Academic journal article International Public Health Journal

Shared Governance in Building Community Capacity: A Case Study of Sleep Apnea

Academic journal article International Public Health Journal

Shared Governance in Building Community Capacity: A Case Study of Sleep Apnea

Article excerpt


Diabetes is a growing epidemic nationally and internationally (1,2). There are racial and ethnic differences in prevalence, morbidity and mortality from diabetes, with African Americans, Hispanic/Latino and South Asians, particularly impacted (3). East Harlem is a predominantly low- income, African American, Hispanic/Latino community in northeast New York City, with the highest diabetes mortality rate and the highest obesity prevalence in Manhattan. In addition, 29% of East Harlem adults do not have a primary care provider and over one third (27%) are currently uninsured or, were uninsured at some time in the past year (10%)(4). Based on this information, community and academic partners in East Harlem came together in 2005 to develop programs to improve local health.

Once funded, a Community Action Board (Board), comprised of 20 local leaders, residents and investigators conducted local assessments and chose to focus on diabetes prevention. Using Community Based Participatory Research principles, the Board developed a peer-led, community-based diabetes prevention intervention (5). The intervention, named HEED (Help Educate to Eliminate Diabetes) aimed to help overweight and obese adults with pre-diabetes change their diets, increase physical activity and lose weight to prevent or delay diabetes (6-8). To test the impact of the intervention, we implemented a randomized controlled trial of peer-led, community- based lifestyle education, which resulted in significant and sustained weight loss (9). In consultation with the study's Scientific Advisory Board, we decided to add a new focus to this study, namely obstructive sleep apnea.

Obstructive sleep apnea is a condition when an individual has episodes of paused breathing cessation (apneas) due to a collapse in the upper airway during sleep (10). Sleep apnea affects 4% of the population, of whom only 20% are diagnosed (11,12). Resulting fragmented sleep and low oxygen intake increase the risk of heart disease, negatively impact quality of life, and physical and emotional health. (13,14) Sleep apnea also leads to insulin resistance and glucose intolerance,(15,16) and, if untreated, increases the risk of developing type II diabetes (17).

Surprisingly, little research exists exploring whether sleep apnea is an independent risk factor for progression of pre-diabetes to diabetes, particularly in African Americans and Hispanics/Latinos, who have higher prevalence of pre-diabetes, diabetes, obesity and sleep apnea (18). Will the metabolic changes associated with sleep apnea accelerate progression of pre-diabetes to diabetes? Will the fatigue from sleep apnea make it harder for people to increase physical activity and improve their diets so they can prevent diabetes? To answer these questions, the Board needed to determine ways to assess prevalence of sleep apnea among pre-diabetics with limited access to care, limited English fluency and limited financial resources. Thus, we aimed to develop a culturally sensitive, yet scientifically rigorous approach to diagnose sleep apnea and study the prevalence of sleep apnea in adults with prediabetes.


A subcommittee of the Board formed to guide the sleep apnea substudy, in which a cohort of adults with prediabetes who were enrolled in the original diabetes prevention study would be offered an opportunity to undergo screening for sleep apnea. Initially, we had considered simply including the Berlin Sleep Questionnaire, a survey screening tool to assess sleep apnea. However, this led to two problems. First, before allowing the additional questions to be added, the Board wanted to ensure that this was a scientifically rigorous method to diagnose, not just to assess risk for sleep apnea (19). Second, the Board would not agree to include any sleep apnea assessment unless we also provided state of the art treatment. The Board members felt strongly that asking screening questions without providing accurate diagnosis was unethical. …

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