Prevention of Vision Loss From DiabetesPrevention of Vision Loss From Diabetes
Counseling, persistence, and multiple telephone calls along with low-literacy level educational
material impact screening for diabetic retinopathy in inner-city African American communities
Crystal J. Howard-Century, MA, MS, CHES, CCRA
Department of Health and Behavior Studies
Center for Health Promotion
Columbia University Teachers College
OVERVIEWOVERVIEW“Purpose of Presentation”“Purpose of Presentation”
Qualitative doctoral research based on Qualitative doctoral research based on ** NEI-supported NEI-supported randomized controlled trial (N=280)randomized controlled trial (N=280)
Health education intervention impacts screening and vision loss Health education intervention impacts screening and vision loss from diabetic retinopathyfrom diabetic retinopathy
Health disparities: target African AmericansHealth disparities: target African Americans
Intervention success: one-on-one culturally sensitive telephone Intervention success: one-on-one culturally sensitive telephone counseling with diabetes education (N=130)counseling with diabetes education (N=130)
Sample intervention (N=20) motivation and barriers to ophthalmic Sample intervention (N=20) motivation and barriers to ophthalmic screening, persistence, behavioral strategiesscreening, persistence, behavioral strategies
* Results: * Results: Am J Public Health.Am J Public Health. 1999;89:1878-1882 1999;89:1878-1882
DISABILITY IN THE U.S.DISABILITY IN THE U.S.
1991-1992 -- Report of disabling conditions, 49 millionReport of disabling conditions, 49 million
1994-19951994-1995- Report of disabling conditions, 54 millionReport of disabling conditions, 54 million
1995 - Cost of visual disorders and disabilities $14.1 billion in Cost of visual disorders and disabilities $14.1 billion in
1981 to $38.4 billion ($22.3 billion direct, $16.1 billion 1981 to $38.4 billion ($22.3 billion direct, $16.1 billion indirect)indirect)
PREVALENCE OF DISABILITIESPREVALENCE OF DISABILITIESU.S. BUREAU OF CENSUS, CDC (SIPP DATA)U.S. BUREAU OF CENSUS, CDC (SIPP DATA)
MMWR Morb Mortal Wkly Rep. 2001;50:120-125MMWR Morb Mortal Wkly Rep. 2001;50:120-125
7.26.8
3.2
1.9 1.8 1.7 1.5 1.4 1.4 1.2
0.0
1.0
2.0
3.0
4.0
5.0
6.0
7.0
8.0
Health Conditions Associated With Disability
Mill
ions
0
2
4
6
8
10
12
14
16
18
20
Perc
enta
ge
Number of Persons Percentage
1999, 44 million reported a disability; 41.2 million reported main cause. Total 30 conditions
STATISTICS: VISIONSTATISTICS: VISION
Current estimates: Restrictive Definition
- Approximately 3 million Americans have some visual Approximately 3 million Americans have some visual disorderdisorder
- More than 900,000 classified as legally blindMore than 900,000 classified as legally blind
visual acuity of 20/200 or worse in the better eye with visual acuity of 20/200 or worse in the better eye with corrective lenses or visual field restricted to 20 degrees corrective lenses or visual field restricted to 20 degrees diameter or less (tunnel vision) in the better eyediameter or less (tunnel vision) in the better eye
- Almost 200,000 Americans are totally blindAlmost 200,000 Americans are totally blind
STATISTICS: VISION STATISTICS: VISION (continued)(continued)
Current estimates: Broader Definition
- Includes vision problems Includes vision problems impacting ADL , activities impacting ADL , activities of daily livingof daily living
- Up to 14 million Up to 14 million Americans experience Americans experience impairment of their visionimpairment of their vision
Normal Fundus
Photo: National Eye Institute,National Institutes of Health
CAUSES OF VISUAL IMPAIRMENTCAUSES OF VISUAL IMPAIRMENT“Diabetes”“Diabetes”
Approximately 12,000 to 24,000 people become blind each year
Accounts for greater than 12% of new blindness
Disparity: African Americans 40% higher frequency of severe visual impairment than Whites
Diabetic Retinopathy: leading cause of new cases Diabetic Retinopathy: leading cause of new cases of blindness, adults between ages 20 to 74of blindness, adults between ages 20 to 74
DIABETIC RETINOPATHYDIABETIC RETINOPATHY“Significant Threat to Vision”“Significant Threat to Vision”
Microvascular complication of type 1 and type 2; microaneurysms, hemorrhages, cotton-wool spots, thickening, hard exudates, retinal detachment
Proliferative Diabetic Retinopathy (PDR)abnormal new blood vessels, scar tissue
Photos: National Eye Institute, National Institutes of HealthBackground Diabetic Retinopathy (BDR)
deterioration in small blood vessels, swell, leak fluid
DIABETIC RETINOPATHYDIABETIC RETINOPATHY“Significant Threat to Vision”“Significant Threat to Vision” (cont) (cont)
After 20 years, nearly all type 1 and > 60% type 2 have some degree of retinopathy
Incidence Data * WESDR (Wisconsin Epidemiologic Study of Diabetic Retinopathy):
Diagnosed ~7.8 million people with diabetes in 1993
- 84,000 will develop PDR each year84,000 will develop PDR each year
- 40,000 will develop PDR + risk severe vision loss40,000 will develop PDR + risk severe vision loss
- 95,000 develop macular edema95,000 develop macular edema
** Source: Source: Diabetes in AmericaDiabetes in America. 1995;293-338. 1995;293-338
BENEFITS OF SCREENINGBENEFITS OF SCREENING
Landmark trials, therapeutic benefit
- Intensive diabetes Intensive diabetes managementmanagement: DCCT : DCCT and UKPDSand UKPDS
- Efficacy of timely Efficacy of timely treatmenttreatment: DRS and : DRS and ETDRSETDRS
50% reduction in risk of severe visual loss and vitrectomy
Asymptomatic
Saves vision, low cost less than disability payments
Treatment modalities: prevent loss or delay onset
DIABETES STANDARD OF CAREDIABETES STANDARD OF CARE
Annual retinal examination - dilated eye examination
Ophthalmologist or Optometrist, knowledgeable and experienced in diabetic retinopathy
Dilated ETDRS seven-standard field stereoscopic 30° fundus photographs more sensitive
Severe NPDR, macular edema, PDR - prompt referral to trained eye care specialist
ROAD MAP TO BETTER HEALTHROAD MAP TO BETTER HEALTH“21“21STST Century Objectives” Century Objectives”
Healthy People 2010, plans to improve health
- Goals: increase quality and years of healthy life; Goals: increase quality and years of healthy life; eliminate health disparitieseliminate health disparities
- 467 objectives organized into 28 focus areas 467 objectives organized into 28 focus areas
- 5-13: Increase the proportion of adults with diabetes 5-13: Increase the proportion of adults with diabetes who have an annual dilated eye examwho have an annual dilated eye exam
- 28-1: Increase the proportion of persons who have a 28-1: Increase the proportion of persons who have a dilated eye examination at appropriate intervalsdilated eye examination at appropriate intervals
- 28-5: Reduce visual impairment due to diabetic 28-5: Reduce visual impairment due to diabetic retinopathyretinopathy
TELEPHONE COUNSELINGTELEPHONE COUNSELINGINCREASES SCREENINGINCREASES SCREENING
Results of this intervention
- Screening: intervention group, 54.7% versus Screening: intervention group, 54.7% versus 27.3% control group27.3% control group
Preliminary chart audit, African Americans 47% screening rate
6-month intervention time-frame; weekly calls, end with self-report (some cases beyond 6 months)
Verify dilated eye exam documentation (chart audit)
THE INTERVENTION: DEMOGRAPHICSTHE INTERVENTION: DEMOGRAPHICS((expressed in percentage)expressed in percentage)
Intervention Subjects (N = 137)Intervention Subjects (N = 137)
MaleMale 34.334.3MarriedMarried 33.633.6UnemployedUnemployed 73.073.0Completed HSCompleted HS 43.843.8Receives MedicaidReceives Medicaid 43.043.0Receives MedicareReceives Medicare 22.422.4InsuredInsured 70.170.1Family IncomeFamily Income 69.169.1(< 10,000)(< 10,000)Mean Age (SD)Mean Age (SD) 55.6 (12.9)55.6 (12.9)Mean Duration of Disease (SD)Mean Duration of Disease (SD) 8.1 (7.4)8.1 (7.4)
METHODMETHOD
Select sample, 20 Intervention casesSelect sample, 20 Intervention cases
- Aliases assigned to protect identitiesAliases assigned to protect identities
- Include those who did and did not have the dilated eye examInclude those who did and did not have the dilated eye exam
- Based on degrees of difficulty and barriers encounteredBased on degrees of difficulty and barriers encountered
- Include subjects from each recruitment centerInclude subjects from each recruitment center
Case Study MethodCase Study Method
- Multiple case design, exploratory and descriptiveMultiple case design, exploratory and descriptive
- Case histories or portraits from multiple sourcesCase histories or portraits from multiple sources
NUMBER OF TELEPHONE CALLSNUMBER OF TELEPHONE CALLS(N=20)(N=20)
16
24
46
73
26
13
2531
21
812
50
90
130
2015 17
20
12
28
0
20
40
60
80
100
120
140
Berth
a
Heath
er
Gayle
Julio
Lone
tta EllaTon
y
Junio
rEth
el
Seree
na
Vaugh
n Al
Carla
Lenn
y
Prince
ss
Calvin
Wal
ly
Mar
ie
Vanes
sa
Jack
son
Subject Alias
Nu
mber
of
Calls
Mean (SD) = 33.9 ( 30.9)Mean (SD) = 33.9 ( 30.9)Max # calls = 130 [Lenny]Max # calls = 130 [Lenny]Min # calls = 8 [Sereena]Min # calls = 8 [Sereena]
NUMBER OF MINUTES WITH EACH SUBJECTNUMBER OF MINUTES WITH EACH SUBJECT(N=20)(N=20)
50 40
96
140
222
56
157
102
143
6045
98
383
223
142
71
103
2746
69
0
50
100
150
200
250
300
350
400
Berth
a
Heath
er
Gayle
Julio
Lone
tta EllaTon
y
Junio
rEth
el
Seree
na
Vaugh
n Al
Carla
Lenn
y
Prince
ss
Calvin
Wal
ly
Mar
ie
Vanes
sa
Jack
son
Subject Alias
Nu
mb
er
of
Min
ute
s
Mean (SD) = 113.7 (85.1)Mean (SD) = 113.7 (85.1)Max # minutes = 383 [Carla]Max # minutes = 383 [Carla]Min # minutes = 27 [Marie]Min # minutes = 27 [Marie]
NUMBER OF MONTHSNUMBER OF MONTHS (N=20)(N=20)
1.52
4
6.5
8
5
6
5 5
2
5
9
6
8
10
2.5
44.5
3.5
5.5
0
2
4
6
8
10
12
Berth
a
Heath
er
Gayle
Julio
Lone
tta EllaTon
y
Junio
rEth
el
Seree
na
Vaugh
n Al
Carla
Lenn
y
Prince
ss
Calvin
Wal
ly
Mar
ie
Vanes
sa
Jack
son
Subject Alias
Nu
mb
er
of
Mo
nth
s
Mean (SD) = 5.2 ( 2.3)Mean (SD) = 5.2 ( 2.3)Max # months = 10 [Princess]Max # months = 10 [Princess]Min # months = 1.5 [Bertha]Min # months = 1.5 [Bertha]
NUMBER OF BARRIERS IDENTIFIEDNUMBER OF BARRIERS IDENTIFIED(N=20)(N=20)
0
4
2
7
11
5
7
4
9
3
2
4
8
9
10
0
7
5
3
9
0
2
4
6
8
10
12
Berth
a
Heath
er
Gayle
Julio
Lone
tta EllaTon
y
Junio
rEth
el
Seree
na
Vaugh
n Al
Carla
Lenn
y
Prince
ss
Calvin
Wal
ly
Mar
ie
Vanes
sa
Jack
son
Subject Alias
Nu
mb
er
of
Ba
rrie
rs
Mean (SD) = 5.5 (3.3)Mean (SD) = 5.5 (3.3)Max # barriers = 11 [Lonetta]Max # barriers = 11 [Lonetta]Min # barriers = 0 [Bertha; Calvin]Min # barriers = 0 [Bertha; Calvin]
OBSTACLES TO SCREENINGOBSTACLES TO SCREENING
Yes Dilated Eye ExamYes Dilated Eye Exam
Bertha Bertha none none Heather Heather health health Gayle Gayle health health Junior Junior health health Ethel Ethel life events life events Sereena Sereena family family Vaughn Vaughn family family Calvin Calvin none none Marie Marie health health Vanessa Vanessa medical syst medical syst
No Dilated Eye ExamNo Dilated Eye Exam
Julio Julio money money Lonetta Lonetta health health Ella Ella health health Tony Tony life events life events Al Al medical system medical system Carla Carla medical system medical system Lenny Lenny family situation family situation Princess Princess external force external force Wally Wally medical system medical system Jackson Jackson external force external force
MOTIVATION FOR SCREENINGMOTIVATION FOR SCREENING
Yes Dilated Eye ExamYes Dilated Eye Exam
Bertha Bertha social network social network Heather Heather health health Gayle Gayle health health Junior Junior social network social network Ethel Ethel social network social network Sereena Sereena social network social network Vaughn Vaughn social network social network Calvin Calvin MD MD Marie Marie health health Vanessa Vanessa health health
No Dilated Eye ExamNo Dilated Eye Exam
Julio Julio social network social network Lonetta Lonetta health health Ella Ella not ready not ready Tony Tony not ready not ready Al Al health health Carla Carla health health Lenny Lenny social network social network Princess Princess social network social network Wally Wally social network social network Jackson Jackson social network social network
TRANSLATE OBJECTIVES INTO ACTIONTRANSLATE OBJECTIVES INTO ACTION
Understand obstacles to compliance and motivation
Tailor intervention based on subject’s experiences
Be persistent
Photo: National Eye Institute, National Institutes of Health
CONCLUSIONCONCLUSION
Assess Stages of ChangeAssess Stages of Change
Utilize behavioral Utilize behavioral strategies to overcome strategies to overcome challenges, transition challenges, transition through Stagesthrough Stages
- Motivational Motivational Interviewing Interviewing (i.e., empathic (i.e., empathic listening, cognitive dissonance, listening, cognitive dissonance, decisional balance)decisional balance)
- Relapse Prevention Relapse Prevention (i.e., (i.e., identify high-risk situations, identify high-risk situations, effective cognitive behavioral effective cognitive behavioral response, increase self-efficacy)response, increase self-efficacy)
Health Educator needs Health Educator needs cultural sensitivitycultural sensitivity
Design culturally Design culturally appropriate materialappropriate material
Establish and maintain Establish and maintain rapportrapport
Include social networksInclude social networks