were modified to focus on MS care specifically rather than any conditions the patient may have been diagnosed with. Previous studies have found the PPIC survey can be adapted to different healthcare contexts with expert input while retaining its validity (Tietschert et al., 2018). Sections 4, 5, and 6 included custom items informed by two preliminary studies. First, a pre-study in Norway (May–June 2022) involved three workshops and six interviews with cancer patients and their next-of-kin (n=41), using the critical incident technique to identify coordination challenges in chronic care processes (Halvorsrud et al., 2025). Findings from the patient-reported critical incidents were formulated into survey questions that we adapted for the context of MS care. Second, a pre-study in Finland (2021–2022) involved focus groups and interviews with healthcare professionals (HCPs) in home care and private chronic care services (Vehkamäki et al., 2024; Vesinurm, Sylgren, et al., 2024). This provided the perspective of providers on common care integration problems and potential solutions. Results from these HCP interviews (n=10) and focus groups (n=2 groups, total n=16) were developed into items in sections 5 and 6. To improve validity, the draft instrument underwent expert review and piloting. Three researchers with expertise in health services and three representatives from the Finnish Neuro Society reviewed the content for relevance and clarity. We then conducted cognitive pretesting with three pwMS who completed the survey in the presence of a researcher, verbalizing their understanding of each question and any confusion. Minor wording adjustments were made based on this feedback. Finally, a pilot survey was sent to 10 volunteers with MS from the Finnish Neuro Society; they filled the survey independently and provided open-ended feedback. The instrument was revised for clarity and length before full deployment. Data Collection The final survey was administered online using the Webropol platform. An email containing a survey link, an invitation letter, and a description of the research project was sent by the Finnish Neuro Society to all 4,122 eligible members on February 26, 2024. The survey remained open for responses until March 26, 2024 (one month). Two reminder emails were sent (approximately 2 weeks and 3 weeks after launch) to boost response rate. Participation was voluntary and all responses were recorded anonymously. Data Analysis We performed a descriptive analysis of the survey data. Categorical survey results were summarized as frequencies and percentages of respondents. All percentages were generally calculated out of the number of respondents who answered a given question. We present several key survey results in tabular form. On a 5-point scale, ‘Always’ and ‘Often’, ‘Important’ and ‘Very Important’, and ‘Completely agree’ and ‘Agree’ were classified as favorable responses, while ‘Never’, and ‘Rarely’, ‘Not Important at all’ and ‘Not important’, ‘Completely disagree’ and ‘Disagree’ were classified as non-favorable responses. The midpoint of the scales; ‘Sometimes’, ‘Neither agree nor disagree’, and ‘Neutral’ were treated as a neutral response. No imputation was made for missing data. For clarity of reporting, the 5-point scale was flipped for a few individual items to better align the responses with other items. All such changes are reported alongside the results. Because the aim was primarily exploratory and descriptive, we did not perform comparative subgroup analyses or inferential statistics in this report. Results are reported following the STROBE cross-sectional reporting guidelines (Von Elm et al., 2007). Results Respondent characteristics Of the 4,122 invitations, the survey was opened by 3651 (88.6%) of the respondents, with 2032 (49.3%) having started responding, and 1,467 yielded complete responses, corresponding to a 35.6% response rate. This sample represents approximately 12% of Finland's estimated pwMS population. Most respondents were female (79.2%), and the median age group was 45–54 years (Table 2). Only 6.2% were under the age of 35. Most respondents (70.9%) lived in multi-person households (≥2 people), and 27.1% had at least one child under the age of 18 living in the same household. Educational attainment was diverse: 53.7% had a secondary school or lower education, while 44.8% held a higher education degree (bachelor’s or above). Nearly half (47.7%) of participants were retired (including disability pension), consistent with the disease’s impact on work ability; 31.5% were employed full-time and 14.2% part-time, with a small number of students and unemployed individuals. Finnish was the first language for 95.3% of respondents. The primary care provider was a secondary or tertiary clinic for 77.6%, primary healthcare for 13.9%, and a private provider for 2.9%. [TABLE 2] Respondent characteristics (n=1467) Characteristic Respondents, n (%) Gender (n=1463) Female 1162 (79.2) Male 298 (20.3) Age (years) (n=1467) 18-24 5 (0.3) 25-34 87 (5.9) 35-44 318 (21.7) 45-54 457 (31.2) 55-64 407 (27.7) 65-74 168 (11.5) 75 or older 25 (1.7) Education (n=1453) Primary school 59 (4.0) Secondary school 413 (28.1) Bachelor’s degree 325 (22.2) Master’s degree 294 (20.0) Doctoral degree 38 (2.6) Other 324 (28.6) Size of Household (n=1457) 1 (I live alone) 332 (22.6) 2 706 (48.1) 3 191 (13.0) 4 178 (12.2) 5 or more 60 (4.1) Number of underaged members in the household (n=1467) 0 1070 (72.9) 1 193 (13.2) 2 158 (10.8) 3 32 (2.2) 4 or more 14 (0.9) Employment status (n=1466) Full-time 462 (31.5) Part-time 209 (14.2) Student 13 (0.9) Retired (inc. disability retirement) 700 (47.7) Unemployed 33 (2.3) Other 49 (33.3) First language (n=1465) Finnish 1398 (95.3) Swedish 57 (3.9) Other 10 (0.7) Has one or more additional diagnoses that require regular doctor appointments (n=1404) Yes 611 (41.6) No 793 (54.1) Year of MS diagnosis (n=1464) Mean (sd) 2009 (10.4) Median (IQR) 2011 (2002–2018) Primary care provider for MS (n=1384) Primary healthcare (e.g., health center) 204 (13.9) Secondary or tertiary healthcare (e.g., neurological clinic) 1138 (77.6) Private provider (e.g., private neurologist) 42 (2.9) Disease status during the last year (multiple selections possible), (n=1586) Newly diagnosed MS 66 (4.5) MS controlled, no significant functional disabilities 553 (37.7) MS controlled, functional disabilities 809 (55.1) MS not in control (e.g., Flare-up occurred) 128 (8.7) Self-reported health status (n=1458) Excellent 61 (4.2) Good 417 (28.4) Satisfactory 506 (34.5) Fair 362 (24.7) Poor 112 (7.6) Self-reported satisfaction with care (n=1408) Excellent 224 (15.3) Good 724 (49.3) Satisfactory 248 (16.9) Fair 133 (9.1) Poor 79 (5.4) *Education “Other” includes unspecified diplomas or ongoing studies. Employment “Other” includes e.g. homemakers. Primary MS care provider percentages are estimates among those who answered (some respondents did not know or have an active provider). Disease status categories were not mutually exclusive; percentages are of total respondents (n=1467). Over two-fifths of respondents (41.6%) reported having one or more additional chronic conditions (multimorbidity) that require regular doctor’s appointments. The course of the disease among respondents varied: 4.5% identified as newly diagnosed (within that year), 37.7% said they experienced MS with no significant disabilities, 55.1% had some functional disabilities, and 8.7% experienced an uncontrolled course or a relapse in the past year. These categories were not mutually exclusive, for example, some newly diagnosed patients also had a relapse. The mean year of diagnosis was 2009 (SD ±10.4 years) and the median was 2011 (IQR 2002-2018), implying that most respondents had been living with MS for around 10–15 years. Most respondents perceived their overall health status as modest. Regarding current general health status, 32.6% responded ‘Excellent’ or ‘Good’, whereas the majority of 59.2% rated it as ‘Satisfactory’ or ‘Fair’ and 7.6% as ‘Poor’. In contrast, satisfaction with healthcare providers was markedly higher: 15.3% responded ‘Excellent’ and 49.3% ‘Good’ (total 64.6% positive), with 16.9% Satisfactory and only 14.5% ‘Fair’ or ‘Bad’. Section 1: General Treatment Practices In the past year, 54.9% of respondents reported receiving proactive outreach from their healthcare providers, such as check-in or follow-up scheduling, while 43.1% said they had not been contacted (Table 3). Most respondents (73.7%) indicated that they know how and where to find trustworthy information about their condition and 23.6% of respondents reported having left a doctor’s appointment without a clear understanding of what to do next. [TABLE 3] Experiences with general treatment practice (n=1467) Survey item Yes (n, %) No (n, %) I don’t know (n, %) Before my most recent MS disease-related appointment (e.g., Neurologist, nurse, IV medication), I received a reminder (e.g., text message, email) about the appointment time 1067 (72.7) 288 (19.6) 112 (7.7) Before my most recent MS disease-related appointment (e.g., Neurologist, nurse, IV medication), I received instructions on how to prepare and/or what to expect from the appointment 787 (53.4) 570 (38.9) 113 (7.7) During the past year, my doctor or other care personnel have contacted me 805 (54.9) 633 (43.1) 29 (2.0) I know how and where I can access trustworthy information related to my care 1081 (73.7) 205 (14.0) 181 (12.3) During the past year, I have left the doctor’s appointment confused about what I should do next to take care of my health 346 (23.6) 1005 (68.5) 116 (7.9) During the past year, my life has included things that have made it more difficult for me to take care of my health 780 (53.2) 595 (40.5) 92 (6.3) During the past year, together with my doctor or other care personnel, I have created a plan that helps me cope with things that have made it more difficult for me to take care of my health 371 (25.3) 987 (67.3) 109 (7.4) Life circumstances in the past year made it difficult to take care of their health for 53.2% of respondents. However, 25.3% reported that they had worked with their doctor or other care personnel to develop a plan addressing these challenges, whereas 67.3% said no such plan was created. Sections 2 and 3: Integration of Specialized MS Care Having to repeat information already shared with the same or another provider was reported by 32.3% (Figure 1). Among the respondents, 72.1% indicated that their doctor listens to them, and 70.1% felt their doctor respected what they had to say. Sufficient appointment time was also reported by 70%. Only 16.8% of the respondents recalled being asked for suggestions on how to improve their health, and 16.9% said they were asked about support needs at home. In addition, 23.1% reported being proactively informed about resources such as peer support groups, physiotherapy, or counseling. Nonetheless, 65.2% of respondents agreed that their doctor was aware of the key elements of their care. Section 4: Integration Across Healthcare Providers and Sectors Figure 2 shows how four in ten respondents (40%) felt their next-of-kin were “never” sufficiently involved, and 24% responded “rarely.” Meanwhile, 23.1% reported that their care was well-coordinated between different service providers. Likewise, 23.4% reported their regional wellbeing service county provides them with suitable services. Patients also reported having to repeat information: 52.3% reported that they personally had to convey details to non-MS doctors. Only 9.3% reported feeling that in general their doctors communicate with each other about their care. 63.5% found their electronic health records easy to understand, and 71% believed them to be well up to date. Sections 5 and 6: Treatment Plans and Care Pathway Preferences 57.6% of respondents agreed that if needed, they have a low threshold for seeking care, with 50.9% reporting understanding their own role in their care (Figure 3). In contrast, 32.8% reported consistently knowing where their plan is located, 41.7% reported knowing what it includes and 28% reported being able to check the contents of their care plan independently. Among respondents, 86.4% considered automated reminders for upcoming tests or appointments important, while 71.9% considered reminders for missed contacts important. 83.4% reported that fast communication options, such as a nursing hotline or secure online messaging, are important to them, and 75.4% valued having a single primary contact person for their care. Regular outreach also matters, with 71.8% favoring periodic check-ins. 76.2% felt that formal goal setting is important to them, while 45.1% considered progress tracking of said goals to be important. Finally, 36.4 % viewed a visual map of the care pathway as important. Overall, Figure 4 shows patients' significant interest in practical communication supports (single point of contact, accessible personnel, reminders) and less enthusiasm for structured goal tracking. Discussion Main Findings To our knowledge, this study is one of the first large-scale surveys internationally and the first in Finland to specifically focus on care integration from the perspective of people with multiple sclerosis (pwMS). With 1,467 respondents (approximately 12% of all pwMS in the country), the sample is substantial. The female predominance (79.2% in our sample) aligns with MS epidemiology: MS is roughly 2–3 times more common in women (Walton et al., 2020). Most respondents were aged 45 to 64 years old, which is expected since the median age of diagnosis in Finland is around 34. Only 4.5% of participants were newly diagnosed in the past year, meaning the vast majority had longer experience navigating the healthcare system for MS and more advanced disease course. This indicates that our respondents could draw on considerable personal history with their care processes when evaluating integration. Overall, respondents reported high satisfaction with the care they receive (65% rated it good or excellent). This is encouraging and suggests that Finnish MS clinics and providers are meeting patients’ needs in many respects. However, the detailed questions uncovered multiple areas where the coordination and continuity of care could be improved. Key findings include: Patients report a lack of proactive follow-up, with no routine check-ins between scheduled visits. Many felt they had to initiate contact if they needed anything. This reactive approach might leave some issues unaddressed for too long. Perceived post-visit information gaps, with nearly one-quarter of patients reporting having left an appointment unsure of the next steps, highlighting a need for clearer communication follow-up plans at the end of visits. Patients feel that they frequently assume the role of messenger between different doctors. A large majority did not perceive that their various healthcare providers (neurologists, GPs, therapists, etc.) communicate with each other about the patient’s care. Few patients were asked about personal challenges during contacts (like difficulties at home) or were being involved in generating solutions for those challenges. Likewise, providers seldom solicited patient input on how to improve care or health. Family/caregiver inclusion is minimal despite many patients likely relying on family support, the healthcare system rarely involves or communicates with those caregivers as a part of the care team. Across all five areas, proactive follow-up, post-visit information, provider communication, holistic patient-centric care, and family inclusion, prior literature largely supports the experiences reported by our sample. These issues are not unique to one study or one country; they reflect broader challenges in managing complex chronic conditions like MS. Patients worldwide have voiced similar frustrations about lapses in follow-up and coordination, and researchers have documented tangible consequences (from patient anxiety to higher hospitalization rates) when care is fragmented or unresponsive (Joo, 2023; Sun et al., 2023). On the other hand, the literature also points to strategies that can mitigate these problems. Proactive, integrated care, exemplified by case management interventions, shared care plans, multidisciplinary teams, and inclusion of patients and families as active partners, tends to yield better satisfaction and in some cases better health outcomes (Leary et al., 2015). In contrast, not every intervention is uniformly successful. For example, simply giving a written care plan to the patient did not solely improve outcomes for chronic patients in a Finnish trial (Tusa et al., 2021), which suggests that improvements must be comprehensive and tailored rather than one-size-fits-all. The challenges reported by Finnish pwMS align closely with findings from other national and international MS surveys. For example, a recent large-scale study of 4,555 MS patients found that only 63.7% had ever discussed treatment goals with their neurologist, suggesting that patient involvement remains limited (Christ et al., 2023). Similarly, a survey of 300 pwMS found that, while patients were generally satisfied with their care, they expressed significant dissatisfaction with shared decision-making and the level of personal engagement in treatment planning (Al-Dossari et al., 2024). These results parallel our findings. Previous research has indicated that the vast majority of MS patients prefer a collaborative role in treatment decisions (Ubbink et al., 2022). PwMS in Germany reported feeling that their providers sometimes saw “just the disease” and not their personal life context, indicating a gap in holistic care. Patients in that study also noted deficits in the physician–patient relationship, implying they weren’t as engaged in dialogue or decision-making as they wished (Galushko et al., 2014). Indeed, across chronic illnesses, experts emphasize that care should encompass psychological support, lifestyle guidance, and social services alongside medical treatment (Harris et al., 2003). In the MS-specific context, recent reviews have stressed the importance of a multidisciplinary team, not only neurologists but also mental health professionals, physiotherapists, social workers, etc., to manage the full spectrum of the disease’s impact (Kraft & Berger, 2021; Savio et al., 2025). Similarly, one of these reviews highlighted that high-quality MS care requires active patient involvement: doctors should “create a dialog” with the patient about their preferences and engage them continuously in their care, rather than making decisions unilaterally (Kraft & Berger, 2021). The study results also point out that family members or caregivers are seldom included in the care process. Families and close caregivers often play a pivotal role in a patient’s day-to-day management of MS, helping with transportation, medications, or providing emotional support, yet healthcare systems do not always formally integrate them (Galushko et al., 2014). While there has been some shift to the contrary, the would be benefits are also not quite straightforward, with previous literature pointing out that an involved caregiver may be a strong positive influence but may also be a negative force in the pwMS’s life (Kesselring et al., 2022). For example, an overbearing spouse may have such an effect. Thus, while caregiver involvement could address some of the Finnish pwMS feelings of insufficient support and bring coordination benefits, any involvement should remain strictly at their own discretion. When to include and when not to include close caregivers should be further explored. Strengths and limitations This study’s strengths include its large national sample and multifaceted approach to care integration from the patient perspective of MS in Finland, which has been an understudied topic. By leveraging the Finnish Neuro Society’s membership, we achieved broad reach across regions. The response rate of 35.6% is very respectable for an online survey and provides a sizable absolute number of respondents, corresponding to roughly 12% of the whole Finnish MS population. We used a comprehensive instrument grounded in a validated survey (PPIC) and previous qualitative studies, and enriched by patient and provider input, enhancing content validity for the Finnish MS context. The structured approach allows for granular insights into specific integration domains. Moreover, conducting the study during a period of health system reform gives timely insight into integration challenges that reforms seek to address. Several limitations should be acknowledged. First, the questionnaire was distributed through a patient organization instead of care units, introducing possible response bias and self-selection bias, given that participants were members of the Finnish Neuro Society and may differ from the wider MS population. There was a high rate of disability and permanent pension, suggesting possible overrepresentation of progressive disease forms of MS, for which there are no highly effective disease-modifying therapies, which may be reflected in the results. The study’s cross-sectional design offers only a snapshot in time and limits any causal interpretation or observation of changing perceptions. It was conducted roughly one year into a significant healthcare reform, so attitudes might evolve as the new system matures. The study relies on self-reported perceptions. Patient impressions are vital but not independently verified. For instance, we do not know if providers truly communicated with each other, only that patient felt they did or did not. While developed carefully and validated by both experts and pilot respondents, the psychometric properties of the newly developed items remain to be established, and the findings should be seen as exploratory. Finally, the study is geographically limited to Finland, which may limit generalization. Implications for Policy and Practice The clear message that many pwMS feel left to coordinate their own care underscores the need for stronger coordination mechanisms. Three possible coordination mechanisms were identified that could help shift the coordination responsibility from the patient back towards the healthcare system: (1) assigning an MS nurse or care manager to each patient on regular follow-up, (2) providing a single point of contact, and (3) bridging communication between specialist and primary care services. The efficacy of these mechanisms should be assessed keeping in mind that patients themselves can indicate what they value and what works for them. Thus, while addressing these integration gaps it is pivotal to track patient satisfaction and care outcomes. Better inter-provider communication is equally vital. Patients frequently reported having to repeat information or serve as messengers among different healthcare professionals. Empowering patients by offering clearer visit summaries, personalized care plans, and explicit instructions on accessing their records could further reduce confusion. At the same time, many patients can benefit from including family or caregivers in their care. Consequently, providers could tell patients of the opportunity to invite them along for care visits. In addition, simple technological tools like automated reminders for appointments or lab renewals can promote a more proactive model of care and prevent oversights. Yet, true integration depends on the day-to-day processes that make care feel seamless to patients, beyond just organizational mergers. Routine monitoring of patient-reported integration measures, as well as immediate steps such as naming a care coordinator and holding multidisciplinary conferences for complex cases, can help embed genuine continuity into MS care. Patient organizations can also partner with clinics to improve education and ensure that all stakeholders, including family members, are appropriately involved. Future Research Future research could delve deeper into these data by examining subgroup differences, for instance, whether newly diagnosed individuals experience care integration differently than those with more experience with the diagnosis, or whether multimorbidity correlates with lower integration levels. Such analyses could highlight high-risk groups needing targeted support. A follow-up survey in a few years would also show whether integration perceptions improve as the current health reform matures, possibly attributing changes to specific reforms. Conducting research in a care unit, with objective evaluation of follow-up procedures at the same time as performing a patient questionnaire, could shed light on the gap between patient perceptions and objective metrics. Comparative studies between countries and health systems may also highlight relevant differences. Qualitative research is another priority, as interviews with patients and providers could provide insight on why gaps and perceptions thereof occur and how best to address them. Intervention studies testing new care coordinator roles or shared electronic care tools in specific regions would also help determine which strategies genuinely improve care continuity and patient outcomes. Additionally, applying the same focus to other chronic diseases in Finland would reveal whether issues identified in MS are systemic or unique to MS management. Additionally, while we have outlined an extensive agenda of development points, where patients report shortcomings, it is equally important to evaluate the potential cost implications of such measures and realistic implementation possibilities. While implementing new developments often incurs a direct price tag, the effects of such measures may or may not reduce long-term costs, which should be extensively evaluated. In conclusion, our findings indicate that Finnish pwMS, are generally satisfied with their treatment, but clearly see room for more seamless integration. Patients highlight the need for greater proactive follow-up, more robust communication and knowledge sharing between providers, so they are not forced to act as messengers, better awareness and involvement in care plans, and higher integration of family members into the care process. Declarations Funding This work was funded by the Finnish MS Foundation. Ethics Approval and Consent to Participate The study protocol was reviewed and approved by the Aalto University Ethical Review Board (Approval D/662/03.04/2022). Participation in the survey was voluntary. All participants were informed about the purpose of the study, data confidentiality, and their right to withdraw at any time before submitting the questionnaire. Participants were required to actively indicate their consent to participate by selecting before proceeding to the survey questions. No personally identifiable information was collected. Availability of data and materials The dataset generated and analyzed during the current study is not publicly available due to the sensitive nature of personal health information and the conditions of the ethics approval. De-identified data may be made available from the corresponding author upon reasonable request. Consent for publication Not applicable. Competing interests MV, AV, IS, LM, and PT declare no competing interests. SML declares lecture fees from Alexion, Argenx, Lundbeck, Merck, Novartis, Sanofi, Teva; congress and travel expenses from Merck, Novartis, UCB Pharma; and consultation fees from Argenx, Johnson&Johnson, Novartis, Sanofi, UCB Pharma. Authors' contributions Conceptualization: MV; Methodology: MV, IS, AV; Survey design: MV, IS, AV; Data curation: MV; Formal analysis: MV, IS, AV; Investigation: MV, IS, AV; Project administration: MV; Writing – original draft: MV; Writing – review & editing: MV, IS, AV, SML, LM, PT; Supervision: SML, LM, PT. Acknowledgements The authors gratefully acknowledge the Finnish Neuro Society for their collaboration and contributions to the research process and for supporting the dissemination of the findings presented in this manuscript. References Ala-Kauhaluoma, M., & Laurila, H. (2008). MS-tautia sairastavat suomalaiset-työssä selviytyminen ja kuntoutus . Suomen MS-liitto. Al-Dossari, D. S., Al-Zaagi, I. A., Salamma, M. A. B., Alghamdi, F. A., Althobaiti, A. H., Al-Harbi, A. B. D. A. bin A., Alshelali, A. R., Hassan, A. N., Ali, B. M., & Ali, S. (2024). Satisfaction of Patients with Multiple Sclerosis Towards the Provision of Healthcare Services at a Tertiary Care Setting in Saudi Arabia. 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Tynkkynen, L.-K., Paatela, S., Aalto, A.-M., Keskimäki, I., Nykänen, E., Peltola, M., Sinervo, T., Tammi, T., & Viita-aho, M. (2025). Tilannekuvia hyvinvointialueilta: Muutokset palvelujärjestelmässä sote-uudistuksen alkuvuosina . Ubbink, D. T., Damman, O. C., & de Jong, B. A. (2022). Shared decision-making in patients with multiple sclerosis. Frontiers in Neurology , 13 , 1063904. Vehkamäki, A., Vesinurm, M., Helminen, R.-R., Halminen, O., & Lillrank, P. (2024). Causes of care discontinuity in chronic outpatient care: A mixed method case study. Health Services Management Research , 09514848241307183. Vesinurm, M., Maunula, A., Olli, P., Lillrank, P., Ijäs, P., Torkki, P., Mäkitie, L., & Laakso, S. M. (2024). Effects of a Digital Care Pathway for Multiple Sclerosis: Observational Study. JMIR Human Factors , 11 (1), e51872. https://doi.org/10.2196/51872 Vesinurm, M., Sylgren, I., Bengts, A., Torkki, P., & Lillrank, P. (2024). Concept analysis of patient journey disruptions: The obstacle of integrated care. Journal of Integrated Care , 32 (5), 37–58. https://doi.org/10.1108/JICA-08-2023-0060 Vickrey, B., Shatin, D., Wolf, S., Myers, L., Belin, T., Hanson, R., Shapiro, M., Beckstrand, M., Edmonds, Z., & Delrahim, S. (2000). Management of multiple sclerosis across managed care and fee-for-service systems. Neurology , 55 (9), 1341–1349. Von Elm, E., Altman, D. G., Egger, M., Pocock, S. J., Gøtzsche, P. C., & Vandenbroucke, J. P. (2007). The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: Guidelines for reporting observational studies. The Lancet , 370 (9596), 1453–1457. Walton, C., King, R., Rechtman, L., Kaye, W., Leray, E., Marrie, R. A., Robertson, N., La Rocca, N., Uitdehaag, B., & van Der Mei, I. (2020). Rising prevalence of multiple sclerosis worldwide: Insights from the Atlas of MS. Multiple Sclerosis Journal , 26 (14), 1816–1821. https://doi.org/10.1177/1352458520970841 Additional Declarations Competing interest reported. MV, AV, IS, LM, and PT declare no competing interests. SML declares lecture fees from Alexion, Argenx, Lundbeck, Merck, Novartis, Sanofi, Teva; congress and travel expenses from Merck, Novartis, UCB Pharma; and consultation fees from Argenx, Johnson&Johnson, Novartis, Sanofi, UCB Pharma. Supplementary Files 20250818MSSurveyS1.xlsx Cite Share Download PDF Status: Under Review Version 1 posted Reviews received at journal 23 Sep, 2025 Reviewers agreed at journal 22 Sep, 2025 Reviewers invited by journal 15 Sep, 2025 Editor assigned by journal 10 Sep, 2025 Editor invited by journal 20 Aug, 2025 Submission checks completed at journal 18 Aug, 2025 First submitted to journal 18 Aug, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-7364638","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":518882395,"identity":"1593f95e-94eb-43b4-b341-8a3bdb35e70a","order_by":0,"name":"Märt Vesinurm","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA40lEQVRIiWNgGAWjYDADNjBZwcDAB6YN8CpmbEBoOQNkgFhniNECYbbBtOBRr9t+9vkDxjYbez7pHrNPN+fZybPJNx9gOFCAW4vZmXTDBsa2tMQ2mTPGs3O3JRu2sbElMBzA4zCzA2lAh505nMAmkWPMnLuNmbGNjceA+QM+LeefgbT8t4domVNvD9KC35YbIFsqDjC2gbU0HE4kQsszxhkJFcmJbRJpxcw5x44nt7GlJRzAq+V8GsOHDwZ29vIzkjcz59RU2/YzHz744MAf3FrAIAFd4AABDaNgFIyCUTAKCAAA0+pKBYqM3uQAAAAASUVORK5CYII=","orcid":"","institution":"Aalto University School of Science","correspondingAuthor":true,"prefix":"","firstName":"Märt","middleName":"","lastName":"Vesinurm","suffix":""},{"id":518882396,"identity":"cb9307ec-36c5-44e8-bdcd-e2df74ff88a3","order_by":1,"name":"Inka Sylgren","email":"","orcid":"","institution":"University of Helsinki Faculty of Medicine","correspondingAuthor":false,"prefix":"","firstName":"Inka","middleName":"","lastName":"Sylgren","suffix":""},{"id":518882397,"identity":"4c5ef99a-889e-4a99-b679-8cfefe7e2af6","order_by":2,"name":"Anu Vehkamäki","email":"","orcid":"","institution":"Aalto University School of Science","correspondingAuthor":false,"prefix":"","firstName":"Anu","middleName":"","lastName":"Vehkamäki","suffix":""},{"id":518882398,"identity":"abf2f970-b1b4-448f-ae13-36bdefd53317","order_by":3,"name":"Sini M. 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The question used the phrasing “Based on your experiences with MS treatment over the past year, please respond to the following statements…”. Items are translated into English and abbreviated (see annex 1 for full translations and original questions). The five response options ranged from “Never” to “Always”, with an additional option for ‘I don’t know’ and the figure displays the percentage of respondents for each. The corresponding number of ‘I don’t know’ responses for each item is shown in the right-hand column. Items with flipped scales for more accurate representation are marked with an asterix.\u003c/em\u003e\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-7364638/v1/8d9234c6061adc9925672d5d.png"},{"id":92007955,"identity":"8d53a7a6-c696-41d5-99dd-75c2b37b7aae","added_by":"auto","created_at":"2025-09-23 15:26:40","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":127960,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eRespondents’ experiences of care integration. The question used the phrasing “Based on your experiences of all your healthcare interactions, please respond to the following statements…”. Items are translated into English and abbreviated (see annex 1 \u0026nbsp;for full translations and original questions). The five response options ranged from “Never” to “Always”, with an additional option for ‘I don’t know’ and the figure displays the percentage of respondents for each. The corresponding number of ‘I don’t know’ responses for each item is shown in the right-hand column.\u003c/em\u003e\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-7364638/v1/a6f7a0c2d562231fe7728d9a.png"},{"id":92009225,"identity":"f8211dcd-3dc0-484e-bca7-b5bbe6a0b926","added_by":"auto","created_at":"2025-09-23 15:34:40","extension":"png","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":100905,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eRespondents’ perceptions of on care plans. The question used the phrasing “Assess the accuracy following statements…”. Items are abbreviated and translated into English here (see supplement for full translations and original questions). The five response options ranged from “Completely agree” to “Completely disagree”, with an additional option for ‘I don’t know’ and the figure displays the percentage of respondents for each. The corresponding number of ‘I don’t know’ responses for each item is shown in the right-hand column.\u003c/em\u003e\u003c/p\u003e","description":"","filename":"3.png","url":"https://assets-eu.researchsquare.com/files/rs-7364638/v1/cfaf5975f44be36e8e42a180.png"},{"id":92007962,"identity":"0b4bd40d-ce8c-45a3-b325-dec61b9c4e4a","added_by":"auto","created_at":"2025-09-23 15:26:40","extension":"png","order_by":4,"title":"Figure 4","display":"","copyAsset":false,"role":"figure","size":114321,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003eRespondents’ perceived importance of care pathway elements. The question used the phrasing “Assess how important the following statements are to you…”. Items are abbreviated and translated into English here (see supplement for full translations and original questions). The five response options ranged from “Not at all important” to “Very important”, with an additional option for ‘I don’t know’ and the figure displays the percentage of respondents for each. The corresponding number of ‘I don’t know’ responses for each item is shown in the right-hand column.\u003c/em\u003e\u003c/p\u003e","description":"","filename":"4.png","url":"https://assets-eu.researchsquare.com/files/rs-7364638/v1/a9966d3b93c07ca5d0ac2eb8.png"},{"id":92011970,"identity":"a3dbaa8a-e8f3-486a-b753-a63491c23d01","added_by":"auto","created_at":"2025-09-23 15:50:41","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1547005,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7364638/v1/a8f8a218-7064-4e9a-a58d-7adfd9d38e74.pdf"},{"id":92009230,"identity":"5cd1489f-c1e4-4b6d-a951-cdeae90012b3","added_by":"auto","created_at":"2025-09-23 15:34:40","extension":"xlsx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":998482,"visible":true,"origin":"","legend":"","description":"","filename":"20250818MSSurveyS1.xlsx","url":"https://assets-eu.researchsquare.com/files/rs-7364638/v1/4927399faefb8d9f5e37b990.xlsx"}],"financialInterests":"Competing interest reported. MV, AV, IS, LM, and PT declare no competing interests. SML declares lecture fees from Alexion, Argenx, Lundbeck, Merck, Novartis, Sanofi, Teva; congress and travel expenses from Merck, Novartis, UCB Pharma; and consultation fees from Argenx, Johnson\u0026Johnson, Novartis, Sanofi, UCB Pharma.","formattedTitle":"Patients’ Perceptions of Care Integration in Multiple Sclerosis Care in Finland: A Cross- Sectional National Survey","fulltext":[{"header":"Introduction","content":"\u003cp\u003eMultiple sclerosis (MS) is a chronic inflammatory disorder of the central nervous system that affects over 12,000 people in Finland (Ala-Kauhaluoma \u0026amp; Laurila, 2008), with a global prevalence of 35.9 and an incidence of 2.1 per 100,000 persons/year (Walton et al., 2020). Finland is an especially high-risk region for MS with reported prevalence of 241.4 and incidence of 8.6 per 100,000 persons/year (Maunula et al., 2025). MS is among the leading causes of disability in working-age adults and ranks as the third most common cause of disability pensions in Finland (Ala-Kauhaluoma \u0026amp; Laurila, 2008). The associated socioeconomic impact is substantial, with an average annual cost of approximately \u0026euro;50,000 per patient (Ruutiainen et al., 2016). Given the cost and complexity of MS management, long-term, multidisciplinary follow-up by neurologists, rehabilitation specialists, nurses, general practitioners and other providers is crucial (Harris et al., 2003). Consequently, integrating these services is vital to prevent fragmented care.\u003c/p\u003e\u003cp\u003eIdeally, an integrated and multidisciplinary approach should counter fragmentation by bringing specialists together to provide continuous, comprehensive care (Forbes et al., 2007; Harris et al., 2003; Vickrey et al., 2000)​, and improve outcomes (Savio et al., 2025). However, despite this recognized need, people with MS (pwMS) continue to report navigating fragmented healthcare systems; they struggle to find the support they need across multiple providers, reporting inadequate information exchange and little opportunity to voice their concerns during doctors\u0026rsquo; appointments (Beczek et al., 2025). These shortfalls can leave patients feeling unheard and less engaged in their care. In response, previous literature has called for better patient\u0026ndash;provider communication and shared decision-making in MS management (P\u0026eacute;loquin et al., 2021)​. Improved dialogue not only helps align treatment with patient needs but also fosters trust and adherence, which are crucial for long-term disease management (Alroughani, 2015)​.\u003c/p\u003e\u003cp\u003eA strong support network, including family, peers, and community resources, is also a key pillar of integrated MS care. Studies indicate that lower social support is associated with higher levels of fatigue and depression, whereas greater support correlates with better quality of life (Eizaguirre et al., 2023). Conversely, according to the same study, patients who feel well-supported tend to experience less anxiety and report higher health-related quality of life. Therefore, a holistic, multidisciplinary approach that facilitates the integration of support groups, counseling, and community services may improve patient well-being and bridge gaps that medical care alone cannot fill.\u003c/p\u003e\u003cp\u003eDespite these well-documented challenges, research on integrated MS care remains limited, particularly in the Finnish context. While international guidelines promote interdisciplinary services to address MS\u0026rsquo;s multifaceted needs (Harris et al., 2003), there is a notable gap in evidence regarding how effectively these recommendations translate into the patient\u0026rsquo;s experience of everyday practice (Jansen et al., 2007)​. Moreover, few studies capture patients\u0026rsquo; actual experiences with care integration, an omission that leaves clinicians and policymakers uncertain about where the most pressing improvements are needed. In fact, pwMS across various countries continue to report unmet needs and dissatisfaction with certain aspects of care​ (P\u0026eacute;trin et al., 2020), suggesting that real-world implementation often falls short of guideline ideals. Consequently, there is a pressing need to explore patient perspectives more thoroughly to both pinpoint the specific gaps in current service provision and to inform actionable strategies for enhancing integrated MS care.\u003c/p\u003e\u003cp\u003eTo address these gaps, this study investigated Finnish MS patients\u0026rsquo; perceptions of how well their care is integrated. To achieve this, we conducted a large-scale national survey to capture patient experiences across multiple dimensions of integrated care, along with respondents\u0026rsquo; preferences for potential improvements. Specifically, we addressed the following research questions:\u003c/p\u003e\u003cp\u003e\u003col\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eHow do pwMS in Finland perceive the integration of care across different healthcare providers and services?\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eWhat gaps in integration can be identified based on pwMS\u0026rsquo;s perceptions?\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eWhich elements of integrated healthcare do pwMS value most?\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003c/ol\u003e\u003c/p\u003e\u003cp\u003eThis study\u0026rsquo;s contributions are threefold. First, this is the first study to quantitatively examine pwMS\u0026rsquo; perceptions of care integration at a national level in Finland, with a target population covering roughly one-third of the country\u0026rsquo;s MS population. Second, the findings highlight concrete, patient-prioritized perceived integration gaps such as low proactive follow-up, minimal cross-provider communication, and limited next-of-kin inclusion. Third, the study offers timely, policy-relevant evidence for the Finnish Well-being Service Counties, highlighting which integration levers such as single point contacts, clear care plans, and automate reminders, patients value the most, informing prioritization efforts in implementation. Collectively, the work complements earlier studies from other countries, fills a national evidence gap, and provides a survey instrument with a baseline against which the impact of the ongoing reform can be tracked.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eWe carried out a cross-sectional national survey of pwMS in Finland. The study was conducted in collaboration with the Finnish Neuro Society (Neuroliitto ry), a non-profit patient organization that supports individuals with MS and rare neurological conditions. As of February 2024, the Finnish Neuro Society had 4,122 members who identified themselves as having MS, representing roughly one-third of the estimated MS population in Finland. These 4,122 individuals constituted the target sample for the survey. Inclusion criteria were broad: adults (age \u0026ge;18) with self-reported MS. Membership in the Neuro Society was used as a proxy for reaching a large national cohort of pwMS; no additional exclusion criteria were applied.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResearch Context\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn Finland, the context of MS care is characterized by a publicly funded system with specialized MS clinics (Vesinurm, Maunula, et al., 2024). MS diagnoses and initial treatments are almost exclusively handled in public hospitals by neurologists. Follow-up care is typically provided in neurology outpatient clinics (secondary or tertiary care), while a minority of stable patients or those with primary progressive MS (PPMS) without active treatment may be managed in primary care. A small segment of patients chooses private neurologists for follow-up. Diagnostic workups include neurological exams, MRI imaging, and cerebrospinal fluid analysis. After diagnosis, patients commence disease-modifying therapies (DMT) and require regular monitoring (lab tests, MRI at 6 months, and periodic neurologist visits every 6\u0026ndash;12 months). Nurse consultations are usually offered shortly after diagnosis for education and psychosocial support, and many hospitals host informational sessions for newly diagnosed patients which also facilitate peer support. In some regions, patients can contact MS nurses between scheduled follow-ups for concerns or symptom flare-ups, and physician appointments can be brought forward if needed. If a patient has no active treatment, they may be discharged to primary care for monitoring.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eA major health system reform in Finland took effect at the start of 2023. This reform merged over 300 municipal healthcare providers into 22 Well-being Service Counties, integrating primary, secondary, and tertiary health services under unified regional administrations (Tynkkynen et al., 2025). One explicit goal of the reform is to improve service integration across the different levels of care, ensuring smoother coordination between e.g. health centers and hospitals. With the reform ongoing, it is timely to assess the current state of care integration from the patient\u0026rsquo;s viewpoint and identify areas most in need of improvement.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eSurvey Instrument\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe survey questionnaire consisted of 101 items designed to capture respondents\u0026rsquo; experiences with integrated care and care coordination, as well as background information and service utilization (Appendix 1). The content was organized into six sections as presented in Table 1.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e[TABLE 1] Summary of the Survey Questionnaire Sections, Their Content, and Origin.\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 160px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eSurvey section\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 199px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eSection content\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 96px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eNumber of items\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 187px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eOrigin\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e\u003cem\u003e1. General experiences of MS care practices\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003e\u003cem\u003eQuestions on routine care practices (e.g. appointment reminders, preparatory instructions, follow-up contacts, clarity of next steps). Mostly yes/no and \u0026ldquo;I don\u0026rsquo;t know\u0026rdquo; responses.\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 96px;\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 187px;\"\u003e\n \u003cp\u003e\u003cem\u003eAdapted from the Patient Perceptions of Integrated Care (PPIC) survey, with wording tailored to MS and Finnish context.\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e\u003cem\u003e2. Integration of care in MS treatment (past year), Part 1\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003e\u003cem\u003eStatements about coordination within MS-related care over the last 12 months, focusing on provider communication and care processes. Rated on a 5-point frequency scale.\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 96px;\"\u003e\n \u003cp\u003e23\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 187px;\"\u003e\n \u003cp\u003e\u003cem\u003eDerived from PPIC (modified to reflect Finnish MS care setting).\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e\u003cem\u003e3. Integration of care in MS treatment (past year), Part 2\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003e\u003cem\u003eContinuation of Part 1, further detailing MS care coordination in the previous year (e.g. communication among MS providers, patient involvement). Rated on a 5-point frequency scale.\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 96px;\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 187px;\"\u003e\n \u003cp\u003e\u003cem\u003eDerived from PPIC (modified to reflect Finnish MS care setting).\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e\u003cem\u003e4. Integration of care across services (general experience)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003e\u003cem\u003eBroader coordination across the healthcare system (not only MS-related), including family inclusion, cross-sector coordination, and medical record quality. Rated on a 5-point frequency scale.\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 96px;\"\u003e\n \u003cp\u003e15\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 187px;\"\u003e\n \u003cp\u003e\u003cem\u003eCustom items informed by two preliminary studies (Norway workshops/interviews and Finland focus groups/interviews).\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e\u003cem\u003e5. Treatment plan and information flow\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003e\u003cem\u003eStatements about knowledge and usage of one\u0026rsquo;s treatment plan, receiving and understanding test results, and care coordination details. Rated on a 5-point agreement scale.\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 96px;\"\u003e\n \u003cp\u003e9\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 187px;\"\u003e\n \u003cp\u003e\u003cem\u003eCustom items informed by preliminary studies (Norway and Finland).\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e\u003cem\u003e6. Preferences for care pathway elements\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003e\u003cem\u003eRespondents\u0026rsquo; views on the importance of potential care improvements (e.g. single point of contact, automated reminders, shared goal-setting). Rated on a 5-point importance scale.\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 96px;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 187px;\"\u003e\n \u003cp\u003e\u003cem\u003eCustom items informed by preliminary studies (Norway and Finland).\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e\u003cem\u003e7. Background information and sociodemographics\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003e\u003cem\u003eQuestions related to the respondent and their history\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 96px;\"\u003e\n \u003cp\u003e22\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 187px;\"\u003e\n \u003cp\u003e\u003cem\u003eRequired background information\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eThe survey instrument has not been previously published elsewhere. All items, their English translations, and abridged versions are reported in the supplement (Annex 1). The survey instrument was developed by adapting existing validated measures and incorporating new items from prior qualitative work. Sections 1, 2 and 3 of the survey instrument were derived by modifying the Patient Perceptions of Integrated Care (PPIC) survey, a validated instrument designed to measure patients\u0026rsquo; experience of care integration across multiple domains (Singer et al., 2013). The original PPIC, developed in the United States, encompasses domains such as care coordination, access to information, and team communication. Following recommended practice, we translated the PPIC items to Finnish and then the authors tailored the items to the Finnish MS context. For example, relevant items were modified to focus on MS care specifically rather than any conditions the patient may have been diagnosed with. Previous studies have found the PPIC survey can be adapted to different healthcare contexts with expert input while retaining its validity (Tietschert et al., 2018).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSections 4, 5, and 6 included custom items informed by two preliminary studies. First, a pre-study in Norway (May\u0026ndash;June 2022) involved three workshops and six interviews with cancer patients and their next-of-kin (n=41), using the critical incident technique to identify coordination challenges in chronic care processes (Halvorsrud et al., 2025). Findings from the patient-reported critical incidents were formulated into survey questions that we adapted for the context of MS care. Second, a pre-study in Finland (2021\u0026ndash;2022) involved focus groups and interviews with healthcare professionals (HCPs) in home care and private chronic care services\u0026nbsp;(Vehkam\u0026auml;ki et al., 2024; Vesinurm, Sylgren, et al., 2024). This provided the perspective of providers on common care integration problems and potential solutions. Results from these HCP interviews (n=10) and focus groups (n=2 groups, total n=16) were developed into items in sections 5 and 6.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTo improve validity, the draft instrument underwent expert review and piloting. Three researchers with expertise in health services and three representatives from the Finnish Neuro Society reviewed the content for relevance and clarity. We then conducted cognitive pretesting with three pwMS who completed the survey in the presence of a researcher, verbalizing their understanding of each question and any confusion. Minor wording adjustments were made based on this feedback. Finally, a pilot survey was sent to 10 volunteers with MS from the Finnish Neuro Society; they filled the survey independently and provided open-ended feedback. The instrument was revised for clarity and length before full deployment.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData Collection\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe final survey was administered online using the Webropol platform. An email containing a survey link, an invitation letter, and a description of the research project was sent by the Finnish Neuro Society to all 4,122 eligible members on February 26, 2024. The survey remained open for responses until March 26, 2024 (one month). Two reminder emails were sent (approximately 2 weeks and 3 weeks after launch) to boost response rate. Participation was voluntary and all responses were recorded anonymously.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData Analysis\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe performed a descriptive analysis of the survey data. Categorical survey results were summarized as frequencies and percentages of respondents. All percentages were generally calculated out of the number of respondents who answered a given question. We present several key survey results in tabular form. On a 5-point scale, \u0026lsquo;Always\u0026rsquo; and \u0026lsquo;Often\u0026rsquo;, \u0026lsquo;Important\u0026rsquo; and \u0026lsquo;Very Important\u0026rsquo;, and \u0026lsquo;Completely agree\u0026rsquo; and \u0026lsquo;Agree\u0026rsquo; were classified as favorable responses, while \u0026lsquo;Never\u0026rsquo;, and \u0026lsquo;Rarely\u0026rsquo;, \u0026lsquo;Not Important at all\u0026rsquo; and \u0026lsquo;Not important\u0026rsquo;, \u0026lsquo;Completely disagree\u0026rsquo; and \u0026lsquo;Disagree\u0026rsquo; were classified as non-favorable responses. The midpoint of the scales; \u0026lsquo;Sometimes\u0026rsquo;, \u0026lsquo;Neither agree nor disagree\u0026rsquo;, and \u0026lsquo;Neutral\u0026rsquo; were treated as a neutral response. No imputation was made for missing data. For clarity of reporting, the 5-point scale was flipped for a few individual items to better align the responses with other items. All such changes are reported alongside the results.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eBecause the aim was primarily exploratory and descriptive, we did not perform comparative subgroup analyses or inferential statistics in this report. Results are reported following the STROBE cross-sectional reporting guidelines (Von Elm et al., 2007).\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003e\u003cstrong\u003e\u003cem\u003eRespondent characteristics\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eOf the 4,122 invitations, the survey was opened by 3651 (88.6%) of the respondents, with 2032 (49.3%) having started responding, and 1,467 yielded complete responses, corresponding to a 35.6% response rate. This sample represents approximately 12% of Finland\u0026apos;s estimated pwMS population. Most respondents were female (79.2%), and the median age group was 45\u0026ndash;54 years (Table 2). Only 6.2% were under the age of 35. Most respondents (70.9%) lived in multi-person households (\u0026ge;2 people), and 27.1% had at least one child under the age of 18 living in the same household. Educational attainment was diverse: 53.7% had a secondary school or lower education, while 44.8% held a higher education degree (bachelor\u0026rsquo;s or above). Nearly half (47.7%) of participants were retired (including disability pension), consistent with the disease\u0026rsquo;s impact on work ability; 31.5% were employed full-time and 14.2% part-time, with a small number of students and unemployed individuals. Finnish was the first language for 95.3% of respondents. The primary care provider was a secondary or tertiary clinic for 77.6%, primary healthcare for 13.9%, and a private provider for 2.9%.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e[TABLE 2]\u0026nbsp;\u003c/em\u003e\u003cem\u003eRespondent characteristics (n=1467)\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"506\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eCharacteristic\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 142px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eRespondents, n (%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eGender (n=1463)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e1162 (79.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e298 (20.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAge (years) (n=1467)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e18-24\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e5 (0.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e25-34\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e87 (5.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e35-44\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e318 (21.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e45-54\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e457 (31.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e55-64\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e407 (27.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e65-74\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e168 (11.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e75 or older\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e25 (1.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eEducation (n=1453)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003ePrimary school\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e59 (4.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eSecondary school\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e413 (28.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eBachelor\u0026rsquo;s degree\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e325 (22.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eMaster\u0026rsquo;s degree\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e294 (20.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eDoctoral degree\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e38 (2.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eOther\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e324 (28.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSize of Household (n=1457)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e1 (I live alone)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e332 (22.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e706 (48.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e191 (13.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e178 (12.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e5 or more\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e60 (4.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNumber of underaged members in the household (n=1467)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e1070 (72.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e193 (13.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e158 (10.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e32 (2.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e4 or more\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e14 (0.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eEmployment status (n=1466)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eFull-time\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e462 (31.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003ePart-time\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e209 (14.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eStudent\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e13 (0.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eRetired (inc. disability retirement)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e700 (47.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eUnemployed\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e33 (2.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eOther\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e49 (33.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eFirst language (n=1465)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eFinnish\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e1398 (95.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eSwedish\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e57 (3.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eOther\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e10 (0.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eHas one or more additional diagnoses that require regular doctor appointments (n=1404)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e611 (41.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e793 (54.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eYear of MS diagnosis (n=1464)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eMean (sd)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e2009 (10.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eMedian (IQR)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e2011 (2002\u0026ndash;2018)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e\u003cstrong\u003ePrimary care provider for MS (n=1384)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003ePrimary healthcare (e.g., health center)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e204 (13.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eSecondary or tertiary healthcare (e.g., neurological clinic)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e1138 (77.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003ePrivate provider (e.g., private neurologist)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e42 (2.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eDisease status during the last year (multiple selections possible), (n=1586)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eNewly diagnosed MS\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e66 (4.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eMS controlled, no significant functional disabilities\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e553 (37.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eMS controlled, functional disabilities\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e809 (55.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eMS not in control (e.g., Flare-up occurred)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e128 (8.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSelf-reported health status (n=1458)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eExcellent\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e61 (4.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eGood\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e417 (28.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eSatisfactory\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e506 (34.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eFair\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e362 (24.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003ePoor\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e112 (7.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSelf-reported satisfaction with care (n=1408)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eExcellent\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e224 (15.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eGood\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e724 (49.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eSatisfactory\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e248 (16.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003eFair\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e133 (9.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 364px;\"\u003e\n \u003cp\u003ePoor\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 142px;\"\u003e\n \u003cp\u003e79 (5.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 506px;\"\u003e\n \u003cp\u003e*Education \u0026ldquo;Other\u0026rdquo; includes unspecified diplomas or ongoing studies. Employment \u0026ldquo;Other\u0026rdquo; includes e.g. homemakers. \u003cem\u003ePrimary MS care provider\u003c/em\u003e percentages are estimates among those who answered (some respondents did not know or have an active provider). \u003cem\u003eDisease status\u003c/em\u003e categories were not mutually exclusive; percentages are of total respondents (n=1467).\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eOver two-fifths of respondents (41.6%) reported having one or more additional chronic conditions (multimorbidity) that require regular doctor\u0026rsquo;s appointments. The course of the disease among respondents varied: 4.5% identified as newly diagnosed (within that year), 37.7% said they experienced MS with no significant disabilities, 55.1% had some functional disabilities, and 8.7% experienced an uncontrolled course or a relapse in the past year. These categories were not mutually exclusive, for example, some newly diagnosed patients also had a relapse. The mean year of diagnosis was 2009 (SD \u0026plusmn;10.4 years) and the median was 2011 (IQR 2002-2018), implying that most respondents had been living with MS for around 10\u0026ndash;15 years.\u003c/p\u003e\n\u003cp\u003eMost respondents perceived their overall health status as modest. Regarding current general health status, 32.6% responded \u0026lsquo;Excellent\u0026rsquo; or \u0026lsquo;Good\u0026rsquo;, whereas the majority of 59.2% rated it as \u0026lsquo;Satisfactory\u0026rsquo; or \u0026lsquo;Fair\u0026rsquo; and 7.6% as \u0026lsquo;Poor\u0026rsquo;. In contrast, satisfaction with healthcare providers was markedly higher: 15.3% responded \u0026lsquo;Excellent\u0026rsquo; and 49.3% \u0026lsquo;Good\u0026rsquo; (total 64.6% positive), with 16.9% Satisfactory and only 14.5% \u0026lsquo;Fair\u0026rsquo; or \u0026lsquo;Bad\u0026rsquo;.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eSection 1: General Treatment Practices\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eIn the past year, 54.9% of respondents reported receiving proactive outreach from their healthcare providers, such as check-in or follow-up scheduling, while 43.1% said they had not been contacted (Table 3). Most respondents (73.7%) indicated that they know how and where to find trustworthy information about their condition and 23.6% of respondents reported having left a doctor\u0026rsquo;s appointment without a clear understanding of what to do next.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e[TABLE 3] Experiences with general treatment practice\u0026nbsp;\u003c/em\u003e\u003cem\u003e(n=1467)\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"645\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 380px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSurvey item\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eYes (n, %)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNo (n, %)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eI don\u0026rsquo;t know (n, %)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 380px;\"\u003e\n \u003cp\u003e\u003cem\u003eBefore my most recent MS disease-related appointment (e.g., Neurologist, nurse, IV medication), I received a reminder (e.g., text message, email) about the appointment time\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e1067 (72.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e288 (19.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e112 (7.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 380px;\"\u003e\n \u003cp\u003e\u003cem\u003eBefore my most recent MS disease-related appointment (e.g., Neurologist, nurse, IV medication), I received instructions on how to prepare and/or what to expect from the appointment\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e787 (53.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e570 (38.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e113 (7.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 380px;\"\u003e\n \u003cp\u003e\u003cem\u003eDuring the past year, my doctor or other care personnel have contacted me\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e805 (54.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e633 (43.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e29 (2.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 380px;\"\u003e\n \u003cp\u003e\u003cem\u003eI know how and where I can access trustworthy information related to my care\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e1081 (73.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e205 (14.0)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e181 (12.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 380px;\"\u003e\n \u003cp\u003e\u003cem\u003eDuring the past year, I have left the doctor\u0026rsquo;s appointment confused about what I should do next to take care of my health\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e346 (23.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e1005 (68.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e116 (7.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 380px;\"\u003e\n \u003cp\u003e\u003cem\u003eDuring the past year, my life has included things that have made it more difficult for me to take care of my health\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e780 (53.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e595 (40.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e92 (6.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 380px;\"\u003e\n \u003cp\u003e\u003cem\u003eDuring the past year, together with my doctor or other care personnel, I have created a plan that helps me cope with things that have made it more difficult for me to take care of my health\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e371 (25.3)\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e987 (67.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 85px;\"\u003e\n \u003cp\u003e109 (7.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eLife circumstances in the past year made it difficult to take care of their health for 53.2% of respondents. However, 25.3% reported that they had worked with their doctor or other care personnel to develop a plan addressing these challenges, whereas 67.3% said no such plan was created.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eSections 2 and 3: Integration of Specialized MS Care\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eHaving to repeat information already shared with the same or another provider was reported by 32.3% (Figure 1). Among the respondents, 72.1% indicated that their doctor listens to them, and 70.1% felt their doctor respected what they had to say. Sufficient appointment time was also reported by 70%. Only 16.8% of the respondents recalled being asked for suggestions on how to improve their health, and 16.9% said they were asked about support needs at home. In addition, 23.1% reported being proactively informed about resources such as peer support groups, physiotherapy, or counseling. Nonetheless, 65.2% of respondents agreed that their doctor was aware of the key elements of their care.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eSection 4: Integration Across Healthcare Providers and Sectors\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFigure 2 shows how four in ten respondents (40%) felt their next-of-kin were \u0026ldquo;never\u0026rdquo; sufficiently involved, and 24% responded \u0026ldquo;rarely.\u0026rdquo; Meanwhile, 23.1% reported that their care was well-coordinated between different service providers. Likewise, 23.4% reported their regional wellbeing service county provides them with suitable services.\u003c/p\u003e\n\u003cp\u003ePatients also reported having to repeat information: 52.3% reported that they personally had to convey details to non-MS doctors. Only 9.3% reported feeling that in general their doctors communicate with each other about their care. 63.5% found their electronic health records easy to understand, and 71% believed them to be well up to date.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eSections 5 and 6: Treatment Plans and Care Pathway Preferences\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e57.6% of respondents agreed that if needed, they have a low threshold for seeking care, with 50.9% reporting understanding their own role in their care (Figure 3). In contrast, 32.8% reported consistently knowing where their plan is located, 41.7% reported knowing what it includes and 28% reported being able to check the contents of their care plan independently.\u003c/p\u003e\n\u003cp\u003eAmong respondents, 86.4% considered automated reminders for upcoming tests or appointments important, while 71.9% considered reminders for missed contacts important. 83.4% reported that fast communication options, such as a nursing hotline or secure online messaging, are important to them, and 75.4% valued having a single primary contact person for their care. Regular outreach also matters, with 71.8% favoring periodic check-ins. 76.2% felt that formal goal setting is important to them, while 45.1% considered progress tracking of said goals to be important. Finally, 36.4 % viewed a visual map of the care pathway as important.\u003c/p\u003e\n\u003cp\u003eOverall, Figure 4 shows patients\u0026apos; significant interest in practical communication supports (single point of contact, accessible personnel, reminders) and less enthusiasm for structured goal tracking.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cdiv id=\"Sec16\" class=\"Section2\"\u003e\u003ch2\u003eMain Findings\u003c/h2\u003e\u003cp\u003eTo our knowledge, this study is one of the first large-scale surveys internationally and the first in Finland to specifically focus on care integration from the perspective of people with multiple sclerosis (pwMS). With 1,467 respondents (approximately 12% of all pwMS in the country), the sample is substantial. The female predominance (79.2% in our sample) aligns with MS epidemiology: MS is roughly 2\u0026ndash;3 times more common in women (Walton et al., 2020). Most respondents were aged 45 to 64 years old, which is expected since the median age of diagnosis in Finland is around 34. Only 4.5% of participants were newly diagnosed in the past year, meaning the vast majority had longer experience navigating the healthcare system for MS and more advanced disease course. This indicates that our respondents could draw on considerable personal history with their care processes when evaluating integration.\u003c/p\u003e\u003cp\u003eOverall, respondents reported high satisfaction with the care they receive (65% rated it good or excellent). This is encouraging and suggests that Finnish MS clinics and providers are meeting patients\u0026rsquo; needs in many respects. However, the detailed questions uncovered multiple areas where the coordination and continuity of care could be improved. Key findings include:\u003c/p\u003e\u003cp\u003e\u003cul\u003e\u003cli\u003e\u003cp\u003ePatients report a lack of proactive follow-up, with no routine check-ins between scheduled visits. Many felt they had to initiate contact if they needed anything. This reactive approach might leave some issues unaddressed for too long.\u003c/p\u003e\u003c/li\u003e\u003cli\u003e\u003cp\u003ePerceived post-visit information gaps, with nearly one-quarter of patients reporting having left an appointment unsure of the next steps, highlighting a need for clearer communication follow-up plans at the end of visits.\u003c/p\u003e\u003c/li\u003e\u003cli\u003e\u003cp\u003ePatients feel that they frequently assume the role of messenger between different doctors. A large majority did not perceive that their various healthcare providers (neurologists, GPs, therapists, etc.) communicate with each other about the patient\u0026rsquo;s care.\u003c/p\u003e\u003c/li\u003e\u003cli\u003e\u003cp\u003eFew patients were asked about personal challenges during contacts (like difficulties at home) or were being involved in generating solutions for those challenges. Likewise, providers seldom solicited patient input on how to improve care or health.\u003c/p\u003e\u003c/li\u003e\u003cli\u003e\u003cp\u003eFamily/caregiver inclusion is minimal despite many patients likely relying on family support, the healthcare system rarely involves or communicates with those caregivers as a part of the care team.\u003c/p\u003e\u003c/li\u003e\u003c/ul\u003e\u003c/p\u003e\u003cp\u003eAcross all five areas, proactive follow-up, post-visit information, provider communication, holistic patient-centric care, and family inclusion, prior literature largely supports the experiences reported by our sample. These issues are not unique to one study or one country; they reflect broader challenges in managing complex chronic conditions like MS. Patients worldwide have voiced similar frustrations about lapses in follow-up and coordination, and researchers have documented tangible consequences (from patient anxiety to higher hospitalization rates) when care is fragmented or unresponsive (Joo, 2023; Sun et al., 2023). On the other hand, the literature also points to strategies that can mitigate these problems. Proactive, integrated care, exemplified by case management interventions, shared care plans, multidisciplinary teams, and inclusion of patients and families as active partners, tends to yield better satisfaction and in some cases better health outcomes (Leary et al., 2015). In contrast, not every intervention is uniformly successful. For example, simply giving a written care plan to the patient did not solely improve outcomes for chronic patients in a Finnish trial (Tusa et al., 2021), which suggests that improvements must be comprehensive and tailored rather than one-size-fits-all.\u003c/p\u003e\u003cp\u003eThe challenges reported by Finnish pwMS align closely with findings from other national and international MS surveys. For example, a recent large-scale study of 4,555 MS patients found that only 63.7% had ever discussed treatment goals with their neurologist, suggesting that patient involvement remains limited (Christ et al., 2023). Similarly, a survey of 300 pwMS found that, while patients were generally satisfied with their care, they expressed significant dissatisfaction with shared decision-making and the level of personal engagement in treatment planning (Al-Dossari et al., 2024). These results parallel our findings.\u003c/p\u003e\u003cp\u003ePrevious research has indicated that the vast majority of MS patients prefer a collaborative role in treatment decisions (Ubbink et al., 2022). PwMS in Germany reported feeling that their providers sometimes saw \u0026ldquo;just the disease\u0026rdquo; and not their personal life context, indicating a gap in holistic care. Patients in that study also noted deficits in the physician\u0026ndash;patient relationship, implying they weren\u0026rsquo;t as engaged in dialogue or decision-making as they wished (Galushko et al., 2014). Indeed, across chronic illnesses, experts emphasize that care should encompass psychological support, lifestyle guidance, and social services alongside medical treatment (Harris et al., 2003). In the MS-specific context, recent reviews have stressed the importance of a multidisciplinary team, not only neurologists but also mental health professionals, physiotherapists, social workers, etc., to manage the full spectrum of the disease\u0026rsquo;s impact (Kraft \u0026amp; Berger, 2021; Savio et al., 2025). Similarly, one of these reviews highlighted that high-quality MS care requires active patient involvement: doctors should \u0026ldquo;create a dialog\u0026rdquo; with the patient about their preferences and engage them continuously in their care, rather than making decisions unilaterally (Kraft \u0026amp; Berger, 2021).\u003c/p\u003e\u003cp\u003e The study results also point out that family members or caregivers are seldom included in the care process. Families and close caregivers often play a pivotal role in a patient\u0026rsquo;s day-to-day management of MS, helping with transportation, medications, or providing emotional support, yet healthcare systems do not always formally integrate them (Galushko et al., 2014). While there has been some shift to the contrary, the would be benefits are also not quite straightforward, with previous literature pointing out that an involved caregiver may be a strong positive influence but may also be a negative force in the pwMS\u0026rsquo;s life (Kesselring et al., 2022). For example, an overbearing spouse may have such an effect. Thus, while caregiver involvement could address some of the Finnish pwMS feelings of insufficient support and bring coordination benefits, any involvement should remain strictly at their own discretion. When to include and when not to include close caregivers should be further explored.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec17\" class=\"Section2\"\u003e\u003ch2\u003eStrengths and limitations\u003c/h2\u003e\u003cp\u003e This study\u0026rsquo;s strengths include its large national sample and multifaceted approach to care integration from the patient perspective of MS in Finland, which has been an understudied topic. By leveraging the Finnish Neuro Society\u0026rsquo;s membership, we achieved broad reach across regions. The response rate of 35.6% is very respectable for an online survey and provides a sizable absolute number of respondents, corresponding to roughly 12% of the whole Finnish MS population. We used a comprehensive instrument grounded in a validated survey (PPIC) and previous qualitative studies, and enriched by patient and provider input, enhancing content validity for the Finnish MS context. The structured approach allows for granular insights into specific integration domains. Moreover, conducting the study during a period of health system reform gives timely insight into integration challenges that reforms seek to address.\u003c/p\u003e\u003cp\u003eSeveral limitations should be acknowledged. First, the questionnaire was distributed through a patient organization instead of care units, introducing possible response bias and self-selection bias, given that participants were members of the Finnish Neuro Society and may differ from the wider MS population. There was a high rate of disability and permanent pension, suggesting possible overrepresentation of progressive disease forms of MS, for which there are no highly effective disease-modifying therapies, which may be reflected in the results. The study\u0026rsquo;s cross-sectional design offers only a snapshot in time and limits any causal interpretation or observation of changing perceptions. It was conducted roughly one year into a significant healthcare reform, so attitudes might evolve as the new system matures. The study relies on self-reported perceptions. Patient impressions are vital but not independently verified. For instance, we do not know if providers truly communicated with each other, only that patient felt they did or did not. While developed carefully and validated by both experts and pilot respondents, the psychometric properties of the newly developed items remain to be established, and the findings should be seen as exploratory. Finally, the study is geographically limited to Finland, which may limit generalization.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec18\" class=\"Section2\"\u003e\u003ch2\u003eImplications for Policy and Practice\u003c/h2\u003e\u003cp\u003eThe clear message that many pwMS feel left to coordinate their own care underscores the need for stronger coordination mechanisms. Three possible coordination mechanisms were identified that could help shift the coordination responsibility from the patient back towards the healthcare system: (1) assigning an MS nurse or care manager to each patient on regular follow-up, (2) providing a single point of contact, and (3) bridging communication between specialist and primary care services. The efficacy of these mechanisms should be assessed keeping in mind that patients themselves can indicate what they value and what works for them. Thus, while addressing these integration gaps it is pivotal to track patient satisfaction and care outcomes.\u003c/p\u003e\u003cp\u003eBetter inter-provider communication is equally vital. Patients frequently reported having to repeat information or serve as messengers among different healthcare professionals. Empowering patients by offering clearer visit summaries, personalized care plans, and explicit instructions on accessing their records could further reduce confusion. At the same time, many patients can benefit from including family or caregivers in their care. Consequently, providers could tell patients of the opportunity to invite them along for care visits.\u003c/p\u003e\u003cp\u003eIn addition, simple technological tools like automated reminders for appointments or lab renewals can promote a more proactive model of care and prevent oversights. Yet, true integration depends on the day-to-day processes that make care feel seamless to patients, beyond just organizational mergers. Routine monitoring of patient-reported integration measures, as well as immediate steps such as naming a care coordinator and holding multidisciplinary conferences for complex cases, can help embed genuine continuity into MS care. Patient organizations can also partner with clinics to improve education and ensure that all stakeholders, including family members, are appropriately involved.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec19\" class=\"Section2\"\u003e\u003ch2\u003eFuture Research\u003c/h2\u003e\u003cp\u003eFuture research could delve deeper into these data by examining subgroup differences, for instance, whether newly diagnosed individuals experience care integration differently than those with more experience with the diagnosis, or whether multimorbidity correlates with lower integration levels. Such analyses could highlight high-risk groups needing targeted support. A follow-up survey in a few years would also show whether integration perceptions improve as the current health reform matures, possibly attributing changes to specific reforms. Conducting research in a care unit, with objective evaluation of follow-up procedures at the same time as performing a patient questionnaire, could shed light on the gap between patient perceptions and objective metrics. Comparative studies between countries and health systems may also highlight relevant differences.\u003c/p\u003e\u003cp\u003eQualitative research is another priority, as interviews with patients and providers could provide insight on why gaps and perceptions thereof occur and how best to address them. Intervention studies testing new care coordinator roles or shared electronic care tools in specific regions would also help determine which strategies genuinely improve care continuity and patient outcomes. Additionally, applying the same focus to other chronic diseases in Finland would reveal whether issues identified in MS are systemic or unique to MS management.\u003c/p\u003e\u003cp\u003eAdditionally, while we have outlined an extensive agenda of development points, where patients report shortcomings, it is equally important to evaluate the potential cost implications of such measures and realistic implementation possibilities. While implementing new developments often incurs a direct price tag, the effects of such measures may or may not reduce long-term costs, which should be extensively evaluated.\u003c/p\u003e\u003cp\u003eIn conclusion, our findings indicate that Finnish pwMS, are generally satisfied with their treatment, but clearly see room for more seamless integration. Patients highlight the need for greater proactive follow-up, more robust communication and knowledge sharing between providers, so they are not forced to act as messengers, better awareness and involvement in care plans, and higher integration of family members into the care process.\u003c/p\u003e\u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis work was funded by the Finnish MS Foundation.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics Approval and Consent to Participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study protocol was reviewed and approved by the Aalto University Ethical Review Board (Approval D/662/03.04/2022). Participation in the survey was voluntary. All participants were informed about the purpose of the study, data confidentiality, and their right to withdraw at any time before submitting the questionnaire. Participants were required to actively indicate their consent to participate by selecting before proceeding to the survey questions. No personally identifiable information was collected.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe dataset generated and analyzed during the current study is not publicly available due to the sensitive nature of personal health information and the conditions of the ethics approval. De-identified data may be made available from the corresponding author upon reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMV, AV, IS, LM, and PT declare no competing interests. SML declares lecture fees from Alexion, Argenx, Lundbeck, Merck, Novartis, Sanofi, Teva; congress and travel expenses from Merck, Novartis, UCB Pharma; and consultation fees from Argenx, Johnson\u0026amp;Johnson, Novartis, Sanofi, UCB Pharma.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eConceptualization: MV; Methodology: MV, IS, AV; Survey design: MV, IS, AV; Data curation: MV; Formal analysis: MV, IS, AV; Investigation: MV, IS, AV; Project administration: MV; Writing \u0026ndash; original draft: MV; Writing \u0026ndash; review \u0026amp; editing: MV, IS, AV, SML, LM, PT; Supervision: SML, LM, PT.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors gratefully acknowledge the Finnish Neuro Society for their collaboration and contributions to the research process and for supporting the dissemination of the findings presented in this manuscript.\u003cbr\u003e\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eAla-Kauhaluoma, M., \u0026amp; Laurila, H. 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Rising prevalence of multiple sclerosis worldwide: Insights from the Atlas of MS. \u003cem\u003eMultiple Sclerosis Journal\u003c/em\u003e, \u003cem\u003e26\u003c/em\u003e(14), 1816\u0026ndash;1821. https://doi.org/10.1177/1352458520970841\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Multiple sclerosis, Integrated care, Patient-centered care, Health services research, Care coordination, Finland","lastPublishedDoi":"10.21203/rs.3.rs-7364638/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7364638/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e\u003cp\u003eMultiple sclerosis (MS) is a chronic neurologic disease requiring long-term, multidisciplinary management. Integrated care is considered essential for treating chronic conditions, yet there is limited evidence on how people with MS (pwMS) perceive integration in their care. In Finland, MS is one of the most prevalent leading causes of disability with more than 12,000 individuals being affected by the disease. In addition, a major health and social care reform in 2023 was designed to integrate services across primary and specialized care​. This study aimed to assess pwMS perceptions of care integration and identify areas for improvement in their care pathways.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e\u003cp\u003eWe conducted a national cross-sectional web-based survey in collaboration with the Finnish Neuro Society. The target population was adult pwMS in Finland, recruited via the society\u0026rsquo;s membership (N\u0026thinsp;=\u0026thinsp;4122 invited). The survey (101 items) covered sociodemographics, experiences and preferences regarding care integration, and self-reported service utilization. Most survey items used response scales. Descriptive statistics were used to summarize responses.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eA total of 1,467 pwMS responded (35.6% response rate), representing\u0026thinsp;~\u0026thinsp;12% of Finland\u0026rsquo;s MS population. The most common age group was 45\u0026ndash;54 years old, and 79.2% were female. A majority of 64.6% reported being satisfied with the care they have received, and 32.6% rated their overall health positively. Approximately 42% reported not receiving provider-initiated follow-up in the past year, and 23.6% had left an appointment feeling unsure about the next steps. Moreover, 53.2% reported significant life challenges affecting self-care, while 25.3% had a plan co-created with healthcare personnel to address these challenges. Inter-provider communication was frequently perceived as fragmented and 40% reported that next-of-kin were never involved in their care.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e\u003cp\u003eBy adopting a patient-centered care approach, this first nationwide survey of pwMS in Finland reveals high overall care satisfaction alongside specific areas of further improvement in care integration. Patients report fragmented communication between providers, low involvement of family support, and uncertainty about the existence of care plans. The findings underscore the need for health policy and nationwide practice initiatives to improve coordination, communication, and patient engagement in MS care. Further research is needed on the effects of, for example, dedicated care coordinators for MS and other chronic diseases.\u003c/p\u003e","manuscriptTitle":"Patients’ Perceptions of Care Integration in Multiple Sclerosis Care in Finland: A Cross- Sectional National Survey","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-09-23 15:26:35","doi":"10.21203/rs.3.rs-7364638/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"editorInvitedReview","content":"","date":"2025-09-23T15:22:21+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"285093705160686478495058547678152503628","date":"2025-09-22T15:22:38+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-09-15T08:19:17+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-09-10T05:44:23+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-08-20T06:08:05+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-08-18T09:38:42+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Health Services Research","date":"2025-08-18T09:35:40+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"f9d4f36e-2bc7-4bc9-ba59-7c0ade50badd","owner":[],"postedDate":"September 23rd, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2025-09-23T15:26:35+00:00","versionOfRecord":[],"versionCreatedAt":"2025-09-23 15:26:35","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7364638","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7364638","identity":"rs-7364638","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}