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MDS is a complex and potentially severe disease which can trigger psychological distress. A lack of information received and understood about MDS may also arouse feelings of distress. Low health literacy (HL) might play a role particularly among older patients. Our aim was to assess MDS-related distress and to study the factors associated with it, including medical and non-medical factors such as HL. A self-administered questionnaire was mailed to all members of French and Australian patients' national MDS associations. Data of 280 patients were analysed. A majority of patient (59.5%) reported low functional HL and 50% reported regular difficulties in asking physicians questions. Distress was not modified by gender, awareness of increased risk of developing leukaemia or MDS characteristics. French patients had a higher mean IES score (adjusted β = 5.9, p = 0.004) compared to Australian patients. Poor satisfaction with information provided about MDS, lower functional HL and difficulties in asking physician's questions were also independently associated with distress. MDS-related distress seems more related to HL and communication with physicians than to MDS characteristics. More efforts are needed to improve health literacy, tailor information for MDS patients and support them psychologically in order to improve their emotional well-being.
This article was published in the following journal.
Name: Leukemia research
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Degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.
Voluntary organizations which support educational programs and research in psychiatry with the objective of the promotion of mental health. An early association in the United States was founded as the National Committee for Mental Hygiene in 1909, became the Mental Health Association in 1976 and later the National Mental Health Association in 1980. State and local mental health associations in this country are chartered by the national organization and affiliated with it.
System through which research and other scholarly writings are created, evaluated for quality, disseminated to the scholarly community, and preserved for future use. It includes both formal means of communication, such as publication in peer-reviewed journals, and informal channels, such as electronic listservs. (from Association of College & Research Libraries, “Principles and Strategies for the Reform of Scholarly Communication 1,” 2003)
The transfer of information from experts in the medical and public health fields to patients and the public. The study and use of communication strategies to inform and influence individual and community decisions that enhance health.
Experiential, attitudinal, emotional, or behavioral phenomena occurring during the course of treatment. They apply to the patient or therapist (i.e., nurse, doctor, etc.) individually or to their interaction. (American Psychological Association: Thesaurus of Psychological Index Terms, 1994)