Health Literacy andMedication Awareness inOutpatient Neurology    Roma Bhatia    Mentored by: Dr. Nabila Dahodwala, MD MS
AgendaBackgroundSignificanceQuestions & Study DesignHypothesisPreliminary ResultsLimitationsSummary and Next Steps
BACKGROUND
What is “Health Literacy”?• First used in 1974.• Capacity to obtain , process, and understand basic* health  information a...
Medical literacy vs. health literacy    • Knowledge, skills,      abilities, that pertain to      interactions with health...
SIGNIFICANCE
What’s the point?    • In 2003                         1                 • 30 million American adults had Below Basic pros...
Health Literacy in the past• Relationship of functional health literacy to patients  knowledge of their chronic disease: a...
But why now?• A neurologist’s dictum: “diagnose everything, treat nothing”?• Select recently FDA approved MS, epilepsy, AD...
New Anti-epileptic drugs 2009 Conference on new antiepileptic drugs highlights 15 new drugs in the pipeline. •   brivarace...
Prevalence in US population     • Neurological conditions are fairly common in the general       population:              ...
QUESTIONS AND STUDY DESIGN
Questions What is the prevalence of inadequate, marginal, and  adequate health literacy in ambulatory neurology patients?...
Hypothesis   • At least 35% of cognitively intact patients seen in Neurology clinic                                       ...
Study DesignCross sectional studyOutpatient Neurology at HUPResident Clinic- 2 afternoons/weekConvenience Sample
Role1) Created Data Dictionary2) Recruited Patients and administered Survey    S-TOFHLA    Single Item Test & Interview ...
Patient Population in HUP NeurologyResident Clinic• Tend to be elderly, on multiple medications, and have frequent  contac...
Inclusion Criteria: Binocular VisualAcuity Test and MMSE           Purpose:           1) Vision Screen to insure          ...
Single Item Test   “How confident are you filling out medical forms by yourself ?”  Extremely     Quite a bit     Somewhat...
Interview: Social Support, Comorbidities,and Medications    “Do you have a caretaker at home?”      “Do you have a close f...
3:       Test of Functional Health Literacy in         Adults: TOFHLA                                Numeracy     Reading
Chart Review
PRELIMINARY RESULTS
Demographics• Recruited 40 patients since July 2011.                    Participants by Race (in %)                       ...
Preliminary Results-QuestionnaireSelf-Confidence Level in    Number   Percentfilling out medical formsNot at all          ...
S-TOFHLAHealth Literacy Level    Number        PercentInadequate               1/40          0.025Marginal                ...
Single Item TestQ: How well does the single item predict marginal or inadequate literacy?  Criteria 1                     ...
LIMITATIONS
Comparing Participants and Non ParticipantsParticipation rate: 53.5% [since 7-18-11]          Gender of Participants and N...
Race of Participants and Non-Participants0.60.50.4                                                      Participants      ...
Participants vs. Non Participants by age0.45 0.40.35 0.3                                                                  ...
Characterizing the Non-Participants (cont’d)• Non participatory males  Age range      Number  20-30          0  30-40     ...
Non-Participatory Males by Age and Race0.35                                             0.33 0.30.25                      ...
Summary and next steps
 TOFHLA levels at HUP Neurology are higher than  expected. No considerable differences between  participants and non-par...
Lessons Learned…• There is no such thing as having too many statistics/methods  oriented classes.• “Research” is a team en...
Thank you!Research Team:o Dr. Nabila Dahodwala, MD MSo Dr. Jori Fleisher, MDSUMR and LDI:o Joanne Levyo Lissy Maddeno Mega...
Health Literacy in Neurology Patients
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Health Literacy in Neurology Patients

  1. 1. Health Literacy andMedication Awareness inOutpatient Neurology Roma Bhatia Mentored by: Dr. Nabila Dahodwala, MD MS
  2. 2. AgendaBackgroundSignificanceQuestions & Study DesignHypothesisPreliminary ResultsLimitationsSummary and Next Steps
  3. 3. BACKGROUND
  4. 4. What is “Health Literacy”?• First used in 1974.• Capacity to obtain , process, and understand basic* health information and services needed to make appropriate health decisions.
  5. 5. Medical literacy vs. health literacy • Knowledge, skills, abilities, that pertain to interactions with health care system • Cognitive/social skills which help individuals to be motivated, informed, and coached for taking care of their health
  6. 6. SIGNIFICANCE
  7. 7. What’s the point? • In 2003 1 • 30 million American adults had Below Basic prose literacy (14%) • 27 million had Below Basic document literacy (12%) • 46 million had Below Basic quantitative literacy (22%) • 35-80% of 65 year olds have inadequate or marginal health literacy. 2 • Associated with poorer self reported health, higher hospitalization 3, 4, 5, 6 rates, higher mortality than in age matched controls.1. Kutner,M.,Greenberg, E., Jin,Y., Boyle, B.,Hsu,Y., and Dunleavy, E. (2007). Literacy in Everyday Life: Results From the 2003, National Assessment of AdultLiteracy (NCES 2007–480).U.S.Department of Education.Washington,DC: National Center for Education Statistics.2. Baker DW, Wolf MS, Feinglass J, et al. Health literacy and mortality among elderly persons. JAMA 2007:167(14):1503-1509.3. Baker DW, Parker RM, Williams, MV, Clark WS. Health literacy and the risk of hospital admission. J Gen Intern Med 1998;13(12)791-798.4. Sudore RL, Yaffe K, Satterfield S, et al. Limited literacy and mortality in the elderly: the Health, Aging, and Body Composition Study. J Gen Intern Med2006;21(8)806 812.5. Gazmararian JA, Williams MV, Peel J, Baker DW. Health literacy and knowledge of chronic disease. Patient Educ Couns 2003;51(3):267-275.6. Williams MV, Baker DW, Honig eg, ET AL. Inadequate literacy is a barrier to asthma knowledge and self-care. Chest 1998;114(4):1008-1015.
  8. 8. Health Literacy in the past• Relationship of functional health literacy to patients knowledge of their chronic disease: a study of patients with hypertension and diabetes (Williams et. al, 1998)• Adherence to combination antiretroviral therapies in HIV patients of low health literacy (Kalichman et. al, 1999)• Association of health literacy with diabetes outcomes (Schillinger et. al, 2002)
  9. 9. But why now?• A neurologist’s dictum: “diagnose everything, treat nothing”?• Select recently FDA approved MS, epilepsy, AD, Parkinson drugs • Ampyra (dalfampridine) For the improvement of walking in patients with multiple sclerosis, Approved January 2010 • Axona (caprylidene); Accera; For the treatment of Alzheimers disease, Approved March 2009 • Extavia (Interferon beta-l b); Novartis; For the treatment of relapsing multiple sclerosis, Approved August of 2009 • Sabril (vigabatrin); Lundbeck, Inc.; For the treatment of infantile spasms and complex partial seizures, Approved August 2009 • Stavzor (valproic acid delayed release); Banner Pharmacaps; For the treatment of bipolar manic disorder, seizures and migraine headaches, Approved July 2008 • Vimpat (lacosamide); Schwarz Pharma; For the treatment of partial-onset seizures in adults with epilepsy, Approved October 2008 • Amrix (cyclobenzaprine hydrochloride extended release); Cephalon; For the treatment of muscle spasm associated with acute, painful musculoskeletal conditions, Approved February 2007 • Exelon (rivastigmine tartrate); Novartis; For the treatment of Alzheimers and Parkinsons disease- related dementia, Approved July 2007 • Apokyn (apomorphine hydrochloride); Mylan Bertek Pharmaceuticals; For the treatment of acute, intermittent hypomobility episodes associated with advanced Parkinson’s disease, Approved April, 2004 http://www.centerwatch.com/drug-information/fda-approvals/drug-areas.aspx?AreaID=10
  10. 10. New Anti-epileptic drugs 2009 Conference on new antiepileptic drugs highlights 15 new drugs in the pipeline. • brivaracetam (ucb 34714), • carisbamate (RWJ-333369), • 2-Deoxy-D-glucose, • eslicarbazepine acetate, • ganaxolone, • huperzine A, JZP-4, • lacosamide, • NAX-5055, • propylisopropyl acetamide (PID), • retigabine, • T2000, • tonabersat (SB-220453), • valrocemide • YKP3089.
  11. 11. Prevalence in US population • Neurological conditions are fairly common in the general population: • Stroke is the third most common cause of death in the US, with 700,000 cases yearly. 6 • Prevalence estimates of Multiple Sclerosis in the US range from 6-177 cases per 100,000 people. 7 • Nearly 1 percent of people in the US meeting criteria for epilepsy by age 20.6. Ropper AH, Samuels MA, Adams and Victors Principles of Neurology, 9e: "Chapter 34. Cerebrovascular Diseases.”7. Ropper AH, Samuels MA, Adams and Victors Principles of Neurology, 9e "Chapter 36. Multiple Sclerosis and Allied Demyelinating Diseases.”
  12. 12. QUESTIONS AND STUDY DESIGN
  13. 13. Questions What is the prevalence of inadequate, marginal, and adequate health literacy in ambulatory neurology patients? Can we validate a single screening question as a marker for inadequate health literacy in this population? Is health literacy associated with presence of social support systems and self-directed learning behaviors? Is health literacy in this population associated with presence of comorbid conditions, medication awareness, and outpatient non-attendance?
  14. 14. Hypothesis • At least 35% of cognitively intact patients seen in Neurology clinic 1 will have inadequate health literacy. • Single question can be validated as a screening tool for assessing inadequate health literacy in this population.Williams MV, Parker RM, Baker DW, et al. Inadequate functional health literacy among patients at two public hospitals.JAMA 1995;274:1677-1682.
  15. 15. Study DesignCross sectional studyOutpatient Neurology at HUPResident Clinic- 2 afternoons/weekConvenience Sample
  16. 16. Role1) Created Data Dictionary2) Recruited Patients and administered Survey S-TOFHLA Single Item Test & Interview Chart Review
  17. 17. Patient Population in HUP NeurologyResident Clinic• Tend to be elderly, on multiple medications, and have frequent contact with healthcare system• Based on a descriptive study from 2005-2007, common condition treated in clinic: • Headaches • Epilepsy • Neuromuscular • Infectious/inflammatory • Neurovascular
  18. 18. Inclusion Criteria: Binocular VisualAcuity Test and MMSE Purpose: 1) Vision Screen to insure ability to read the test that measures health literacy. 2) MMSE to test for cognitive impairment related to dementia. DLROW
  19. 19. Single Item Test “How confident are you filling out medical forms by yourself ?” Extremely Quite a bit Somewhat A little bit Not at all
  20. 20. Interview: Social Support, Comorbidities,and Medications “Do you have a caretaker at home?” “Do you have a close friend or family member in the health care field who you talk to about medical questions?” “What are the names of medications that you take for your neurologic problems?”
  21. 21. 3: Test of Functional Health Literacy in Adults: TOFHLA Numeracy Reading
  22. 22. Chart Review
  23. 23. PRELIMINARY RESULTS
  24. 24. Demographics• Recruited 40 patients since July 2011. Participants by Race (in %) Gender of Participants (in %) 0.8 0.6 0.7 0.5 0.6 0.4 0.5 0.3 0.4 0.2 0.3 0.1 0.2 0 0.1 White African Hispanic 0 American/Black Male Female Age Distribution of Participants Level of Education of Participants (in %) 0.4 50 0.35 0.3 40 0.25 30 0.2 0.15 20 0.1 0.05 10 0 0 Less than High School Some College College Grad Graduate 20-29 30-39 40-49 50-59 60-69 70-79 High School Grad Degree
  25. 25. Preliminary Results-QuestionnaireSelf-Confidence Level in Number Percentfilling out medical formsNot at all 1/40 0.025A little bit 4/40 0.10Somewhat 7/40 0.175Quite a bit 10/40 0.25Extremely 18/40 0.45Caregiver Number PercentPresent 10/40 0.25Absent 30/40 0.75Caregiver presence at Number PercentappointmentRarely or never 24/40 0.60Less than 50% of the time 8/40 0.20More than 50% of the time 8/40 0.20
  26. 26. S-TOFHLAHealth Literacy Level Number PercentInadequate 1/40 0.025Marginal 4/40 0.10Adequate 35/40 0.875Marginal/Inadequate 5/40 .125Correlating S-TOFHLA Level and ScoreInadequate = 0-53 ptsMarginal= 54-66 ptsAdequate = 67-100 pts Mean TOFHLA score: 86.975 Minimum TOFHLA score: 49 Maximum TOFHLA score: 100 (frequency: 7)
  27. 27. Single Item TestQ: How well does the single item predict marginal or inadequate literacy? Criteria 1 Criteria 2 Correlation Self confidence TOFHLA scores 0.535 Sensitivity and Specificity “Disease” + “Disease” - “Test” + 4 (TP) 1 (FP) “Test” - 1 (FN) 34 (TN) Disease + = "Low TOFHLA" = marginal/inadequate literacy Disease - = "High TOFHLA" = adequate literacy Sensitivity = 80% Test= "Self Confidence" Specificity = Test + = "Low self confidence “not at all; a little bit” 97.1 % Test - = "High Self confidence “somewhat, quite a bit, extremely”
  28. 28. LIMITATIONS
  29. 29. Comparing Participants and Non ParticipantsParticipation rate: 53.5% [since 7-18-11] Gender of Participants and Non-participants (in %) 0.8 0.7 0.6 Participants 0.5 Non Participants 0.4 0.3 0.2 0.1 0 Male Female
  30. 30. Race of Participants and Non-Participants0.60.50.4 Participants Non-participants0.30.20.1 0 White African American/Black Hispanic
  31. 31. Participants vs. Non Participants by age0.45 0.40.35 0.3 Participants0.25 Non-Participants 0.20.15 0.10.05 0 20-29 years old 30-39 years old 40-49 years old 50-59 years old 60-69years old 70-79 years old
  32. 32. Characterizing the Non-Participants (cont’d)• Non participatory males Age range Number 20-30 0 30-40 0 40-50 3 50-60 5 60-70 1• Non participatory females Age range Number 20-30 2 30-40 3 40-50 7 50-60 3 60-70 2
  33. 33. Non-Participatory Males by Age and Race0.35 0.33 0.30.25 0.22 0.22 0.20.15 0.11 0.11 0.10.05 0 0 0 0 0 40-50 50-60 60-70 Caucasian African American Hispanic Non Participatory Females by Age and Race 0.45 0.42 0.4 0.35 0.3 0.25 0.2 0.17 0.17 0.17 0.15 0.1 0.067 0.067 0.067 0.067 0.05 0 0 0 20-30 30-40 40-50 50-60 60-70 African American Women Caucasian Women
  34. 34. Summary and next steps
  35. 35.  TOFHLA levels at HUP Neurology are higher than expected. No considerable differences between participants and non-participants by age, race, and gender. Alter recruitment strategies • Different Penn Hospitals • By zip code • Medicaid only Add a control group: • Patients with neurological complaints at a primary care setting.
  36. 36. Lessons Learned…• There is no such thing as having too many statistics/methods oriented classes.• “Research” is a team endeavor! Time consuming to maintain database, recruit, analyze data on a 1 man team.• Organization and time management skills must be self implemented and self enforced.• There is a positive and strong correlation with meeting project goals and friendliness with various administrative staff.
  37. 37. Thank you!Research Team:o Dr. Nabila Dahodwala, MD MSo Dr. Jori Fleisher, MDSUMR and LDI:o Joanne Levyo Lissy Maddeno Megan Pellagrinoo Hoag Levinso Renee ZawackiAssociated Staff:o HUP Neurology Administrative Staff

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