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“So at least now I know how to deal with things myself, what I can do if it gets really bad again”—experiences with a long-term cross-sectoral advocacy care and case management for severe multiple sclerosis: a qualitative study



Persons with severe Multiple Sclerosis (PwsMS) face complex needs and daily limitations that make it challenging to receive optimal care. The implementation and coordination of health care, social services, and support in financial affairs can be particularly time consuming and burdensome for both PwsMS and caregivers. Care and case management (CCM) helps ensure optimal individual care as well as care at a higher-level. The goal of the current qualitative study was to determine the experiences of PwsMS, caregivers and health care specialists (HCSs) with the CCM.


In the current qualitative sub study, as part of a larger trial, in-depth semi-structured interviews with PwsMS, caregivers and HCSs who had been in contact with the CCM were conducted between 02/2022 and 01/2023. Data was transcribed, pseudonymized, tested for saturation and analyzed using structuring content analysis according to Kuckartz. Sociodemographic and interview characteristics were analyzed descriptively.


Thirteen PwsMS, 12 caregivers and 10 HCSs completed interviews. Main categories of CCM functions were derived deductively: (1) gatekeeper function, (2) broker function, (3) advocacy function, (4) outlook on CCM in standard care. Subcategories were then derived inductively from the interview material. 852 segments were coded. Participants appreciated the CCM as a continuous and objective contact person, a person of trust (92 codes), a competent source of information and advice (on MS) (68 codes) and comprehensive cross-insurance support (128 codes), relieving and supporting PwsMS, their caregivers and HCSs (67 codes).


Through the cross-sectoral continuous support in health-related, social, financial and everyday bureaucratic matters, the CCM provides comprehensive and overriding support and relief for PwsMS, caregivers and HCSs. This intervention bears the potential to be fine-tuned and applied to similar complex patient groups.

Trial registration

The study was approved by the Ethics Committee of the University of Cologne (#20–1436), registered at the German Register for Clinical Studies (DRKS00022771) and in accordance with the Declaration of Helsinki.

Peer Review reports


Multiple sclerosis (MS) is the most frequent and incurable chronic inflammatory and degenerative disease of the central nervous system (CNS). Illness awareness and the number of specialized MS clinics have increased since the 1990s, paralleled by the increased availability of disease-modifying therapies [1]. There are attempts in the literature for the definition of severe MS [2, 3]. These include a high EDSS (Expanded disability Status Scale [4]) of ≥ 6, which we took into account in our study. There are also other factors to consider, such as a highly active disease course with complex therapies that are associated with side effects. These persons are (still) less disabled, but may feel overwhelmed with regard to therapy, side effects and risk monitoring of therapies [5, 6].

Persons with severe MS (PwsMS) develop individual disease trajectories marked by a spectrum of heterogeneous symptoms, functional limitations, and uncertainties [7, 8] manifesting individually and unpredictably [9]. This variability can lead to irreversible physical and mental impairment culminating in complex needs and daily challenges, particularly for those with progressive and severe MS [5, 10, 11]. Such challenges span the spectrum from reorganizing biographical continuity and organizing care and everyday live, to monitoring disease-specific therapies and integrating palliative and hospice care [5, 10]. Moreover, severe MS exerts a profound of social and economic impact [9, 12,13,14]. PwsMS and their caregivers (defined in this manuscript as relatives or closely related individuals directly involved in patients’ care) often find themselves grappling with overwhelming challenges. The process of organizing and coordinating optimal care becomes demanding, as they contend with the perceived unmanageability of searching for, implementing and coordinating health care and social services [5, 15,16,17].

Case management (CM) proved to have a positive effect on patients with neurological disorders and/or patients with palliative care needs [17,18,19,20,21,22,23,24]. However, a focus on severe MS has been missed so far Case managers primarily function as: (1) gatekeeper involving the allocation of necessary and available resources to a case, ensuring the equitable distribution of resources; as (2) broker assisting clients in pursuing their interests, requiring negotiation to provide individualized assistance that aligns as closely as possible with individual needs and (3) advocate working to enhance clients’ individual autonomy, to advocate for essential care offers, and to identify gaps in care [25,26,27,28,29].

Difficulties in understanding, acting, and making decisions regarding health care-related aspects (health literacy) poses a significant challenge for 54% of the German population [30]. Additionally acting on a superordinate level as an overarching link, a care and case management (CCM) tries to reduce disintegration in the social and health care system [31, 32]. Our hypothesis is that a CCM allows PwsMS and their caregivers to regain time and resources outside of disease management and to facilitate the recovery and establishment of biographical continuity that might be disrupted due to severe MS [33, 34].

Health care specialists (HCSs) often perceive their work with numerous time and economic constraints, especially when treating complex and severely ill individuals like PwsMS and often have concerns about being blamed by patients when expectations could not be met [35, 36]. Our hypothesis is that the CCM will help to reduce time constraints and free up resources for specialized tasks.

To the best of our knowledge there is no long-term cross-sectoral and outreaching authority or service dedicated to assisting in the organization and coordination of the complex care concerns of PwsMS within the framework of standard care addressing needs in health, social, financial, every day and bureaucratic aspects. While some studies have attempted to design and test care programs for persons with MS (PwMS), severely affected individuals were often not included [37,38,39]. They often remain overlooked by existing health and social care structures [5, 9, 15].

The COCOS-MS trial developed and applied a long-term cross-sectoral CCM intervention consisting of weekly telephone contacts and monthly re-assessments with PwsMS and caregivers, aiming to provide optimal care. Their problems, resources and (unmet) needs were assessed holistically including physical health, mental health, self-sufficiency and social situation and participation. Based on assessed (unmet) needs, individual care plans with individual actions and goals were developed and constantly adapted during the CCM intervention. Contacts with HCSs were established to ensure optimal care. The CCM intervention was structured through and documented in a CCM manual designed for the trial [40, 41].

Our aim was to find out how PwsMS, caregivers and HCSs experienced the cross-sectoral long-term, outreaching patient advocacy CCM.


This study is part of a larger phase II, randomized, controlled clinical trial “Communication, Coordination and Security for people with severe Multiple Sclerosis (COCOS-MS)” [41]. This explorative clinical trial, employing a mixed-method design, incorporates a qualitative study component with PwsMS, caregivers and HCSs to enrich the findings of the quantitative data. This manuscript focuses on the qualitative data collected between February 2022 and January 2023, following the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines [42].

Research team

Three trained authors AM, KD and FH (AM, female, research associate, M.A. degree in Rehabilitation Sciences; KD, female, researcher, Dr. rer. medic.; FH, male, research assistant, B.Sc. degree in Health Care Management), who had no prior relationship with patients, caregivers or HCSs conducted qualitative interviews. A research team, consisting of clinical experts and health services researchers, discussed the development of the interview guides and the finalized category system.

Theoretical framework

Interview data was analyzed with the structuring content analysis according to Kuckartz. This method enables a deductive structuring of interview material, as well as the integration of new aspects found in the interview material through the inductive addition of categories in an iterative analysis process [43].

Sociodemographic and interview characteristics were analyzed descriptively (mean, median, range, SD). PwsMS, caregivers and HCSs were contacted by the authors AM, KD or FH via telephone or e-mail after providing full written informed consent. Participants had the option to choose between online interviews conducted via the GoToMeeting 10.19.0® Software or face-to-face. Peasgood et al. (2023) found no significant differences in understanding questions, engagement or concentration between face-to-face and online interviews [44, 45]. Digital assessments were familiar to participants due to pandemic-related adjustments within the trial.

Out of 14 PwsMS and 14 caregivers who were approached to participate in interviews, three declined to complete interviews, resulting in 13 PwsMS (5 male, 8 female) and 12 caregiver (7 male, 5 female) interviews, respectively (see Fig. 1). Thirty-one HCSs were contacted of whom ten (2 male, 8 female) agreed to be interviewed (see Fig. 2).

Fig. 1
figure 1

Flowchart of PwsMS and caregiver participation in the intervention group of the COCOS-MS trial. Patients could participate with and without a respective caregiver taking part in the trial. Therefore, number of caregivers does not correspond to patients. For detailed inclusion criteria see also Table 1 in Golla et al. [41]

Fig. 2
figure 2

Flowchart of HCSs interview participation

Setting and data collection

Interviews were carried out where participants preferred, e.g. at home, workplace, online, and no third person being present. In total, we conducted 35 interviews whereof 7 interviews face-to-face (3 PwsMS, 3 caregivers, 1 HCS).

The research team developed a topic guide which was meticulously discussed with research and clinical staff to enhance credibility. It included relevant aspects for the evaluation of the CCM (see Tables 1 and 2, for detailed topic guides see Supplementary Material). Patient and caregiver characteristics (covering age, sex, marital status, living situation, EDSS (patients only), subgroup) were collected during the first assessment of the COCOS-MS trial and HCSs characteristics (age, sex, profession) as well as interview information (length and setting) were collected during the interviews. The interview guides developed for this study addressed consistent aspects both for PwsMS and caregivers (see Supplementary Material):

Table 1 Topic guide for PwsMS and their caregivers
Table 2 Topic guide for HCSs

For HCSs it contained the following guides:

Probing questions were asked to get more specific and in-depth information. Interviews were carried out once and recorded using a recording device or the recording function of the GoToMeeting 10.19.0® Software. Data were pseudonymized (including sensitive information, such as personal names, dates of birth, or addresses), audio files were safely stored in a data protection folder. The interview duration ranged from 11 to 56 min (mean: 23.9 min, SD: 11.1 min). Interviews were continued until we found that data saturation was reached. Audio recordings were transcribed verbatim by an external source and not returned to participants.

Data analysis

Two coders (AM, FH) coded the interviews. Initially, the first author (AM) thoroughly reviewed the transcripts to gain a sense of the interview material. Using the topic guide and literature, she deductively developed a category system based on the primary functions of CM [25,26,27,28,29]. Three interviews were coded repeatedly for piloting, and inductive subcategories were added when new themes emerged in the interview material. This category system proved suitable for the interview material. The second coder (FH) familiarized himself with the interview material and category system. Both coders (AM, FH) independently coded all interviews, engaging in discussions and adjusting codes iteratively. The finalized category system was discussed and consolidated in a research workshop and within the COCOS-MS trial group and finally we reached an intercoder agreement of 90% between the two coders AM and FH, computed by the MAXQDA Standard 2022® software.

We analyzed sociodemographic and interview characteristics using IBM SPSS Statistics 27® and Excel 2016®. Transcripts were managed and analyzed using MAXQDA Standard 2022®.

Participants were provided with oral and written information about the trial and gave written informed consent. Ethical approvals were obtained from the Ethics Committee of the University of Cologne (#20–1436). The trial is registered in the German Register for Clinical Studies (DRKS) (DRKS00022771) and is conducted under the Declaration of Helsinki.


Characteristics of participants and interviews

PwsMS participating in an interview were mainly German (84.6%), had a mean EDSS of 6.8 (range: 6–8) and MS for 13.5 years (median: 14; SD: 8.1). For detailed characteristics see Table 3.

Table 3 Interview and sociodemographic characteristics

Most of the interviewed caregivers (9 caregivers) were the partners of the PwsMS with whom they lived in the same household. For further details see Table 3.

HCSs involved in the study comprised various professions, including MS-nurse (3), neurologist (2), general physician with further training in palliative care (1), physician with further training in palliative care and pain therapist (1), housing counselling service (1), outpatient nursing service manager (1), participation counselling service (1).

Structuring qualitative content analysis

The experiences of PwsMS, caregivers and HCSs were a priori deductively assigned to four main categories: (1) gatekeeper function, (2) broker function, (3) advocacy function [25,26,27,28,29] and (4) Outlook on CCM in standard care, whereas the subcategories were developed inductively (see Fig. 3).

Fig. 3
figure 3

Category system including main and subcategories of the qualitative thematic content analysis

The most extensive category, housing the highest number of codes and subcodes, was the “Outlook on CCM in standard care” (281 codes). Following this, the category “Advocacy Function” contained 261 codes. The “Broker Function” (150 codes) and the “Gatekeeper Function” (160 codes) constituted two smaller categories. The majority of codes was identified in the caregivers’ interviews, followed by those of PwsMS (see Table 4). Illustrative quotes for each category and subcategory can be found in Table 5.

Table 4 Frequency of codes and subcodes in the three groups
Table 5 Illustrative quotes for categories and subcategories of the qualitative content analysis

Persons with severe multiple sclerosis

In the gatekeeper function (59 codes), PwsMS particularly valued the CCM as a continuous contact person. They appreciated the CCM as a person of trust who was reliably accessible throughout the intervention period. This aspect, with 41 codes, held significant importance for PwsMS.

Within the broker function (44 codes), establishing contact was most important for PwsMS (22 codes). This involved the CCM as successfully connecting PwsMS and caregivers with physicians and therapists, as well as coordinating and arranging medical appointments, which were highly valued. Assistance in authority and health and social insurance matters (10 codes) was another subcategory, where the CCM encompassed support in communication with health insurance companies, such as improving the level of care, assisting with retirement pension applications, and facilitating rehabilitation program applications. Optimized care (12 codes) resulted in improved living conditions and the provision of assistive devices through the CCM intervention.

The advocacy function (103 codes) emerged as the most critical aspect for PwsMS, representing the core of the category system. PwsMS experienced multidimensional, comprehensive, cross-insurance system support from the CCM. This category, with 43 statements, was the largest within all subcategories. PwsMS described the CCM as addressing their concerns, providing help, and assisting with the challenges posed by the illness in everyday life. The second-largest subcategory, regaining, maintaining and supporting autonomy (25 codes), highlighted the CCM’s role in supporting self-sufficiency and independence. Reviving personal wellbeing (17 codes) involved PwsMSs’ needs of regaining positive feelings, improved quality of life, and a sense of support and acceptance, which could be improved by the CCM. Temporal relief (18 codes) was reported, with the CCM intervention taking over or reducing tasks.

Within the outlook on CCM in standard care (84 codes), eight subcategories were identified. Communications was described as friendly and open (9 codes), with the setting of communication (29 codes) including the frequency of contacts deemed appropriate by the interviewed PwsMS, who preferred face-to-face contact over virtual or telephone interactions. Improvement suggestions for CCM (10 codes) predominantly revolved around the desire for the continuation of the CCM beyond the trial, expressing intense satisfaction with the CCM contact person and program. PwsMS rarely wished for better cooperation with the CCM. With respect to limitations (7 codes), PwsMS distinguished between individual limitations (e.g. when not feeling ready for using a wheelchair) and overriding structural limitations (e.g. unsuccessful search for an accessible apartment despite CCM support). Some PwsMS mentioned needing the CCM earlier in the course of the disease and believed it would beneficial for anyone with a chronic illness (6 codes).


In the gatekeeper function (75 codes), caregivers highly valued the CCM as a continuous contact partner (33 codes). More frequently than among the PwsMS interviewed, caregivers valued the CCM as a source of consultation/ information on essential individual subjects (42 codes). The need for basic information about the illness, its potential course, treatment and therapy options, possible supportive equipment, and basic medical advice/ information could be met by the CCM.

Within the broker function (63 codes), caregivers primarily experienced the subcategory establish contacts (24 codes). They found the CCM as helpful in establishing and managing contact with physicians, therapists and especially with health insurance companies. In the subcategory assistance in authority and health and social insurance matters (22 codes), caregivers highlighted similar aspects as the PwsMS interviewed. However, there was a particular emphasis on assistance with patients' retirement matters. Caregivers also valued the optimization of patients’ care and living environment (17 codes) in various life areas during the CCM intervention, including improved access to assistive devices, home modification, and involvement of a household support and/ or nursing services.

The advocacy function, with 115 codes, was by far the broadest category. The subcategory multidimensional, comprehensive, cross-insurance system support represented the largest subcategory of caregivers, with 70 statements. In summary, caregivers felt supported by the CCM in all domains of life. Regaining, maintaining and supporting autonomy (11 codes) and reviving personal wellbeing (8 codes) in the form of an improved quality of life played a role not only for patients but also for caregivers, albeit to a lower extend. Caregivers experienced temporal relief (26 codes) as the CCM undertook a wide range of organizational tasks, freeing up more needed resources for their own interests.

For the Outlook on CCM in standard care, caregivers provided various suggestions (81 codes). Similar to PwsMS, caregivers felt that setting (home based face-to-face, telephone, virtual) and frequency of contact were appropriate (10 codes, communication setting) and communications (7 codes) were recognized as open and friendly. However, to avoid conflicts between caregiver and PwsMS, caregivers preferred meeting the CCM separately from the PwsMS in the future. Some caregivers wished the CCM to specify all services it might offer at the beginning, while others emphasized not wanting this. Like PwsMS, caregivers criticized the CCM intervention being (trial-related) limited to one year, regardless of whether further support was needed or processes being incomplete (13 codes, improvement suggestions). After the CCM intervention time had expired, the continuous contact person and assistance were missed and new problems had arisen and had to be managed with their own resources again (9 codes, effects of CCM discontinuation), which was perceived as an exhausting or unsolvable endeavor. Caregivers identified analogous limitations (8 codes), both individual and structural. However, the largest subcategory, was the experienced potential of CCM (27 codes), reflected in extremely high satisfaction with the CCM intervention. Like PwsMS, caregivers regarded severe chronically ill persons in general as target groups for a CCM (7 codes) and would implement it even earlier, starting from the time of diagnosis. They considered a CCM to be particularly helpful for patients without caregivers or for caregivers with limited (time) resources, as it was true for most caregivers.

Health care specialists

In the gatekeeper function (26 codes) HCSs particularly valued the CCM as a continuous contact partner (18 codes). They primarily described their valuable collaboration with the CCM, emphasizing professional exchange between the CCM and HCSs.

Within the broker function (43 codes), the CCM was seen as a connecting link between patients and HCSs, frequently establishing contacts (18 codes). This not only improved optimal care on an individual patient level (case management) but also at a higher, superordinate care level (care management). HCSs appreciated the optimized care and living environment (18 codes) for PwsMS, including improved medical and therapeutic access and the introduction of new assistive devices. The CCM was also recognized as providing assistance in authority and health and social matters (7 codes) for PwsMS and their caregivers.

In the advocacy function (43 codes), HCSs primarily reported temporal relief through CCM intervention (23 codes). They experienced this relief, especially as the CCM provided multidimensional, comprehensive, and cross-insurance system support (15 codes) for PwsMS and their caregivers. Through this support, HCSs felt relieved from time intensive responsibilities that may not fall within their area of expertise, freeing up more time resources for their actual professional tasks.

The largest category within the HCSs interviews was the outlook on CCM in standard care (116 codes). In the largest subcategory, HCSs made suggestions for further patient groups who could benefit (38 codes) from a CCM. Chronic neurological diseases like neurodegenerative diseases (e.g. amyotrophic lateral sclerosis), typical and atypical Parkinson syndromes were mentioned. HCSs considered the enrollment of the CCM directly after the diagnosis of these complex chronic diseases. Additionally, chronic progressive diseases in general or oncological diseases, which may also run chronically, were regarded worthwhile for this approach. HCSs also provided suggestions regarding improvement (21 codes). They wished e.g. for information or contact when patients were enrolled to the CCM, regular updates, exchange and collaborative effort. On the other hand, HCSs reported, that their suggestions for improvement would hardly be feasible due to their limited time resources. Similar to patients and caregivers, HCSs experienced structural limits (13 codes), which a CCM could not exceed due to overriding structural limitations (e.g. insufficient supply of (household) aids, lack of outreach services like psychotherapists, and long processing times on health and pension insurers' side). HCSs were also asked about their opinions on financial resources (14 codes) of a CCM in standard care. All interviewed HCSs agreed that CCM would initially cause more costs for health and social insurers, but they were convinced of cost savings in the long run. HCSs particularly perceived the potential of the CCM (20 codes) through the feedback of PwsMS, highlighting the trustful relationship enabling individualized help for PwsMS and their caregivers.


Persons with severe multiple sclerosis and their caregivers

The long-term cross-sectoral CCM intervention implemented in the COCOS-MS trial addressed significant unmet needs of PwsMS and their caregivers which previous research revealed as burdensome and hardly or even not possible to improve without assistance [5, 6, 9, 10, 33, 35, 46]. Notably, the CCM service met the need for a reliable, continuous contact partner, guiding patients through the complexities of regulations, authorities and the insurance system. Both, PwsMS and their caregivers highly valued the professional, objective perspective provided by the CCM, recognizing it as a source of relief, support and improved care in line with previous studies [37, 47]. Caregivers emphasized the CCM’s competence in offering concrete assistance and information on caregiving and the fundamentals of MS, including bureaucratic, authority and insurances matters. On the other hand, PwsMS particularly appreciated the CCMs external reflective and advisory function, along with empathic social support tailored to their individual concerns. Above all, the continuous partnership of trust, available irrespective of the care sector, was a key aspect that both PwsMS and their caregivers highlighted. This consistent support was identified as one of the main components in the care of PwsMS in previous studies [5, 33, 35].

As the health literacy is inadequate or problematic for 54% of the German population and disintegration in the health and social care system is high [30,31,32], the CCM approach serves to enhance health literacy and reduce disintegration of PwsMS and their caregivers by providing cross-insurance navigational guidance in the German health and social insurance sector on a superordinate level. Simultaneously PwsMS and caregivers experienced relief and gained more (time) resources for all areas of life outside of the disease and its management, including own interests and establishing biographical continuity. This empowerment enables patients to find a sense of purpose beyond their illness, regain autonomy, and enhance social participation, reducing the feeling of being a burden to those closest to them. Such feelings are often experienced as burdensome and shameful by PwsMS [6, 48,49,50]. Finding a sense of purpose beyond the illness also contributes to caregivers perceiving their loved ones not primarily as patient but as individuals outside of the disease, reinforcing valuable relationships such as partners, siblings, or children, strengthening emotional bonds. These factors are also highly relevant and well-documented in a suicide-preventive context, as the suicide rate is higher in persons diagnosed with neurological disorders [19, 51,52,53,54,55,56,57,58,59,60] and the feeling of being a burden to others, loss of autonomy, and perceived loss of dignity are significant factors in patients with severe chronic neurological diseases for suicide [50, 57].

Health care specialists

The temporal relief experienced by the CCM was particularly significant for HCSs and did not only improve the satisfaction of HCSs but also removed unfulfilled expectations and concerns about being blamed by patients when expectations could not be met, which previous studied elaborated [35, 36]. Moreover, the CCM alleviated the burden on HCSs by addressing patients’ concerns, allowing them to focus on their own medical responsibilities. This aspect probably reduced the dissatisfaction that arises when HCSs are expected to address issues beyond their medical expertise, such as assistive devices, health and social insurance, and the organization and coordination of supplementary therapies, appointments, and contacts [35, 36, 61]. Consequently, the CCM reduced difficulties of HCSs treating persons with neurological or chronical illnesses, which previous research identified as problematic.

HCSs perceive their work as increasingly condensed with numerous time and economic constraints, especially when treating complex and severely ill individuals like PwsMS [36]. This constraint was mentioned by HCSs in the interviews and was one of the main reasons why they were hesitant to participate in interviews and may also be an explanation for a shorter interview duration than initially planned in the interview guides. The CCM’s overarching navigational competence in the health and social insurance system was particularly valued by HCSs. The complex and often small-scale specialties in the health and social care system are not easily manageable or well-known even for HCSs, and dealing with them can exceed their skills and time capacities [61]. The CCM played a crucial role in keeping (temporal) resources available for what HCSs are professionally trained and qualified to work on. However, there remains a challenge in finding solutions to the dilemma faced by HCSs regarding their wish to be informed about CCM procedures and linked with each other, while also managing the strain of additional requests and contact with the CCM due to limited (time) resources [62]. Hudon et al. (2023) suggest that optimizing time resources and improving exchange could involve meetings, information sharing via fax, e-mail, secure online platforms, or, prospectively, within the electronic patient record (EPR). The implementation of an EPR has shown promise in improving the quality of health care and time resources, when properly implemented [63, 64]. The challenge lies ineffective information exchange between HCSs and CCM for optimal patient care. The prospect of time saving in the long run and at best for a financial incentive, e.g., when anchoring in the Social Security Code, will help best to win over the HCSs.If this crucial factor can be resolved, there is a chance that HCSs will thoroughly accept the CCM as an important pillar, benefiting not only PwsMS but also other complex patient groups, especially those with long-term neurological or complex oncological conditions that might run chronically.

Care and case management and implications for the health care system

The results of our study suggest that the cross-sectoral long-term advocacy CCM in the COCOS-MS trial, with continuous personal contacts at short intervals and constant reevaluation of needs, problems, resources and goals, is highly valued by PwsMS, caregivers, and HCSs. The trial addresses several key aspects that may have been overlooked in previous studies which have shown great potential for the integration of case management [17, 47, 62, 65, 66]. However, they often excluded the overriding care management, missed those patient groups with special severity and complexity who might struggle to reach social and health care structures independently or the interventions were not intended for long-term [22, 37]. Our results indicate that the CCM intervention had a positive impact on PwsMS and caregivers as HCSs experienced them with benefits such as increased invigoration, reduced demands, and enhanced self-confidence. However, there was a notable loss experienced by PwsMS and caregivers after the completion of the CCM intervention, even if they had stabilized during the intervention period. The experiences of optimized social and health care for the addressed population, both at an individual and superordinate care level, support the integration of this service into standard care. Beyond the quantitatively measurable outcomes and economic considerations reported elsewhere [16, 20, 21], our results emphasize the importance of regaining control, self-efficacy, self-worth, dignity, autonomy, and social participation. These aspects are highlighted as preventive measures in suicidal contexts, which is particularly relevant for individuals with severe and complex illnesses [19, 50, 53,54,55,56,57,58,59,60]. Our findings further emphasize the societal responsibilities to offer individuals with severe and complex illnesses the opportunity to regain control and meaningful aspects of life, irrespective of purely economic considerations. This underscores the need for a comprehensive evaluation that not only takes into account quantitative measures but also the qualitative aspects of well-being and quality of life when making recommendations of a CCM in standard care.

The study by J. Y. Joo and Huber (2019) highlighted that CM interventions aligned with the standards of the Case Management Society of America varied in duration, ranging from 1 month to 15.9 years, and implemented in community- or hospital-based settings. However, they noted a limitation in understanding how CM processes unfold [67]. In contrast, our trial addressed this criticism by providing transparent explanations of the CCM process, which also extends to a superordinate care management [40, 41]. Our CCM manual [40] outlines a standardized and structured procedure for measuring and reevaluating individual resources, problems, and unmet needs on predefined dimensions. It also identifies goals and actions at reducing unmet needs and improving the individual resources of PwsMS and caregivers. Importantly, the CCM manual demonstrates that the CCM process can be structured and standardized, while accounting for the unique aspects of each individual’s serious illness, disease courses, complex needs, available resources, and environmental conditions. Furthermore, the adaptability of the CCM manual to other complex chronically ill patient groups suggests the potential for a standardized approach in various health care settings. This standardized procedure allows for consistency in assessing and addressing the individual needs of patients, ensuring that the CCM process remains flexible while maintaining a structured and goal-oriented framework.

The discussion about the disintegration in the social and health care system and the increasing specialization dates back to 2009 [31, 32]. Three strategies were identified to address this issue: (a) “driver-minimizing” [Treiberminimierende], (b) “effect-modifying” [Effektmodifizierende] and (c) “disintegration-impact-minimizing” [Desintegrationsfolgenminimierende] strategies. “Driver-minimizing strategies” involve comprehensive and radical changes within the existing health and social care system, requiring political and social pursuit. “Disintegration-impact-minimizing strategies” are strategies like quality management or tele-monitoring, which are limited in scope and effectiveness. “Effect-modifying strategies”, to which CCM belongs, acknowledges the segmentation within the system but aims to overcome it through cooperative, communicative, and integrative measures. CCM, being an “effect-modifying strategy”, operates the “integrated segmentation model” [Integrierte Segmentierung] rather than the “general contractor model” [Generalunternehmer-Modell] or “total service provider model” [Gesamtdienstleister-Modell] [31, 32]. In this model, the advantage lies in providing an overarching and coordinating service to link different HCSs and services cross-sectorally. The superordinate care management aspect of the CCM plays a crucial role in identifying gaps in care, which is essential for future development strategies within the health and social care system. It aims to find or develop (regional) alternatives to ensure optimal care [17, 23, 24, 68, 69], using regional services of existing health and social care structures. Therefore, superordinate care management within the CCM process is decisive for reducing disintegration in the system.

Strengths and limitations

The qualitative study results of the explorative COCOS-MS clinical trial, which employed an integrated mixed-method design, provide valuable insights into the individual experiences of three leading stakeholders: PwsMS, caregivers and HCSs with a long-term cross-sectoral CCM. In addition to in-depth interviews, patient and caregiver reported outcome measurements were utilized and will be reported elsewhere. The qualitative study’s strengths include the inclusion of patients who, due to the severity of their condition (e.g. EDSS mean: 6.8, range: 6–8, highly active MS), age (mean: 53.9 years, range: 36–73 years) family constellations, are often underrepresented in research studies and often get lost in existing social and health care structures. The study population is specific to the wider district region of Cologne, but the broad inclusion criteria make it representative of severe MS in Germany. The methodological approach of a deductive and inductive structuring content analysis made it possible to include new findings into an existing theoretical framework.

However, the study acknowledges some limitations. While efforts were made to include more HCSs, time constraints on their side limited the number of interviews conducted and might have biased the results. Some professions are underrepresented in the interviews. Complex symptoms (e.g. fatigue, ability to concentrate), medical or therapeutic appointments and organization of the everyday live may have been reasons for the patients’ and caregivers’ interviews lasting shorter than initially planned.

The provision of functions of a CCM, might have pre-structured the answers of the participants.


At current, there is no support system for PwsMS, their caregivers and HCSs that addresses their complex and unmet needs comprehensively and continuously. There are rare qualitative insights of the three important stakeholders: PwsMS, caregivers and HCSs in one analysis about a supporting service like a CCM. In response to this gap, we developed and implemented a long-term cross-sectoral advocacy CCM and analyzed it qualitatively. PwsMS, their caregivers and HCSs expressed positive experiences, perceiving the CCM as a source of relief and support that improved care across various aspects of life. For patients, the CCM intervention resulted in enhanced autonomy, reviving of personal wellbeing and new established contacts with HCSs. Caregivers reported a reduced organizational burden and felt better informed, and HCSs experienced primarily temporal relief, allowing them to concentrate on their core professional responsibilities. At a higher level of care, the study suggests that the CCM contributed to a reduction in disintegration within the social and health care system.

The feedback from participants is seen as valuable for adapting the CCM intervention and the CCM manual for follow-up studies, involving further complex patient groups such as neurological long-term diseases apart from MS and tailoring the duration of the intervention depending on the complexity of evolving demands.

Availability of data and materials

Generated and/or analyzed datasets of participants are available from the corresponding author on reasonable request to protect participants. Preliminary partial results have been presented as a poster during the EAPC World Congress in June 2023 and the abstract has been published in the corresponding abstract booklet [70].



Amyotrophic lateral sclerosis


Care and case management


Case management


Central nervous system


Communication, Coordination and security for people with multiple sclerosis


Consolidated criteria for reporting qualitative research


German register for clinical studies


Extended disability status scale


Electronic patient record


Health care specialists


Quality of life


Multiple sclerosis


Persons with severe multiple sclerosis


  1. Koch-Henriksen N, Magyari M. Apparent changes in the epidemiology and severity of multiple sclerosis. Nat Rev Neurol. 2021;17:676–88.

    Article  PubMed  Google Scholar 

  2. Ellenberger D, Flachenecker P, Fneish F, Frahm N, Hellwig K, Paul F, et al. Aggressive multiple sclerosis: a matter of measurement and timing. Brain. 2020;143:e97.

    Article  PubMed  PubMed Central  Google Scholar 

  3. Edmonds P, Vivat B, Burman R, Silber E, Higginson IJ. Loss and change: experiences of people severely affected by multiple sclerosis. Palliat Med. 2007;21:101–7.

    Article  PubMed  Google Scholar 

  4. Kurtzke JF. Rating neurologic impairment in multiple rating neurologic impairment in multiple sclerosis: An expanded disability status scale (EDSS). Neurology. 1983;33(11):1444–52.

    Article  CAS  PubMed  Google Scholar 

  5. Galushko M, Golla H, Strupp J, Karbach U, Kaiser C, Ernstmann N, et al. Unmet needs of patients feeling severely affected by multiple sclerosis in Germany: a qualitative study. J Palliat Med. 2014;17:274–81.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Borreani C, Bianchi E, Pietrolongo E, Rossi I, Cilia S, Giuntoli M, et al. Unmet needs of people with severe multiple sclerosis and their carers: qualitative findings for a home-based intervention. PLoS One. 2014:e109679.

  7. Yamout BI, Alroughani R. Multiple Sclerosis. Semin Neurol. 2018;38:212–25.

    Article  PubMed  Google Scholar 

  8. Nissen N, Lemche J, Reestorff CM, Schmidt M, Skjerbæk AG, Skovgaard L, et al. The lived experience of uncertainty in everyday life with MS. Disabil Rehabil. 2022;44:5957–63.

    Article  PubMed  Google Scholar 

  9. Strupp J, Hartwig A, Golla H, Galushko M, Pfaff H, Voltz R. Feeling severely affected by multiple sclerosis: what does this mean? Palliat Med. 2012;26:1001–10.

    Article  PubMed  Google Scholar 

  10. Strupp J, Voltz R, Golla H. Opening locked doors: Integrating a palliative care approach into the management of patients with severe multiple sclerosis. Mult Scler J. 2016;22:13–8.

    Article  CAS  Google Scholar 

  11. Kraft AK, Berger K. Kernaspekte einer bedarfsgerechten Versorgung von Patienten mit Multipler Sklerose : Inanspruchnahme ambulanter Leistungen und „shared decision making“ [Core aspects of a needs-conform care of patients with multiple sclerosis : Utilization of outpatient services and shared decision making]. Nervenarzt. 2020;91:503–10.

  12. Doshi A, Chataway J. Multiple sclerosis, a treatable disease. Clin Med (Lond). 2017;17:530–6.

    Article  PubMed  Google Scholar 

  13. Kobelt G, Thompson A, Berg J, Gannedahl M, Eriksson J. New insights into the burden and costs of multiple sclerosis in Europe. Mult Scler. 2017;23:1123–36.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Conradsson D, Ytterberg C, Engelkes C, Johansson S, Gottberg K. Activity limitations and participation restrictions in people with multiple sclerosis: a detailed 10-year perspective. Disabil Rehabil. 2021;43:406–13.

    Article  PubMed  Google Scholar 

  15. Sorensen PS, Giovannoni G, Montalban X, Thalheim C, Zaratin P, Comi G. The Multiple Sclerosis Care Unit. Mult Scler J. 2019;5:627–36.

    Article  Google Scholar 

  16. Tan H, Yu J, Tabby D, Devries A, Singer J. Clinical and economic impact of a specialty care management program among patients with multiple sclerosis: a cohort study. Mult Scler. 2010;16:956–63.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  17. Oeseburg B, Wynia K, Middel B, Reijneveld SA. Effects of case management for frail older people or those with chronic illness: a systematic review. Nurs Res. 2009;58:201–10.

    Article  PubMed  Google Scholar 

  18. Aiken LS, Butner J, Lockhart CA, Volk-Craft BE, Hamilton G, Williams FG. Outcome evaluation of a randomized trial of the PhoenixCare intervention: program of case management and coordinated care for the seriously chronically ill. J Palliat Med. 2006;9:111–26.

    Article  PubMed  Google Scholar 

  19. Kuhn U, Düsterdiek A, Galushko M, Dose C, Montag T, Ostgathe C, Voltz R. Identifying patients suitable for palliative care—a descriptive analysis of enquiries using a Case Management Process Model approach. BMC Res Notes. 2012;5:611.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Leary A, Quinn D, Bowen A. Impact of proactive case management by multiple sclerosis specialist nurses on use of unscheduled care and emergency presentation in multiple sclerosis: a case study. Int J MS Care. 2015;17:159–63.

    Article  PubMed  PubMed Central  Google Scholar 

  21. Strupp J, Dose C, Kuhn U, Galushko M, Duesterdiek A, Ernstmann N, et al. Analysing the impact of a case management model on the specialised palliative care multi-professional team. Support Care Cancer. 2018;26:673–9.

    Article  PubMed  Google Scholar 

  22. Wynia K, Annema C, Nissen H, de Keyser J, Middel B. Design of a Randomised Controlled Trial (RCT) on the effectiveness of a Dutch patient advocacy case management intervention among severely disabled Multiple Sclerosis patients. BMC Health Serv Res. 2010;10:142.

    Article  PubMed  PubMed Central  Google Scholar 

  23. Ewers M, Schaeffer D, editors. Case Management in Theorie und Praxis. Bern: Huber; 2005.

    Google Scholar 

  24. Neuffer M. Case Management: Soziale Arbeit mit Einzelnen und Familien. 5th ed. Weinheim, Basel: Beltz Juventa; 2013.

    Google Scholar 

  25. Case Management Society of America. The standards of practice for case management. 2022.

    Google Scholar 

  26. Deutsche Gesellschaft für Care und Case Management e.V., editor. Case Management Leitlinien: Rahmenempfehlung, Standards und ethische Grundlagen. 2nd ed. Heidelberg: Medhochzwei; 2020.

  27. Monzer M. Case Management Grundlagen. 2nd ed. Heidelberg: Medhochzwei; 2018.

  28. Wissert M. Grundfunktionen und fachliche Standards des Unterstützungsmanagements. Z Gerontol Geriat. 1998;31(5):331–7.

    Article  CAS  Google Scholar 

  29. Wissert M. Tools und Werkzeuge beim Case Management: Die Hilfeplanung. Case Manag. 2007;1:35–7.

    Google Scholar 

  30. Schaeffer D, Berens E-M, Vogt D. Health literacy in the German population. Dtsch Arztebl Int. 2017;114:53–60.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Pfaff H, Schulte H. Der onkologische Patient der Zukunft. Onkologe. 2012;18:127–33.

    Article  Google Scholar 

  32. Pfaff H, Kowalski C, Ommen O. Modelle zur Analyse von Integration und Koordination im Versorgungssystem. In: Ameldung, Sydow, Windeler, editor. Vernetzung im Gesundheitswesen: Wettbewerb und Kooperation. Stuttgart: Kohlhammer Verlag; 2009. p. 75–90.

  33. Golla H, Mammeas S, Galushko M, Pfaff H, Voltz R. Unmet needs of caregivers of severely affected multiple sclerosis patients: A qualitative study. Palliat Support Care. 2015;13(6):1685–93.

    Article  PubMed  Google Scholar 

  34. Golla H, Galushko M, Pfaff H, Voltz R. Multiple sclerosis and palliative care - perceptions of severely affected multiple sclerosis patients and their health professionals: a qualitative study. BMC Palliat Care. 2014;13:11.

    Article  PubMed  PubMed Central  Google Scholar 

  35. Golla H, Galushko M, Pfaff H, Voltz R. Unmet needs of severely affected multiple sclerosis patients: the health professionals’ view. Palliat Med. 2012;26:139–51.

    Article  PubMed  Google Scholar 

  36. Methley AM, Chew-Graham CA, Cheraghi-Sohi S, Campbell SM. A qualitative study of patient and professional perspectives of healthcare services for multiple sclerosis: implications for service development and policy. Health Soc Care Community. 2017;25:848–57.

    Article  PubMed  Google Scholar 

  37. Kalb R, Costello K, Guiod L. Case management services to meet the complex needs of patients with multiple sclerosis in the community—the successes and challenges of a unique program from the national multiple sclerosis society. US Neurology. 2019;15:27–31.

    Google Scholar 

  38. Krüger K, Fricke LM, Dilger E-M, Thiele A, Schaubert K, Hoekstra D, et al. How is and how should healthcare for people with multiple sclerosis in Germany be designed?-The rationale and protocol for the mixed-methods study Multiple Sclerosis-Patient-Oriented Care in Lower Saxony (MS-PoV). PLoS One. 2021;16:e0259855.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  39. Ivancevic S, Weegen L, Korff L, Jahn R, Walendzik A, Mostardt S, et al. Effektivität und Kosteneffektivät von Versorgungsmanagement-Programmen bei Multipler Sklerose in Deutschland – Eine Übersichtsarbeit. Akt Neurol. 2015;42:503–8.

    Article  Google Scholar 

  40. Müller A, Dillen K, Dojan T, Ungeheuer S, Goereci Y, Dunkl V, et al. Development of a long-term cross-sectoral case and care management manual for patients with severe multiple sclerosis and their caregivers. Prof Case Manag. 2023;28:183–93.

    Article  PubMed  Google Scholar 

  41. Golla H, Dillen K, Hellmich M, Dojan T, Ungeheuer S, Schmalz P, et al. Communication, Coordination, and Security for People with Multiple Sclerosis (COCOS-MS): a randomised phase II clinical trial protocol. BMJ Open. 2022;12:e049300.

    Article  PubMed  PubMed Central  Google Scholar 

  42. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19:349–57.

    Article  PubMed  Google Scholar 

  43. Kuckartz U. Qualitative Inhaltsanalyse: Methoden, Praxis, Computerunterstützung. 4th ed. Weinheim: Beltz Juventa; 2018.

    Google Scholar 

  44. Akyirem S, Ekpor E, Aidoo-Frimpong GA, Salifu Y, Nelson LE. Online interviews for qualitative health research in Africa: a scoping review. Int Health. 2023.

    Article  PubMed  PubMed Central  Google Scholar 

  45. Peasgood T, Bourke M, Devlin N, Rowen D, Yang Y, Dalziel K. Randomised comparison of online interviews versus face-to-face interviews to value health states. Soc Sci Med. 2023;323:115818.

    Article  PubMed  PubMed Central  Google Scholar 

  46. Giordano A, Cimino V, Campanella A, Morone G, Fusco A, Farinotti M, et al. Low quality of life and psychological wellbeing contrast with moderate perceived burden in carers of people with severe multiple sclerosis. J Neurol Sci. 2016;366:139–45.

    Article  PubMed  Google Scholar 

  47. Joo JY, Liu MF. Experiences of case management with chronic illnesses: a qualitative systematic review. Int Nurs Rev. 2018;65(1):102–1113.

    Article  CAS  PubMed  Google Scholar 

  48. Freeman J, Gorst T, Gunn H, Robens S. “A non-person to the rest of the world”: experiences of social isolation amongst severely impaired people with multiple sclerosis. Disabil Rehabil. 2020;42:2295–303.

    Article  PubMed  Google Scholar 

  49. National Institute for Health and Care Excellence. Multiple sclerosis: Management of multiple sclerosis in primary and secondary care. 2014.

    Google Scholar 

  50. Erdmann A, Spoden C, Hirschberg I, Neitzke G. The wish to die and hastening death in amyotrophic lateral sclerosis: A scoping review. BMJ Support Palliat Care. 2021;11:271–87.

    Article  PubMed  PubMed Central  Google Scholar 

  51. Erlangsen A, Stenager E, Conwell Y, Andersen PK, Hawton K, Benros ME, et al. Association between neurological disorders and death by suicide in Denmark. JAMA. 2020;323:444–54.

    Article  PubMed  PubMed Central  Google Scholar 

  52. Kalb R, Feinstein A, Rohrig A, Sankary L, Willis A. Depression and suicidality in multiple sclerosis: red flags, management strategies, and ethical considerations. Curr Neurol Neurosci Rep. 2019;19:77.

    Article  PubMed  PubMed Central  Google Scholar 

  53. Feinstein A, Pavisian B. Multiple sclerosis and suicide. Mult Scler. 2017;23:923–7.

    Article  PubMed  Google Scholar 

  54. Marrie RA, Salter A, Tyry T, Cutter GR, Cofield S, Fox RJ. High hypothetical interest in physician-assisted death in multiple sclerosis. Neurology. 2017;88:1528–34.

    Article  PubMed  Google Scholar 

  55. Gauthier S, Mausbach J, Reisch T, Bartsch C. Suicide tourism: a pilot study on the Swiss phenomenon. J Med Ethics. 2015;41:611–7.

    Article  PubMed  Google Scholar 

  56. Fischer S, Huber CA, Imhof L, MahrerImhof R, Furter M, Ziegler SJ, Bosshard G. Suicide assisted by two Swiss right-to-die organisations. J Med Ethics. 2008;34:810–4.

    Article  CAS  PubMed  Google Scholar 

  57. Strupp J, Ehmann C, Galushko M, Bücken R, Perrar KM, Hamacher S, et al. Risk factors for suicidal ideation in patients feeling severely affected by multiple sclerosis. J Palliat Med. 2016;19:523–8.

    Article  PubMed  Google Scholar 

  58. Spence RA, Blanke CD, Keating TJ, Taylor LP. Responding to patient requests for hastened death: physician aid in dying and the clinical oncologist. J Oncol Pract. 2017;13:693–9.

    Article  PubMed  PubMed Central  Google Scholar 

  59. Monforte-Royo C, Villavicencio-Chávez C, Tomás-Sábado J, Balaguer A. The wish to hasten death: a review of clinical studies. Psychooncology. 2011;20:795–804.

    Article  PubMed  Google Scholar 

  60. Blanke C, LeBlanc M, Hershman D, Ellis L, Meyskens F. Characterizing 18 years of the death with dignity act in Oregon. JAMA Oncol. 2017;3:1403–6.

    Article  PubMed  Google Scholar 

  61. Methley A, Campbell S, Cheraghi-Sohi S, Chew-Graham C. Meeting the mental health needs of people with multiple sclerosis: a qualitative study of patients and professionals. Disabil Rehab. 2017;39(11):1097-105.

  62. Hudon C, Bisson M, Chouinard M-C, Delahunty-Pike A, Lambert M, Howse D, et al. Implementation analysis of a case management intervention for people with complex care needs in primary care: a multiple case study across Canada. BMC Health Serv Res. 2023;23:377.

    Article  PubMed  PubMed Central  Google Scholar 

  63. Beckmann M, Dittmer K, Jaschke J, Karbach U, Köberlein-Neu J, Nocon M, et al. Electronic patient record and its effects on social aspects of interprofessional collaboration and clinical workflows in hospitals (eCoCo): a mixed methods study protocol. BMC Health Serv Res. 2021;21:377.

    Article  PubMed  PubMed Central  Google Scholar 

  64. Campanella P, Lovato E, Marone C, Fallacara L, Mancuso A, Ricciardi W, Specchia ML. The impact of electronic health records on healthcare quality: a systematic review and meta-analysis. Eur J Public Health. 2016;26:60–4.

    Article  PubMed  Google Scholar 

  65. García-Hernández M, González de León B, Barreto-Cruz S, Vázquez-Díaz JR. Multicomponent, high-intensity, and patient-centered care intervention for complex patients in transitional care: SPICA program. Front Med (Lausanne). 2022;9:1033689.

    Article  PubMed  Google Scholar 

  66. Meisinger C, Stollenwerk B, Kirchberger I, Seidl H, Wende R, Kuch B, Holle R. Effects of a nurse-based case management compared to usual care among aged patients with myocardial infarction: results from the randomized controlled KORINNA study. BMC Geriatr. 2013.

    Article  PubMed  PubMed Central  Google Scholar 

  67. Joo JY, Huber DL. Case management effectiveness on health care utilization outcomes: a systematic review of reviews. West J Nurs Res. 2019;41:111–33.

    Article  PubMed  Google Scholar 

  68. Stergiopoulos V, Gozdzik A, Misir V, Skosireva A, Connelly J, Sarang A, et al. Effectiveness of housing first with intensive case management in an ethnically diverse sample of homeless adults with mental illness: a randomized controlled trial. PLoS One. 2015;10:e0130281.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  69. Löcherbach P, Wendt R, editors. Care und Case Management: Transprofessionelle Versorgungsstrukturen und Netzwerke. 1st ed. Stuttgart: Kohlhammer; 2020.

  70. EAPC2023 Abstract Book. Palliat Med. 2023;37:1–302.

    Article  Google Scholar 

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We would like to thank all the patients, caregivers and health care specialists who volunteered their time to participate in an interview and the trial, Carola Janßen for transcribing the interviews, Fiona Brown for translating the illustrative quotes and Beatrix Münzberg, Kerstin Weiß and Monika Höveler for data collection in the quantitative study part.

COCOS-MS Trial Group

Anne Müller1, Fabian Hebben1, Kim Dillen1, Veronika Dunkl1, Yasemin Goereci2, Raymond Voltz1,3,4, Peter Löcherbach5, Clemens Warnke2, Heidrun Golla1, Dirk Müller6, Dorthe Hobus1, Eckhard Bonmann7, Franziska Schwartzkopff8, Gereon Nelles9, Gundula Palmbach8, Herbert Temmes10, Isabel Franke1, Judith Haas10, Julia Strupp1, Kathrin Gerbershagen7, Laura Becker-Peters8, Lothar Burghaus11, Martin Hellmich12, Martin Paus8, Solveig Ungeheuer1, Sophia Kochs1, Stephanie Stock6, Thomas Joist13, Volker Limmroth14

1Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany

2Department of Neurology, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany

3Center for Integrated Oncology Aachen Bonn Cologne Düsseldorf (CIO ABCD), University of Cologne, Cologne, Germany

4Center for Health Services Research (ZVFK), University of Cologne, Cologne, Germany

5German Society of Care and Case Management e.V. (DGCC), Münster, Germany

6Institute for Health Economics and Clinical Epidemiology (IGKE), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany

7Department of Neurology, Klinikum Köln, Cologne, Germany

8Clinical Trials Centre Cologne (CTCC), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany

9NeuroMed Campus, MedCampus Hohenlind, Cologne, Germany

10German Multiple Sclerosis Society Federal Association (DMSG), Hannover, Germany

11Department of Neurology, Heilig Geist-Krankenhaus Köln, Cologne, Germany

12Institute of Medical Statistics and Computational Biology (IMSB), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany

13Academic Teaching Practice, University of Cologne, Cologne, Germany

14Department of Neurology, Klinikum Köln-Merheim, Cologne, Germany


Open Access funding enabled and organized by Projekt DEAL. This work was supported by the Innovation Funds of the Federal Joint Committee (G-BA), grant number: 01VSF19029.

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Authors and Affiliations




HG, KD, CW designed the trial. HG, KD obtained ethical approvals. HG, KD developed the interview guidelines with help of the CCM (SU). AM was responsible for collecting qualitative data, developing the code system, coding, analysis of the data and writing the first draft of the manuscript, thoroughly revised and partly rewritten by HG. FH supported in collecting qualitative data, coding and analysis of the interviews. KD supported in collecting qualitative data. AM, FH, KD, VD, YG, RV, PL, CW, HG discussed and con-solidated the finalized category system. AM, FH, KD, VD, YG, RV, PL, CW, HG read and commented on the manuscript and agreed to the final version.

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Correspondence to Anne Müller.

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Ethics approval and consent to participate

Participants were provided with oral and written information about the trial and provided written informed consent. Ethical approval was obtained from the Ethics Committee of the University of Cologne (#20–1436). The trial is registered in the German Register for Clinical Studies (DRKS) (DRKS00022771) and is conducted under the Declaration of Helsinki.

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Not applicable.

Competing interests

Clemens Warnke has received institutional support from Novartis, Alexion, Sanofi Genzyme, Janssen, Biogen, Merck and Roche. The other authors declare that they have no competing interests.

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Müller, A., Hebben, F., Dillen, K. et al. “So at least now I know how to deal with things myself, what I can do if it gets really bad again”—experiences with a long-term cross-sectoral advocacy care and case management for severe multiple sclerosis: a qualitative study. BMC Health Serv Res 24, 453 (2024).

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