Permanent Link: http://ufdc.ufl.edu/IR00003448/00001
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Title: Illuminating the Distinct Information Needs of Brain Cancer Patients and Their Caretakers During Routine Clinical Care
Physical Description: Conference Papers
Creator: Lyon, Jennifer
Conference: Medical Library Association Annual Conference
Acquisition: Collected for University of Florida's Institutional Repository by the UFIR Self-Submittal tool. Submitted by Jennifer Lyon.
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Source Institution: University of Florida Institutional Repository
Holding Location: University of Florida
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System ID: IR00003448:00001

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Illuminating the Distinct Information Needs of Brain Cancer Patients and Their Caretakers During Routine Clinical Care Jennifer A. Lyon 1 MS, MLIS, AHIP, Dr Jessica Schumacher 2 PhD, Dr Erin Dunbar 3 MD, Jennifer West 3 RM, BSN, CCRP, Mary Edwards 1 EdD MLIS, 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


Health Literacy: Brain Cancer Patients Brain Cancer Patients (BCPs) are unique even among cancer patients because brain functions are disrupted Damage to personality, memory, cognitive, motor & sensory function Shocking and serious nature of the diagnosis Difficulties surround providing appropriate information while accommodating the uncertainty surrounding outcomes Patients unable to process information immediately after diagnosis Information Information must be repeated and well timed Information must be high quality, understandable and reliable Providing high quality health information to brain cancer patients in a timely and effective manner is a significant unmet need


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


Methods Subjects Brain Cancer Patients and Health Care Providers, aged 18 89 years who are 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 Semi structured interview, open ended questions Data Analysis De identified transcripts subjected to qualitative thematic analysis Themes compared and discussed until consensus reached


Focus Groups Round 1 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


Key Finding Caregivers are vitally important! Patients are seriously ill and shocked Caregivers take on much of the information gathering and assessment Caregivers often speak on behalf of the patients Given these findings the IRB Protocol was rewritten to allow inclusion of caregivers in focus groups and


Focus Groups Round 2 Date Subjects Number 11/22/11 Caregivers & Brain Cancer Patients 2 11/28/11 Caregivers & Brain Cancer Patients 2 12/2/11 Social Workers 3 12/5/11a Caregivers & Brain Cancer Patients 2 12/5/11b Caregivers & Brain Cancer Patients 3 12/13/11 Caregivers 2 Total Caregivers : 6 Total BCP: 4 Total HCPs: 3


Focus Group Providers Health care professionals know that there are unique information needs at each stage. [the HCPs] say for the next 20 minutes. I not going to be absorbed. So [the HCPs] have to be prepared to come back and


Providers: Themes Important time periods are: first 24 48 hours post diagnosis (determining the plan of care) 7 10 days post questions formulated) Importance of providing info on what to expect and how to prepare Importance of providing info that can be reflected on later and shared with others (caregivers) Importance of talking face to face with provider team, patient and caregivers


Providers: Themes Acknowledgement that each individual has unique set of questions and needs Pre made (cancer society, etc ) info is often too generic/general Take time to allow patients/caregivers to write down verbal information Use of the Internet: pluses and minuses Acknowledgement that both short term and long term information needs exist Important to repeat information in different modes at separate times


Focus Groups Patients went to [ hospital] and they took me into emergency and they did a CAT scan thing. And they come out with a little picture with a little dot... He said, you have [a] tumor Question: When you first learned about your types of questions did you have about it? Patient: Where do I go to get it treated? I go to appointments with both of them after I had this radiation then one Question: Did you ever feel, uh, confused by the information that you were getting from these different doctors? Patient: I kind of let my wife worry about I just let her deal with getting me to where I needed to go.


Patients: Themes Focus on the rarity/lethality of their brain cancer and are Value experience, quality, and personal attention in physicians They will search for the best physicians, best hospitals, best technologies Willing to travel or be inconvenienced to get better care Want real time information knowledge is power/control Can have serious problems understanding what providers are saying Want honesty frankness, even guesses/opinions from providers & value their opinions


Patients: Themes Seek out clinical trials, new treatments, new technologies, more options Want timely information from providers to relieve anxiety and facilitate preparation Want practical information about where events take place, how to get there, park, etc. Get lost searching the internet & have limited time and energy to spend on it High utilization of social networking sites for contact with family/friends and other patients A support network is essential for providing information and filtering out the scary and inaccurate or dangerous


Focus Groups Caregivers took what they [gave] us and went to WebMD and pulled up some information and I read what I could about it, but it was very minimal and person, but takes both of us to put all this together to begin with, we take notes and notes and notes, it happens that we both have notebooks full of information where we jotted down every word [ HCP ] said to us then we go back and try to decipher it moving, they have a video? L et us sit and watch a video that shows us what it looks like for a person to have seizure, if he was to have a seizure and looks when someone has a seizure and this is what you should


Caregiver Themes Heavy responsibilities: calling providers, transportation, collecting medical records, searching Internet informing others, making plans Concerned about maintaining family life Want to know what to expect and how to respond Level of medical knowledge directly related to satisfaction with provided information Issue with understanding medical terminology Want clear information on progression and prognosis


Caregiver Themes Want information useful for planning the future Frustration with online sources (combined with lack of knowledge of available sources) Issues with getting too much or too little information Varying level of satisfaction with HCP communication Experienced communication problems with HCPs Desire to communicate with others sharing the same experience outlook while preparing for the worst


Tailored Online Resource website, utilizing the http :// guides.uflib.ufl.edu/Patients Disease Treatment, Prognosis, Clinical Trials Assistance p rograms and services for patients and caregivers Counseling support, and treatment options


Response to Resource Patients think we should be advertising the website and the clinic itself Patients perceive value of website resource for future use, but not at initial diagnosis Patients believe that caregivers will make more use of it.


Information Prescription Form


Response to Form Information prescription idea perceived as highly valuable prescription to go to a librarian service would be great for a lot of people [this month] on


Future Directions Data from second round of focus groups still under analysis Interventional studies based on needs assessment will be considered Web resource will continue to be developed and updated Sharing information with providers to help them meet these needs


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