Dataset Information

Needs of amyloidosis patients and their care providers: design & first results of the _AMY-NEED_S research and care program.

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-NEED_S, 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-NEED_S 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.

SUBMITTER: Ihne-Schubert SM

PROVIDER: S-EPMC10859020 | biostudies-literature | 2024 Feb

REPOSITORIES: biostudies-literature

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Publications

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.

Ihne-Schubert Sandra Michaela SM Radovic Teresa T Fries Saskia S Frantz Stefan S Einsele Hermann H Störk Stefan S Neuderth Silke S

Orphanet journal of rare diseases 20240210 1

<h4>Background</h4>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 approa ...[more]

PMID: 38341596

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Project description:IntroductionEmergency care research in Africa is not on par with other world regions. The study aimed to assess the perceptions and practices towards research among current emergency care providers in Africa.MethodsA survey was sent to all individual members of the African Federation of Emergency Medicine. The survey was available in English and French.ResultsOne hundred and sixty-eight responses were analysed (invited n = 540, responded n = 188, 34.8%, excluded n = 20). Responders' mean age was 36.3 years (SD = 9.1); 122 (72.6%) were male, 104 (61.9%) were doctors, and 127 (75.6%) were African trained. Thirty-seven (22%) have never been involved in research; 33 (19.6%) have been involved in ⩾5 research projects. African related projects were mostly relevant to African audiences (n = 106, 63.1%). Ninety-four (56%) participants have never published. Forty-one (24.4%) were not willing to publish in open access journals requesting a publication fee; 65 (38.7%) will consider open access journals if fees are sponsored. Eighty responders (47.6%) frequently experienced access block to original articles due to subscription charges. Lack of research funding (n = 108, 64.3%), lack of research training (n = 86, 51.2%), and lack of allocated research time (n = 76, 45.2%) were the main barriers to research involvement. Improvement of research skills (n = 118, 70.2%) and having research published (n = 117, 69.6%) were the top motivational factors selected. Responders agreed that research promotes critical thinking (n = 137, 81.5%) and serve as an important educational tool (n = 134, 80.4%). However, 134 (79.8%) feel that emergency care workers need to be shown how to use research to improve clinical practice. Most agreed that insufficient emergency care research is being conducted in Africa (n = 113, 67.3%).DiscussionThere is scope to increase research involvement in emergency care in Africa, but solutions need to be find to address lack of research-related funding, training and time.

Dataset Information

Needs of amyloidosis patients and their care providers: design & first results of the _AMY-NEED_S research and care program.

Background

Methods

Results

Conclusions

Publications

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.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

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Dataset Information

Needs of amyloidosis patients and their care providers: design & first results of the AMY-NEEDS research and care program.

Background

Methods

Results

Conclusions

Publications

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.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets

Needs of amyloidosis patients and their care providers: design & first results of the _AMY-NEED_S research and care program.