1. Jennifer A. Lyon 1, MS, MLIS, AHIP, Dr. Jessica Schumacher 2, PhD, Dr. Erin Dunbar 3, MD, Nita Ferree 1, MALIS, AHIP 1 Health Science Center Libraries 2 Department of Health Services Research, Management and Policy, College of Public Health and Health Professions 3 Department of Neurosurgery, College of Medicine University of Florida October 7, 2011

2. Objectives Establish an interdisciplinary collaboration to investigate the health information needs of brain cancer patients, their providers and caregivers Obtain feedback from patients on the potential usefulness of – an online resource guide tailored for brain cancer patients – an information prescription form

3. Why Does This Matter? Obstacles to Health Care Literacy (HCL) 2011 – Health care is increasingly complex and burdensome: – Multiple modalities, increased costs, etc. Effective communication between patients, caregivers, & providers is recognized as a vital but unmet need 1-4 : – Patients require assistance of caregiver, who may have their own limitations Brain Cancer Patients (BCPs) have additional unique challenges: – Limited motor, sensory, memory and cognitive function Understanding the HCL needs of BCPs is a huge unmet need 5. Historical HCL studies founded on well-developed hypotheses often report surprising results6. Focused Groups are validated in HCL research across cancer types 6. The need for research and practical resources for HCL regarding Brain Cancer is increasingly recognized as vital but also an unmet need

4. The Collaboration IRB-approved exploratory pilot involving a unique interdisciplinary team of investigators Principal Investigator: Dr. Erin Dunbar, Neurosurgeon Co-Investigators: – Dr. Jessica Schumacher, Health Outcomes Researcher – Nita Ferree and Jennifer Lyon, Medical Librarians – Dr. Gwen Lombard – Dr. B. Curbow Assistance was provided by – S. Salvano, MS2 (medical student)

5. Methods Subjects – Brain Cancer Patients and Health Care Providers, aged 18-89 years – Able to speak English and consent for self – Recruited from the Preston Wells Brain Tumor Therapy Center, UF&Shands, Gainesville, FL Logistics – 30-60 minute focus group sessions held in a quiet conference room – Contain 2-4 BCPs or HCPs (interviewed separately) – Facilitated by an investigator experienced in semi-structured focus group research – Voice recorded, transcribed & de-identified, then destroyed

6. Methods (2) Focus Group Content – Templated, open-ended questions on general and specific health care literacy topics regarding the: Availability, accessibility, adequacy of verbal, written and online resources. Perspectives, biases, and needs of BCPs, HCPs and caregivers from the perspective of both BCPs and HCPs. Statistical Analysis – Qualitative theme-saturation analysis (validated in HCL studies) was performed by sequential blinded investigators until consensus7. – Candidate factors and themes were incorporated into a collective item bank – Was continued until a saturation of themes has been met – Accuracy of data was verified by listening to recordings twice before they are erased

7. Focus Groups DateSubjectsNumber 5/7/2010Health Care Providers3 6/10/2010Brain Cancer Patients2 7/7/2010Brain Cancer Patients2 3/30/2011Brain Cancer Patients2 4/27/2011Brain Cancer Patients3 6/8/2011Brain Cancer Patients2 Total HCP: 3Total BCP: 11

8. Focus Group - Providers

9. Focus Groups - Patients

10. Patient Needs

11. Patient-Identified Caregiver Needs

12. Tailored Online Resource “Informed Cancer Patients” HSC libraries website, utilizing the “Campus Guides” software platform http://guides.uflib.ufl.edu/Patients Disease, Treatment, Prognosis, Clinical Trials Assistance Programs & Services for patients and caregivers Counseling, Support, & Therapy

13. Response to Resource

14. Information Prescription Form

15. Response to Form

16. Continuing Research IRB Protocol Modified to allow direct consenting and participation of caregivers as of June, 2011 Further focus groups will be conducted within the clinic itself, with an emphasis on caregiver information needs Interventional studies based on focus group results will be investigated

17. Bibliography 1. S. Jenks, NEJM, ’09 2. C Knapp, Pediatr Blood Cancer, ‘11 3. Liu, C, J Cancer Educ., ‘11 4. Kontos, EZ, cancer., ‘11 5. Institute of Medicine, ‘03; 6. Leydon, ‘01; 7. Qualitative Methods for Health Care Research, ’06; 8. Caring for the brain tumor patient: Family caregiver burden and unmet needs Jane R. Schubart, Mable B. Kinzie, and Elana Farace; Neuro-Oncology, ’08; 9. Heath literacy: more choice, but do cancer patients have the skills to decide?. Manning, D. European Journal of Cancer Care, ’06 10. Information needs of patients with cancer: results from a large study in UK cancer centres. Jenkins V., F. L. British Journal of Cancer, ‘01., 11. R Stupp, ‘05

18. Thank you! Any Questions? Contact me at: jalyon@ufl.edujalyon@ufl.edu