@inproceedings{IhneRadovicLeberzammeretal., author = {Ihne, S. and Radovic, T. and Leberzammer, M. and Fries, S. and Frantz, S. and Einsele, H. and Knop, S. and Bratan, T. and St{\"o}rk, S. and Neuderth, Silke}, title = {AMY-NEEDS research and care program - Structured multistep approach towards a disease-specific care concept for patients with amyloidosis}, series = {Posterpr{\"a}sentation auf der Jahrestagung der DGHO (Deutsche Gesellschaft f{\"u}r H{\"a}matologie und Medizinische Onkologie) 1.-4.10.21 in Berlin}, booktitle = {Posterpr{\"a}sentation auf der Jahrestagung der DGHO (Deutsche Gesellschaft f{\"u}r H{\"a}matologie und Medizinische Onkologie) 1.-4.10.21 in Berlin}, language = {de} } @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} } @inproceedings{NeuderthWilkeningRichardetal., author = {Neuderth, Silke and Wilkening, S. and Richard, M. and Schowalter, M. and Steinb{\"u}chel, T. and St{\"o}rk, S. and Angermann, C. and Faller, H.}, title = {Krankheitsbezogenes Interesse und Schulungsbed{\"u}rfnis bei Patienten mit chronischer Herzinsuffizienz}, series = {DRV-Schriften 14. Rehabilitationswissenschaftliches Kolloquium vom 28.02.05 bis 02.03.05 in Hannover}, booktitle = {DRV-Schriften 14. Rehabilitationswissenschaftliches Kolloquium vom 28.02.05 bis 02.03.05 in Hannover}, number = {59}, pages = {193 -- 194}, language = {de} } @article{NeuderthSteinbuechelSchowalteretal., author = {Neuderth, Silke and Steinb{\"u}chel, T. and Schowalter, M. and Richard, M. and St{\"o}rk, S. and Angermann, C. and Faller, H.}, title = {Schulungsbed{\"u}rfnis bei Patienten mit chronischer Herzinsuffizienz}, series = {Zeitschrift f{\"u}r Medizinische Psychologie}, volume = {15}, journal = {Zeitschrift f{\"u}r Medizinische Psychologie}, number = {2}, pages = {77 -- 85}, language = {de} }