Versorgungsforschung im letzten Lebensjahr beschäftigt sich mit der
 wissenschaftlichen Erfassung der Begleitung und Betreuung von schwerstkranken
 und sterbenden Menschen sowie ihrer An- und Zugehörigen. Patientinnen
 und Patienten in der letzten Lebensphase können unterschiedlichen
 Erkrankungsgruppen angehören, besondere Charakteristika aufweisen
 (z. B. Menschen mit kognitiver und komplexer Beeinträchtigung,
 ökonomischer Benachteiligung oder Migrationshintergrund) sowie in
 bestimmten Lebensphasen sein (z. B. Eltern minderjähriger
 Kinder, (hohes) Alter). Aus der besonderen Situation der Betroffenen sowie aus
 den Besonderheiten der Versorgung im letzten Lebensjahr ergibt sich das
 Erfordernis für ein eigenes Memorandum zur Versorgungsforschung in
 dieser Lebensphase. Dieses Memorandum beschreibt diesbezüglich ethische
 und methodische Spezifika sowie aktuelle Fragestellungen der
 Versorgungsforschung und wie diese angemessen mittels quantitativer,
 qualitativer und gemischter Methoden bearbeitet werden können. Es wurde
 von der Fachgruppe Palliativmedizin des Deutschen Netzwerk für
 Versorgungsforschung e.V. (DNVF) entsprechend der Vorgaben für
 DNVF-Memoranden erarbeitet.

http://www.thieme-connect.de/products/ejournals/pdf/10.1055/a-1889-4705.pdf

DNVF-Memorandum Versorgungsforschung im letzten
 Lebensjahr

Background The Munich Breathlessness Service (MBS) has adapted novel support services to the German context, to reduce burden in patients and carers from breathlessness in advanced disease. It has been evaluated in a pragmatic fast track randomised controlled trial (RCT) (BreathEase, NCT02622412) with embedded qualitative interviews and postal survey. The aim of this paper is to describe the intervention model and study design, analyse recruitment to the trial and compare sample characteristics with other studies in the field. Methods Analysis of recruitment pathways and enrolment, sociodemographic and clinical characteristics of participants and carers. Results Of 439 people screened, 253 (58%) were offered enrolment and 183 (42%) participated. n=97 (70%) carers participated. 186 people (42%) did not qualify for inclusion, mostly because breathlessness could not be attributed to an underlying disease. All participants were self-referring, 60% through media sources. Eligibility and willingness to participate were associated to social networks and illness-related activities as recruitment routes. Mean age of participants was 71 years (51% women), with COPD (63%), chronic heart failure (8%), interstitial lung disease (9%), pulmonary hypertension (6%) and cancer (7%) as underlying conditions. Postal survey response rate was 89%. Qualitative interviews were conducted with 16 patients and 9 carers. Conclusion The BreathEase study has a larger and more heterogeneous sample compared to other trials. The self-referral-based and prolonged recruitment drawing on media sources approximates real-world conditions of early palliative care. Integrating qualitative and quantitative components will allow a better understanding and interpretation of the results of the main effectiveness study.

https://openres.ersjournals.com/content/erjor/7/4/00228-2020.full.pdf

BreathEase: rationale, design and recruitment of a randomised trial and embedded mixed-methods study of a multiprofessional breathlessness service in early palliative care.

"Only I know now, of course, how to deal with it, or better to deal with it": A mixed methods phase II study of a cognitive and behavioral intervention for the management of episodic breathlessness.

This will be our final new year editorial, as in September we will make way for a new editorial team who can continue the evolution of the European Respiratory Journal. Here, we want to look back on some of the highlights of a remarkable year at the ERJ and pay tribute to the pillars of the journal's success, our editors, reviewers and the editorial staff who have worked so hard throughout our 5-year tenure. Editorial review of 2021: look back on some of the highlights of a remarkable year at the European Respiratory Journal https://bit.ly/331l1VN

The evolution of the European Respiratory Journal: adapting in an era of change

Only I Know Now, of Course, How to Deal With it, or Better to Deal With it: A Mixed Methods Phase II Study of a Cognitive and Behavioral Intervention for the Management of Episodic Breathlessness

Breathlessness is a common and distressing symptom in advanced stages of malignant and non-malignant disease [1–4]. Breathlessness is highly prevalent, occurring in up to 80% of patients with advanced cancer, in around 56–98% of patients with chronic obstructive pulmonary disease (COPD) and in up to 90% of patients with chronic heart failure (CHF) [5, 6]. Patients with chronic breathlessness resulting from advanced disease report high symptom burden, palliative care needs [7–9] and suffer from anxiety and depression [10]. Negative consequences on health and quality of life (QoL) have been shown, e.g. for COPD patients [11]. Breathlessness is one of the most common reasons for emergency department visits and hospital admissions in cancer patients [12–14].

Footnotes 

This manuscript has recently been accepted for publication in the European Respiratory Journal . It is published here in its accepted form prior to copyediting and typesetting by our production team. After these production processes are complete and the authors have approved the resulting proofs, the article will move to the latest issue of the ERJ online. Please open or download the PDF to view this article.

Conflict of interest: Dr. Schunk reports grants from BMBF (German Federal Ministry of Education and Research), during the conduct of the study;.

Conflict of interest: Dr. Le has nothing to disclose.

Conflict of interest: Dr. Syunyaeva has nothing to disclose.

Conflict of interest: Dr. Haberland has nothing to disclose.

Conflict of interest: Dr. Dr. med. Tanzler has nothing to disclose.

Conflict of interest: Dr. Mansmann has nothing to disclose.

Conflict of interest: Dr. Schwarzkopf has nothing to disclose.

Conflict of interest: Dr. Seidl has nothing to disclose.

Conflict of interest: Dr. Streitwieser has nothing to disclose.

Conflict of interest: M. Hofmann has nothing to disclose.

Conflict of interest: Dr. Mueller has nothing to disclose.

Conflict of interest: Dr. Weis has nothing to disclose.

Conflict of interest: Dr. Morawietz has nothing to disclose.

Conflict of interest: Dr. Rehfuess has nothing to disclose.

Conflict of interest: Dr. Huber reports grants from German Ministry of Education and Research, during the conduct of the study;.

Conflict of interest: Dr. Berger reports grants from Federal Ministry of Education and Research Germany (BMBF), during the conduct of the study;.

Conflict of interest: Dr. Bausewein reports grants from German Ministry of Research and Education, during the conduct of the study;.

Effectiveness of a specialised breathlessness service for patients with advanced disease in Germany: a pragmatic fast-track randomised controlled trial (BreathEase).

Tobias Weiß

Papers

Effectiveness of a specialised breathlessness service for patients with advanced disease in Germany: a pragmatic fast-track randomised controlled trial (BreathEase).