Source of medical information and behavioral seeking patterns in patients affected with Friedreich's ataxia and their caregivers: a survey study

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 and methods 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 and conclusion 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.

Automated summary

Friedreich's ataxia is a debilitating disease that significantly affects the quality of life for both patients and caregivers. The main sources of information for both patients and caregivers are FRDA specialists and the media, with a particular interest in general information and both existing and experimental therapies. Understanding the information-seeking behavior of FRDA patients and caregivers can lead to tailored information and improved therapeutic alliance.