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Permanent Link: http://ufdc.ufl.edu/IR00003452/00001
 Material Information
Title: Identifying the Health Information Needs of Brain Cancer Patients and Their Caretakers: An Interdisciplinary Collaboration
Physical Description: Conference Papers
Creator: Lyon, Jennifer
Conference: Southern Chapter of the Medical Library Association
 Notes
Acquisition: Collected for University of Florida's Institutional Repository by the UFIR Self-Submittal tool. Submitted by Jennifer Lyon.
General Note: SCMLA conference presentation, October 7, 2011
 Record Information
Source Institution: University of Florida Institutional Repository
Holding Location: University of Florida
Rights Management:
This item is licensed with the Creative Commons Attribution Non-Commercial No Derivative License. This license allows others to download this work and share them with others as long as they mention the author and link back to the author, but they can’t change them in any way or use them commercially.
System ID: IR00003452:00001


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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

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Objectives E stablish 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

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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

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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)

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Methods Subjects Brain Cancer Patients and Health Care Providers, aged 18 89 years Able to speak English and consent for self R ecruited 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

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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

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Focus Groups Date Subjects Number 5/7/2010 Health Care Providers 3 6/10/2010 Brain Cancer Patients 2 7/7/2010 Brain Cancer Patients 2 3/30/2011 Brain Cancer Patients 2 4/27/2011 Brain Cancer Patients 3 6/8/2011 Brain Cancer Patients 2 Total HCP: 3 Total BCP: 11

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Focus Group Providers

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Focus Groups Patients

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Patient Needs

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Patient Identified Caregiver Needs

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Tailored Online Resource platform http :// guides.uflib.ufl.edu/Patients Disease Treatment, Prognosis, Clinical Trials Assistance Programs & Services for patients and caregivers Counseling Support & Therapy

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Response to Resource

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Information Prescription Form

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Response to Form

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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

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Bibliography 1. S. Jenks, NEJM, 2 C Knapp, Pediatr 3 4 Kontos 5 6 Leydon 7 8 Caring for the brain tumor patient: Family caregiver burden and unmet needs Jane R. Schubart Mable B. Kinzie and Elana Farace ; Neuro Oncology, 9 Heath literacy: more choice, but do cancer patients have the skills to decide?. Manning, D. European Journal of Cancer Care 10 Information needs of patients with cancer: results from a large study in UK cancer centres 11 R Stupp

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