1. Treating Complications of
CancerTreatment:
David Latini, PhD
Baylor College of Medicine &
HoustonVA Mental Health Care Line

2.  Peter R. Carroll, MD
 Deborah Lubeck, PhD
 Sara J. Knight, PhD
 Tom Lue, MD
 David F. Penson, MD, MPH
 Seth P. Lerner, MD
 Gilad Amiel, MD
 Don Griffith, MD
 Leslie Schover, PhD
 Stephen Lepore, PhD
 Heather Goltz, PhD, LMSW
 Marc Kowalkowski, PhD(c)
 Stacey L. Hart, PhD
 CherylT. Lee, MD
 Daniela Wittmann, PhD, LMSW
 David W. Coon, PhD

3.  Survivorship care – where we are
 Support/distress screening & management/FOR
 Survivorship care plans and symptom management
 Cancer navigation
 Patient communication & literacy issues
 Forgotten voices
 Survivorship care – where we need to be
 Interprofessional collaboration – not just for primary
care anymore!
 Literacy and patient communication

5.  Support/distress screening & management/fear
of recurrence
 Survivorship care plans – treatment summaries,
care recommendations, health promotion
 Symptom management
 Cancer navigation –one or more persons who assists
with getting into and through the system, reminder
calls, follow-up calls and acts as a primary
communication conduit with providers, patient, family

6.  To retain accreditation beginning in 2015
 Distress screening – at least one assessment
required, more advisable
 Distress management – referral to MH
 Survivorship – care plans, sx management
 Navigation

7. Funded by Scott Department of Urology and Dan L Duncan Cancer Center
at BaylorCollege of Medicine
What issues are our
patients struggling with?

8. 0
10
20
30
40
50
60
70
Fear of
recurrence*
Future
Perspective*
Illness
Intrusiveness**
53.8
65.2
NMIBC
MIBC
* p < .05, ** p < .01
More distress/life disruption
N.B. – CaPSURE means → pre-tx FOR = 36, post-tx FOR = 20-23

9. 0
10
20
30
40
50
Freq -
Day
Freq -
Night
Urgency Sleep Int. Isolation Leakage Pain/
burning
NMIBC MIBC
Percent of respondents reporting “Quite a bit/Very much”

10. 1
2
3
4
ED* Ejac
Prob**
Dry Vagina Uncomf w/
sex*
Contam
NMIBC
MIBC
* p < .05, ** p < .01
Better Fx
van der Aa et al, 2009 – 23% concerned about contaminating
partner

11. R03-CA101586 (Latini – PI)
Latini, D. M., Hart, S. L., Goltz, H. H., Lepore, S. J., & Schover, L. R. (2011). Prostate
Cancer Patient Education Project (PCPEP) – Prostate Cancer Symptom Management in
Low-Literacy Men. In R. Elk & H. Landrine (Eds.), Cancer Health Disparities: Causes and
Evidence Based Solutions, pp. 393-414. NewYork: Springer.

12. 81%
19%
47%
53%
84%
16%
61%
39%
70%
30%
89%
11%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Percentage
Urinary Sexual Bowel Systemic Other Mental health
Symptom type
Not helpful
Helpful

13. 0%
5%
10%
15%
20%
25%
Percentage
Rx meds Doing nothing Diet, lifestyle,
exercise
Behavioral
strategies
Other OTC Pads Support from
others
Kegel
exercises
Medical
devices

14. 61%
39%
14%
86%
95%
5%
90%
10%
85%
15%
80%
20%
100%
0%
100%
0%
71%
29%
58%
42%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Percentage
Rx meds Doing
nothing
Diet, lifestyle,
exercise
Behavioral
strategies
Other OTC Pads Support from
others
Kegel
exercises
Medical
devices
Not helpful
Helpful

15. What resources do our
patients have?

16. Lee, C.T., Mei, M., Ashley, J., Breslow, G., O’Donnell, M., Gilbert, S., Lemmy, S., Saxton, C., Sagalowsky, A., & Latini, D.
M. on behalf of the Bladder CancerThinkTank and the BladderCancer Advocacy Network. (2012). Patient Resources
Available to Bladder Cancer Patients:A Pilot Study of Healthcare Providers. Urology. 79(1):172-177. PMID: 21996109

17. 0%
20%
40%
60%
80%
100%
Bladder cancer Prostate Cancer
37%
59%
63%
41%
No
Yes

18. 20%
16%
84%
16% 16%
64%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Depression Anxiety None
Bladder cancer
Prostate cancer

19. 4%
13%
83%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Yes No Not aware of these
guidelines

20. 55%
52%
78%
59%
66%
55%
81%
62%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Bladder Cancer Prostate Cancer
Site-specific decision aids
Site-specific patient
education about treatment
Site-specific patient
education about side
effects/QOL
General patient education
about cancer

21. 73%
73%
45%
45%
36%
45%
36%
27%
91%
91%
73%
27%
64%
36%
36%
45%
0% 50% 100% 150% 200%
Sexual dysfunction
Urinary incontinence
Bowel dysfunction
Anorexia
Hot flashes
Cognitive changes
Weight gain
Bone loss
Bladder cancer
Prostate cancer

22. 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Bladder Cancer Prostate Cancer
32% 35%
68% 65%
No

23. 26%
59%
4%
11%
0%
10%
20%
30%
40%
50%
60%
70%
Yes No For some
patients
Other
Yes
No
For some patients
Other

24. 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Bladder Cancer Prostate Cancer
32%
19%
68%
81%
No
Yes

26.  The ability to obtain, interpret, and
understand basic health information as
well as the ability to apply skills to health
situations at home, at work, and in the
community.
 Rudd, 2000

27.  Improper use of medication,
 Rehospitalization,
 Advanced stage cancer that may have been
detected earlier if the patient had the ability to
understand its seriousness and implications,
 Birth defects, and other illnesses.
 (Source: U.S. Department of Adult Education, Fact
Sheet 20)

28. 0
20
40
60
80
100
White (n=103) Black (n=109)
Race and Stage at Diagnosis
(% diagnosed with metastatic disease)
0
20
40
60
80
100
> 6th grade literacy
(n=146)
< or = 6th grade literacy
(n=66)
Literacy and Stage at Diagnosis
(% diagnosed with metastatic disease)
• Bennett et al found that African-American men and men with
low literacy were more likely to be diagnosed with metastatic
PCa
CL Bennett, MR Ferreira,TC Davis, J Kaplan, MWeinberger,T Kuzel, MA Seday,O Sartor. Relation between literacy, race, and stage of
presentation among low-income patients with prostate cancer. Journal of Clinical Oncology 16 (9): 3101. (1998)

29. 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
White African
American
PSA ≤ 20
at
diagnosis
PSA > 20
at
diagnosis
Functional (n=153)
Marginal (n=101)
Low (n=54)
Wolf MS, Knight SJ, Lyons EA, Durazo-Arvizu R, Pickard SA,ArsevenA,ArozullahA, Colella K, Ray P, Bennett CL. Literacy, race, and
PSA level among low-income men newly diagnosed with prostate cancer. Urology 68(1):89-93, Jul 2006.
Literacy Level

30. Percentage of adults in each health
literacy level, by age: 2003
NOTE: Detail may not sum to totals because of rounding. Adults
are defined as people 16 years of age and older living in households
or prisons. Adults who could not be interviewed because of
language spoken or cognitive or mental disabilities (3 percent in
2003) are excluded from this figure.
SOURCE: U.S. Department of Education, Institute of Education
Sciences, National Center for Education Statistics, 2003 National
Assessment of Adult Literacy.

31. Hart, SL; Coon, DW; Kowalkowski, MA; & Latini, DM. (2011). Gay men with prostate
cancer report significantly worse HRQOL than heterosexual men. TheJournal of Urology,
185(4S),April, p. 42. , May 2011, Washington, DC.

36.  Models of care focus on primary care
 Specialists in even greater need of an
interdisciplinary team
 Large cancer centers may have the luxury of
interdisciplinary teams
 ACoS guidelines provide a ready-made model
that can be adapted to your setting
 NCCN now has guidelines for distress, sexual
dysfunction, etc.

37.  Most physicians do not have time in a
busy clinic to do sexuality counseling
 At least bring up the issue, since the
physician’s endorsement is powerful
 Allied health professionals can
provide counseling and referral

38.  Know the mental health professionals and
others who can help with complex cases
 Know urologists who treat ED and other
sexual problems
 Know gynecologists skilled with pain,
menopausal symptoms, and low desire
 Also resources for fertility preservation and
assessment of post-cancer fertility

39.  American Psychosocial Oncology Society
hotline - 1-866-276-7443/1-866-APOS-4-
HELP
 AASECT website
 ACS
 Cancer Support Community
 Malecare
 Bladder CancerAdvocacy Network

40.  Lack of cross-trained professionals who
understand both their field and cancer
 Need for interdisciplinary collaboration in
treating complex problems
 Poor insurance coverage for the mental
health and other supportive services
 Ongoing stigmatization of psychotherapy

42.  Developed with
survivor input
 Literacy-friendly
 Free to providers
 English & Spanish

43.  Developed by expert panel
 Two patient focus groups
 Two provider focus groups (urol, med onc,
rad onc, geriatrician, private practices, NP,
SW)
 Pilot – 5 new patients (NM, RC) in 11 practices
 Planned RCT

44.  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

45. David M Latini, PhD
Scott Department of Urology
Baylor College of Medicine
latini@bcm.edu
Mental Health Care Line
Michael E. DeBakeyVA Medical Center
Houston,TX