Jackson Heart Study Sonja R. Fuqua, PhD, RN Director of Clinical Quality MS Primary Health Care Association ********** JHS Manager of Recruitment and Retention (1999-2009)

JHS: Timeline Planning Phase - 1996-1997 Feasibility Phase - 1998-1999 JHS - began full study - 2000 recruitment began August, 2000 examinations September, 2000-2004 annual follow up began September, 2001 surveillance continuous Fall 1996 - Initial meetings with UMC, JSU, TC February 1997 - meeting at NIH April 1997 - planning meeting with consultants at TC - UMC, JSU, TC, NHLBI, local minority physicians, Whelton, Francis, Cooper, Jamerson May 1997 - Commerce Business Daily announcement of JHS June 1997 - Epidemiology Course TC Fall 1997 - Conference on Cardiovascular Disease in African Americans - JSU - scientific design of the JHS Jan 1998 - Draft Community Mobilization Plan and Participant Recruitment Survey May 1998 - RFP for 1st exam cycle released August, 1998-RFP response November, 1998-review completed Budget negotiations June, 1999 - Contract awarded Participant Recruitment Survey Protocol Development Space development, hiring, training

Design Prospective population-based epidemiology study--also incorporating families Expansion of the current ARIC study (Atherosclerosis Risks in Communities) Projected study population: 6500

ARIC Atherosclerosis Risk in Communities Study Goal: study risk factors for CVD in European-Americans and African-Americans 4 centers Jackson, MS Forsyth Co, NC Minneapolis, MN Washington Co, MD

JHS: Family Component Family members were included to permit studies of familial/genetic contributions to CVD Size: 2,000 of the 6,500 JHS cohort sample Eligibility: Index family member has 2 full siblings and a minimum of 9 first degree, age eligible relatives in study area

Content for JHS Exam Medical and family history Medications Lifestyle factors Sociocultural factors Anthropometry BP, ECG Echocardiography Carotid Ultrasound Brachial Reactivity Pulmonary Function Extensive Blood work Long-term storage of frozen specimens and DNA extractions

JHS: Interview Components Demographic information Personal and family health history Medical history (stroke & reproductive) Medication use history Smoking and alcohol use history Nutrition Physical activity Sociocultural

JHS: Sociocultural Components SES Health Care Access Stress Coping Religion and religious coping Social support and integration Depression Anger & Hostility Optimism John Henryism Job Latitude Discrimination

Participants 6,500 participants African American 35-84 years of age 2,000 ARIC 2,000 Family Study 2,500 Randomized sample African American 35-84 years of age Residents of Hinds, Madison, or Rankin county

Cost to Participate FREE Time expenditure Home Induction Interview---1 hour Clinic Examination—4 ½ hours 24-hour AMBP and urine—24 hours Annual Follow-up—30 minutes

BENEFITS Comprehensive medical exam ($4000) Assist in understanding the problem of African Americans and CVD Build a healthier tomorrow “Friendship” network

Recruitment Process Contact letter—invitation to participate Three attempts for home contact Alternate: daytime, evening, weekend First attempt—door-hanger with business card Second attempt—add “happy” Two attempts either home or phone contact May suspend efforts after five attempts

Recruitment Revisions To meet the demands of recruitment goals: Five recruiters became 11 Allowed phone calls Increased--focused community activities Accepted volunteers Randomized Per demographics and county

Jackson Heart Study Recruitment Challenges Awareness -Improved in recent months Contact challenges -Imperfections in list -Caller I.D./Telemarketer and junk mail aversion -Avoidance due to negative expectations/suspicion -“Random approach”

Recruitment Challenges Acceptance -70-80% once contact is made Clinic appointments -80% keep appointment after initial home interview -Transportation issues;other barriers -Change of heart -Compensation/incentive

JHS Recruitment: Ended March 31, 2004 TOTAL Recruited: 5302

JHS Recruiters

JHS RETENTION Annual Follow-Up Interviews Participant Birthday Cards, Newsletters, Volunteer Opportunities JHS Annual Family Reunion Community Health Advisors Network (CHAN) Community Partnerships and Outreach

JHS Exam 2 JHS Exam 3 September 2004—December 2008 85% returned for the second exam JHS Exam 3 February 2009—March 2013

Ancillary Studies Ancillary studies added Peripheral Arterial Tonometry (PAT), which looks at the health of your blood vessels A study that is looking for a relationship between heart disease and hearing loss; MRI (Magnetic Resonance Imaging) of your heart Health Promotion Study (Yoga Study) Sleep Study

Where do we go from Here? Ongoing Retention Efforts Community Partnerships and Outreach Community Health Advisor Education and Activities TRIPP Translating Research Into Practice and Prevention

Building a Legacy of Health...

To be a “Professional” How do you put a giraffe into a refrigerator? Open the refrigerator, put in the giraffe and close the door. This question tests whether you tend to do simple things in an overly complicated way.

Professional……… How do you put an elephant into a fridge? Open the refrigerator, put in the elephant and close the door. (WRONG) Open the refrigerator, take out the giraffe, put in the elephant and close the door. Test the ability to think through the repercussions of your actions.

Professional………… The Lion King is hosting an animal conference. All the animals attend except one. Which animal does not attend? The Elephant. Its in the refrigerator. This tests your memory

Professional……….. There is a river you must cross, but it is inhabited by crocodiles. How do you manage it? You swim across. All the Crocodiles are attending the Animal Conference. This tests whether you learn quickly from your mistakes.