Health information behaviour of rare disease patients: seeking, finding and sharing health information

Abstract

Background: Rare disease patients find independent health information seeking necessary due to the general lack of knowledge on rare diseases and inadequate information provision by health care professionals. Objective: The aim of this study is to describe distinctive aspects of health information behaviour of rare disease patients and specific challenges they face when seeking health information. Methods: A qualitative research approach was employed including semi-structured interviews that were analysed using thematic analysis. Fifteen respondents suffering from three different rare diseases participated in the study. Results: Health information behaviour of rare disease patients is characterised by independent and continuous health information seeking and sharing. Connecting with other patients and getting realistic insight into the condition after diagnosis, advice for everyday life, comfort and hope and confirmation that their symptoms are ‘normal’ are of particular importance. Lack of specific advice for daily life, inaccessible new knowledge, lack of information about drugs and encountering severe health information are common challenges patients face due to insufficient support from health care professionals. Conclusion: Health information seeking and sharing are important aspects of rare disease patients’ everyday life. Challenges they face could be overcome in cooperation with patient support groups, health care professionals and health information professionals.