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The scientific use of SHI routine data is increasing, especially in the field of health services research. This also raises new questions with regard to the development of databases, which make it possible to store these data for longitudinal analyses over a longer period of time and by combining data from different SHI companies. On the basis of the experience gained in setting up the CoRe-Net database, we want to show that it is possible to install such a research infrastructure and make it usable in the long term.On the basis of the current regulatory framework (e. g. the added specification of § 75 SGB X) and taking into account strict data protection criteria, it is possible to set up a database covering several health insurance funds: In CoRe-Net, a pseudonymisation centre and a trust centre were implemented for this purpose. At the same time, multiple pseudonymisation was carried out using a one-way hash procedure. Data analysis are only possible after approval by the participating health insurance funds and if valid approval has been obtained from relevant ethics committees.The amendment of § 75 SGB X in 2018 creates a legal framework for the collection and storage of SHI routine data within the framework of a research project for future questions within a defined research area.ZIEL: Die wissenschaftliche Nutzung von GKV Routinedaten hat v. a. auch im Bereich der Versorgungsforschung immer mehr zugenommen. Dadurch ergeben sich auch neue Fragen in Bezug auf den Aufbau von krankenkassenübergreifenden Datenbanken, die eine längerfristige Speicherung dieser Daten für längsschnittliche Analysen möglich machen sollen. Anhand der Erfahrungen beim Aufbau der CoRe-Net Datenbank soll gezeigt werden, dass es möglich ist eine derartige Forschungsinfrastruktur zu installieren und langfristig nutzbar zu machen. METHODIK/ERGEBNISSE: Auf Basis der aktuellen geltenden Rahmenbedingungen (u. a. ergänzte Präzisierung des § 75 SGB X) und unter Berücksichtigung strenger datenschutzrechtlicher Kriterien ist es möglich eine krankenkassenübergreifende Datenbank aufzubauen: In CoRe-Net wurde dazu eine Pseudonymisierungs- und eine Vertrauensstelle implementiert. Gleichzeitig wird eine mehrfache Pseudonymisierung unter Nutzung eines Einweg-Hashverfahrens durchgeführt. Datenauswertungen sind nur nach Zustimmung durch die beteiligten Kassen und bei Vorliegen eines gültigen Ethikvotums möglich. SCHLUSSFOLGERUNG: Die Anpassung des § 75 SGB X in 2018 schaffte einen rechtlichen Rahmen, GKV-Routinedaten im Rahmen eines Forschungsvorhabens auch für künftige Fragestellungen im Rahmen eines definierten Forschungsbereichs zu erheben und zu speichern.

Background: General practitioners (GPs) are important providers and coordinators of palliative home care (PHC). Through this double role, their perspectives and their treatment decisions influence PHC fundamentally. This study aims to gain deeper insights into GPs’ perspectives regarding PHC in North Rhine, Germany. Methods: An explorative, semistructured focus group was conducted with 7 doctors. The researchers performed content analysis. Main topics were GPs’ role definition in PHC and GPs’ medical activities in PHC. Results: Participating GPs describe their role in PHC, based on high motivation and positive attitudes toward PHC as a hybrid role: coordinator, provider (mostly in general PHC), and referrer (gateway to palliative care [PC] specialists). According to GPs’ medical activity, participants describe moderate expertise, demanding tasks, and elaborate PHC provision for GPs. Participants stressed the importance of PC in GPs’ work. But also PC is a small field in general practice. GPs’ PHC benefits from the deep trust resulting from the often close and long-term GP–patient relationship. Complexity and bureaucracy of PHC structures as well as the lack of resources and multidisciplinary cooperation are named as barriers for providing PHC. The highest level of care is reached in specialized PHC, which only very few, severely impaired patients need. Conclusions: Participating GPs see themselves as important PHC providers as well as referrers and coordinators. Complexity and discontinuity in PC arrangements create challenges for their provision. Therefore, they long for reduced bureaucratic burdens.

The aim of palliative care is to optimize the quality of life of patients with incurable advanced diseases. Adequate psychotherapeutic and psychiatric care is essential in this context.This article presents the recommendations of the S3 guideline on palliative care for patients with incurable cancer with regard to psychotherapeutic and psychiatric contents.The guideline was developed under the leadership of the German Society for Palliative Medicine (DGP) within the methodological framework of the German Guideline Program in Oncology. Systematic literature reviews were carried out to identify relevant publications in the databases Medline, Cochrane Library, PsycInfo and Embase. Based on the publications included and clinical experience, representatives of 61 professional associations developed and agreed on evidence-based and consensus-based recommendations.Out of the total of 15 chapters in the guidelines, four have a special reference to psychiatry or psychotherapy; they cover the topics depression, anxiety, delirium in the dying phase and dealing with the desire to die. These chapters contain a total of 71 recommendations, almost one third of which are evidence-based. In view of the regularly undetected psychological symptoms in patients with incurable cancer, an early assessment is recommended. Optimal control of physical symptoms and support in social and existential matters are general measures that should be provided in addition to non-pharmacological and pharmacological procedures.The guideline on palliative care deals with important mental issues that should be considered by all disciplines and professions. The need for research in palliative care remains high.

In einer Onlineumfrage wurden neurologische Chefarzte befragt, wie sie fur neurologische Patienten (NP) den Bedarf an, den Zugang zu und die Zusammenarbeit mit Palliativ- und Hospizstrukturen (PHS) einschatzten. 110 der 881 angeschriebenen Chefarzte nahmen teil. Ca. 10 % ihrer NP stuften sie als Palliativpatienten ein. Bei 9 % ihrer NP hielten sie die neurologische Erkrankung fur die zugrunde liegende Todesursache. Die Integration von PHS befurworteten sie bei einer Vielzahl neurologischer Erkrankungen, gaben aber keine oder nur seltene Zusammenarbeit in 51,9 %–78,5 % an. 12 % der Teilnehmenden verfugten uber eine Weiterbildung in Palliativmedizin. Um auch NP eine adaquate palliativmedizinische und hospizliche Versorgung zu ermoglichen, sollte zum einen Wissen daruber vermehrt Eingang in die neurologische Aus- und Weiterbildung finden und sollten zum anderen PHS sich auch auf die speziellen Bedurfnisse, Problemstellungen und Krankheitsverlaufe von NP ausrichten.

Objective Desires for hastened death (DHD; wish to hasten death is also in use) are prevalent in terminally ill patients. Studies show that health professionals (HP) are often underprepared when presented with DHD. HPs in specialized palliative care (SPC-HP) often encounter DHD. This study aimed to identify SPC-HP responses to DHD in daily practice and their corresponding functions. Methods Narrative interviews were conducted with 19 SPC-HPs at four German University Hospitals. Transcripts were analyzed using the documentary method. An inventory of established responses to DHD was compiled, and their corresponding functions in the context of the patient–SPC-HP interaction were reconstructed. Results Twelve response categories and six corresponding functions were identified. On the patient level, responses categorized as symptom control, exploring the reasons and generating perspective, reorientation, and hope were particularly used to ease the patient's burden. On the interaction level, creating a relationship was fundamental. On the SPC-HP level, various methods served the functions self-protection and showed professional expertise. Conclusions Profound personal and professional development is necessary to respond to the inherent challenges presented by DHD. Establishing helpful relationships with patients is essential regardless of SPC-HP specialization. SPC-HPs should maximize their skills in establishing and maintaining relationships as well as strengthening their own resilience, possibly in specific training courses. Copyright © 2015 John Wiley & Sons, Ltd.

In Germany the structures of generalized and specialized palliative care services have considerably increased over the last decade with respect to the number, quality and differentiation. The goal is to improve or to maintain the quality of life for patients with life-threatening illnesses.The current structures of generalized and specialized palliative care services in Germany are presented.The structures of healthcare services are presented primarily based on the S3 guidelines on palliative care for patients with incurable cancer. An extrapolation to all patients with incurable illnesses and limited life-expectancy has been carried out.Palliative care in Germany can be differentiated into two sectors. Generalized palliative care provides care for patients with a low or moderately complex situation on general hospital and oncology wards, in long-term care facilities and in the domestic environment. Specialized palliative care services manage patients with a highly complex situation in palliative care units, by a palliative care support team in hospitals or in palliative medical day care centers and as outpatients in specialized outpatient palliative home care, in specialized palliative outpatient clinics or day care hospices. Inpatient hospices and the outpatient hospice services are overlapping sectors and can be assigned to both generalized and specialized palliative care.Despite a good development in recent years, a nationwide and sufficient provision of palliative care services has still not been achieved and some services have hardly been developed, e. g. palliative outpatient clinics. Hospital palliative care support teams should soon be available in all hospitals caring for patients with life-threatening illnesses, due to the requirements of the Hospice and Palliative Care Act from 2015.

BACKGROUND: A polyspecific, intrathecal humoral immune response against neurotropic viruses such as measles, rubella and varicella zoster virus (MRZ reaction, MRZR) is present in 80-100% of patients with multiple sclerosis (MS), but has not to date been evaluated in patients with neuromyelitis optica (NMO). AIMS: To evaluate whether MRZR distinguishes NMO and MS. METHODS: 20 patients with NMO and 42 with MS were included. The intrathecal synthesis of antibodies against measles, rubella and varicella zoster virus was detected by calculation of the respective antibody indices (AI). RESULTS: A positive MRZ reaction, as defined by a combination of at least two positive AIs, was found in 37/42 MS, but in only 1/20 NMO patients (p

Breathlessness is a common and distressing symptom in patients with advanced life-limiting disease. The aim of this study was to describe demographical and clinical characteristics of patients with breathlessness in Germany.We conducted a secondary analysis of hospice and palliative care inpatient data from 2006 to 2008. The Hospice and Palliative Care Evaluation (HOPE) is an annual prospective German survey, that includes a validated 16-item symptom-and-problem checklist (severity score 0-3). Characteristics of patients with or without breathlessness were compared in a pure descriptive manner. Interpretation of given p-values takes the error inflation due to multiple testing into account.Breathlessness was recorded in 2860/5320 (53.8 %) patients (mean age 67.2 years (SD 12.4), 51.4 % female, 93.6 % malignant disease (female / male lung cancer 15.7/29.5 %, breast cancer 20.3/0.3 %, colon 10.3/8.7 %)). Breathless patients compared with those without breathless ness had a significantly worse functional status (ECOG 3-4: 78.4 % vs. 70.8 %, p0.001), suffered from a larger number (11.1 vs. 9.5, p0.001) of symptoms and the symptoms were of higher intensity (except confusion). Breathless patients had a higher risk to die during inpatient stay (43.5 % vs. 32.4 %, p0.001).Based on this large sample of hospice and palliative care inpatients, breathlessness is associated with a high symptom burden and shortened survival. Breathless patients need more attention in health care.

Das Delir als eine besondere Form der „Verwirrtheit“ ist ein haufiges, multifaktorielles Syndrom in der Palliativmedizin. Die diagnostischen Kriterien werden vorgestellt und die differenzialdiagnostische Abgrenzung zu anderen psychiatrischen Erkrankungen wie Depression, organisch wahnhafte Storung oder den Demenzen wird vorgenommen. Als diagnostisches Assessment hat sich die Confusion Assessment Method bewahrt. Praventive, nicht pharmakologische und pharmakologische Strategien des Delirmanagements werden erlautert. Nicht zuletzt werden die Bedeutung der deliranten Symptomatik fur die terminale Situation und die daraus resultierenden Erfordernisse verdeutlicht.

In nur wenigen Jahren hat sich das Spektrum und damit das Wissen um paraneoplastische Syndrome in der Neurologie deutlich erweitert. Insbesondere hat die Beschreibung neuer fakultativ paraneoplastischer Subgruppen von Enzephalitiden mit gutem Ansprechen auf immunmodulatorische Therapien das klinische und wissenschaftliche Interesse verstarkt. Das Erkennen dieser Subgruppen mittels neuartiger Autoantikorper hat unmittelbare therapeutische Konsequenzen. Die fundierte Kenntnis paraneoplastischer Syndrome in der Neurologie ist daher auserst wichtig fur den Kliniker. Neue wissenschaftliche Erkenntnisse beleuchten interessante Aspekte der Pathophysiologie paraneoplastischer Prozesse, ihrer moglichen Reversibilitat und Initiierung. Neue Registerdaten helfen die Epidemiologie paraneoplastischer neurologischer Syndrome besser einzuschatzen. Der zunehmende Einsatz von „Biologika“ in der Neurologie eroffnet zukunftig neue Therapiechancen. Allerdings fuhrt die mittlerweile entstandene Fulle an neuen Syndromen und Autoantikorpern auch vielfach zu Verwirrung und Unsicherheit. Diese Ubersichtsarbeit fasst daher neue und wichtige altere Aspekte paraneoplastischer neurologischer Syndrome, ihrer Klassifikation, Pathophysiologie und Behandlung zusammen.

Noch immer stirbt in Deutschland rund die Halfte der Patienten mit der Diagnose Krebs an ihrer Erkrankung. Um diesen Patienten und ihren Angehorigen mit allen ihren Noten und Bedurfnissen gerecht zu werden, ist eine enge Zusammenarbeit von Onkologen und Palliativmedizinern sehr wertvoll. Die Umsetzung der Empfehlungen internationaler Institutionen bezuglich der Kooperation von Onkologie und Palliativmedizin soll hier am Beispiel des Centrums fur Integrierte Onkologie (CIO Koln/Bonn) an der Uniklinik Koln dargestellt und kritisch diskutiert werden.

BACKGROUND: The completion of an advanced directive is paired with a high degree of self-responsibility of the signatory. It requires anticipation of probably complex medical situations. In the literature, the family physician is often seen as the most important person for advice when writing an advance directive. But little is known about whether or not patients want to involve medical advisors and to what extent physicians are willing to give advice. The aim of this study was to analyse whether or not individuals approached advisors for the completion of their advance directive, whom they chose and which reasons were given for seeking or foregoing assistance. METHODS: Semi-structured interviews with healthy individuals, chronically ill individuals and patients in palliative care including questions associated with advice for completing an advance directive (8/2008–7/2009). Inclusion criteria: age 55–70 years and advance directive ≥3 months old. The interviews were fully transcribed according to standard transcription rules and analysed applying an inductive category development. RESULTS: Interviews were conducted with 53 probands (healthy n = 20, chronically ill n = 17, palliative care patients n = 16); 18 probands were male. Mean age was 63.2 ± 4.4 years (range 55–70 years). Professional advice was sought by 12 probands (physician = 2, nurse = 1, lawyer/notary = 8, self-employed advisor = 1), another 8 probands included family members. In 17 cases, the physician knew the proband's advance directive, 36 probands never told their doctor about its existence. Categories of reasons for seeking or foregoing advice were trust/lack of trust, autonomy, rejection and financial considerations. CONCLUSIONS: Information about the medical implications concerning patient preferences for end-of-life care seems not to be the main focus of interest when individuals write an advance directive. Autonomy and trust into notarially certified documents seem to be more important matters. If family physicians want to have a role in their patients' completing of an advance directive, they should proactively get in touch with them.

Measuring quality of life (QOL) has made essential contributions for the management of patients with multiple sclerosis (MS). QOL measures may be used for helping to assess the complex changes which patients with MS have to go through during the disease trajectory, and they may be used for pharmacoeconomic research. The large number of tests available includes generic ones such as Short Form SF-36 and Sickness Impact Profile, health-related ones such as MSQOL-54, FAMS, or HAQUAMS, and patient generated measures such as the Patient Generated Index and SEIQOL-DW. Depression, cognitive impairment, and fatigue are important factors influencing QOL. Since the different tests measure quite different facets of QOL, this review intends to help the reader select a tool suited to the aim and specific question. It is hoped that QOL measures may help to better understand patients, to become a more helpful medical partner, to assist patients to develop perspectives for their future, and to decide about therapies or even palliative interventions.

ZusammenfassungParaneoplastische neuromuskuläre Erkrankungen sind tumor- assoziierte Syndrome, die nicht durch eine lokale Wirkung des Tumors oder seiner Metastasen verursacht sind. Diese Erkrankungsgruppe umfasst die Polymyositis / Dermatomyositis und einige seltene Muskelerkrankungen, die Übertragungsstörungen der neuromuskulären Synapse (Lambert-Eaton myasthenes Syndrom, Neuromyotonie) und die paraneoplastischen Polyneuropathien. Die Myasthenia gravis wird in einer anderen Leitlinie beschrieben. Pathogenetisch liegt eine tumor-induzierte Autoimmunreaktion gegen Strukturen von Nerv oder Muskel zugrunde. Während bei paraneoplastischen Polyneuropathien häufig spezifische antineuronale Antikörper nachweisbar sind, finden sich bei paraneoplastischen und nicht-paraneoplastischen neuromuskulären Übertragungsstörungen jeweils die gleichen Autoantikörper. Auch die paraneoplastischen Myositiden lassen sich bisher nicht durch die Autoimmundiagnostik erkennen. Da mehr als die Hälfte dieser Erkrankungen der Entdeckung des Tumors vorausgehen, ist eine sorgfältige Tumorsuche notwendig. Die neuromuskulären Übertragungsstörungen und die Polymyositis / Dermatomyositis sprechen häufig gut auf eine immunsuppressive Therapie an. Ein Teil der paraneoplastischen Polyneuropathien stabilisiert sich unter der Therapie des Tumors, in wenigen Fällen ist ein Ansprechen auf Immunsuppressiva möglich.

A 63-year-old female was admitted to the hospital with leg and forearm paresthesias. We found progressive ataxia, dementia, and psychosocial deterioration. The clinical symptoms, the neurologic and psychiatric abnormalities together with the inflammatory cerebrospinal fluid alteration and the cerebral magnetic resonance imaging changes suggested a paraneoplastic etiology. It was confirmed by paraneoplastic antineuronal antibodies in the patient's serum and the histological diagnosis of a small cell bronchial carcinoma. The prognosis of patients with paraneoplastic symptoms is the better the earlier a diagnosis is established and antitumor therapy is initiated.

Als paraneoplastische neurologische Syndrome werden alle diejenigen Komplikationen von Tumorerkrankungen bezeichnet, welche nicht durch den Tumor, seine Metastasen oder durch vaskulare, infektiose, metabolische bzw. therapiebedingte Ursachen ausgelost werden. Wahrend diese Diagnose fruher eine Ausschlussdiagnose darstellte und die Assoziation nur statistisch gegeben war, wissen wir seit der Erstbeschreibung des anti-Hu-Antikorpers 1985, dass bei etwa 2/3 der Patienten mit paraneoplastischen Erkrankungen hochspezifische Antikorper-Reaktivitaten im Serum nachzuweisen sind. Diese beweisen nicht nur die paraneoplastische Atiologie mit fast 100%, sie erleichtern auch aufgrund der hochspezifischen Assoziation mit bestimmten Tumortypen die Tumorsuche bei den Patienten, bei denen der Tumor noch nicht bekannt ist.

Similar to pain, refractory breathlessness can occur episodically. Episodic Breathlessness is a distressing symptom in patients with advanced life-limiting disease. The lack of a universal definition impedes symptom understanding in clinical practice and effective management, respectively. The aim of the study was to formally consent a German translation of the English definition and terminology of episodic breathlessness.A web-based Delphi survey was conducted with German breathlessness experts (breathlessness working group of Germany's National Guideline (S3) for Palliative Care). Drafts of German-language definitions und terminology were assessed using structured questionnaires by binary rating or rankings, respectively. Optional comments were analysed by content analysis. Consensus was defined by ≥ 70% agreement among participants.In two resulting Delphi-rounds 8/16 (50%) und 11/16 (69%) experts, 30-59 years of age, 50%/55% female, participated. After the second round, consensus was reached for the symptom's description "Atemnotattacke" (73%) and a German-language definition (90%). The terms "vorhersehbar" vs. "unvorhersehbar" were directly consented for the categorization (88%).The formally consented German definition and terminology of episodic breathlessness enable clearer symptom understanding and provide a precise basis for education and research on the symptom and its management also in Germany. Effective management options are warranted to improve quality of life of suffering patients and their relatives.

Desires for hastened death (DHD; wish to hasten death is also in use) are prevalent in terminally ill patients. Studies show that health professionals (HP) are often underprepared when presented with DHD. HPs in specialized palliative care (SPC-HP) often encounter DHD. This study aimed to identify SPC-HP responses to DHD in daily practice and their corresponding functions.Narrative interviews were conducted with 19 SPC-HPs at four German University Hospitals. Transcripts were analyzed using the documentary method. An inventory of established responses to DHD was compiled, and their corresponding functions in the context of the patient-SPC-HP interaction were reconstructed.Twelve response categories and six corresponding functions were identified. On the patient level, responses categorized as symptom control, exploring the reasons and generating perspective, reorientation, and hope were particularly used to ease the patient's burden. On the interaction level, creating a relationship was fundamental. On the SPC-HP level, various methods served the functions self-protection and showed professional expertise.Profound personal and professional development is necessary to respond to the inherent challenges presented by DHD. Establishing helpful relationships with patients is essential regardless of SPC-HP specialization. SPC-HPs should maximize their skills in establishing and maintaining relationships as well as strengthening their own resilience, possibly in specific training courses.