title: Patients' understanding of disease status and treatment plan at initial hematopoietic stem cell transplantation consultation.
abstract: Patients referred for hematopoietic stem cell transplantation (HSCT) often have knowledge deficits about their disease and overestimate their prognosis making it difficult initially to discuss potentially life-threatening transplant options. To determine patients' understanding of their disease and the adequacy of a 3-h consultation at our center, we developed a survey that measured perceived knowledge deficits of disease, prognosis, and emotional status before and after their initial consultation. Ninety nine consecutive eligible patients completed the survey. Although 76.7% claimed adequate information about their disease pre-HCST visit, 51.5 and 41.4% respectively lacked knowledge about their 1-year prognosis with and without any therapy. After the visit, 66.7% of the patients had obtained enough information to make an informed decision regarding HSCT versus 23.2% pre-visit, and a significant reduction in the need for further information was reported by 53.5% of patients (P<0.001). Patients were not overwhelmed or confused by the visit and there was a small but significant decrease in negative affect. Measures to increase patients understanding of their disease and its prognosis pre-HSCT consultation visit are warranted; however, a 3-h consultation visit provides the majority of patients with sufficient information to make an informed decision about the risk/benefit ratio of HSCT.
authors.affiliation: Department of Medicine, Loyola University Medical Center, Maywood, IL, USA. pstiff@lumc.edu
authors.forename: P J
authors.initials: PJ
authors.lastname: Stiff
authors.forename: L A
authors.initials: LA
authors.lastname: Miller
authors.forename: P
authors.initials: P
authors.lastname: Mumby
authors.forename: K
authors.initials: K
authors.lastname: Kiley
authors.forename: R
authors.initials: R
authors.lastname: Batiste
authors.forename: N
authors.initials: N
authors.lastname: Porter
authors.forename: K
authors.initials: K
authors.lastname: Potocki
authors.forename: M
authors.initials: M
authors.lastname: Volle
authors.forename: S
authors.initials: S
authors.lastname: Lichtenstein
authors.forename: S
authors.initials: S
authors.lastname: Wojtowicz
authors.forename: S
authors.initials: S
authors.lastname: Zakrzewski
authors.forename: A
authors.initials: A
authors.lastname: Toor
authors.forename: T
authors.initials: T
authors.lastname: Rodriguez
mesh_terms: D003625:Data Collection; D003657:Decision Making; D006304:Health Status; D006402:Hematologic Diseases; D018380:Hematopoietic Stem Cell Transplantation; D006801:Humans; D007258:Informed Consent / Q000592:standards; D010353:Patient Education as Topic / Q000592:standards*; D011379:Prognosis; D012017:Referral and Consultation / Q000592:standards*; D018570:Risk Assessment