Recognition and Treatment of a Hidden Problem

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Ycaretil Htlaeh

• Recognition and Treatment of a Hidden Problem
• Claudette Dalton, M.D.
• University of Virginia School of Medicine

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True or False?

• Most people with limited literacy are poor,
  immigrants or minorities.
• Most people with limited literacy have low IQs.
• People will tell you if they have problems
  reading.
• The number of years of schooling is a good
  general guide to determine literacy level.

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Health Literacy

• The ability to read, understand and act on health
  care information
• Does your patient understand what you are telling
  them?

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• So, how do you clean the capstan?

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Types of illiteracy

• Functional illiteracy
• Sensory/physical illiteracy
• Diabetes
• Cultural/language illiteracy
• Psychological illiteracy
• Computational literacy

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Scope of the Problem

• 21 of adult Americans are functionally
  illiteratei.e. read at 5th grade level or
  lowerOral instructions also difficult
• Additional 25 are marginally literate
• Translates to 90 million patients and 73 Billion
  dollars in extra healthcare costs
• Differs across regions
• Urban and rural often different

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National Adult Literacy Survey

• n 26,000
• Most accurate portrait of literacy in the US
• Scored on 5 levels
• Felt to be poorer scores today than in 1993
• Level 121, Level 227, Level 332, Level
  417, Level 53

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NALS Level One

• Can
• Sign name
• Find expiration date on license
• Total bank deposit entry
• Cant
• Use bus schedule, find intersection on map
• Fill out social security application
• Total costs on an order form
• Cant read a simple story to a child

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NALS Level Two

• Can
• Find intersection on map
• Locate info in news article
• Tell difference in two ticket prices (compare and
  contrast)
• Cant
• Use bus schedule
• Read a bar graph
• Write a letter of complaint

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Who pays?

• Medicare39--most of the rest paid through FICA
  taxes
• Employers17
• Out-of-pocket16
• Medicaid14
• Remaining 14 either cost shifted or written
  offi.e. we all pay

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What Happens?

• Limited general knowledge
• Do not ask for clarification
• Focus on details, hard to get them to prioritize
• Dont understand Likert scales, math
• Deal in literal/concrete concepts, not abstract
• Essential vocabulary only
• Check answers without understanding

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Why worry?

• Not keeping appointments26
• Unable to find clinic/office
• Failure to take meds correctly42 did not
  understand empty stomach
• Incomplete history
• Overuse of emergency room
• Lack of informed consent
• Diagnosis made at later stages
• Unhealthy/risky behaviors

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More reasons

• More elderly60 of adults60 years
• 45 live in poverty
• Immigrant population50 of Hispanics, 33 of
  Asians
• 40 of African Americans although majority are
  native born Caucasian
• 75 of those with an illness of 6 months are NALS
  1

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Commonwealth Fund 2001 Healthcare Quality Survey

• 6,772 adults surveyed
• Communication problems reported more commonly for
  African Americans (Af A), Hispanics (H) and Asian
  Americans (As A)
• H and Af A adults highest uninsured rates
• H and As A patients had greatest difficulty
  understanding information from doctor
• Less than one half of limited English proficient
  patients always or usually had interpreters
• Af A, H, and As A more often felt that they had
  been treated disrespectfully or with little
  understanding of their culture

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UVA Patients

• PETC study
• 536 patients over one month
• 64 had some literacy barrier
• 51 of those or 31 of total were functionally
  illiterate
• 20 had cultural issues
• Remainder had physical condition
• 32 were college educated

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Oh, I can tell

• Shame and stigma
• 67 have never told their spouses and 19 never
  told anyone
• Not stupid
• All social classes
• No racial/ethnic bias
• Amazing able to function

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Literacy Tests

• Always assume and ask in sensitive wayIs this
  difficult for you? What things do you like to
  read? Treat all the same.
• Eyes wandering over page, very slow to finish,
  sounding out words, look confused
• WRAT-3
• REALM
• SORT-R
• TOFHLA
• Cloze

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So, do I test them?

• Time/place/training
• Confidentiality and ethics
• Cost
• Reliability and validity
• Timing re patient
• Age, sight, hearing, cognitive
• Language

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UMA Study

• 100 patients
• REALM test
• Nationally4 completely illiterate vs 11 in
  UMA
• 3/10 residents guessed which illiterate
• 2/10 guessed they were when they werent

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Physical Literacy

• Sensory
• Visual
• Hearing
• Neurological
• Psychological
• Other physical
• Metabolic
• Endocrine

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Cultural/Language

• Non-English speaking
• Immigrant status
• Ethnic interpretation of illness
• Spiritual and religious beliefs
• Default answers
• Lack of insurance/transportation

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• It is all of these things that have made them
  what they are and these are the things that you
  cannot come to know by hearsay you can only know
  them if you have lived them.
• Somerset Maughan, The Razors Edge
  (Introduction), 1944.

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Comparisons of Cultural Norms and Values
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Comparisons of Cultural Norms and Values
Gardenswartz L, Rowe A. Managing Diversity A
Complete Desk Reference and Planning Guide, 1993.
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Definition of Cultural Competence

• The knowledge and interpersonal skills that
  allow providers to understand, appreciate, and
  work with individuals from cultures other than
  their own. It involves an awareness and
  acceptance of cultural differences
  self-awareness knowledge of the patients
  culture and adaptation of skills.
• AMA, Culturally Competent Health Care for
  Adolescents, 1994.

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What to do

• Whole staff must be aware and sensitive
• Speak slowly and start with context
• Quiet room with minimal distractions
• Use monosyllabic and colloquial termsavoid
  technical terms. Be concrete and use active
  voice.
• Start with the most important information first
  and limit new information
• No more than one or two instructions at a
  timeand check on each as you go Chunks and
  Checks

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More hints

• Use repetition
• Have the patient repeat the information
• Use models, sketches, pictures
• Consider follow up phone calls
• Give instructions to several of family members
• If you are rushed, get someone else to do it

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Use of Interpreters

• Deaf, blind or foreign language
• Use professionalsnot family
• Seat LEP interpreter a little behind and to the
  side of the patient and introduce both of you
  formallyseat a deaf interpreter behind and to
  the side of the doctor.
• Look at the patient, not the interpreter
• Simple language, no conditional questions with
  subjunctive tense
• Consult often, allow enough time
• NEVER ASK, Do you understand?

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Culturally Competent Healthcare Systems

• Interpreters or bilingual providers
• Cultural diversity training for staff
• Linguistically and culturally appropriate health
  education and information materials
• Tailored healthcare settings
• Task Force on Community Preventive Services, 2002.

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Other physical issues

• Must have caregiver present
• Continue to address remarks to patient
• Dont mix up disabilitiesyou do not need to
  shout at a blind man
• Go slowly

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Printed Materials

• Use pictures, photos, videos and other
  visualsincluding med charts
• Monosyllabic and simple language
• Read over the instructionshighlight important
  parts with color
• Lots of white space
• Review materials for literacy levelrewrite as
  necessary, ask patients for help

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Assessing level of literature

• Most pamphlets at 10-12th grade level
• Informed consents at 14.316th grade
• SMOG
• Frys
• Flesch

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Legal issues

• Informed consent and living wills need
  post-college level comprehension
• Must explain verbally as well as give
  writtenjust handing them the form to sign is not
  informed consent
• Legal right to understand alternatives for care
  and cost of care
• Avoid legal jargon/keep short

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UVA Resources

• Foreign Language
• For appts-21794 (Spanish)/45251(others)
• ImmediatePIC 1664 or 4551 (Spanish/day)
• PIC 1276 (All languages/wkd and night)
• CyraCommulti-lingual, dual handset
  phone45251(day) PIC 1276 (wkd/nights)
• Language Bank Liz Courain (21858) or Kristin
  Wenger (45251)

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UVA Resources, cont

• Hearing impairment
• Julie Trueblood4-8312
• Virginia Relay 711 or 1-800-828-1120
• TTY1-800-828-1140 (voice)
• http//hsc.virginia.edu/medcntr/depts/patient-ed/p
  rovider/sign.html Strategies for Communicating
  with Patients who are Deaf or Hard of Hearing
• ced2t_at_virginia.edu

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Community Resources

• Literacy Volunteers of America-Charlottesville/Alb
  emarle977-3838, lva_at_avenue.org and
  http//www.avenue.org/lva
• Southern Virginia Higher Education Center in
  South Boston434-572-5450 jmidatlake_at_hotmail.com
• InterpretersdeafGregory Propp, 243-5180
• Language Bank924-5251
• Promotoras de SaludEsther Miller263-4858 or
  Beth Rodgers, 540-568-3383 or rodgerbe_at_jmu.edu

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National Resources

• National Center for Family Literacy
• 1-877-FAMLIT-1 or www.famlit.org
• AHECs
• AMA Foundation1-800-621-8335 or
  www.amafoundation.org/go/healthliteracy
• Working with Deaf and Hard of Hearing Pts
  www.interpretingsolutionsinc.com
• ACP http//www/acponline.org/journals/news/nov97/
  learncom.htm

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• follow the counsel of Aristotle, to speak as
  the common people do, to think as wise men do
  and so should every man understand him, and the
  judgment of wise men follow him. Roger Ascham
  (1515-1568)