title: Question prompt list responds to information needs of myelodysplastic syndromes patients and caregivers.
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.
authors: 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.
authors: Julien
authors: J
authors: Mancini
authors: Psycho-Oncology Co-operative Research Group (PoCoG) and Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), University of Sydney, NSW 2006, Australia.
authors: Phyllis N
authors: PN
authors: Butow
authors: Aix-Marseille Université, Inserm, IRD, UMR912, SESSTIM, "Cancers, Biomedicine & Society" team, Marseille F-13273, France; Institut Paoli-Calmettes, Marseille F-13273, France.
authors: Claire
authors: C
authors: Julian-Reynier
authors: Leukaemia Foundation of Australia, Melbourne, Australia.
authors: Rebecca
authors: R
authors: Dring
authors: Connaître et Combattre les Myélodysplasies, Paris, France.
authors: Patrick
authors: P
authors: Festy
authors: AP-HP, Hôpital Saint-Louis, Service d'Hématologie Clinique, Groupe Francophone des Myélodysplasies (GFM), Paris, France; Paris 7 University, Paris, France.
authors: Pierre
authors: P
authors: Fenaux
authors: Institut Paoli-Calmettes, Marseille F-13273, France; Aix-Marseille Université, Inserm, CNRS, UM105, CRCM, Marseille, F-13273, France.
authors: Norbert
authors: N
authors: Vey
mesh_terms: D017028:Caregivers; D005260:Female; D066275:Health Information Exchange; D006801:Humans; D008297:Male; D009190:Myelodysplastic Syndromes / Q000175:diagnosis* / Q000401:mortality / Q000628:therapy*; D011379:Prognosis; D012307:Risk Factors; D011795:Surveys and Questionnaires
keywords: Family caregivers; Information needs; Myelodysplastic syndromes; Prognosis; Question prompt sheet