Question prompt list responds to information needs of myelodysplastic syndromes patients and caregivers.
Identifieur interne : 002933 ( Main/Exploration ); précédent : 002932; suivant : 002934Question prompt list responds to information needs of myelodysplastic syndromes patients and caregivers.
Auteurs : Julien Mancini [France] ; Phyllis N. Butow [Australie] ; Claire Julian-Reynier [France] ; Rebecca Dring [Australie] ; Patrick Festy [France] ; Pierre Fenaux [France] ; Norbert Vey [France]Source :
- Leukemia research [ 1873-5835 ] ; 2015.
Descripteurs français
- KwdFr :
- MESH :
English descriptors
- KwdEn :
- MESH :
- diagnosis : Myelodysplastic Syndromes.
- mortality : Myelodysplastic Syndromes.
- therapy : Myelodysplastic Syndromes.
- Caregivers, Female, Health Information Exchange, Humans, Male, Prognosis, Risk Factors, Surveys and Questionnaires.
Abstract
Myelodysplastic syndromes (MDS) are heterogeneous hematopoietic malignancies, often poorly understood by patients. Our aim was to obtain the views of MDS patients and family caregivers about a targeted question prompt list's (QPL) potential utility, and to evaluate their information needs. This targeted QPL, which included 53 suggested questions patients may ask onco-haematologists, was developed. A self-administered questionnaire eliciting feedback about the QPL and assessing its perceived usefulness was mailed to all members of Australian and French patients' national MDS associations. Respectively, 301 MDS patients and 53 caregivers responded. Most (76.4%) were satisfied with the information provided at MDS disclosure but would have liked more information about prognosis (69.3%). Consistently, the three most useful questions focused on the risk of leukaemic transformation, the impact of treatment on chances of survival and the severity of the MDS. The majority (62.9%) of both patients and caregivers perceived the QPL as 'absolutely' useful, particularly those who would have preferred more information about prognosis (adjusted odds ratio=2.3, 95% confidence interval [1.2-4.2], p=0.008). Our proposal of intervention through a QPL was generally welcomed and could particularly address specific MDS patient needs regarding prognosis information.
DOI: 10.1016/j.leukres.2015.03.011
PubMed: 25850728
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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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><wicri:noRegion>13273</wicri:noRegion></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2015">2015</date><idno type="RBID">pubmed:25850728</idno><idno type="pmid">25850728</idno><idno type="doi">10.1016/j.leukres.2015.03.011</idno><idno type="wicri:Area/PubMed/Corpus">002C76</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Corpus" wicri:corpus="PubMed">002C76</idno><idno type="wicri:Area/PubMed/Curation">002C02</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Curation">002C02</idno><idno type="wicri:Area/PubMed/Checkpoint">002C02</idno><idno type="wicri:explorRef" wicri:stream="Checkpoint" wicri:step="PubMed">002C02</idno><idno type="wicri:Area/Ncbi/Merge">002423</idno><idno type="wicri:Area/Ncbi/Curation">002423</idno><idno type="wicri:Area/Ncbi/Checkpoint">002423</idno><idno type="wicri:Area/Main/Merge">002933</idno><idno type="wicri:Area/Main/Curation">002933</idno><idno type="wicri:Area/Main/Exploration">002933</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">Question prompt list responds to information needs of myelodysplastic syndromes patients and caregivers.</title><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" team, 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" team, Marseille F-13273, France; APHM, Timone Hospital, Public Health Department (BioSTIC), Marseille F-13385</wicri:regionArea><placeName><region type="region" nuts="2">Provence-Alpes-Côte d'Azur</region><settlement type="city">Marseille</settlement></placeName><orgName type="university">Université d'Aix-Marseille</orgName></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" team, Marseille F-13273, France; Institut Paoli-Calmettes, Marseille F-13273, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Aix-Marseille Université, Inserm, IRD, UMR912, SESSTIM, "Cancers, Biomedicine & Society" team, Marseille F-13273, France; Institut Paoli-Calmettes, 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><settlement type="city">Marseille</settlement></placeName><orgName type="university">Université d'Aix-Marseille</orgName></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><wicri:noRegion>13273</wicri:noRegion></affiliation></author></analytic><series><title level="j">Leukemia research</title><idno type="eISSN">1873-5835</idno><imprint><date when="2015" type="published">2015</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Caregivers</term><term>Female</term><term>Health Information Exchange</term><term>Humans</term><term>Male</term><term>Myelodysplastic Syndromes (diagnosis)</term><term>Myelodysplastic Syndromes (mortality)</term><term>Myelodysplastic Syndromes (therapy)</term><term>Prognosis</term><term>Risk Factors</term><term>Surveys and Questionnaires</term></keywords><keywords scheme="KwdFr" xml:lang="fr"><term>Aidants</term><term>Enquêtes et questionnaires</term><term>Facteurs de risque</term><term>Femelle</term><term>Humains</term><term>Mâle</term><term>Pronostic</term><term>Syndromes myélodysplasiques ()</term><term>Syndromes myélodysplasiques (diagnostic)</term><term>Syndromes myélodysplasiques (mortalité)</term><term>Échange d'informations de santé</term></keywords><keywords scheme="MESH" qualifier="diagnosis" xml:lang="en"><term>Myelodysplastic Syndromes</term></keywords><keywords scheme="MESH" qualifier="diagnostic" xml:lang="fr"><term>Syndromes myélodysplasiques</term></keywords><keywords scheme="MESH" qualifier="mortality" xml:lang="en"><term>Myelodysplastic Syndromes</term></keywords><keywords scheme="MESH" qualifier="mortalité" xml:lang="fr"><term>Syndromes myélodysplasiques</term></keywords><keywords scheme="MESH" qualifier="therapy" xml:lang="en"><term>Myelodysplastic Syndromes</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Caregivers</term><term>Female</term><term>Health Information Exchange</term><term>Humans</term><term>Male</term><term>Prognosis</term><term>Risk Factors</term><term>Surveys and Questionnaires</term></keywords><keywords scheme="MESH" xml:lang="fr"><term>Aidants</term><term>Enquêtes et questionnaires</term><term>Facteurs de risque</term><term>Femelle</term><term>Humains</term><term>Mâle</term><term>Pronostic</term><term>Syndromes myélodysplasiques</term><term>Échange d'informations de santé</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">Myelodysplastic syndromes (MDS) are heterogeneous hematopoietic malignancies, often poorly understood by patients. Our aim was to obtain the views of MDS patients and family caregivers about a targeted question prompt list's (QPL) potential utility, and to evaluate their information needs. This targeted QPL, which included 53 suggested questions patients may ask onco-haematologists, was developed. A self-administered questionnaire eliciting feedback about the QPL and assessing its perceived usefulness was mailed to all members of Australian and French patients' national MDS associations. Respectively, 301 MDS patients and 53 caregivers responded. Most (76.4%) were satisfied with the information provided at MDS disclosure but would have liked more information about prognosis (69.3%). Consistently, the three most useful questions focused on the risk of leukaemic transformation, the impact of treatment on chances of survival and the severity of the MDS. The majority (62.9%) of both patients and caregivers perceived the QPL as 'absolutely' useful, particularly those who would have preferred more information about prognosis (adjusted odds ratio=2.3, 95% confidence interval [1.2-4.2], p=0.008). Our proposal of intervention through a QPL was generally welcomed and could particularly address specific MDS patient needs regarding prognosis information.</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="Mancini, Julien" sort="Mancini, Julien" uniqKey="Mancini J" first="Julien" last="Mancini">Julien Mancini</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="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. Butow</name></region><name sortKey="Dring, Rebecca" sort="Dring, Rebecca" uniqKey="Dring R" first="Rebecca" last="Dring">Rebecca Dring</name></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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