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

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:

DISABILITY IN THE U.S.   Report of disabling conditions, 49 million  Report of disabling conditions, 54 million   Cost of visual disorders and disabilities $14.1 billion in 1981 to $38.4 billion ($22.3 billion direct, $16.1 billion indirect)

PREVALENCE OF DISABILITIES U.S. BUREAU OF CENSUS, CDC (SIPP DATA) MMWR Morb Mortal Wkly Rep. 2001;50: , 44 million reported a disability; 41.2 million reported main cause. Total 30 conditions

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

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

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

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

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 ,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;

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

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

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 objectives organized into 28 focus areas : Increase the proportion of adults with diabetes who have an annual dilated eye exam : Increase the proportion of persons who have a dilated eye examination at appropriate intervals : Reduce visual impairment due to diabetic retinopathy

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)

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)

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

NUMBER OF TELEPHONE CALLS (N=20) Mean (SD) = 33.9 ( 30.9) Max # calls = 130 [Lenny] Min # calls = 8 [Sereena]

NUMBER OF MINUTES WITH EACH SUBJECT (N=20) Mean (SD) = (85.1) Max # minutes = 383 [Carla] Min # minutes = 27 [Marie]

NUMBER OF MONTHS (N=20) Mean (SD) = 5.2 ( 2.3) Max # months = 10 [Princess] Min # months = 1.5 [Bertha]

NUMBER OF BARRIERS IDENTIFIED (N=20) Mean (SD) = 5.5 (3.3) Max # barriers = 11 [Lonetta] Min # barriers = 0 [Bertha; Calvin]

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

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

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

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