Karen Kiley APN, Rose Batiste APN, Nancy Porter APN,

1. Patients’ Understanding of Disease Status and Treatment Plan at Initial Bone Marrow Transplant Consultation Karen Kiley APN, Rose Batiste APN, Nancy Porter APN, Karen Potocki APN, Miriam Volle APN, Larry Miller Psy.D, Pat Mumby Ph.D., Shari Lichtenstein MSW, Sheila Wojtowicz RN, Sandra Zakrzewski RN, Amir Toor MD, Tulio Rodriguez MD, Patrick Stiff MD

2. Opportunity Statement and Desired Outcome Many patients referred to the Bone Marrow Transplant Clinic report having limited knowledge of their disease status and treatment options, which can significantly impact their ability to make an informed decision regarding cancer treatment. This makes discussion of transplantation and its associated lethal risks difficult. Our goals are (1) to ascertain level of disease/transplant knowledge at first visit, (2) to have at least 90% of patients able to make an informed decision about bone marrow transplantation after their initial consultation with our clinic, and (3) to determine if we need to improve our education of referring physicians.

3. Most Likely Causes for Current Opportunity • Referring physicians do not present or are unaware of all pertinent information concerning disease status and treatment options • Quality of communication between physician and patient • Patients’ emotional state • Patients’ perception of disease status • Patients’ level of information seeking

4. Solutions Implemented and Progress to Date • New Patient Questionnaire (NPQ) • We were unable to identify a measure in the literature to assess patients’ level of knowledge regarding BMT, therefore, the BMT team developed the NPQ • The NPQ is intended to: • Identify differences in knowledge of disease and treatment options pre and post consultation • Detect any patient barriers to communication (i.e., emotional state, education level, performance status) • Determine areas of knowledge gained from transplant outpatient visit • Data collection using the NPQwas started in October 2002, with 75 patients participating to date • Plans are to complete the study by October 2003 (N=150)

5. Patients’ Perception of Knowledge What are your information needs about your disease? 90 82.4 80 70 60 51.4 48.6 48.6 50 Percent 40 30 17.6 16.2 20 14.9 6.8 10 0 Enough about diagnosis Enough about treatment More about diagnosis More about treatment Pre Post

6. Patients’ Perceived Preparedness What is your degree of knowledge about bone marrow/stem cell transplants? 80 73 70 59.5 60 50 40 Percent 30 21.6 20 16.2 13.5 10 5.4 0 Very informed Informed enough to decide Need more info to decide Pre Post

7. Patients’ Perceived Risk Based upon my current knowledge, I believe that transplants are: 60 56.8 50 50 40 33.8 Percent 30 20 14.9 12.2 10 8.1 8.1 4.1 0 Very risky, death likely Risky, benefits>risks Not risky Not enough info Pre Post

8. 23% of new patients reported “none” to “too little” information about their disease and treatment plan was provided by their referring oncologist. 48.6% and 82.4% of patients acknowledged they needed more information, prior to their initial BMT consultation, about their diagnosis and treatment plan, respectively. These rates dropped to 16.2% and 17.6%, respectively, following their appointment. Greater than 86% of patients report that they obtain their knowledge about treatments from their oncologist, followed by the Internet (>50%) and friends/family (>32%). 89.2% of new patients to the BMT clinic reported wanting “as much information as possible” regarding their treatment plan. 73% of new patients reported needing more information about transplants before feeling informed to make a decision about this treatment, before their BMT visit. 50% of new patients reported needing more information to rate the severity of risk for bone marrow/stem cell transplants, before their BMT visit. Results to Date

9. Results Continued • 81.8% of reporting patients indicated they obtained sufficient information at their initial BMT visit to make a decision regarding BMT. (Goal = 90%) • Over 70% of patients are optimistic about their disease, and report less negative affect following their initial BMT consultation. • Women are more likely than men to seek friends and family as sources of information about treatment (p=.05). • Patients with a college education or beyond are more likely to report using the Internet to gain knowledge about treatments (p<.05). • Following their initial consultation, patients with a college or post-graduate education are more likely to report being informed enough to make a decision or very informed about bone marrow/stem cell transplants (p=.05).

10. Next Steps • Determine if there are inter-physician variations, among faculty, in providing sufficient information to patients in making decisions about BMT and take measures to correct any differences found. • Determine whether or not program changes are needed. • Include Advanced Practice Nurses and Program Coordinators in the educational process (i.e., pre-BMT educational class). • Develop a strategy for increasing referring physician’s knowledge of BMT options.