Giuseppina Miele1, Luigi Lavorgna2, Stefania Federica De Mercanti3, Marco Iudicello3, Gianmarco Abbadessa1, Manuela Matta3, Simona Bonavita1, Marinella Clerico3. 1. Second Division of Neurology, Department of Advanced Medical and Surgical Sciences, University of Campania "Luigi Vanvitelli", Via Pansinis 5, 80134, Naples, Italy. 2. First Division of Neurology, Department of Advanced Medical and Surgical Sciences, University of Campania "Luigi Vanvitelli", Piazza Miraglia 2, 80138, Naples, Italy. luigi.lavorgna@policliniconapoli.it. 3. Clinical and Biological Sciences Department, Neurology Unit, University of Torino, San Luigi Gonzaga Hospital, Regione Gonzole, 10, 10043, Orbassano, Turin, Italy.
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 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.
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.
Authors: A Dürr; M Cossee; Y Agid; V Campuzano; C Mignard; C Penet; J L Mandel; A Brice; M Koenig Journal: N Engl J Med Date: 1996-10-17 Impact factor: 91.245