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Health-Related Communication and Rare Diseases: A Passport for the Patient Journey

Health-Related Communication and Rare Diseases: A Passport for the Patient Journey

Michaela Liuccio
Copyright: © 2022 |Pages: 20
ISBN13: 9781668424148|ISBN10: 1668424142|EISBN13: 9781668424155
DOI: 10.4018/978-1-6684-2414-8.ch013
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MLA

Liuccio, Michaela. "Health-Related Communication and Rare Diseases: A Passport for the Patient Journey." Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Information Resources Management Association, IGI Global, 2022, pp. 218-237. https://doi.org/10.4018/978-1-6684-2414-8.ch013

APA

Liuccio, M. (2022). Health-Related Communication and Rare Diseases: A Passport for the Patient Journey. In I. Management Association (Ed.), Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media (pp. 218-237). IGI Global. https://doi.org/10.4018/978-1-6684-2414-8.ch013

Chicago

Liuccio, Michaela. "Health-Related Communication and Rare Diseases: A Passport for the Patient Journey." In Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media, edited by Information Resources Management Association, 218-237. Hershey, PA: IGI Global, 2022. https://doi.org/10.4018/978-1-6684-2414-8.ch013

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Abstract

Rare diseases are often characterized as diseases with low prevalence in population that stem from genetic disorders or environment conditions. As a result of its low prevalence and lack of knowledge of its causes, symptoms, and/or treatment, patients' access to healthcare, and their quality of life may be affected. A key challenge is also the physician-patient interaction that differs from traditional medical care settings by demanding physicians' experience in dealing, for example, with psychological problems associated with the diagnosis process. Information and Communication Technologies can facilitate the interaction between the sources of information and patients, overcoming geographical distances. This chapter discusses the role of Information and Communication to extract health data in rare diseases and reinforce physician-patient interactions. It argues that Information and Communication are crucial to meet patients' needs, drivers, and decision-making that tend to occur during the patient's journey (pre-diagnosis, diagnosis, and post-diagnosis).

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