Needs of amyloidosis patients and their care providers : design & first results of the AMY-NEEDS research and care program
(2024) In Orphanet Journal of Rare Diseases 19(1).- Abstract
Background: 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 of AMY-NEEDS, 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. Methods: AMY-NEEDS uses 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... (More)
Background: 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 of AMY-NEEDS, 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. Methods: AMY-NEEDS uses 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). Results: 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. Conclusions: Patients with amyloidosis express particular needs that should appropriately be considered in specifically tailored care concepts.
(Less)
- author
- Ihne-Schubert, Sandra Michaela LU ; Radovic, Teresa ; Fries, Saskia ; Frantz, Stefan ; Einsele, Hermann ; Störk, Stefan and Neuderth, Silke
- organization
- publishing date
- 2024-12
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- MY-NEED, AmyKoS, amyloidosis, amyloidosis-specific care concept, needs
- in
- Orphanet Journal of Rare Diseases
- volume
- 19
- issue
- 1
- article number
- 58
- publisher
- BioMed Central (BMC)
- external identifiers
-
- pmid:38341596
- scopus:85184789383
- ISSN
- 1750-1172
- DOI
- 10.1186/s13023-024-03052-w
- language
- English
- LU publication?
- yes
- id
- a9585726-aec8-4d07-97d4-a8a113557d54
- date added to LUP
- 2024-03-12 12:36:02
- date last changed
- 2024-04-23 17:11:00
@article{a9585726-aec8-4d07-97d4-a8a113557d54,
abstract = {{<p>Background: 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 of <sub>A</sub>MY-NEED<sub>S</sub>, 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. Methods: <sub>A</sub>MY-NEED<sub>S</sub> uses 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). Results: 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. Conclusions: Patients with amyloidosis express particular needs that should appropriately be considered in specifically tailored care concepts.</p>}},
author = {{Ihne-Schubert, Sandra Michaela and Radovic, Teresa and Fries, Saskia and Frantz, Stefan and Einsele, Hermann and Störk, Stefan and Neuderth, Silke}},
issn = {{1750-1172}},
keywords = {{MY-NEED; AmyKoS; amyloidosis; amyloidosis-specific care concept; needs}},
language = {{eng}},
number = {{1}},
publisher = {{BioMed Central (BMC)}},
series = {{Orphanet Journal of Rare Diseases}},
title = {{Needs of amyloidosis patients and their care providers : design & first results of the <sub>A</sub>MY-NEED<sub>S</sub> research and care program}},
url = {{http://dx.doi.org/10.1186/s13023-024-03052-w}},
doi = {{10.1186/s13023-024-03052-w}},
volume = {{19}},
year = {{2024}},
}