Palliative care for in-patient malignant glioma patients in Germany.

OBJECTIVE: Malignant gliomas impose a significant symptomatic burden on patients and their families. Current guidelines recommend palliative care for patients with advanced tumors within eight weeks of diagnosis, emphasizing early integration for malignant glioma cases. However, the utilization rate of palliative care for these patients in Germany remains unquantified. This study investigates the proportion of malignant glioma patients who either died in a hospital or were transferred to hospice care from 2019 to 2022, and the prevalence of in-patient specialized palliative care interventions. METHODS: In this cross-sectional, retrospective study, we analyzed data from the Institute for the Hospital Remuneration System (InEK GmbH, Siegburg, Germany), covering 2019 to 2022. We included patients with a primary or secondary diagnosis of C71 (malignant glioma) in our analysis. To refine our dataset, we identified cases with dual-coded primary and secondary diagnoses and excluded these to avoid duplication in our final tally. The data extraction process involved detailed scrutiny of hospital records to ascertain the frequency of hospital deaths, hospice transfers, and the provision of complex or specialized palliative care for patients with C71-coded diagnoses. Descriptive statistics and inferential analyses were employed to evaluate the trends and significance of the findings. RESULTS: From 2019 to 2022, of the 101,192 hospital cases involving malignant glioma patients, 6,129 (6% of all cases) resulted in in-hospital mortality, while 2,798 (2.8%) led to hospice transfers. Among these, 10,592 cases (10.5% of total) involved the administration of complex or specialized palliative medical care. This provision rate remained unchanged throughout the COVID-19 pandemic. Notably, significantly lower frequencies of complex or specialized palliative care implementation were observed in patients below 65 years (p < 0.0001) and in male patients (padjusted = 0.016). In cases of in-hospital mortality due to malignant gliomas, 2,479 out of 6,129 cases (40.4%) received specialized palliative care. CONCLUSION: Despite the poor prognosis and complex symptomatology associated with malignant gliomas, only a small proportion of affected patients received advanced palliative care. Specifically, only about 10% of hospitalized patients with malignant gliomas, and approximately 40% of those who succumb to the disease in hospital settings, were afforded complex or specialized palliative care. This discrepancy underscores an urgent need to expand palliative care access for this patient demographic. Additionally, it highlights the importance of further research to identify and address the barriers preventing wider implementation of palliative care in this context.

"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.

BACKGROUND: 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. METHODS: 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. RESULTS: 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). CONCLUSIONS: 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.

"Such an institution represents the circle of life" - bringing an inpatient hospice into an academic setting: a pre-implementation exploratory study.

BACKGROUND: To combine the benefits of hospice and palliative care, the integration of both seems self-evident. Aim of this study was to explore clinical staff's and volunteers' expectations and concerns of the first university hospice in Germany planning for implementation. METHODS: Staff and volunteers of the Department of Palliative Medicine of the University Hospital in Cologne received questionnaires and were interviewed following three themes of interest: opportunities, challenges, general criteria. Questionnaire results were analyzed descriptively using mean ± SD and percentages, open-ended questions and interviews were analysed using content analysis. RESULTS: A total of 28/100 questionnaires was returned (n = 17 clinical staff, n = 11 volunteers) and 18 interviews conducted. The majority of both clinical staff and volunteers estimated the need for a university inpatient hospice as rather to very high (64.7% and 81.8%, respectively). Our findings revealed that most clinical staff and volunteers anticipated improvements with the intended university inpatient hospice, although their expectations were divided between both hope and concern while adhering to legal and general requirements, which they feared might oppose such a project. Participants expressed concern about leadership and staffing plans, albeit most pronounced among clinical staff. Nursing staff repeatedly articulated concerns about being interchanged between the palliative care ward and the intended inpatient hospice while they had explicitly chosen to work in palliative medicine. CONCLUSIONS: The overall high level of anticipated progress and excitement is very encouraging. Albeit serious concerns were mentioned, our results indicate that all participants believe in a positive impact and highlight the need of developing a solid concept. In order to implement such a hospice within a university setting, it is important to consider multilevel contextual factors such as system-level factors (funding, external and internal regulations), organization-level factors (leadership, staff motivation), and patient-level factors (adaptability to patients' needs). Our findings illustrate the importance of understanding the context of practice before implementation. Our pre-implementation study helps identify critical views from staff members and volunteers that may hinder or advance the implementation. TRIAL REGISTRATION: The study was registered at the German Clinical Trials Register (#DRKS00021258) on April 17th 2020.

Cultural adaptation of the Integrated Palliative care Outcome Scale for neurological symptoms.

OBJECTIVES: Standardized measures for assessing neurological patients needing palliative care remain scarce. The Integrated Palliative care Outcome Scale for neurological patients in its short form (IPOS Neuro-S8) helps assess and identify patients' symptom burden and needs early but has not yet been validated in German. The aim was to culturally adapt and translate the IPOS Neuro-S8 into the German health-care context and evaluate its face and content validity. METHODS: Cultural adaptation study following the first 6 out of 8 phases of the Palliative care Outcome Scale measures manual: (1) conceptual definition, (2) forward translation to German, (3) backward translation to English, (4) expert review, (5) cognitive debriefing, (6) proofreading. Neurological patients needing palliative care and clinical staff of the Department of Palliative Medicine or Neurology of the University Hospital of Cologne were included. Data were analyzed using thematic content analysis and descriptive statistics. RESULTS: A total of 13 patients and 16 clinical staff participated in this study. The expert review panel (phase 4) consisted of 11 additional members. While patients (n = 9) and clinical staff (n = 11) confirmed that the IPOS Neuro-S8 is an intelligible tool that is well accepted (phase 5), some linguistic and cultural differences were found between the original English and German versions. These mainly concerned the items mouth problems and spasms. SIGNIFICANCE OF RESULTS: The German version of the IPOS Neuro-S8 has demonstrated face and content validity and captures relevant symptoms of neurological patients needing palliative care. Its psychometric properties, including construct and criterion validity, will be investigated next.

What's in a name? That which we call Multiple Sclerosis Fatigue.

Very limited progress has been made to date in the treatment of debilitating Multiple Sclerosis (MS) daily onset symptoms. These daily symptoms include motor, sensory, and cognitive impairments as well as an overwhelming feeling of tiredness, often referred to as "MS fatigue." Although widely cited as a main cause of inability to work and poor quality of life in patients with MS, daily onset MS-related tiredness continues to defy definition, and, consequently, measurement and treatment. Beginning with a historical overview of observations of daily onset MS-related tiredness, this Topical Review demonstrates how the misnomer "MS fatigue" has introduced ongoing misunderstanding for patients, investigators, clinicians, and therapists. Finally, combining current findings in clinical neuroscience with the striking set of long-standing commonalities present throughout the past 200 years of clinical observations, we underscore the immediate necessity for conceptual and applied change, to be initiated by the renaming of this distinct syndrome.

Communication about the desire to die: Development and evaluation of a first needs-oriented training concept - A pilot study.

OBJECTIVE: Patients' desire to die (DD) is rarely discussed in palliative care (PC) due to health professionals' (HPs) feeling of uncertainty. The aim of the study was to develop and evaluate a training to increase HPs' self-confidence in responding professionally to patient's DD and to assess the feasibility of this approach. METHODS: The training course was developed via focus groups and relevant literature and refined with an advisory board. An evaluation design was developed to evaluate training outcomes and to examine feasibility. To assess self-confidence, knowledge, skills, and attitudes: (1) standardized surveys were applied at T1 (before training), T2 (directly after), and T3 (3 months later), and were analyzed by descriptive and non-parametric statistics; and (2) participants' open feedback was summarized by content. RESULTS: A two-day multi-disciplinary training was developed to improve self-confidence via diverse teaching methods. Twenty-four HPs from general and specialized PC were participated. Via self-rating on Likert scales at three time points, improvements were seen at T1, T2, and partly remained at T3, especially in the overall item of self-confidence in communicating with patients about their DD (means: 4.3. at T1, 5.7 at T2, and 5.9 at T3; on a 7-point scale with 1 = lowest value and 7 = highest value). Fewer improvements were found in skills (using different approaches) and attitudes (feeling less helplessness). Open feedback revealed a high appreciation for the training, especially the composition of participants, the role-play, and the overall increase of awareness of the topic. SIGNIFICANCE OF RESULTS: The developed training on addressing DD meets a need and was perceived by the participants to be of added value. Future research should measure training effects with a validated instrument, including more participants, diverse participant groups, and a control group. Effects on patients should be assessed.

Validation of a palliative care outcome measurement tool supplemented by neurological symptoms (HOPE+): Identification of palliative concerns of neurological patients.

BACKGROUND: There is growing interest to integrate palliative care and its structures into the care of neurological patients. However, in Germany there is no comprehensive assessment tool capturing the symptoms of patients with advanced neurological diseases. AIM: To validate a newly developed palliative care measurement tool based on an extension of the validated core documentation system Hospice and Palliative Care Evaluation considering additional neurological issues (HOPE+). DESIGN: Prospective, observational study using HOPE+ and as external criteria, the Eastern Cooperative Oncology Group (ECOG) performance status and the 12 months "surprise" question (12-SQ) in a neurological population, and assessment for its construct validity and diagnostic accuracy. SETTING/PARTICIPANTS: All newly admitted patients to the Department of Neurorehabilitation, Dr. Becker Rhein-Sieg-Clinic aged 18-100 years (#DRKS00010947). RESULTS: Data from 263 patients (63 ± 14 years of age) were analyzed. HOPE+ revealed a moderately correlated six-factor structure (r = -0.543-0.525). Correlation analysis to evaluate discriminant validity using ECOG as external criterion was high (rs(261) = 0.724, p < 0.001) and confirmed for severely affected patients by adding the 12-SQ ("No"-group: 48.00 ± 14.92 vs "Yes"-group: 18.67 ± 7.57, p < 0.009). Operating characteristics show satisfactory diagnostic accuracy (area under the curve: 0.746 ± 0.049, 95% confidence interval = 0.650-0.842). CONCLUSION: HOPE+ demonstrates promising psychometric properties. It helps to assess palliative care issues of patients in neurological settings and, in combination with the 12-SQ, conceivably conditions when to initiate the palliative care approach in a population underrepresented in palliative care structures so far.

[Spirituality in old age as dynamic aging task]. / Spiritualität im höheren Lebensalter als dynamische Alter(n)saufgabe.

BACKGROUND: A multitude of studies have demonstrated a positive effect of spirituality for dealing with difficult situations in life; however, specific studies on spirituality in older age are exceptionally rare within the German gerontological research landscape. The theory of gerotranscendence by Tornstam indicates that spirituality is of particular importance for maintaining life satisfaction especially in older age, due to a change in perspective. OBJECTIVES: This study looked into the research questions of how spirituality is presented in the oldest old (80 years and older) in Germany and to what extent its characteristics are specific to older age. MATERIAL AND METHODS: Problem-centered interviews were conducted with 20 oldest old subjects and evaluated using qualitative content analysis. RESULTS: Spirituality in itself is not specific to very old age. Its shaping, however, as an existential process of transformation and redefinition, is specific in the oldest old due to their socialization and biographical experiences over the life course impregnated by processes of subjectification and individualization. In addition, its relation to existential questions gains increasing relevance and priority in very old age in an affective, reflective and performative dimension, and the answers change between fragility and continuity. CONCLUSION: As a heterogeneous (intermediate) result of experiences over the life course against the background of socialization and individual existential interpretation of "Self" and "World", spirituality in the oldest old should be perceived in this diverse and dynamic manner in research and practice, in order to foster well-being in old age.

Clinical routine assessment of palliative care symptoms and concerns and caregiver burden in glioblastoma patients: an explorative field study.

The implementation of self-reported outcome measurements into clinical routine was tested to help facilitate early access to palliative care (PC) for glioblastoma (GBM)-patients. Measures detail PC symptoms and concerns and caregiver burden. Between January 2014 and December 2016, a total of 337 GBM-patients were discussed during meetings of the neuro-oncology tumor board to examine further treatment options. Each patient, along with their caregivers, was requested to participate in self-assessment using the palliative outcome scale (POS) and the Zarit Burden Interview (ZBI). Analyses encompassed summary statistics, non-parametric tests, visual graphic analysis, content analysis and assessing the utilization of the specialized PC consulting service (SPCCS). Ninety-five (28%) GBM-patients and 71 (21%) caregivers completed the self-assessment. Of these, 20 patients and 12 caregivers repeated the assessment at least once more during follow-up. POS total scores were similar in the group of patients with initial diagnosis [10 (0-31)] and those with later disease stages like recurrent diagnosis [9 (0-25)], but ZBI total scores differed [14 (0-51) vs. 24 (2-62)]. Single item analysis demonstrated that anxiety and worries about the future predominated. Caregivers were torn between high engagement in caring and feeling overburdened. Still, requests for the SPCCS showed no increase. Actual implementation of measures like POS and ZBI for detecting PC concerns and caregiver burden with GBM-patients in the field remains challenging as indicated by the limited response rate and lack of increased requests for the SPCCS. Modified clinical routines including strengthening awareness of PC, and allowing proxy-assessment might help to overcome barriers.

Analysing the impact of a case management model on the specialised palliative care multi-professional team.

PURPOSE: Palliative care (PC) involves many health care providers leading to a high complexity of structures that requires efficient coordination as provided by case management (CM). Our study aimed to evaluate the effects of CM newly implemented in a specialised palliative care unit by evaluating team members' tasks and time resources before (T0) and after implementation (T1). It was hypothesised that team members would be able to spend less time on organisational and administrative tasks and more time on patient care. METHODS: A prospective pre-post study design was used. Time distribution of different tasks at T0 and T1 was compared between three different professional groups: physicians, nursing staff and social work. To document their tasks and time required, a documentation form with several items for each profession was developed. Data was analysed using t tests for independent samples. RESULTS: After Bonferroni correction, a significant pre-post difference was found for the time spent on "discharge interview and discharge" as rated by the physicians (p < .001) with less time spent on this activity after CM implementation. The nursing staff had significantly more time for "conversations with patients" (p < .001) after CM implementation. Moreover, they spent significantly less time on "patient-related requests/advice by telephone" (p < .001) and "discussions with relatives/participation in family discussions" at post-assessment (p < .001). The social worker had significantly more time for "patient advice and support services" (p = .013) after CM implementation. CONCLUSIONS: Integrating CM can be time efficient and ensures team members to spend more time on their core tasks in patient care.

Needs of people with advanced dementia in their final phase of life: A multi-perspective qualitative study in nursing homes.

BACKGROUND: People with advanced dementia present an important target group for palliative care. They suffer a range of symptoms, and their verbal communication abilities are highly restricted. At present, little is known about their needs in the final phase of life. AIM: To identify the needs of people with advanced dementia in their final phase of life and to explore the aspects relevant to first recognize and then meet these needs. DESIGN: Multi-perspective qualitative study using grounded theory methodology conducting group discussions, individual interviews, and participant observation. SETTING/PARTICIPANTS: The study encompassed nursing homes and involved health professionals, relatives, and residents with advanced dementia. RESULTS: Data were collected in six nursing homes. Nine group discussions and three individual interviews were conducted comprising 42 health professionals and 14 relatives. Participant observations aided in giving the perspective of 30 residents with advanced dementia. Data analysis generated a total of 25 physical, psychosocial, and spiritual needs divided into 10 categories. Physical needs were classified as follows: "food intake," "physical well-being," and "physical activity and recovery." Categories of psychosocial needs were classified as follows: "adaptation of stimuli," "communication," "personal attention," "participation," "familiarity and safety," as well as "self-determination." Spiritual needs addressed "religion." The results revealed a multitude of key aspects for recognizing and meeting these needs, stressing the importance of personhood. CONCLUSION: People with advanced dementia in their final phase of life have a multitude of individual and complex needs. This evidence contributes to narrowing the current research gap, offering an orientation framework for research and practice.

European Association for Neuro-Oncology (EANO) guidelines for palliative care in adults with glioma.

Patients with glioma present with complex palliative care needs throughout their disease trajectory. The life-limiting nature of gliomas and the presence of specific symptoms related to neurological deterioration necessitate an appropriate and early palliative care approach. The multidisciplinary palliative care task force of the European Association of Neuro-Oncology did a systematic review of the available scientific literature to formulate the best possible evidence-based recommendations for the palliative care of adult patients with glioma, with the aim to reduce symptom burden and improve the quality of life of patients and their caregivers, particularly in the end-of-life phase. When recommendations could not be made because of the scarcity of evidence, the task force either used evidence from studies of patients with systemic cancer or formulated expert opinion. Areas of palliative care that currently lack evidence and thus deserve attention for further research are fatigue, disorders of behaviour and mood, interventions for the needs of caregivers, and timing of advance care planning.

Unmet needs of caregivers of severely affected multiple sclerosis patients: A qualitative study.

OBJECTIVE: Multiple sclerosis (MS) patients' caregivers are sometimes considered as "hidden patients." How much more this might be true for caregivers of severely affected MS patients has so far been scarcely studied. Palliative care also addressing relatives' needs might therefore be very relevant for these caregivers. However, we do not yet know which unmet needs they have and how these could be met. Our aim was to gain an insight into the subjectively unmet needs of caregivers of severely affected MS patients in Germany. METHOD: The study employed a qualitative cross-sectional approach for assessing unmet needs. Twelve caregivers of severely affected MS patients were recruited using a convenience sampling approach. Face-to-face interviews were conducted, audiotaped, and transcribed verbatim, followed by qualitative content analysis. RESULTS: Unmet needs were sorted into the following categories: "relationship to physician," "individual support by the healthcare system," "relationship to the individual severely affected by MS," "end-of-life issues," "self-care," and "higher awareness of MS." Caregivers tended to group the unmet needs of their care recipients with their own and rarely focused on their own wishes and restrictions. SIGNIFICANCE OF RESULTS: A close patient-caregiver dyad makes it difficult to differentiate unmet caregiver needs. However, the palliative care approach might help caregivers of severely affected MS patients by answering questions on disease progress and end-of-life issues, as well as by offering respite care, support for self-care, and help in preserving one's identity, and also anticipating the time to come after the death.

A palliative care hotline for multiple sclerosis: A pilot feasibility study.

OBJECTIVE: Research findings suggest that patients severely affected by multiple sclerosis benefit from palliative care. Our objectives were to (1) implement a pilot palliative care counseling hotline for severely affected multiple sclerosis patients and their caregivers in order to connect them to palliative care, and (2) evaluate its preliminary feasibility through a pilot study. METHOD: The hotline was designed in cooperation with the local state association of the German Multiple Sclerosis Society and based on a review of the literature. The initial study setting for the hotline was the broader region of the cities Cologne and Bonn in Germany. The hotline was introduced through a magazine published by the German Multiple Sclerosis Society and leaflets sent to local healthcare providers. Calls were conducted using a semistructured interview guide and documented by a standardized case report form. Measures to assess feasibility were both quantitative (e.g., number of calls) and qualitative (e.g., criteria for eligibility for palliative care). RESULTS: During its pilot year, the hotline received 18 calls. Some 15 callers were included in the analysis, and 10 of these 15 were deemed eligible for palliative care due to such criteria as medical characteristics, care or nursing conditions, caregiver strain, and concerns regarding death and dying. Access to palliative care services could be provided for all 10 callers. SIGNIFICANCE OF RESULTS: Based on our pilot feasibility study, the hotline seems to be a valuable service for patients severely affected by multiple sclerosis (MS) and their caregivers in order to gain information about and access to palliative care. It will be extended on a nationwide scale through a grant of the German Multiple Sclerosis Society. Awareness of the hotline needs to be enhanced in order to attract and support a significant number of new callers.

Self-rating makes the difference: identifying palliative care needs of patients feeling severely affected by multiple sclerosis.

OBJECTIVE: People feeling severely affected by multiple sclerosis (MS) comprise a heterogeneous group, and this heterogeneity leads to very distinct needs and makes planning for needs difficult. To provide optimal care, it is important to identify specific needs in specific subgroups. Our objective was to identify the specific palliative care (PC) needs of patients who felt severely affected by the disease by analyzing their feeling (1) more or (2) less severely affected and their possible differences in expressed care needs. METHOD: A self-report questionnaire with 25 needs categories including 7 categories pertaining to care was applied to patients who felt severely affected by MS. An additional single question identified patients feeling more (≥7, median-split) and less (<7) severely affected. Differences were analyzed by chi-squared and Mann-Whitney U tests. The sample (N = 573) was composed of respondents who replied to an invitation by the German Multiple Sclerosis Society to participate in a survey on unmet needs of severely affected patients. RESULTS: Of 573 patients (median age 51), 358 (62.48%) felt more severely affected. Compared to patients feeling less severely affected, they found the stress on their next of kin to be higher (p < 0.001), were in greater need of home visitation (p < 0.001), did not have permanent neurologists (p = 0.016), and felt that they visited them too rarely (p < 0.0001). They also needed more emotional support from their nursing care service (p = 0.006). SIGNIFICANCE OF RESULTS: A self-rating scale can identify two groups of patients with different care needs. These data may help shaping patient-centered support structures. Palliative care, with its multidisciplinary approach, might be one further option to meet the specific needs of patients and their relatives.

Glioblastoma multiforme from diagnosis to death: a prospective, hospital-based, cohort, pilot feasibility study of patient reported symptoms and needs.

PURPOSE: Glioblastoma (GBM) patients have many palliative care (PC) issues. To date, there are no studies examining the prospective usage of validated PC assessment tools as patient reported outcome measures for GBM patients. METHODS: GBM patients' PC issues were assessed from diagnosis to death or for at least 12 months every 7 weeks (±8 days) using semi-structured interviews and the Hospice and Palliative Care Evaluation (HOPE, including Eastern Cooperative Oncology Group (ECOG) performance status, 17 items) and the Palliative Outcome Scale (POS, 11 items). Data from patients who died within 12 months of the last patient's enrollment were evaluated using summarizing content analysis, visual graphical analysis (VGA), and linear mixed models for repeated measures. RESULTS: Nineteen of 33 patients screened were enrolled; two dropped out and four were still alive at the end of the study. The remaining 13 were assessed at 59 points until death (time range 4-68 weeks; 1-10 contacts per patient; assessment: self, 33; joint, 8; external, 18). VGA of the HOPE and POS data, including all 1,652 assessed item data, showed consistent trajectory profiles for 14 of 28 items: 10 were increasing (meaning symptom worsening) and comprised predominantly psychosocial issues and care dependency. Type of assessment partly interacted with time, however, not qualitatively so. Analysis of semi-structured interviews revealed delayed interactions with PC/hospice services and numerous neuropsychiatric problems not detected by HOPE and POS. CONCLUSIONS: Prospective self-assessment of GBM patients' PC issues is feasible. However, disease progression may necessitate further, external assessment. Modification of existing PC assessment tools is needed to detect GBM-specific issues.

Multiple sclerosis and palliative care - perceptions of severely affected multiple sclerosis patients and their health professionals: a qualitative study.

BACKGROUND: In Germany, patients severely affected by Multiple Sclerosis (MS) do not routinely come into contact with palliative care, even if possibly beneficial. This study was aimed at investigating how severely affected MS patients and their health professionals perceive palliative care to determine how to better approach these patients in Germany about this topic. METHODS: 15 patients feeling severely affected by MS and 23 health professionals experienced with MS patients (3 social workers, 7 nurses, and 13 physicians) in both in-/outpatient and rural/ urban settings participated in this qualitative study in Germany. Semi-structured interviews (patients, health professionals) and focus groups (health professionals) were conducted, transcribed verbatim and analyzed via qualitative content analysis. RESULTS: MS patients were mostly unfamiliar with the term "palliative care" or were aware of it only in relation to cancer and dying. They did not view it as relevant to themselves. Health professionals predominantly associated palliative care with dying cancer patients, if familiar with it at all. Most physicians doubted its relevance for neurological patients and denied MS as a cause of death. Nevertheless, most felt they already offered their patients sufficient palliative care, or thought that it could not meet MS patients' complex needs. Most nurses and social workers recognized deficits in existing care structures and regarded palliative care as an opportunity for MS patients. CONCLUSION: MS patients', and health professionals' restricted, death-associated awareness of palliative care leads to discomfort, fear or rejection of this idea. Therefore, a defined concept of palliative care emphasizing opportunities for severely affected MS patients and considering early integration should be spread throughout the German MS community as an additional layer of support for this patient group.

Persons with multiple sclerosis older than 55 years: an analysis from the German MS registry.

BACKGROUND: Persons with MS (PwMS) ≥ 55 years are underrepresented in therapy studies leading to a lack of evidence. OBJECTIVE AND METHODS: To study the subgroup of PwMS ≥ 55 years in the German MS registry in comparison with PwMS < 55 years. Endpoints of interest were the grade of disability, leading symptoms, clinical and magnetic resonance imaging activity, and use of disease modifying therapy. RESULTS: At the time of analysis, data from 40,428 PwMS were available for analysis. In PwMS aged ≥ 65 and PwMS aged ≥ 55 to 64 years, compared with PwMS aged < 55 years, the mean Expanded Disability Status Scale Scores were higher (5.3, 4.2 and 2.7, respectively), while the proportion of individuals with current use of disease modifying therapy was lower (42.6%, 60.9% and 76.7%, respectively). The older patient groups were more likely to be labeled with progressive MS and the frequency of occupational invalidity was high (38.8% in PwMS aged ≥ 55 to 64 years). Gait disorder, fatigue, bladder dysfunction, and spasticity were among the leading symptoms in PwMS aged ≥ 55 years. CONCLUSION: PwMS ≥ 55 years have a high degree of disability, but a large proportion do not receive disease modifying therapy, exposing an unmet need.