Sickle Cell Vascular Disease Section,
Cardiovascular Pulmonary Branch,
National Heart, Lung and Blood Institute,
National Institutes of Health
Catherine A. Seamon, Darlene T. Allen,
James G. Taylor VI, Jonathan Wilson, Gregory J. Kato
Disclosures
• No conflicts of interest to disclose.
• Funded by the NIH Division of Intramural
Research.
Objectives
• Determine prevalence of tobacco, alcohol,
and illicit drug use in sickle cell anemia.
• Discuss impact of “drug seeker” or “addict”
labels on the management of acute
pain crises.
Background
Leading barrier to effective pain management
is negative provider perceptions
• Avoidance of emergency rooms
• Delayed administration of analgesics
• Mistrust
• Ineffective medical care
Haywood, C., et al. A systematic review of barriers and interventions to
improve appropriate use of therapies for sickle cell disease. J Natl Med Assoc.
2009; 101(10): 1022-1033
“When you see us, across an examination table, hospital bed or ER
gurney it is but a microcosm of our quotidian trials. You may be skilled in
healing but we are expert in surviving…
We have and still do hope, no pray for the cure that will deliver us from
this incessant suffering, the tortuous pain that pits us against implacable
providers of relief who dole out miniscule amounts of analgesic.
We want to have a say in what is written about us.
We want to call ourselves by our names and define our
situational crises as we see fit.
We want to critique our critics and allies before
misleading comments are committed to paper in
medical annals, forever shaping the version of who
we are and what we do…”
Quote taken with permission of author from the Sickle Cell Disease Care and Research: Past,
Present, and Future, Panel presentation at the James B. Herrick Symposium (Nov 16, 2010)
National Institutes of Health
• SCD Evaluation Study:
– Pulmonary Hypertension, etc.
– To identify genetic modifiers of sickle cell disease
complications and severity
• Age ≥ 18
• Compensation
• Subject Interviews
National Survey on Drug Use and
Health, 2009
• Survey of civilian, non-institutionalized
population
• Evenly divided among states and age
categories: 12-17, 18-25, and 26 years or older
• Compensation
• Computer assisted surveys
Substance Abuse and Mental Health Services Administration. Results
from the 2009 national survey on drug use and health: Volume I.
summary of national findings. Rockville, MD: Office of Applied Studies;
2010. NSDUH Series H-38A, HHS Publication No. SMA 10-4586Findings.
Population Demographics
Race
African American
Other
Age
12-17 yrs
18-25 yrs
26-34 yrs
>35 yrs
Sex
Male
Female
NHLBI (%)
National
(%)
National (A.A.)
(%)
97
3
12.8
87.2
100
0
0.2
26.5
28.9
44.4
31.7
34.1
10.1
24.1
34.5
35.9
9.5
20.1
46
54
44
47
46
54
Self-Reported Results
Nat
N
NIH Nat
(%) (%)
Z
Score
(A.A.)
(%)
Z
Score
-8.08
Tobacco 65
13
21.3
27.7
-7.20
Alcohol
126
25
42.8 -12.83 51.9
-8.49
Drugs
21
4
8.6
-4.49
-3.77
8.7
*Participants were classified as current users, if they had
used a substance within the year prior to evaluation
Limitations
• Age-matched population comparisons
(NSDUH) not performed
• Ascertainment Methods Differed
– Interviews versus computer assisted survey
Implications
• Drug abuse stigma could lead to ineffective
pain treatment.
• A change in provider perception has the
potential to positively impact trust in
providers.
– Future area for study
Acknowledgements
Thank you!
Patients
Sickle Cell
Vascular Disease
Section
Clinic Nurses
Clinical Research
Nurses
Contacts
Cassie Seamon, RN
Clinical Research Nurse
cseamon@nhlbi.nih.gov
301-451-6361
Darlene T. Allen, MT
(ASCP)
Study Coordinator
darlenea@nhlbi.nih.gov
301-435-1495
James G. Taylor, VI
Assistant Clinical Investigator
Genomic Medicine Section
jamesta@nhlbi.nih.gov
301-435-7895
DISCLOSURE
I have nothing to Disclose