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1.  Effect of Enhanced Information, Values Clarification, and Removal of Financial Barriers on Use of Prenatal Genetic Testing 
JAMA  2014;312(12):1210-1217.
Prenatal genetic testing guidelines recommend providing patients with detailed information to allow informed, preference-based screening and diagnostic testing decisions. The effect of implementing these guidelines is not well understood.
Toanalyze the effect of a decision support guide and elimination of financial barriers to testing on use of prenatal genetic testing and decision-making among women of varying literacy and numeracy levels.
Randomized trial conducted from 2010-2013.
Prenatal clinics at three county hospitals, a community clinic, an academic center, and three medical centers of an integrated health care delivery system in the San Francisco Bay area.
English- or Spanish-speaking women who had not yet undergone screening and/or diagnostic testing and remained pregnant at 11 weeks gestation (n=710).
A computerized, interactive decision support guide and access to prenatal testing with no out-of-pocket expense (n=357) or usual care as per current guidelines (n=353).
Main Outcome Measures
The primary outcome was invasive diagnostic test use, obtained via medical record review. Secondary outcomes included testing strategy undergone, and knowledge, risk comprehension, decisional conflict and decision regret at 24-36 weeks' gestation.
Women randomized to the intervention group, compared to those randomized to the control group, were less likely to have invasive testing [5.9% vs. 12.3%, odds ratio (OR) 0.45, 95% CI 0.25-0.80] and more likely to forego testing altogether [25.6% vs. 20.4%, OR 3.30 (reference group screening followed by invasive testing), CI 1.43-7.64]. They also had higher knowledge scores (9.4 vs. 8.6 on a 15-point scale, mean group difference 0.82, CI 0.34-1.31), and were more likely to correctly estimate the amniocentesis-related miscarriage risk (73.8% vs. 59.0%, OR 1.95, CI 1.39-2.75) and their age-adjusted chance of carrying a fetus with trisomy 21 (58.7% vs. 46.1%, OR 1.66, CI 1.22-2.28). Significant differences did not emerge in decisional conflict or decision regret.
Conclusions and Relevance
Full implementation of prenatal testing guidelines using a computerized, interactive decision support guide in the absence of financial barriers to testing resulted in lesser test use and more informed choices. If validated in additional populations, this approach may result in more informed and preference-based prenatal testing decision making, and fewer women undergoing testing.
PMCID: PMC4445462  PMID: 25247517
Prenatal genetic testing; informed decision making; low literacy
2.  Preferences for Outcomes Associated with Decisions to Undergo or Forego Genetic Testing for Lynch Syndrome 
Cancer  2012;119(1):215-225.
Current guidelines recommend offering genetic testing for Lynch syndrome to individuals whose tumors suggest this condition and to relatives of affected individuals. Little is known, however, regarding how patients view the prospect of such testing. In addition, data on preferences (utilities) for the potential outcomes of testing decisions for use in cost-effectiveness analyses are lacking.
We elicited time tradeoff utilities for ten potential outcomes of Lynch syndrome testing decisions and three associated cancers from 70 participants representing a range of knowledge about and experiences with Lynch syndrome.
Highest mean utilities were assigned to scenarios in which only the assessor's sibling had Lynch-associated colorectal cancer (ranging from 0.669±0.231 to 0.760±0.220). Utilities assigned to scenarios in which the assessor had Lynch-associated colorectal cancer ranged from 0.605±0.252 to 0.682±0.246, while the lowest mean utilities were assigned to 2 of the general cancer states (0.601±0.238 and 0.593±0.272 for colorectal and ovarian cancer respectively). Only 43% of the sample assigned higher values to undergoing Lynch testing and receiving negative results versus foregoing Lynch testing, while 50% assigned higher values to undergoing rather than foregoing surgery to prevent a subsequent cancer.
Genetic testing for Lynch syndrome, regardless of results, can have profound effects on quality of life; the utilities we collected can be used to incorporate these effects into cost-effectiveness analyses. Importantly, preferences for the potential outcomes of testing vary substantially, calling into question the extent to which patients would avail themselves of such testing if it were offered to them.
PMCID: PMC4356667  PMID: 22786716
Lynch syndrome; hereditary nonpolyposis colorectal cancer; genetic testing; quality of life; utilities; decision making
3.  Strength of Preference for Vaginal Birth as a Predictor of Delivery Mode Among Women who Attempt a Vaginal Delivery 
To assess the relationship between strength of preference for vaginal birth and likelihood of vaginal delivery among women attempting this delivery mode.
We conducted a longitudinal study of mode of delivery preferences among women who were less than 36 weeks pregnant. Participants completed a sociodemographic and clinical questionnaire and were asked if they preferred vaginal or cesarean delivery. Participants who preferred vaginal delivery completed a standard gamble exercise to assess the strength of this preference on a 0-to-1 scale (higher scores indicate stronger preference for vaginal delivery); those preferring cesarean delivery were assigned a value of 0. Data on clinical characteristics and delivery mode was obtained via telephone interview or chart review. Logistic regression was used to identify predictors of delivery mode among women who attempted a vaginal delivery.
Of 210 participants, 156 attempted a vaginal delivery. Their mean and median vaginal delivery preference scores were 0.70 (SD 0.31) and 0.75 (IQR 0.50–0.99), respectively. In multivariate analyses, women with a prior cesarean delivery (aOR 0.08, CI 0.02–0.39) or who delivered an infant ≥4000 grams (aOR 0.04, CI 0.01–0.28) had significantly lower odds of having a vaginal delivery. After controlling for potential confounders, participants with a stronger preference for vaginal delivery were at significantly higher odds of having a vaginal delivery (aOR 1.54, CI 1.01–2.34 for every 0.2 increase on the 0-to-1 scale).
Among women who attempt a vaginal delivery, the strength of preference for vaginal birth is predictive of the delivery mode ultimately undergone.
PMCID: PMC4218776  PMID: 24246523
Patient preferences; delivery mode
4.  Association Between Vaginal Birth After Cesarean Delivery and Primary Cesarean Delivery Rates 
Obstetrics and gynecology  2013;122(5):1010-1017.
To estimate the association between vaginal birth after cesarean delivery (VBAC) rates and primary cesarean delivery rates in California hospitals.
Hospital VBAC rates were calculated using birth certificate and discharge data from 2009, and hospitals were categorized by quartile of VBAC rate. Multivariable logistic regression analysis was performed to estimate the odds of cesarean delivery among low-risk nulliparous women with singleton pregnancies at term in vertex presentation (nulliparous term singleton vertex) by hospital VBAC quartile while controlling for many patient-level and hospital-level confounders.
There were 468,789 term singleton births in California in 2009 at 255 hospitals, 125,471 of which were low-risk nulliparous term singleton vertex. Vaginal birth after cesarean delivery rates varied between hospitals, with a range of 0–44.6%. Rates of cesarean delivery among low-risk nulliparous term singleton vertex women declined significantly with increasing VBAC rate. When adjusted for maternal and hospital characteristics, low-risk nulliparous term singleton vertex women who gave birth in hospitals in the highest VBAC quartile had an odds ratio of 0.55 (95% confidence interval 0.46–0.66) of cesarean delivery compared with women at hospitals with the lowest VBAC rates. Each percentage point increase in a hospital’s VBAC rate was associated with a 0.65% decrease in the low-risk nulliparous term singleton vertex cesarean delivery rate.
Hospitals with higher rates of VBAC have lower rates of primary cesarean delivery among low-risk nulliparous women with singleton pregnancies at term in vertex presentation.
PMCID: PMC4199326  PMID: 24104780
5.  Women’s Attitudes Regarding Prenatal Testing for a Range of Congenital Disorders of Varying Severity 
Journal of Clinical Medicine  2014;3(1):144-152.
Little is known about women’s comparative attitudes towards prenatal testing for different categories of genetic disorders. We interviewed women who delivered healthy infants within the past year and assessed attitudes towards prenatal screening and diagnostic testing, as well as pregnancy termination, for Down syndrome (DS), fragile X (FraX), cystic fibrosis (CF), spinal muscular atrophy (SMA), phenylketonuria (PKU) and congenital heart defects (CHD). Ninety-five women aged 21 to 48 years participated, of whom 60% were Caucasian, 23% Asian, 10% Latina and 7% African American; 82% were college graduates. Ninety-five to ninety-eight percent indicated that they would have screening for each condition, and the majority would have amniocentesis (64% for PKU to 72% for SMA). Inclinations regarding pregnancy termination varied by condition: Whereas only 10% reported they would probably or definitely terminate a pregnancy for CHD, 41% indicated they would do so for DS and 62% for SMA. Most women in this cohort reported that they would undergo screening for all six conditions presented, the majority without the intent to terminate an affected pregnancy. These women were least inclined to terminate treatable disorders (PKU, CHD) versus those associated with intellectual disability (DS, FraX) and were most likely to terminate for SMA, typically lethal in childhood.
PMCID: PMC4449668
prenatal genetic screening; fragile X syndrome; spinal muscular atrophy; abortion; prenatal diagnosis
6.  The effect of weight loss on changes in health-related quality of life among overweight and obese women with urinary incontinence 
To estimate the effect of change in weight and change in urinary incontinence (UI) frequency on changes in preference-based measures of health-related quality of life (HRQL) among overweight and obese women with UI participating in a weight loss trial.
We conducted a longitudinal cohort analysis of 338 overweight and obese women with UI enrolled in a randomized clinical trial comparing a behavioral weight loss intervention to an educational control condition. At baseline, 6, and 18 months, health utilities were estimated using the Health Utilities Index Mark 3 (HUI3), a transformation of the SF-36 to the preference-based SF-6D, and the estimated Quality of Well-Being (eQWB) score (a summary calculated from the SF-36 physical functioning, mental health, bodily pain, general health perceptions, and role limitations-physical subscale scores). Potential predictors of changes in these outcomes were examined using generalized estimating equations.
In adjusted multivariable models, weight loss was associated with improvement in HUI3, SF-6D, and eQWB at 6 and 18 months (p<.05). Increases in physical activity also were independently associated with improvement in HUI3 (p=.01) and SF-6D (p=.006) scores at 18 months. In contrast, reduction in UI frequency did not predict improvements in HRQL at 6 or 18 months.
Weight loss and increased physical activity, but not reduction in UI frequency, were strongly associated with improvements in health utilities measured by the HUI3, SF-6D, and eQWB. These findings provide important information that can be used to inform cost-utility analyses of weight loss interventions.
PMCID: PMC3375350  PMID: 22161726
quality of life; weight loss; urinary incontinence; HUI; eQWB; SF-6D
7.  Strategies to Identify the Lynch Syndrome Among Patients With Colorectal Cancer 
Annals of internal medicine  2011;155(2):69-79.
Testing has been advocated for all persons with newly diagnosed colorectal cancer to identify families with the Lynch syndrome, an autosomal dominant cancer-predisposition syndrome that is a paradigm for personalized medicine.
To estimate the effectiveness and cost-effectiveness of strategies to identify the Lynch syndrome, with attention to sex, age at screening, and differential effects for probands and relatives.
Markov model that incorporated risk for colorectal, endometrial, and ovarian cancers.
Data Sources
Published literature.
Target Population
All persons with newly diagnosed colorectal cancer and their relatives.
Time Horizon
Third-party payer.
Strategies based on clinical criteria, prediction algorithms, tumor testing, or up-front germline mutation testing, followed by tailored screening and risk-reducing surgery.
Outcome Measures
Life-years, cancer cases and deaths, costs, and incremental cost-effectiveness ratios.
Results of Base-Case Analysis
The benefit of all strategies accrued primarily to relatives with a mutation associated with the Lynch syndrome, particularly women, whose life expectancy could increase by approximately 4 years with hysterectomy and salpingo-oophorectomy and adherence to colorectal cancer screening recommendations. At current rates of germline testing, screening, and prophylactic surgery, the strategies reduced deaths from colorectal cancer by 7% to 42% and deaths from endometrial and ovarian cancer by 1% to 6%. Among tumor-testing strategies, immunohistochemistry followed by BRAF mutation testing was preferred, with an incremental cost-effectiveness ratio of $36 200 per life-year gained.
Results of Sensitivity Analysis
The number of relatives tested per proband was a critical determinant of both effectiveness and cost-effectiveness, with testing of 3 to 4 relatives required for most strategies to meet a threshold of $50 000 per life-year gained. Immunohistochemistry followed by BRAF mutation testing was preferred in 59% of iterations in probabilistic sensitivity analysis at a threshold of $100 000 per life-year gained. Screening for the Lynch syndrome with immunohistochemistry followed by BRAF mutation testing only up to age 70 years cost $44 000 per incremental life-year gained compared with screening only up to age 60 years, and screening without an upper age limit cost $88 700 per incremental life-year gained compared with screening only up to age 70 years.
Other types of cancer, uncertain family pedigrees, and genetic variants of unknown significance were not considered.
Widespread colorectal tumor testing to identify families with the Lynch syndrome could yield substantial benefits at acceptable costs, particularly for women with a mutation associated with the Lynch syndrome who begin regular screening and have risk-reducing surgery. The cost-effectiveness of such testing depends on the participation rate among relatives at risk for the Lynch syndrome.
Primary Funding Source
National Institutes of Health.
PMCID: PMC3793257  PMID: 21768580
8.  Decrease in Urinary Incontinence Management Costs in Women Enrolled in a Clinical Trial of Weight Loss to Treat Urinary Incontinence 
Obstetrics and Gynecology  2012;120(2 Pt 1):277-283.
To estimate the effect of a decrease in urinary incontinence frequency on urinary incontinence management costs among women enrolled in a clinical trial of a weight loss intervention and to identify factors that predict change in cost.
This is a secondary cohort analysis of 338 obese and overweight women with ≥ 10 weekly episodes of urinary incontinence enrolled in an 18-month randomized clinical trial of a weight loss intervention compared to a structured education program to treat urinary incontinence. Quantities of resources used for incontinence management, including pads, additional laundry, and dry cleaning were reported by participants. Direct costs for urinary incontinence management (“cost”) were calculated by multiplying resources used by national resource costs (in 2006 U.S. dollars). Randomized groups were combined to examine the effects of change in incontinence frequency on cost. Possible predictors of change in cost were examined using generalized estimating equations controlling for factors associated with change in cost in univariable analyses.
Mean (±SD) age was 53±10 years and baseline weight was 97+17 kg. Mean weekly urinary incontinence frequency was 24+18 at baseline and decreased by 37% at 6 months and 60% at 18 months follow-up (both P<0.001). At baseline, adjusted mean cost was $7.76±$14 per week, with costs increasing significantly with greater incontinence frequency. Mean cost decreased by 54% at 6 months and 81% at 18 months (both P<0.001). In multivariable analyses, cost independently decreased by 23% for each decrease of seven urinary incontinence episodes per week and 21% for each 5 kg of weight lost (P<0.001 for both).
In obese and overweight women enrolled in a clinical trial of weight loss for urinary incontinence, incontinence management cost decreased by 81% at 18 months ($327 per woman per year) and was strongly and independently associated with decreasing incontinence frequency.
PMCID: PMC3404427  PMID: 22825085
9.  Comparison and correlates of three preference-based health-related quality-of-life measures among overweight and obese women with urinary incontinence 
To compare three preference-based health-related quality-of-life (HRQL) measures and examine independent correlates of HRQL among overweight and obese women with urinary incontinence (UI) enrolled in a weight loss intervention trial.
Participants completed baseline questionnaires, which included the Health Utilities Index 3 (HUI3) and Medical Outcomes Study Short Form-36 (SF-36). The SF-36 was used to derive SF-6D and estimated Quality of Well-Being (eQWB) scores. Height, weight, medical history, incontinence measures, and level of physical activity also were assessed. The intraclass correlation coefficient (ICC) was computed, and differences in mean scores across HRQL measures were examined. Potential correlates of HUI3, SF-6D, and eQWB scores were evaluated using multivariable generalized linear models.
Mean ± SD scores for the HUI3, SF-6D, and eQWB were 0.81 ± 0.18, 0.75 ± 0.10, and 0.71 ± 0.06, respectively. Significant differences were observed across measures (P < 0.0001), and the overall ICC was 0.36. In multivariable analyses, BMI was negatively associated with HUI3 (P = 0.003) and eQWB (P < 0.001), and UI episode frequency was negatively associated with eQWB (P = 0.015) and SF-6D (P < 0.001).
Significant differences in mean utilities across the HUI3, SF-6D, and eQWB indicate that these measures do not assess identical dimensions of HRQL. Both BMI and UI episode frequency were related to HRQL in this cohort; however, the magnitude of the relationship depended on the preference-based measure used. These findings highlight the need to consider the method used to generate HRQL values for calculating quality-adjusted life-years in cost-utility analyses, since choice of method may have a substantial impact on the outcome of the analysis.
PMCID: PMC3174313  PMID: 21461953
Quality of life; Obesity; Urinary incontinence; HUI; eQWB; SF-6D
10.  Influence of Patient Preferences on the Cost-Effectiveness of Screening for Lynch Syndrome 
Journal of Oncology Practice  2012;8(3 Suppl):e24s-e30s.
This cost-utility analysis reports on the effect of quality of life on the value of screening all new patients with colorectal cancer for Lynch syndrome.
Patients and relatives have varying preferences for genetic testing and interventions related to hereditary cancer syndromes. We examined how the impact of these services on quality of life (QoL) affects the cost-effectiveness of screening for Lynch syndrome among probands newly diagnosed with colorectal cancer and their relatives.
We constructed a state-transition model comparing screening strategies (clinical criteria, prediction algorithms, tumor testing, and upfront germline testing) with no screening to identify Lynch syndrome. The model incorporated individuals' health state utilities after screening, germline testing, and risk-reducing surgeries, with utilities persisting for 12 months in the base case. Outcomes consisted of quality-adjusted life-years (QALYs), costs, and cost per QALY gained. Sensitivity analyses assessed how the duration and magnitude of changes in QoL influenced results.
Multiple screening strategies yielded gains in QALYs at acceptable costs compared with no screening. The preferred strategy—immunohistochemistry of tumors followed by BRAF mutation testing (IHC/BRAF)—cost $59,700 per QALY gained in the base case. The duration and magnitude of decreases in QoL after decisions related to germline testing and surgeries were key determinants of the cost-effectiveness of screening. IHC/BRAF cost > $100,000 per QALY gained when decrements to QoL persisted for 21 months.
Screening for Lynch syndrome in the population is likely to yield long-term gains in life expectancy that outweigh any short-term decreases in QoL, at acceptable costs. Counseling for individuals should aim to mitigate potential negative impact of genetic testing and risk-reducing interventions on QoL.
PMCID: PMC3348599  PMID: 22942831
11.  Long-Term Outcomes of the Total or Supracervical Hysterectomy (TOSH) Trial 
Participants in the multi-center, randomized Total or Supracervical Hysterectomy (TOSH) trial showed within-group improvement in pelvic floor symptoms 2 years post-surgery and no differences between supracervical (SCH) versus total hysterectomy (TAH). This study describes longer term outcomes from the largest recruiting site.
Questionnaires addressing pelvic symptoms, sexual function, and health-related quality of life were administered. Linear models and McNemar’s test were utilized.
Thirty-seven participants (69%) responded (19 TAH, 18 SCH); mean follow up was 9.1±0.7 years. No between-group differences emerged in urinary incontinence, voiding dysfunction, pelvic prolapse symptoms and overall health related quality of life (HRQOL). Within-group analysis showed significant improvement in the ability to have and enjoy sex (P = 0.002) and in the SF-36 physical component summary score (P = 0.03) among women randomized to TAH.
9 years after surgery, TOSH participants continue to experience improvement and show no major between-group differences in lower urinary tract or pelvic floor symptoms conferring no major benefit of SCH over TAH.
PMCID: PMC3252027  PMID: 22229107
12.  Prevalence and incidence of urinary incontinence in a diverse population of women with noncancerous gynecologic conditions 
To determine the prevalence and incidence of urinary incontinence (UI) in a diverse cohort of women presenting with noncancerous gynecologic conditions and to assess factors associated with UI prevalence and incidence.
We conducted a secondary analysis of data from SOPHIA (Study of Pelvic Problems, Hysterectomy and Intervention Alternatives), a longitudinal study of women with noncancerous gynecologic conditions (bleeding, pelvic pain, and symptomatic fibroids). UI was defined as incontinence in the last 4 weeks as reported on interviewer-administered annual questionnaires. We also evaluated the type of UI: stress (SUI), urge (UUI) or mixed incontinence (MUI).
The study population of 907 women was 40.8% White, 28.0% African American, 17.3% Latina and 8.1% Asian. The mean age was 44.1 ± 5.4 years and 48.5% had an annual household income of ≤$50,000. The overall prevalence of any UI was 51.1%. At baseline, SUI was the most common at 39.4% followed by UUI at 23.7% and MUI at 18.9%. The average annual incidence for any UI was 4.2%. 13% of the women who underwent hysterectomy developed incident UI after their surgery. In multivariable logistic regression analysis, prevalent UI was associated with the following: age in decades (OR 1.6, 95% CI 1.2, 2.2), Latina race/ethnicity compared to white (OR 2.1, 95% CI 1.3, 3.3), and parity (OR 1.7, 95% CI 1.2, 2.4). None of the factors evaluated were associated with incidence of UI.
Urinary incontinence is very common in women seeking care for noncancerous gynecologic conditions, particularly among older, parous Latinas.
PMCID: PMC3060785  PMID: 21423570
Urinary incontinence; epidemiology; prevalence; incidence
13.  Preferences for Surveillance Strategies for Women Treated for High-Grade Precancerous Cervical Lesions 
Gynecologic oncology  2010;118(2):108-115.
Data are lacking on how women view alternative approaches to surveillance for cervical cancer after treatment of high-grade cervical intraepithelial neoplasia. We measured and compared patient preferences (utilities) for scenarios with varying surveillance strategies and outcomes to inform guidelines and cost-effectiveness analyses of post-treatment surveillance options.
English- or Spanish-speaking women who had received an abnormal Pap test result within the past two years were recruited from general gynecology and colposcopy clinics and newspaper and online advertisements in 2007 and 2008. Participation consisted of one face-to-face interview, during which utilities for 11 different surveillance scenarios and their associated outcomes were elicited using the time tradeoff metric. A sociodemographic questionnaire also was administered.
65 women agreed to participate and successfully completed the preference elicitation exercises. Mean utilities ranged from .989 (undergoing only a Pap test, receiving normal results) to .666 (invasive cervical cancer treated with radical hysterectomy or radiation and chemotherapy). Undergoing both a Pap and HPV test and receiving normal/negative results had a lower mean utility (.953) then undergoing only a Pap test and receiving normal results (.989). Having both tests and receiving normal Pap but positive HPV results was assigned an even lower mean utility (.909). 15.9% of the respondents gave higher utility scores to the Pap plus HPV testing scenario (with normal/negative results) than to the “Pap test alone” scenario (with normal results), while 17.5% gave the Pap test alone scenario a higher utility score.
Preferences for outcomes ending with normal results but involving alternative surveillance processes differ substantially. The observed differences in utilities have important implications for clinical guidelines and cost-effectiveness analyses.
PMCID: PMC2926130  PMID: 20553960
14.  Race/Ethnicity and Pregnancy Decision Making: The Role of Fatalism and Subjective Social Standing 
Journal of Women's Health  2010;19(6):1195-1200.
Rates of unintended pregnancy in the United States differ by race and ethnicity. We examined whether these differences might be explained by maternal fatalism and subjective social standing.
We used data from 1070 pregnant women of sociodemographically diverse backgrounds enrolled in prenatal care in the San Francisco Bay area. Logistic regression was used to explore the relationship between attitude variables and a measure of pregnancy decision making (“not trying to get pregnant”).
African American women were more likely than others to report not trying to get pregnant with the current pregnancy (adjusted odds ratio [AOR] 2.04, 95% confidence interval [95% CI] 1.22-3.43, p = 0.007). Higher subjective social standing was associated with a lower likelihood of not trying among white and U.S.-born women only (AOR 0.67, p = 0.001 and AOR 0.75, p < 0.001, respectively. Fatalism was associated with not trying in bivariate but not multivariable analyses.
In this population, the likelihood of reporting not trying to get pregnant was higher among racial/ethnic minorities regardless of subjective social standing. Programs aimed at reduction in unintended pregnancy rates need to be targeted to a broader population of women.
PMCID: PMC2924781  PMID: 20469962
15.  Sexual Function and Aging in Racially and Ethnically Diverse Women 
To examine factors influencing sexual activity and functioning in racially- and ethnically-diverse, middle-aged and older women.
Cross-sectional cohort study
Integrated health care delivery system
1,977 women aged 45 to 80 years
Self-administered questionnaires assessed sexual desire, activity, satisfaction, and problems.
Of the 1,977 participants (including 876 White, 388 African American, 347 Latina, and 351 Asian women), 43% reported at least moderate sexual desire, and 60% were sexually active in the previous 3 months. Half of sexually active participants (n=969) described their overall sexual satisfaction as moderate to high. Among sexually inactive women, the most common reason for inactivity was lack of interest in sex (39%), followed by lack of a partner (36%), physical problem of partner (23%), and lack of interest by partner (11%); only 9% were inactive from personal physical problems. In multivariable analysis, African-American women were more likely than white women to report at least moderate desire (OR=1.65, 95%CI=1.25-2.17) but less likely to report weekly sexual activity (OR=0.68, 95%CI=0.48-0.96); sexually active Latina women were more likely than white women to report at least moderate sexual satisfaction (OR=1.75, 95%CI=1.20-2.55).
A substantial proportion of community-dwelling women remain interested and engaged in sexual activity into older age. Lack of a partner capable of or interested in sex may contribute more to sexual inactivity than personal health problems in this population. Racial/ethnic differences in self-reported sexual desire, activity, and satisfaction may influence discussions about sexual difficulties in middle-aged and older women.
PMCID: PMC2749599  PMID: 19558473
female sexual function; aging; race/ethnicity; sexual activity
16.  Challenges To The Translation Of Genomic Information Into Clinical Practice And Health Policy: Utilization, Preferences, And Economic Value 
It is important to understand how knowledge of genomics can be translated from basic research into clinical practice and health policies. The objective of this paper is to review existing evidence on three key factors in the adoption of personalized medicine – utilization, preferences, and economic value - using two cancer examples: HER2/neu testing and trastuzumab (Herceptin®) and genetic testing for Lynch syndrome. Our findings suggest where further research is needed to build an evidence base addressing utilization of, preferences for, and the potential costs and benefits of personalized medicine. Major challenges include a lack of linked data, the need for relevant research frameworks and methodologies, and the clinical complexities of genomic-based diagnostics and treatment.
PMCID: PMC2910510  PMID: 18535933
Personalized medicine; health policy; health services research; economics; utilization; preferences
17.  Finding Autonomy in Birth* 
Bioethics  2009;23(1):1-8.
Over the last several years, as cesarean deliveries have grown increasingly common, there has been a great deal of public and professional interest in the phenomenon of women ‘choosing’ to deliver by cesarean section in the absence of any specific medical indication. The issue has sparked intense conversation, as it raises questions about the nature of autonomy in birth. Whereas mainstream bioethical discourse is used to associating autonomy with having a large array of choices, this conception of autonomy does not seem adequate to capture concerns and intuitions that have a strong grip outside of this discourse. An empirical and conceptual exploration of how delivery decisions ought to be negotiated must be guided by a rich understanding of women’s agency and its placement within a complicated set of cultural meanings and pressures surrounding birth. It is too early to be ‘for’ or ‘against’ women’s access to cesarean delivery in the absence of traditional medical indications - and indeed, a simple pro- or con- position is never going to do justice to the subtlety of the issue. The right question is not whether women ought to be allowed to choose their delivery approach, but rather, taking the value of women’s autonomy in decision-making around birth as a given, what sorts of guidelines, practices, and social conditions will best promote and protect women’s full inclusion in a safe and positive birth process.
PMCID: PMC2628951  PMID: 19076937
birth; autonomy; cesarean section; vaginal delivery; cesarean delivery on maternal request; CDMR
18.  The Day-to-Day Impact of Urogenital Aging: Perspectives from Racially/Ethnically Diverse Women 
Urogenital symptoms affect up to half of women after menopause, but their impact on women’s day-to-day functioning and wellbeing is poorly understood.
Postmenopausal women aged 45 to 80 years reporting urogenital dryness, soreness, itching, or pain during sex were recruited to participate in in-depth focus groups to discuss the impact of their symptoms. Focus groups were homogenous with respect to race/ethnicity and stratified by age (for White or Black women) or language (for Latina women). Transcripts of sessions were analyzed according to grounded theory.
Six focus groups were conducted, involving 44 women (16 White, 14 Black, 14 Latina). Five domains of functioning and wellbeing affected by symptoms were identified: sexual functioning, everyday activities, emotional wellbeing, body image, and interpersonal relations. For some participants, symptoms primarily affected their ability to have and enjoy sex, as well as be responsive to their partners. For others, symptoms interfered with everyday activities, such as exercising, toileting, or sleeping. Participants regarded their symptoms as a sign that they were getting old or their body was deteriorating; women also associated symptoms with a loss of womanhood or sexuality. Additionally, participants reported feeling depressed, embarrassed, and frustrated about their symptoms, and expressed reluctance to discuss them with friends, family, or health care providers.
Urogenital symptoms can have a marked impact on sexual functioning, everyday activities, emotional wellbeing, body image, and interpersonal relations after menopause. Clinicians may need to question women actively about these symptoms, as many are reluctant to seek help for this problem.
PMCID: PMC2811605  PMID: 19908103
urogenital atrophy; vaginal dryness; dyspareunia; menopause; quality of life
19.  Mode of Delivery: Toward Responsible Inclusion of Patient Preferences 
Obstetrics and gynecology  2008;112(4):913-918.
Deciding when and how to incorporate patient preferences regarding mode of delivery is challenging for both obstetric providers and policymakers. An analysis of current guidelines in four clinical scenarios (prior cesarean, twin delivery, breech presentation, and maternal request for cesarean) indicates that some guidelines are highly prescriptive, while others are more flexible, based on physicians’ discretion or (less frequently) patient preferences, without consistency or explicit rationale for when such flexibility is permissible, advisable, or obligatory. While patient choice advocates have called for more patient-responsive guidelines, concerns have also been raised, especially in the context of discussions of cesarean delivery on maternal request, about the dangers of unfettered patient preference-driven clinical decisions. In this article, we outline a framework for the responsible inclusion of patient preferences into decision making regarding approach to delivery. We conclude, using this framework, that more explicit incorporation of patient preferences are called for in the first three scenarios, and indicate why expanding access to cesarean delivery on maternal request is more complicated and would require more data and further consideration.
PMCID: PMC2643019  PMID: 18827136

Results 1-19 (19)