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Leuk Res. 2018 Oct;73:44-50. doi: 10.1016/j.leukres.2018.08.020. Epub 2018 Sep 5.

Association between health literacy, communication and psychological distress among myelodysplastic syndromes patients.

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Aix-Marseille Univ, INSERM, IRD, SESSTIM, "Cancer, Biomedicine & Society" Group, Marseille, France.
Centre for Medical Psychology & Evidence-Based Decision-Making (CeMPED), and Psycho-Oncology Co-Operative Research Group (PoCoG), The University of Sydney, Sydney, NSW, Australia.
AP-HP, Hôpital Saint-Louis, Service d'Hématologie Clinique, Groupe Francophone des Myélodysplasies (GFM), Paris, France; Paris 7 University, Paris, France.
Leukaemia Foundation of Australia, Melbourne, Australia.
Connaître et Combattre les Myélodysplasies, Paris, France.
Institut Paoli-Calmettes, Marseille, F-13273 France; Aix-Marseille Univ, Inserm, CNRS, UM105, CRCM, Marseille, France.
Aix-Marseille Univ, APHM, INSERM, IRD, SESSTIM, "Cancer, Biomedicine & Society" Group, Hop Timone, BIOSTIC, Marseille, France. Electronic address:


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.


Avoidance; Doctor-patient communication; Health literacy; Intrusion; Myelodysplastic syndromes; Psychological distress

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