1. Tailoring Symptom Management for Low-Health
Literacy Veterans: Longitudinal Results From the
PCPEP Study
David Latini, PhD, MSW
AOSW 2016
2. Acknowledgements
Charmaine Brown, BS, RN, CCRP
Cynthia Edwards, BS
Heather Goltz, PhD, LMSW
Marc Kowalkowski, PhD
Gilad Amiel, MD
Donald Griffith, MD
Shankar Giri, MD
Tae Hart, PhD
Sarah Joost, BA
Sara Knight, PhD
Peter R. Carroll, MD
Sandra R. Wilson, PhD
Funded by grant MRSGT-06-083-01-CPPB from the American Cancer Society
3. What is the Prostate?
• Walnut-sized organ that helps produce
ejaculate during sexual activity.
By Cancer Research UK - Original email from CRUK, CC BY-SA 4.0,
https://commons.wikimedia.org/w/index.php?curid=34333596
5. Prostate Cancer Treatment
Treatments Side-effects
Surgery Urinary & sexual side-effects
External beam radiation Urinary & sexual side-effects. Bowel?
Brachytherapy (“seeds”) Urinary & sexual side-effects. Bowel?
Hormone therapy 17 possible side-effects including loss
of desire, sexual dysfunction, hot
flashes, weight gain, cardiovascular
complications, depression, etc.
Focal treatment Urinary & sexual side-effects
Depression Anxiety Fear of recurrence
6. Quality of Life
Functional status – how well can you accomplish
normal tasks, bodily functions, mental health
Bother – how much does your medical condition
affect your state of mind, anxiety, depression,
“symptom distress”
Prostate cancer
Bowel, Hormonal, Sexual, Urinary
8. List of Modules
Module 1 – How to
Talk to Your Doctor
Bowel
Modules
Module 12 – Bowel Problems
Sexual
Modules
Module 7 – Pill to Help with Your Erections
Module 8 – Vacuum Devices
Module 9 – MUSE
Module 10 – Injections
Module 11 – Penile Prosthesis
Other
Modules
Module 2 – Memory and Forgetfulness
Module 3 – Feeling Tired
Module 4 – Your Feelings
Module 13 – Hot Flashes
Module 14 – Breast Changes
Urinary
Modules Module 6 – Exercise Your Way to Dryness
Module 5 – Going to the Bathroom Too Much at Night?
9. What does each module include?
Each module includes tips, facts, illustrations, some include
checklists or practice exercises
Each module comes with an audio CD with the module material
read by a professional voice actor for those who cannot read
The patient educator provides information, opportunities to
practice skills, and encouragement
10. Participant Characteristics
Overall Control Treatment
Age [Mean (SD)] 64.5 (5.1) 64.4 (5.3) 64.6 (5.1)
Race
White 66 (74.2) 30 (76.9) 36 (72.0)
Non-white 23 (25.8) 9 (23.1) 14 (28.0)
Education
Less than high school diploma 8 (9.3) 5 (13.5) 3 (6.1)
High school diploma or equivalent (GED) 17 (19.8) 6 (16.2) 11 (22.5)
Some College 36 (41.8) 19 (51.4) 17 (34.7)
Bachelor’s degree 14 (16.3) 6 (16.2) 8 (16.3)
Some postgraduate coursework or degree 11 (12.8) 1 (2.7) 10 (20.4)
Relationship Status
Living with spouse/ partner 58 (65.9) 29 (76.3) 29 (58.0)
In a significant relationship, but not living together 2 (2.3) 1 (2.6) 1 (2.0)
Not in a significant relationship 24 (27.3) 8 (21.1) 16 (32.0)
Widowed 4 (4.5) 0 (0.0) 4 (8.0)
Treatment Received
Surgery 52 (58.4) 24 (61.5) 28 (56.0)
Radiotherapy 37 (41.6) 15 (38.5) 22 (44.0)
Table 1. Participant Demographic Characteristics Stratified by Treatment Group
12. Longitudinal Results
By health literacy
SB (p < 0.05),
UB (p < 0.05),
UF (p < 0.10),
IPSS (p < 0.001),
SF (p < 0.01)
High-literacy men reported better outcomes.
By study group
IPSS (p < 0.05)
SF (p < 0.05).
By study group X health literacy
IPSS (p < 0.10)
Low-literacy men in the control group stayed the same over time, while low-literacy
men in the treatment group improved significantly.
SF (p < 0.05).
Surprisingly, SF significantly worsened for high-literacy men in the treatment
group.
13. Conclusions
Health literacy often overlooked by OSW vs other
more pressing concerns.
Improving health literacy and providing low-health-
literacy information is an important way to empower
our clients.
Tailored symptom management interventions may
improve urinary symptoms, particularly those
related to urinary obstruction.
14. Implications for Practice (1)
Consider assessing health literacy at intake
Three questions from Chew et al., Fam Med 2004;36(8):588-
94.)
How often do you have problems learning about your medical
condition because of difficulty understanding written
information?
How confident are you filling out medical forms by yourself?
How often do you have someone help you read hospital materials?
5-point Likert-type scale (1) Always to (5) Never
Health care team members can use “teach back”
technique and low-literacy-friendly written materials
15. Implications for Practice (2)
“Symptom distress” may be an important (and
frequently ignored) part of your client’s psychosocial
distress
Consider using standardized assessments to measure
symptom distress and use psychoeducation,
supportive counseling, and other techniques to
address symptom management concerns
Refer clients to MD/NP for symptom management
that can’t be addressed with psychosocial tx
Sexual symptoms may require session(s) with client
and partner or referral to a trained sex therapist
16. David M. Latini, PhD, MSW
Associate Professor of Urology & Psychiatry
Baylor College of Medicine
Research Scientist
Mental Health Care Line (116)
Michael E. DeBakey VA Medical Center
2002 Holcombe Boulevard
Houston, TX 77030
(832) 377-9927 - VM
latini@bcm.edu – email
18. What is health literacy?
“The degree to which individuals have the capacity to
obtain, process, and understand basic health
information and services needed to make
appropriate health decisions.”
(Healthy People 2010)
19. Why do we care?
Inadequate health literacy is related to
Lower reported health status
Greater mortality
Less disease-specific knowledge and ability to recognize
common signs and symptoms of illness
Greater utilization of hospital services
Less self-confidence and skills needed for self-care and
chronic disease management, including worse depression,
worse diabetes control, and worse control of HIV infection
Lower receipt of important screening procedures (e.g.
colonoscopy) and vaccinations
Poorer understanding of medication and food labels
20. Measuring health literacy
REALM - Rapid Assessment of Adult Literacy in
Medicine – 66 words clients are asked to pronounce.
The number of mispronunciations determines
literacy level
TOFHLA - Test of Functional Health Literacy in
Adults – reading comprehension (50 questions) and
numeracy (17 items).
Chew self-report measure – 16 questions where
clients rate their ability to fill out forms and
confidence for doing so. 3 questions found to be
most predictive of health outcomes
22. Best Resources
Doak, Doak, & Root,
Teaching Patients with
Low Literacy Skills,
Second Edition.
Institute of Medicine,
Health Literacy: A
Prescription to End
Confusion
23. Tips and techniques to make medical visits go better
1. Set your agenda – well visit or sick visit?
2. Try to bring a buddy if you can
3. Write down your questions and issues, with the most
important first
4. Bring a pad and pen or recorder to the visit
5. If it’s a sick visit, describe what’s wrong as well as you
can. Be specific. Be concrete.
6. Ask your provider questions to make sure that you
understand what is wrong with you and what you need
to do to take care of yourself.
7. Be firm in getting your needs met – to make sure you
understand what happened in the visit and what the
next steps are
24. Teach-Back technique
One approach is to ensure understanding by asking
clients repeat instructions back to you – the “teach-
back method.” That allows the provider to correct
any misunderstandings and ask for further questions
from the client.
1. Assess clients' baseline understanding before
providing extensive information
2. Explain things clearly using plain language. Avoid
medical or psychological jargon, vague terms, and
terms with different medical and lay meanings
25. Teach-Back technique
3. Emphasize 1 to 3 key points – Repeat these points throughout the visit
4. Effectively encourage patients to ask questions. Use an open-ended
approach – Example: ask "What questions do you have?" instead of "Do you
have any questions?”
5. Use a teach-back to confirm patient understanding
Place the burden on your shoulders to have explained the information clearly, normalize the
process, and be specific
Example: "I always ask my clients to repeat things back to make sure I have explained them clearly. I'd
like you to tell me how you're going to carry out the new action plan that we talked about today.”
Example: "When you get back to your apartment, your [husband/wife] will ask you what the case
manager said. What will you tell them?”
To confirm understanding of a skill, ask the client to demonstrate the behavior (e.g., reading a bus
schedule to get to an important appointment
26. Teach-Back technique
6. Write down important instructions
This lets clients know exactly what they should do after the
visit
7. Provide useful (low-literacy) written
materials
This gives clients more time to absorb the information. Such
materials are accessible to family members or friends who may
be helping clients.
27. Teach-Back technique
Video Example
Much of what you’ll see in the attached video shows
the “provider as expert.” How might you engage
the client using techniques from MI?
A more Motivational Interviewing-informed
approach can be seen at http://youtu.be/4V-
81fy4mYI
28. Writing literacy-friendly materials
Active voice, using common words, short sentences,
examples
Interactive component
Serif type
Lowercase lettering where possible, and
Headers and white space, which help low literacy
patients parse the written materials more effectively
29. Determining the reading level in word
One way to help you determine the reading level of a
document is to check the reading grade level using a
tool in Word called the Flesch-Kincaid reading level
and the Flesch reading ease. Both tools are available
in Word.
30. Here’s what do do in word
Click the File tab, and then click Options.
Click Proofing.
Under When correcting spelling and grammar
in Word, make sure the Check grammar with
spelling check box is selected.
Select Show readability statistics.
After you enable this feature, open a file that you
want to check, and check the spelling. When
Outlook or Word finishes checking the spelling and
grammar, it displays information about the reading
level of the document.
