Examining Decision Making Styles in Patients with Sickle Cell Disease (SCD) Regarding Allogeneic Stem Cell Tranplantation (ASCT)

Abstract

Background: ASCT is currently the only curative option of cure for patients (pts) with sickle-cell disease. Assessing the risk and benefits of ASCT in pts with SCD is challenging due to variability in the morbidity and mortality of the disease and ASCT for individual pts. The impact of transplantation on quality of life, patient understanding of ASCT, and physician factors, all influence treatment selection. Individuals' decision-making styles can influence how patients evaluate complex treatment decisions and thus how they view ASCT.Methods: To examine how patients with SCD make treatment decisions we performed a pilot study in which we administered an 80-item questionnaire to assess pts': Desired Role in decision making, Need for Cognition, Need for Structure, Personal Fear of Invalidity, and General Decision Making style. During the visit, the research team and pt discussed the risks and benefits of ASCT and how they view their current treatment. Then, a 38-item post-visit questionnaire was administered to assess patients' strength of preference for ASCT, perceptions of physician and caregiver's preferences, and decision satisfaction. Questions were derived from previously validated questionnaires and used 5-point or 6-point Likert scale.Results: Questionnaires were administered to 25 pts (6 Sickle-Hemoglobin C (SC), 18 sickle cell anemia (SS), and 1 Sickle Beta-Thalassemia) undergoing evaluation of sickle cell disease. Patients were 18–71 years of age with 36% of pts being male. On an average, pts had experienced 4–7 episodes of sickle-cell crisis (min 0–3, max 16+). 20% of pts rated their current health as excellent/very good, 44% good, and 36% fair/poor. All pts completed all pre-visit and post-visit questions. Most pts expressed a desire that doctors make treatment decisions alone (68% agree/strongly agree) or with pt input (64%). An equally high number of pts (64%) believed they should make treatment decisions alone or with a doctor's input. 64% of pts had high scores for rational decision making style, whereas 40% scored high for an intuitive style, 24% scored high for dependent style, and only 4% high for an avoidant style of decision making (Distribution shown in table). 72% of pts felt satisfied with the information they received for decision making and 88% were satisfied with their decision. However, 44% of pts wanted clearer advice.Conclusions: Examining pts decision making styles during the process of care is feasible and can uncover pt characteristics that are relevant for improving treatment discussions. Pts in this sample tended to use rational decision making styles but wanted clearer advice. Additional studies are needed examine these factors in larger populations of pts with sickle cell disease, understand their associations with demographic variables, and design and test decision support systems that help pts and hematologists with treatment selection.General Decision Making Style (GDMS)ValuesRationalIntuitiveDependentAvoidantSpontaneousNeed for StructureNeed for CognitionMedian20191712124452Min81010672818Max25252521195863Possible Range5–255–255–255–255–2511–6618–90