Source of medical information and behavioral seeking patterns in patients affected with Friedreich's ataxia and their caregivers: a survey study.
Neurol Sci
; 43(5): 3223-3229, 2022 May.
Article
in En
| MEDLINE
| ID: mdl-34839412
ABSTRACT
BACKGROUND:
Friedreich's ataxia (FRDA) is an untreatable disease that negatively impacts patients' and caregivers' quality of life.OBJECTIVES:
The aims were to improve the quality of the information for FRDA patients and caregivers and suggest a possible tool to spread this information. MATERIAL ANDMETHODS:
Thirty-four FRDA patients and 45 caregivers were interviewed separately using a structured self-administered survey about their information-seeking behavior, their level of expectation and satisfaction for the information received, and the need for further information. RESULTS ANDCONCLUSION:
For patients and caregivers, the main source of information was the FRDA specialist and the media. The most searched items were "general information"; patients and particularly caregivers desired to get more information on existing and experimental therapies. Adequate information supply is part of good medical care; therefore, a deeper insight of clinicians in information-seeking behavior of FRDA patients and caregivers would provide tailored information and improve therapeutic alliance.Key words
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Friedreich Ataxia
Type of study:
Qualitative_research
Limits:
Humans
Language:
En
Journal:
Neurol Sci
Journal subject:
NEUROLOGIA
Year:
2022
Type:
Article
Affiliation country:
Italy