Patients' understanding of disease status and treatment plan at initial hematopoietic stem cell transplantation consultation

Bone Marrow Transplant. 2006 Mar;37(5):479-84. doi: 10.1038/sj.bmt.1705264.

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.

MeSH terms

  • Data Collection
  • Decision Making
  • Health Status
  • Hematologic Diseases*
  • Hematopoietic Stem Cell Transplantation*
  • Humans
  • Informed Consent / standards
  • Patient Education as Topic / standards*
  • Prognosis
  • Referral and Consultation / standards*
  • Risk Assessment