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Prevention 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
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OVERVIEW “Purpose of Presentation” Qualitative doctoral research based on * NEI-supported randomized controlled trial (N=280) Health education intervention impacts screening and vision loss from diabetic retinopathy Health disparities: target African Americans Intervention success: one-on-one culturally sensitive telephone counseling with diabetes education (N=130) Sample intervention (N=20) motivation and barriers to ophthalmic screening, persistence, behavioral strategies * Results: Am J Public Health. 1999;89:1878-1882
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DISABILITY IN THE U.S. 1991-1992 - Report of disabling conditions, 49 million 1994-1995 - Report of disabling conditions, 54 million 1995 - Cost of visual disorders and disabilities $14.1 billion in 1981 to $38.4 billion ($22.3 billion direct, $16.1 billion indirect)
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PREVALENCE OF DISABILITIES U.S. BUREAU OF CENSUS, CDC (SIPP DATA) MMWR Morb Mortal Wkly Rep. 2001;50:120-125 1999, 44 million reported a disability; 41.2 million reported main cause. Total 30 conditions
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STATISTICS: VISION Current estimates: Restrictive Definition - Approximately 3 million Americans have some visual disorder - More than 900,000 classified as legally blind visual acuity of 20/200 or worse in the better eye with corrective lenses or visual field restricted to 20 degrees diameter or less (tunnel vision) in the better eye - Almost 200,000 Americans are totally blind
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STATISTICS: VISION (continued) Current estimates: Broader Definition - Includes vision problems impacting ADL, activities of daily living - Up to 14 million Americans experience impairment of their vision Normal Fundus Photo: National Eye Institute, National Institutes of Health
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CAUSES OF VISUAL IMPAIRMENT “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 of blindness, adults between ages 20 to 74
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DIABETIC RETINOPATHY “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 Health Background Diabetic Retinopathy (BDR) deterioration in small blood vessels, swell, leak fluid
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DIABETIC RETINOPATHY “Significant Threat to Vision” (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 year - 40,000 will develop PDR + risk severe vision loss - 95,000 develop macular edema * Source: Diabetes in America. 1995;293-338
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BENEFITS OF SCREENING Landmark trials, therapeutic benefit - Intensive diabetes management: DCCT and UKPDS - Efficacy of timely treatment: DRS and ETDRS 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
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DIABETES 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
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ROAD MAP TO BETTER HEALTH “21 ST Century Objectives” Healthy People 2010, plans to improve health - Goals: increase quality and years of healthy life; eliminate health disparities - 467 objectives organized into 28 focus areas - 5-13: Increase the proportion of adults with diabetes who have an annual dilated eye exam - 28-1: Increase the proportion of persons who have a dilated eye examination at appropriate intervals - 28-5: Reduce visual impairment due to diabetic retinopathy
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TELEPHONE COUNSELING INCREASES SCREENING Results of this intervention - Screening: intervention group, 54.7% versus 27.3% 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)
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THE INTERVENTION: DEMOGRAPHICS (expressed in percentage) Intervention Subjects (N = 137) Male34.3 Married33.6 Unemployed73.0 Completed HS43.8 Receives Medicaid43.0 Receives Medicare22.4 Insured70.1 Family Income69.1 (< 10,000) Mean Age (SD)55.6 (12.9) Mean Duration of Disease (SD)8.1 (7.4)
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METHOD Select sample, 20 Intervention cases - Aliases assigned to protect identities - Include those who did and did not have the dilated eye exam - Based on degrees of difficulty and barriers encountered - Include subjects from each recruitment center Case Study Method - Multiple case design, exploratory and descriptive - Case histories or portraits from multiple sources
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NUMBER OF TELEPHONE CALLS (N=20) Mean (SD) = 33.9 ( 30.9) Max # calls = 130 [Lenny] Min # calls = 8 [Sereena]
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NUMBER OF MINUTES WITH EACH SUBJECT (N=20) Mean (SD) = 113.7 (85.1) Max # minutes = 383 [Carla] Min # minutes = 27 [Marie]
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NUMBER OF MONTHS (N=20) Mean (SD) = 5.2 ( 2.3) Max # months = 10 [Princess] Min # months = 1.5 [Bertha]
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NUMBER OF BARRIERS IDENTIFIED (N=20) Mean (SD) = 5.5 (3.3) Max # barriers = 11 [Lonetta] Min # barriers = 0 [Bertha; Calvin]
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OBSTACLES TO SCREENING Yes Dilated Eye Exam Bertha none Heather health Gayle health Junior health Ethel life events Sereena family Vaughn family Calvin none Marie health Vanessa medical syst No Dilated Eye Exam No Dilated Eye Exam Julio money Lonetta health Ella health Tony life events Al medical system Carla medical system Lenny family situation Princess external force Wally medical system Jackson external force
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MOTIVATION FOR SCREENING Yes Dilated Eye Exam Bertha social network Heather health Gayle health Junior social network Ethel social network Sereena social network Vaughn social network Calvin MD Marie health Vanessa health No Dilated Eye Exam No Dilated Eye Exam Julio social network Lonetta health Ella not ready Tony not ready Al health Carla health Lenny social network Princess social network Wally social network Jackson social network
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TRANSLATE 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
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CONCLUSION Assess Stages of Change Utilize behavioral strategies to overcome challenges, transition through Stages - Motivational Interviewing (i.e., empathic listening, cognitive dissonance, decisional balance) - Relapse Prevention (i.e., identify high-risk situations, effective cognitive behavioral response, increase self-efficacy) Health Educator needs cultural sensitivity Design culturally appropriate material Establish and maintain rapport Include social networks
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