@article{HebestreitZeidlerSchippersetal.2022,
  author    = {Hebestreit, Helge and Zeidler, Cornelia and Schippers, Christopher and de Zwaan, Martina and Deckert, J{\"u}rgen and Heuschmann, Peter and Krauth, Christian and Bullinger, Monika and Berger, Alexandra and Berneburg, Mark and Brandstetter, Lilly and Deibele, Anna and Dieris-Hirche, Jan and Graessner, Holm and G{\"u}ndel, Harald and Herpertz, Stephan and Heuft, Gereon and Lapstich, Anne-Marie and L{\"u}cke, Thomas and Maisch, Tim and Mundlos, Christine and Petermann-Meyer, Andrea and M{\"u}ller, Susanne and Ott, Stephan and Pfister, Lisa and Quitmann, Julia and Romanos, Marcel and Rutsch, Frank and Schaubert, Kristina and Schubert, Katharina and Schulz, J{\"o}rg B. and Schweiger, Susann and T{\"u}scher, Oliver and Ungeth{\"u}m, Kathrin and Wagner, Thomas O. F. and Haas, Kirsten},
  title     = {Dual guidance structure for evaluation of patients with unclear diagnosis in centers for rare diseases (ZSE-DUO): study protocol for a controlled multi-center cohort study},
  series = {Orphanet Journal of Rare Diseases},
  volume    = {17},
  journal   = {Orphanet Journal of Rare Diseases},
  number    = {1},
  doi       = {10.1186/s13023-022-02176-1},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-300440},
  year      = {2022},
  abstract  = {Background In individuals suffering from a rare disease the diagnostic process and the confirmation of a final diagnosis often extends over many years. Factors contributing to delayed diagnosis include health care professionals' limited knowledge of rare diseases and frequent (co-)occurrence of mental disorders that may complicate and delay the diagnostic process. The ZSE-DUO study aims to assess the benefits of a combination of a physician focusing on somatic aspects with a mental health expert working side by side as a tandem in the diagnostic process. Study design This multi-center, prospective controlled study has a two-phase cohort design. Methods Two cohorts of 682 patients each are sequentially recruited from 11 university-based German Centers for Rare Diseases (CRD): the standard care cohort (control, somatic expertise only) and the innovative care cohort (experimental, combined somatic and mental health expertise). Individuals aged 12 years and older presenting with symptoms and signs which are not explained by current diagnoses will be included. Data will be collected prior to the first visit to the CRD's outpatient clinic (T0), at the first visit (T1) and 12 months thereafter (T2). Outcomes Primary outcome is the percentage of patients with one or more confirmed diagnoses covering the symptomatic spectrum presented. Sample size is calculated to detect a 10 percent increase from 30\% in standard care to 40\% in the innovative dual expert cohort. Secondary outcomes are (a) time to diagnosis/diagnoses explaining the symptomatology; (b) proportion of patients successfully referred from CRD to standard care; (c) costs of diagnosis including incremental cost effectiveness ratios; (d) predictive value of screening instruments administered at T0 to identify patients with mental disorders; (e) patients' quality of life and evaluation of care; and f) physicians' satisfaction with the innovative care approach. Conclusions This is the first multi-center study to investigate the effects of a mental health specialist working in tandem with a somatic expert physician in CRDs. If this innovative approach proves successful, it will be made available on a larger scale nationally and promoted internationally. In the best case, ZSE-DUO can significantly shorten the time to diagnosis for a suspected rare disease.},
  language  = {en}
}
@article{StanglHaasEichneretal.2020,
  author    = {Stangl, Stephanie and Haas, Kirsten and Eichner, Felizitas A. and Grau, Anna and Selig, Udo and Ludwig, Timo and Fehm, Tanja and St{\"u}bner, Tanja and Rashid, Asarnusch and Kerscher, Alexander and Bargou, Ralf and Hermann, Silke and Arndt, Volker and Meyer, Martin and Wildner, Manfred and Faller, Hermann and Schrauder, Michael G. and Weigel, Michael and Schlembach, Ulrich and Heuschmann, Peter U. and W{\"o}ckel, Achim},
  title     = {Development and proof-of-concept of a multicenter, patient-centered cancer registry for breast cancer patients with metastatic disease — the "Breast cancer care for patients with metastatic disease" (BRE-4-MED) registry},
  series = {Pilot and Feasibility Studies},
  volume    = {6},
  journal   = {Pilot and Feasibility Studies},
  doi       = {10.1186/s40814-019-0541-3},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-229149},
  year      = {2020},
  abstract  = {Background: Patients with metastatic breast cancer (MBC) are treated with a palliative approach with focus oncontrolling for disease symptoms and maintaining high quality of life. Information on individual needs of patients andtheir relatives as well as on treatment patterns in clinical routine care for this specific patient group are lacking or arenot routinely documented in established Cancer Registries. Thus, we developed a registry concept specifically adaptedfor these incurable patients comprising primary and secondary data as well as mobile-health (m-health) data. Methods: The concept for patient-centered "Breast cancer care for patients with metastatic disease"(BRE-4-MED)registry was developed and piloted exemplarily in the region of Main-Franconia, a mainly rural region in Germanycomprising about 1.3 M inhabitants. The registry concept includes data on diagnosis, therapy, progression, patient-reported outcome measures (PROMs), and needs of family members from several sources of information includingroutine data from established Cancer Registries in different federal states, treating physicians in hospital as well as inoutpatient settings, patients with metastatic breast cancer and their family members. Linkage with routine cancerregistry data was performed to collect secondary data on diagnosis, therapy, and progression. Paper and online-basedquestionnaires were used to assess PROMs. A dedicated mobile application software (APP) was developed to monitorneeds, progression, and therapy change of individual patients. Patient's acceptance and feasibility of data collection inclinical routine was assessed within a proof-of-concept study. Results: The concept for the BRE-4-MED registry was developed and piloted between September 2017 and May 2018.In total n= 31 patients were included in the pilot study, n= 22 patients were followed up after 1 month. Recordlinkage with the Cancer Registries of Bavaria and Baden-W{\"u}rttemberg demonstrated to be feasible. The voluntary APP/online questionnaire was used by n= 7 participants. The feasibility of the registry concept in clinical routine waspositively evaluated by the participating hospitals. Conclusion: The concept of the BRE-4-MED registry provides evidence that combinatorial evaluation of PROMs, needsof family members, and raising clinical parameters from primary and secondary data sources as well as m-healthapplications are feasible and accepted in an incurable cancer collective.},
  language  = {en}
}
@article{KippnichSkazelKlingshirnetal.2022,
  author    = {Kippnich, Maximilian and Skazel, Tobias and Klingshirn, Hanna and Gerken, Laura and Heuschmann, Peter and Haas, Kirsten and Schutzmeier, Martha and Brandstetter, Lilly and Weismann, Dirk and Reuschenbach, Bernd and Meybohm, Patrick and Wurmb, Thomas},
  title     = {Analyse des Weaningprozesses bei Intensivpatienten im Hinblick auf Dokumentation und Verlegung in weiterbehandelnde Einheiten},
  series = {Medizinische Klinik, Intensivmedizin und Notfallmedizin},
  volume    = {118},
  journal   = {Medizinische Klinik, Intensivmedizin und Notfallmedizin},
  doi       = {10.1007/s00063-022-00941-5},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-346742},
  pages     = {269-276},
  year      = {2022},
  abstract  = {Hintergrund und Fragestellung Die Entw{\"o}hnung von Beatmungsger{\"a}ten wird nicht immer auf der prim{\"a}r behandelnden Intensivstation abgeschlossen. Die Weiterverlegung in andere Behandlungseinrichtungen stellt einen sensiblen Abschnitt in der Behandlung und Rehabilitation des Weaningpatienten dar. Ziel der vorliegenden Studie war die Untersuchung des {\"U}berleitungsmanagements und des Interhospitaltransfers von Weaningpatienten unter besonderer Ber{\"u}cksichtigung der Dokumentationsqualit{\"a}t. Methodik Es erfolge eine retrospektive Datenanalyse eines Jahrs (2018) auf 2 Intensivstationen eines Universit{\"a}tsklinikums. Eingeschlossen wurden alle beatmeten Patienten mit folgenden Tracerdiagnosen: COPD, Asthma, Polytrauma, Pneumonie, Sepsis, ARDS und Reanimation (Beatmung > 24 h). Ergebnisse Insgesamt konnten 750 Patienten in die Untersuchung eingeschlossen werden (Alter 64 [52, 8-76; Median, IQR]; 32 \% weiblich). Davon waren 48 (6,4 \%) Patienten zum Zeitpunkt der Verlegung nicht entw{\"o}hnt (v. a. Sepsis und ARDS). Die Routinedokumentation war bei den Abschnitten „Spontaneous Breathing Trial", „Bewertung der Entw{\"o}hungsbereitschaft" und „vermutete Entw{\"o}hnbarkeit" ausreichend, um die Erf{\"u}llung der Parameter der S2k-Leitlinie „Prolongiertes Weaning" ad{\"a}quat zu beurteilen. Vorwiegend wurden diese Patienten mit Tracheostoma (76 \%) in Rehabilitationskliniken (44 \%) mittels spezialisierten Rettungsmitteln des arztbegleiteten Patiententransports verlegt (75 \%). Diskussion Die Verlegung nicht entw{\"o}hnter Patienten nach initialem Intensivaufenthalt ist ein relevantes Thema f{\"u}r den Interhospitaltransfer. Die Routinedokumentation eines strukturierten Weaningprozesses ist in Kernelementen ausreichend, um den Weaningprozess l{\"u}ckenlos zu beschreiben. Dies ist f{\"u}r die Kontinuit{\"a}t in der Weiterbehandlung dieser Patienten von großer Bedeutung.},
  language  = {de}
}