@article{IhneRadovicFriesetal., author = {Ihne, S. and Radovic, T. and Fries, S. and Frantz, S. and Einsele, H. and St{\"o}rk, S. and Neuderth, Silke}, title = {Needs of amyloidosis patients and their care providers: design \& first results of the A MY-NEED S research and care program}, series = {Orphanet Journal of Rare Diseases}, volume = {19}, journal = {Orphanet Journal of Rare Diseases}, number = {1}, doi = {10.1186/s13023-024-03052-w}, abstract = {Amyloidosis represents a rare yet heterogeneous multi-system disorder associated with a grave prognosis and an enormous psycho-emotional strain on patients, relatives, and caregivers. We here present the overall study design and first results ofMY-NEED, a research program aiming to systematically assess the needs of patients suffering from amyloidosis, their relatives and health care professionals (HCPs), and develop an amyloidosis-specific care approach.MY-NEEDuses a mixed-methods approach including focus groups (step 1), a questionnaire-based broad evaluation within the local amyloidosis patient collective (step 2), and the development of a needs-adapted care concept (step 3).Seven patients, six relatives and five HCPs participated in the focus groups (step 1). At the time of diagnosis, patients expressed the need of a smooth diagnostic process, possibly enhanced through improved awareness and better education of local HCPs. There was a strong wish to receive well-founded information and comprehensive support including companionship during medical visits, experience the feeling of being understood, find trust in that "everything possible" is being done, and have effortless access to centre staff. In the course of the disease, patients favoured that the specialized centre should manage treatment coordination, monitoring and psychosocial support. The interface between centre and local HCPs was regarded of particular importance, requiring further investigation into its optimal design.Patients with amyloidosis express particular needs that should appropriately be considered in specifically tailored care concepts.}, language = {en} } @book{MengNeuderthFaller, author = {Meng, K. and Neuderth, Silke and Faller, H.}, title = {Grundlagen der diagnostischen Entscheidung}, series = {Medizinische Psychologie und Soziologie}, journal = {Medizinische Psychologie und Soziologie}, editor = {Faller, H. and Lang, H.}, edition = {4.}, publisher = {Springer}, address = {Heidelberg}, pages = {242 -- 244}, language = {de} } @incollection{NeuderthFaller, author = {Neuderth, Silke and Faller, H.}, title = {Transplantationsmedizin und Onkologie}, series = {Medizinische Psychologie und Soziologie}, booktitle = {Medizinische Psychologie und Soziologie}, editor = {Faller, H. and Lang, H.}, edition = {4}, publisher = {Springer}, address = {Heidelberg}, pages = {276 -- 283}, language = {de} } @article{IhneSchubertLeberzammerWeidgansetal., author = {Ihne-Schubert, Sandra Michaela and Leberzammer, Maria and Weidgans, Marcel and Frantz, Stefan and Einsele, Hermann and Knop, Stefan and Schubert, Torben and Bratan, Tanja and St{\"o}rk, Stefan and Neuderth, Silke}, title = {Single German centre experience with patient journey and care-relevant needs in amyloidosis: The German AMY-NEEDS research and care program}, series = {PLOS ONE}, volume = {19}, journal = {PLOS ONE}, number = {5}, editor = {Lionetti, Vincenzo}, publisher = {Public Library of Science (PLoS)}, issn = {1932-6203}, doi = {10.1371/journal.pone.0297182}, pages = {19}, abstract = {Background Amyloidosis is a rare multi-system disorder associated with frequently delayed diagnosis, enormous disease burden and psychosocial distress. Methods Systematic assessment of needs was performed by a subtype-spanning questionnaire-based survey within the AMY-NEEDS research and care program. Results 118 patients with proven amyloidosis (62.7\% ATTR, 22.0\% AL, 15.3\% other forms) were included in August 2020 until February 2021 (mean age 71.2 ±11.3 years; 30\% women). The median diagnostic delay between onset of symptoms and diagnosis was 9.0 (range: 2.5; 33.0) months. Local health care providers (HCPs) play a central role on the way to diagnosis. Diagnosis itself typically requires a clinical but not necessarily a university setting. In the treatment phase, the focus moves to the amyloidosis centre as primary contact and coordinator, with general practitioners (GPs) acting predominantly as a contact point in crisis and link to additional services. About half of patients reported impaired quality of life and one third suffering from anxiety and depressed mood, respectively. The majority of patients talk about their concerns with close caregivers and local HCPs. Advance care planning is a relevant, yet insufficiently met need. Conclusion The journey of patients with amyloidotic disease, their contact partners and needs at different stages were characterized in detail within the German health care system. An amyloidosis-specific care concept has to master the multitude of interfaces connecting the numerous treatment providers involved with the amyloidosis centre and GPs as key players. Telemedical approaches could be a promising and well-accepted option allowing optimal coordination and communication.}, language = {en} } @article{KlemmtHolmerHenkingetal., author = {Klemmt, Malte and Holmer, Dagmar and Henking, Tanja and Neuderth, Silke}, title = {Patient autonomy in inpatient medical rehabilitation in Germany - study protocol of a multicenter cross-sectional study}, series = {BMC Medical Ethics}, volume = {26}, journal = {BMC Medical Ethics}, number = {1}, publisher = {Springer Science and Business Media LLC}, issn = {1472-6939}, doi = {10.1186/s12910-025-01340-z}, abstract = {Background The bioethical principle of respect for patients' autonomy should be implemented in every area of health care. The German rehabilitation system has some characteristics (e.g. the prevalence of inpatient rehabilitation) that make the topic particularly relevant. The aim of the study is to determine the current state of respecting patient autonomy in inpatient medical rehabilitation in Germany and to identify barriers and promoting factors from the perspective of relevant groups. Methods A multi-center, prospective, cross-sectional study is being conducted, including interviews with patients ( n  = 24), interviews with professionals ( n  = 21) and a survey of medical directors ( n  = 900). The empirical findings are then reviewed in three validation workshops. In addition, consensus recommendations for practice are derived by means of a Delphi process with experts ( n  = 30). Discussion This study will address an important gap in the empirical literature by identifying the current state and needs of patients, professionals and medical directors of rehabilitation clinics regarding the practice of respecting patient autonomy in inpatient medical rehabilitation in Germany. It is expected that the results can contribute to coming closer to the ideal of respect for patient autonomy in rehabilitation practice. Trial registration The study was registered with the German Clinical Trials Registry (ID: DRKS00035893).}, language = {en} } @article{KlemmtZehlNeuderthetal., author = {Klemmt, Malte and Zehl, Franziska and Neuderth, Silke and Henking, Tanja}, title = {Gesundheitliche Vorausplanung f{\"u}r die letzte Lebensphase: Wie sind Einrichtungen f{\"u}r erwachsene Menschen mit Behinderungen in Bayern hierauf vorbereitet?}, series = {Zeitschrift f{\"u}r Evidenz, Fortbildung und Qualit{\"a}t im Gesundheitswesen}, volume = {190-191}, journal = {Zeitschrift f{\"u}r Evidenz, Fortbildung und Qualit{\"a}t im Gesundheitswesen}, publisher = {Elsevier BV}, issn = {1865-9217}, doi = {https://doi.org/10.1016/j.zefq.2024.09.004}, pages = {63 -- 71}, language = {de} } @incollection{FallerNeuderth, author = {Faller, A. and Neuderth, Silke}, title = {Transplantationsmedizin und Onkologie}, series = {Medizinische Psychologie und Soziologie}, booktitle = {Medizinische Psychologie und Soziologie}, editor = {Faller, H. and Mehnert-Teuerkauf, A.}, publisher = {Springer VS}, address = {Heidelberg}, publisher = {Technische Hochschule W{\"u}rzburg-Schweinfurt}, pages = {287 -- 352}, language = {de} } @misc{NeuderthHotz, author = {Neuderth, Silke and Hotz, C.}, title = {Unterst{\"u}tzungsm{\"o}glichkeiten f{\"u}r trans* Personen - F{\"o}rderung sozialer Gleichberechtigung}, series = {Forum Sozial}, volume = {2024}, journal = {Forum Sozial}, pages = {23-28}, language = {de} } @article{WaldauNeuderth, author = {Waldau, A. and Neuderth, Silke}, title = {Gesund bleiben im Klimawandel}, series = {Psychosoziale und Medizinische Rehabilitation}, volume = {2025}, journal = {Psychosoziale und Medizinische Rehabilitation}, language = {de} } @incollection{Neuderth, author = {Neuderth, Silke}, title = {Qualit{\"a}tsmanagement im Gesundheitswesen}, series = {Medizinische Psychologie und Soziologie}, booktitle = {Medizinische Psychologie und Soziologie}, editor = {Faller, H. and Lang, H.}, edition = {4}, publisher = {Springer}, address = {Heidelberg}, pages = {320 -- 325}, language = {de} }