期刊
LEUKEMIA RESEARCH
卷 73, 期 -, 页码 44-50出版社
PERGAMON-ELSEVIER SCIENCE LTD
DOI: 10.1016/j.leukres.2018.08.020
关键词
Avoidance; Doctor-patient communication; Health literacy; Intrusion; Myelodysplastic syndromes; Psychological distress
资金
- A*MIDEX foundation - French Government Investissements d'Avenir program [ANR-11-IDEX-0001-02]
- PACA Canceropole [2013-14]
- French National Cancer Institute [INCA_8102]
- Marseille SIRIC [INCa-DGOS-Inserm 6038]
- Centre for Medical Psychology and Evidence-based Decision-making (CeMPED, The University of Sydney)
- Fondation ARC [SAE20120604962]
- Fondation de France [2012-00029658]
- ADEREM [Mobilites-sept-2012]
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 IFS score (adjusted beta = 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.
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