Awareness of acute myeloid leukaemia risk induced by diagnosis of a myelodysplastic syndrome.
Identifieur interne : 002314 ( Main/Exploration ); précédent : 002313; suivant : 002315Awareness of acute myeloid leukaemia risk induced by diagnosis of a myelodysplastic syndrome.
Auteurs : Youssoufa M. Ousseine [France] ; Phyllis N. Butow [Australie] ; Claire Julian-Reynier [France] ; Rebecca Dring [Australie] ; Patrick Festy [France] ; Pierre Fenaux [France] ; Norbert Vey [France] ; Julien Mancini [France]Source :
- Leukemia research [ 1873-5835 ] ; 2016.
Descripteurs français
- KwdFr :
- MESH :
English descriptors
- KwdEn :
- MESH :
- complications : Myelodysplastic Syndromes.
- etiology : Leukemia, Myeloid, Acute.
- Aged, Aged, 80 and over, Australia, Awareness, Cross-Sectional Studies, Female, France, Humans, Male, Middle Aged, Patient Participation, Risk, Surveys and Questionnaires.
Abstract
Myelodysplastic syndromes (MDS) can evolve to acute myeloid leukaemia (AML) in approximately 30% of cases. Knowing their AML risk is important for patients because it might impact adherence to care and psychological health. The aim of this study was to evaluate the awareness of AML risk among MDS patients and to study the factors associated with this awareness. A self-administered questionnaire was mailed to all members of French and Australian patients' national MDS associations. Data of 301 patients were analysed. Patients were satisfied with the information they had received, but 33.2% did not know that they had an increased risk of developing AML. Younger age, higher-risk MDS treatment, preferences for health-related information and satisfaction with information provided about treatment were the factors independently associated with awareness of AML risk. Compared to unaware patients, patients knowing their risk were more likely to participate in a hypothetical clinical trial (83.0% vs 72.4%, p=0.043). More efforts are needed to provide more systematic information about AML risk to patients wishing to know it. More research is needed to study if increasing awareness can lead to more active engagement of MDS patients in their care and can increase the rate of clinical trial participation.
DOI: 10.1016/j.leukres.2016.05.001
PubMed: 27173089
Affiliations:
- Australie, France
- Nouvelle-Galles du Sud, Provence-Alpes-Côte d'Azur, Victoria (État), Île-de-France
- Marseille, Melbourne, Paris, Sydney
- Université d'Aix-Marseille, Université de Sydney
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Ousseine</name><affiliation wicri:level="4"><nlm:affiliation>Aix-Marseille Université, Inserm, IRD, UMR912, SESSTIM, "Cancers, Biomedicine & Society" group, Marseille F-13273 France.</nlm:affiliation><orgName type="university">Université d'Aix-Marseille</orgName><country>France</country><placeName><settlement type="city">Marseille</settlement><region type="region" nuts="2">Provence-Alpes-Côte d'Azur</region></placeName></affiliation></author><author><name sortKey="Butow, Phyllis N" sort="Butow, Phyllis N" uniqKey="Butow P" first="Phyllis N" last="Butow">Phyllis N. Butow</name><affiliation wicri:level="4"><nlm:affiliation>Psycho-Oncology Co-operative Research Group (PoCoG) and Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), University of Sydney, NSW 2006, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Psycho-Oncology Co-operative Research Group (PoCoG) and Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), University of Sydney, NSW 2006</wicri:regionArea><orgName type="university">Université de Sydney</orgName><placeName><settlement type="city">Sydney</settlement><region type="état">Nouvelle-Galles du Sud</region></placeName></affiliation></author><author><name sortKey="Julian Reynier, Claire" sort="Julian Reynier, Claire" uniqKey="Julian Reynier C" first="Claire" last="Julian-Reynier">Claire Julian-Reynier</name><affiliation wicri:level="4"><nlm:affiliation>Aix-Marseille Université, Inserm, IRD, UMR912, SESSTIM, "Cancers, Biomedicine & Society" group, Marseille F-13273 France; Institut Paoli-Calmettes, Marseille F-13273 France.</nlm:affiliation><orgName type="university">Université d'Aix-Marseille</orgName><country>France</country><placeName><settlement type="city">Marseille</settlement><region type="region" nuts="2">Provence-Alpes-Côte d'Azur</region></placeName></affiliation></author><author><name sortKey="Dring, Rebecca" sort="Dring, Rebecca" uniqKey="Dring R" first="Rebecca" last="Dring">Rebecca Dring</name><affiliation wicri:level="3"><nlm:affiliation>Leukaemia Foundation of Australia, Melbourne, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Leukaemia Foundation of Australia, Melbourne</wicri:regionArea><placeName><settlement type="city">Melbourne</settlement><region type="état">Victoria (État)</region></placeName></affiliation></author><author><name sortKey="Festy, Patrick" sort="Festy, Patrick" uniqKey="Festy P" first="Patrick" last="Festy">Patrick Festy</name><affiliation wicri:level="3"><nlm:affiliation>Connaître et Combattre les Myélodysplasies, Paris, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Connaître et Combattre les Myélodysplasies, Paris</wicri:regionArea><placeName><region type="region">Île-de-France</region><region type="old region">Île-de-France</region><settlement type="city">Paris</settlement></placeName></affiliation></author><author><name sortKey="Fenaux, Pierre" sort="Fenaux, Pierre" uniqKey="Fenaux P" first="Pierre" last="Fenaux">Pierre Fenaux</name><affiliation wicri:level="3"><nlm:affiliation>AP-HP, Hôpital Saint-Louis, Service d'Hématologie Clinique, Groupe Francophone des Myélodysplasies (GFM), Paris, France; Paris 7 University, Paris, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>AP-HP, Hôpital Saint-Louis, Service d'Hématologie Clinique, Groupe Francophone des Myélodysplasies (GFM), Paris, France; Paris 7 University, Paris</wicri:regionArea><placeName><region type="region">Île-de-France</region><region type="old region">Île-de-France</region><settlement type="city">Paris</settlement></placeName></affiliation></author><author><name sortKey="Vey, Norbert" sort="Vey, Norbert" uniqKey="Vey N" first="Norbert" last="Vey">Norbert Vey</name><affiliation wicri:level="1"><nlm:affiliation>Institut Paoli-Calmettes, Marseille F-13273 France; Aix-Marseille Université, Inserm, CNRS, UM105, CRCM, Marseille F-13273, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Institut Paoli-Calmettes, Marseille F-13273 France; Aix-Marseille Université, Inserm, CNRS, UM105, CRCM, Marseille F-13273</wicri:regionArea><wicri:noRegion>13273</wicri:noRegion><placeName><settlement type="city">Marseille</settlement><region type="région" nuts="2">Provence-Alpes-Côte d'Azur</region></placeName></affiliation></author><author><name sortKey="Mancini, Julien" sort="Mancini, Julien" uniqKey="Mancini J" first="Julien" last="Mancini">Julien Mancini</name><affiliation wicri:level="4"><nlm:affiliation>Aix-Marseille Université, Inserm, IRD, UMR912, SESSTIM, "Cancers, Biomedicine & Society" group, Marseille F-13273 France; APHM, Timone Hospital, Public Health Department (BioSTIC), Marseille F-13385, France. Electronic address: julien.mancini@univ-amu.fr.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Aix-Marseille Université, Inserm, IRD, UMR912, SESSTIM, "Cancers, Biomedicine & Society" group, Marseille F-13273 France; APHM, Timone Hospital, Public Health Department (BioSTIC), Marseille F-13385</wicri:regionArea><wicri:noRegion>13385</wicri:noRegion><placeName><settlement type="city">Marseille</settlement><region type="région" nuts="2">Provence-Alpes-Côte d'Azur</region><settlement type="city">Marseille</settlement></placeName><orgName type="university">Université d'Aix-Marseille</orgName></affiliation></author></analytic><series><title level="j">Leukemia research</title><idno type="eISSN">1873-5835</idno><imprint><date when="2016" type="published">2016</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Aged</term><term>Aged, 80 and over</term><term>Australia</term><term>Awareness</term><term>Cross-Sectional Studies</term><term>Female</term><term>France</term><term>Humans</term><term>Leukemia, Myeloid, Acute (etiology)</term><term>Male</term><term>Middle Aged</term><term>Myelodysplastic Syndromes (complications)</term><term>Patient Participation</term><term>Risk</term><term>Surveys and Questionnaires</term></keywords><keywords scheme="KwdFr" xml:lang="fr"><term>Adulte d'âge moyen</term><term>Australie</term><term>Conscience immédiate</term><term>Enquêtes et questionnaires</term><term>Femelle</term><term>France</term><term>Humains</term><term>Leucémie aigüe myéloïde (étiologie)</term><term>Mâle</term><term>Participation du patient</term><term>Risque</term><term>Sujet âgé</term><term>Sujet âgé de 80 ans ou plus</term><term>Syndromes myélodysplasiques ()</term><term>Études transversales</term></keywords><keywords scheme="MESH" qualifier="complications" xml:lang="en"><term>Myelodysplastic Syndromes</term></keywords><keywords scheme="MESH" qualifier="etiology" xml:lang="en"><term>Leukemia, Myeloid, Acute</term></keywords><keywords scheme="MESH" qualifier="étiologie" xml:lang="fr"><term>Leucémie aigüe myéloïde</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Aged</term><term>Aged, 80 and over</term><term>Australia</term><term>Awareness</term><term>Cross-Sectional Studies</term><term>Female</term><term>France</term><term>Humans</term><term>Male</term><term>Middle Aged</term><term>Patient Participation</term><term>Risk</term><term>Surveys and Questionnaires</term></keywords><keywords scheme="MESH" xml:lang="fr"><term>Adulte d'âge moyen</term><term>Australie</term><term>Conscience immédiate</term><term>Enquêtes et questionnaires</term><term>Femelle</term><term>France</term><term>Humains</term><term>Mâle</term><term>Participation du patient</term><term>Risque</term><term>Sujet âgé</term><term>Sujet âgé de 80 ans ou plus</term><term>Syndromes myélodysplasiques</term><term>Études transversales</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">Myelodysplastic syndromes (MDS) can evolve to acute myeloid leukaemia (AML) in approximately 30% of cases. Knowing their AML risk is important for patients because it might impact adherence to care and psychological health. The aim of this study was to evaluate the awareness of AML risk among MDS patients and to study the factors associated with this awareness. A self-administered questionnaire was mailed to all members of French and Australian patients' national MDS associations. Data of 301 patients were analysed. Patients were satisfied with the information they had received, but 33.2% did not know that they had an increased risk of developing AML. Younger age, higher-risk MDS treatment, preferences for health-related information and satisfaction with information provided about treatment were the factors independently associated with awareness of AML risk. Compared to unaware patients, patients knowing their risk were more likely to participate in a hypothetical clinical trial (83.0% vs 72.4%, p=0.043). More efforts are needed to provide more systematic information about AML risk to patients wishing to know it. More research is needed to study if increasing awareness can lead to more active engagement of MDS patients in their care and can increase the rate of clinical trial participation.</div></front></TEI><affiliations><list><country><li>Australie</li><li>France</li></country><region><li>Nouvelle-Galles du Sud</li><li>Provence-Alpes-Côte d'Azur</li><li>Victoria (État)</li><li>Île-de-France</li></region><settlement><li>Marseille</li><li>Melbourne</li><li>Paris</li><li>Sydney</li></settlement><orgName><li>Université d'Aix-Marseille</li><li>Université de Sydney</li></orgName></list><tree><country name="France"><region name="Provence-Alpes-Côte d'Azur"><name sortKey="Ousseine, Youssoufa M" sort="Ousseine, Youssoufa M" uniqKey="Ousseine Y" first="Youssoufa M" last="Ousseine">Youssoufa M. Ousseine</name></region><name sortKey="Fenaux, Pierre" sort="Fenaux, Pierre" uniqKey="Fenaux P" first="Pierre" last="Fenaux">Pierre Fenaux</name><name sortKey="Festy, Patrick" sort="Festy, Patrick" uniqKey="Festy P" first="Patrick" last="Festy">Patrick Festy</name><name sortKey="Julian Reynier, Claire" sort="Julian Reynier, Claire" uniqKey="Julian Reynier C" first="Claire" last="Julian-Reynier">Claire Julian-Reynier</name><name sortKey="Mancini, Julien" sort="Mancini, Julien" uniqKey="Mancini J" first="Julien" last="Mancini">Julien Mancini</name><name sortKey="Vey, Norbert" sort="Vey, Norbert" uniqKey="Vey N" first="Norbert" last="Vey">Norbert Vey</name></country><country name="Australie"><region name="Nouvelle-Galles du Sud"><name sortKey="Butow, Phyllis N" sort="Butow, Phyllis N" uniqKey="Butow P" first="Phyllis N" last="Butow">Phyllis N. 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