Racial and Ethnic Differences in a Linkage with the National Death Index.

OBJECTIVES: Differences in the availability of a Social Security Number (SSN) by race/ethnicity could affect the ability to link with death certificate data in passive follow-up studies and possibly bias mortality disparities reported with linked data. Using 1989-2009 National Health Interview Survey (NHIS) data linked with the National Death Index (NDI) through 2011, we compared the availability of a SSN by race/ethnicity, estimated the percent of links likely missed due to lack of SSNs, and assessed if these estimated missed links affect race/ethnicity disparities reported in the NHIS-linked mortality data. METHODS: We used preventive fraction methods based on race/ethnicity-specific Cox proportional hazards models of the relationship between availability of SSN and mortality based on observed links, adjusted for survey year, sex, age, respondent-rated health, education, and US nativity. RESULTS: Availability of a SSN and observed percent linked were significantly lower for Hispanic and Asian/Pacific Islander (PI) participants compared with White non-Hispanic participants. We estimated that more than 18% of expected links were missed due to lack of SSNs among Hispanic and Asian/PI participants compared with about 10% among White non-Hispanic participants. However, correcting the observed links for expected missed links appeared to only have a modest impact on mortality disparities by race/ethnicity. CONCLUSIONS: Researchers conducting analyses of mortality disparities using the NDI or other linked death records, need to be cognizant of the potential for differential linkage to contribute to their results.

Characteristics associated with genetic counseling referral and BRCA1/2 testing among women in a large integrated health system.

BACKGROUND: Evidence shows underutilization of cancer genetics services. To explore the reasons behind this underutilization, this study evaluated characteristics of women who were referred for genetic counseling and/or had undergone BRCA1/2 testing. METHODS: An ovarian cancer risk perception study stratified 16,720 eligible women from the Henry Ford Health System into average-, elevated-, and high-risk groups based on family history. We randomly selected 3,307 subjects and interviewed 2,524 of them (76.3% response rate). RESULTS: Among the average-, elevated-, and high-risk groups, 2.3, 10.1, and 20.2%, respectively, reported genetic counseling referrals, and 0.8, 3.3, and 9.5%, respectively, reported having undergone BRCA testing. Personal breast cancer history, high risk, and perceived ovarian cancer risk were associated with both referral and testing. Discussion of family history with a doctor predicted counseling referral, whereas belief that family history influenced risk was the strongest BRCA testing predictor. Women perceiving their cancer risk as much higher than other women their age were twice as likely (95% confidence interval: 2.0-9.6) to report genetic counseling referral. CONCLUSION: In a health system with ready access to cancer genetic counseling and BRCA testing, women who were at high risk underutilized these services. There were strong associations between perceived ovarian cancer risk and genetic counseling referral, and between a belief that family history influenced risk and BRCA testing.

A day in the life of women with a serious mental illness: a qualitative investigation.

PURPOSE: Few studies have taken a holistic perspective to the lives of women with a serious mental illness (SMI). This qualitative study of women with an SMI describes and interprets women's experiences and provides a new understanding about the nature and needs of these women. METHODS: A convenience sample of 30 poor, urban, predominantly African-American women with a diagnosis of an SMI was recruited from an ongoing National Institutes of Mental Health study. Data collection involved face-to-face, in-depth interviews. The interviews were audio-recorded and transcribed verbatim. Data analysis occurred concurrently with data collection using a modified constant comparative method. RESULTS: The majority of the women self-identified as African American, single, having completed high school, and at the time of the interview were either unemployed or on disability. The most common SMI was major depression. A common topic in the women's reflections on their lives was that of social disadvantage both before being diagnosed as well as after to their diagnosis with an SMI. Salient themes of their stories included social isolation, experiencing loss, and having a lack of control over one's own life decisions. CONCLUSION: The findings from this study revealed varied experiences among these women as well as the complexity of their situation. The enhanced understanding of women's situation will allow mental health professionals to improve the quality of life for women with an SMI by taking a contextual approach to the treatment of their mental illness.

Barriers to asthma management among urban families: caregiver and child perspectives.

OBJECTIVE: Asthma is one of the most common chronic diseases of childhood. Those particularly affected are young, poor, African American children. Moreover, rates of emergency department visits, hospitalizations, and mortality are substantially higher for black children. Despite the ample published research on asthma prevalence and asthma management interventions, there is little research available on barriers to asthma care among urban, low-income families as perceived by children with asthma and their caregivers. METHODS: This qualitative study analyzed data from five focus groups conducted with 28 participants in metropolitan Atlanta. RESULTS: This study found caregiver and child health beliefs and perceptions concerning the use of daily controller medications to be a significant barrier to asthma care and proper self-management at home and at school. Barriers to environmental control consisted mostly of financial constraints, which made residential environmental remediation activities difficult to implement. Psychological distress was prevalent among both children and caregivers, which demonstrated the burden associated with managing a chronic illness. CONCLUSION: Families in urban, low-income communities require asthma management interventions tailored to their specific characteristics, barriers, and challenges. Our findings can be used to inform and enhance asthma management interventions for urban families with children with asthma.