Patient-driven decisions and perceptions of the 'safest possible choice': insights from patient-provider conversations about how some breast cancer patients choose contralateral prophylactic mastectomy.

OBJECTIVE: Observe patient-clinician communication to gain insight about the reasons underlying the choice of patients with unilateral breast cancer to undergo contralateral prophylactic mastectomy (CPM), despite lack of survival benefit, risk of harms, and cautions expressed by surgical guidelines and clinicians. METHODS & MEASURES: WORDS is a prospective study that explored patient-clinician communication and patient decision making. Participants recorded clinical visits through a downloadable mobile application. We analyzed 44 recordings from 22 patients: 9 who chose CPM, 8 who considered CPM but decided against it, and 5 who never considered CPM. We used abductive analysis combined with constructivist grounded theory methods. RESULTS: Decisions to undergo CPM are patient-driven and motivated by perceptions that CPM is the most aggressive, and therefore safest, treatment option available. These decisions are shaped not primarily by the content of conversations with clinicians, but by the history of cancer in patients' families, their own first-hand experiences with cancers among loved ones, fear for their children, and anxiety about cancer recurrence. CONCLUSION: The perception that CPM is the safest, most aggressive option strongly influences patients, despite scientific evidence to the contrary. Future efforts to address high CPM rates should focus on patient-driven decision making and cancer-related fears.

Traditional supports and contemporary disrupters of high fertility desires in sub-Saharan Africa: a scoping review.

RATIONALE: The desired number of children is markedly higher in Sub-Saharan Africa (SSA) than in other major regions. Efforts to understand how and why these desires are generated and maintained have yielded a broad research literature. Yet there is no full picture of the range of contextual, cultural, and economic factors that support and disrupt high fertility desires. OBJECTIVE: This scoping review synthesizes thirty years of research on the determinants of fertility desires in SSA to better understand what factors underlie men and women's stated fertility desires and how they weigh the costs and benefits of having (more) children. METHOD: We identified and screened 9863 studies published from 1990 to 2021 from 18 social science, demographic, and health databases. We appraised determinants of fertility desires from 258 studies that met inclusion criteria according to their roles as traditional supports or contemporary disrupters of high fertility desires. RESULTS: We identified 31 determinants of high fertility desires, which we organized into six overarching themes: economy and costs; marriage; the influence of others; education and status; health and mortality; and demographic predictors. For each theme, we summarize ways in which the determinants both support and disrupt high fertility desires. We find that high fertility remains desirable in many regions of sub-Saharan Africa but contemporary disrupters, such as the economic situations and increases to family planning and education, cause individuals to decrease their desired fertility with such decreases often viewed as a temporary adjustment to temporary conditions. Most included studies were quantitative, cross-sectional, and based on survey data. CONCLUSION: This review demonstrates how traditionally supportive and contemporary disruptive forces simultaneously influence fertility desires in sub-Saharan Africa. Future studies analyzing fertility desires in sub-Saharan Africa should be informed by the lived experiences of men and women in this region, with qualitative and longitudinal studies prioritized.

In sub-Saharan Africa, both men and women continue to desire large numbers of children in contrast to most regions of the world where the desired number of children is near or below replacement level (around 2.0 children per couple). We conducted a comprehensive review of the existing research on the sources and drivers of the persistently high desired fertility in sub-Saharan Africa. Based on the review, 258 studies were included in this analysis. Several factors that influence fertility desires among men and women in this population were identified. We categorized them as either traditional supports (factors that have historically supported and promoted high fertility desires) or contemporary disrupters (factors that have more recently inhibited or discouraged high fertility desires). Although fertility desires are shaped by a wide range of factors that vary based on specific country and population, several overarching conclusions were clear. Contemporary changes in the economy and family have caused individuals to shift their fertility desires downward, and this shift is often viewed as a temporary adjustment to temporary conditions. Increased autonomy and formal schooling of women and availability of family planning can help position women to implement lower fertility desires. There is a need for more longitudinal research in this region to better understand how fertility desires may change over a person's life, and for more qualitative studies that allow people to describe and explain their lives and fertility desires more directly in ways that allow for uncertainty and ambiguity.

Patient-Reported Outcomes of Breast Reconstruction: Does the Quality of Decisions Matter?

BACKGROUND: Little is known about how the quality of decisions influences patient-reported outcomes (PROs). We hypothesized that higher decision quality for breast reconstruction would be independently associated with better PROs. METHODS: We conducted a prospective cohort study of patients undergoing mastectomy with or without reconstruction. Patients were enrolled before surgery and followed for 18 months. We used BREAST-Q scales to measure PROs and linear regression models to explore the relationship between decision quality (based on knowledge and preference concordance) and PROs. Final models were adjusted for baseline BREAST-Q score, radiation, chemotherapy, and major complications. RESULTS: The cohort included 101 patients who completed baseline and 18-month surveys. Breast reconstruction was independently associated with higher satisfaction with breasts (ß = 20.2, p = 0.0002), psychosocial well-being (ß = 14.4, p = 0.006), and sexual well-being (ß = 15.7, p = 0.007), but not physical well-being. Patients who made a high-quality decision had similar PROs as patients who did not. Among patients undergoing mastectomy with reconstruction, higher decision quality was associated with lower psychosocial well-being (ß = -14.2, p = 0.01). CONCLUSIONS: Breast reconstruction was associated with better PROs in some but not all domains. Overall, making a high-quality decision was not associated with better PROs. However, patients who did not have reconstruction had a trend toward better well-being after making a high-quality decision, whereas patients who did have reconstruction had poorer well-being after making a high-quality decision. Additional research on the relationship between decision quality and PROs is needed.

Factors associated with never-use of long-acting reversible contraception among adult reproductive-aged women in Ohio.

BACKGROUND: The number of women using long-acting reversible contraception (LARC)-intrauterine devices (IUDs) and implants-is increasing and 14% of contraceptive users in the United States adopt LARC. We examined correlates of LARC never-use in a population-based survey of reproductive-aged women in Ohio. METHODS: We analyzed data from the 2018-19 Ohio Survey of Women. We examined the prevalence of LARC never-use and reasons for never-use among ever users of contraception (N = 2388). Using Poisson regression to generate prevalence ratios (PRs), we examined associations between selected correlates (demographic factors, healthcare access/quality measures, and religious/political views) and LARC never-use. RESULTS: Most Ohio women (74%) had never used LARC. Commonly reported reasons for not using an IUD or an implant were preferring a different method (46% and 45%, respectively), not wanting an object inside their body (45% and 43%), side effect concerns (39% and 33%), insertion/removal concerns (31% and 25%), and unfamiliarity (13% and 20%). Conservative political views (PR: 1.12, 95% confidence interval [CI]: 1.04-1.22), pro-life affiliation (PR: 1.11, 95% CI: 1.02-1.20), placing high importance on religion in daily life (PR: 1.15, 95% CI: 1.06-1.26), and being non-Hispanic white as compared to non-Hispanic Black (PR: 1.20, 95% CI: 1.02-1.41) were significantly associated with LARC never-use. Findings were generally similar for models analyzing IUD and implant never-use separately. CONCLUSIONS: Among ever-users of contraception, LARC never-use was associated with having conservative political views, being religious, and having a pro-life affiliation. Except for race/ethnicity, demographic and healthcare measures were not associated with LARC never-use among women in Ohio.

Housing Stability and Access to General Healthcare and Reproductive Healthcare Among Women in Ohio.

BACKGROUND: The relationship between housing instability and reproductive healthcare is understudied. We examined the association between housing insecurity and access and utilization of general healthcare, contraceptive healthcare, and abortion care. METHODS: Using data from a population-representative survey of adult reproductive-age Ohio women (N = 2,529), we assessed housing insecurity (not paying rent/mortgage on time in the past year). We examined associations between housing insecurity and the following outcomes: (1) not being able to access general healthcare in the past year; (2) experiencing delays or difficulties in accessing contraceptive healthcare in the past year; and (3) ever having an abortion. We used unadjusted and adjusted logistic regression models. We selected confounders a priori and included age, socioeconomic status, and healthcare status. RESULTS: Overall, 10.6% of Ohio women of adult reproductive age experienced housing insecurity. Approximately 27.5% of respondents were not able to access general healthcare and 10.4% experienced delays or difficulties in accessing contraceptive care. Compared to housing-secure respondents, housing-insecure women were less able to access general healthcare (adjusted odds ratio [aOR]:2.16; 95% confidence interval [CI]:1.45-3.23) and more likely to experience delays or difficulties when accessing contraceptive care (aOR:1.74; 95% CI:1.00-3.04). Insecure housing was not statistically associated with ever having an abortion (aOR:1.76; 95% CI:0.93-3.34). CONCLUSIONS: In this study, recent housing insecurity was associated with poorer access to general and contraceptive healthcare. Studies utilizing multidimensional measures of housing insecurity and other material insecurity measures are needed to further explore the relationship between material insecurity and access to general and contraceptive care.

Community-based Systems Dynamics for Reproductive Health: An Example from Urban Ohio.

BACKGROUND: Health outcomes, risk factors, and policies are complexly related to the reproductive health system. Systems-level frameworks for understanding and acting within communities through community-engaged research are needed to mitigate adverse reproductive health outcomes more effectively within the community. OBJECTIVES: To describe and share lessons learned from an ongoing application of a participatory modeling approach (community-based system dynamics) that aims to eliminate racial inequities in Black-White reproductive health outcomes. METHODS: The community-based system dynamics approach involves conducting complementary activities, workshops, modeling, and dissemination. We organized workshops, co-developed a causal loop diagram of the reproductive health system with participants from the community, and created materials to disseminate workshop findings and preliminary models. LESSONS LEARNED: Many opportunities exist for cross-fertilization of best practices between community-based system dynamics and community-based participatory research. Shared learning environments offer benefits for modelers and domain experts alike. Additionally, identifying local champions from the community helps manage group dynamics. CONCLUSIONS: Community-based system dynamics is well-suited for understanding complexity in the reproductive health system. It allows participants from diverse perspectives to identify strategies to eliminate racial inequities in reproductive health outcomes.

Development of a Mobile App for Clinical Research: Challenges and Implications for Investigators.

Advances in mobile app technologies offer opportunities for researchers to feasibly collect a large amount of patient data that were previously inaccessible through traditional clinical research methods. Collection of data via mobile devices allows for several advantages, such as the ability to continuously gather data outside of research facilities and produce a greater quantity of data, making these data much more valuable to researchers. Health services research is increasingly incorporating mobile health (mHealth), but collecting these data in current research institutions is not without its challenges. Our paper uses a specific example to depict specific challenges of mHealth research and provides recommendations for investigators looking to incorporate digital app technologies and patient-collected digital data into their studies. Our experience describes how clinical researchers should be prepared to work with variable software and mobile app development timelines; research institutions that are interested in participating in mHealth research need to invest in supporting information technology infrastructures in order to be a part of the growing field of mHealth and gain access to valuable patient-collected data.

The Relationship Between Hepatitis C Virus Rates and Office-Based Buprenorphine Access in Ohio.

BACKGROUND: The United States is experiencing an epidemic of hepatitis C virus (HCV) infections due to injection drug use, primarily of opioids and predominantly in rural areas. Buprenorphine, a medication for opioid use disorder, may indirectly prevent HCV transmission. We assessed the relationship of HCV rates and office-based buprenorphine prescribing in Ohio. METHODS: We conducted an ecological study of the county-level (n = 88) relationship between HCV case rates and office-based buprenorphine prescribing in Ohio. We fit adjusted negative binomial models between the county-level acute and total HCV incidence rates during 2013-2017 and 1) the number of patients in each county that could be served by office-based buprenorphine (prescribing capacity) and 2) the number served by office-based buprenorphine (prescribing frequency) from January-March, 2018. RESULTS: For each 10% increase in acute HCV rate, office-based buprenorphine prescribing capacity differed by 1% (95% CI: -1%, 3%). For each 10% increase in total HCV rate, office-based buprenorphine prescribing capacity was 12% (95% CI: 7%, 17%) higher. For each 10% increase in acute HCV rate, office-based buprenorphine prescribing frequency was 1% (95% CI: -1%, 3%) higher. For each 10% increase in total HCV rate, office-based buprenorphine prescribing frequency was 14% (95% CI: 7%, 20%) higher. CONCLUSIONS: Rural counties in Ohio have less office-based buprenorphine and higher acute HCV rates versus urban counties, but a similar relationship between office-based buprenorphine prescribing and HCV case rates. To adequately prevent and control HCV rates, certain rural counties may need more office-based buprenorphine prescribing in areas with high HCV case rates.

Neighborhood Evictions, Marital/Cohabiting Status, and Preterm Birth among African American Women.

Introduction: Housing stability is an important determinant of health, but no studies to our knowledge have examined the spill-over effects of neighborhood eviction rates on individual risk of preterm birth (PTB) among African American women. Objective: We assessed whether living in a neighborhood with high eviction rates was associated with risk of PTB among African American women, and whether marital/cohabiting status modified the association. Methods: We spatially linked interview, medical record, and current address data from the Life-course Influences on Fetal Environments Study (2009-2011, N=1386) of postpartum African American women from Metropolitan Detroit, Michigan, to publicly available data on block-group level rates of eviction filings and judgements. PTB was defined as birth before 37 completed weeks of gestation and occurred in 16.3% of the sample (n=226). Eviction rate variables were rescaled by their interquartile ranges (75th vs 25th percentiles). Women self-reported whether they were married to, or cohabiting with, the father of their baby during the in-person interview. We used Modified Poisson regression with robust error variance to estimate relative risks of PTB associated with each eviction variable separately and included an interaction term with marital/cohabiting status (P<.10 considered significant) in adjusted models. Results: In the overall sample, neighborhood eviction filings and judgements did not predict PTB, but the associations were modified by marital/cohabiting status (P for interaction = .02, and .06, respectively). Among women who were married/cohabiting, those who lived in neighborhoods with high eviction filings (adjusted relative risk: 1.25, 95% CI: 1.06, 1.47) and eviction judgements (adjusted relative risk: 1.18, 95% CI: 1.05, 1.33) had higher risk of PTB than women who did not. Little evidence of an association was observed for women who were not married/cohabiting. Conclusions: Future studies should examine the mechanisms of the reported associations to identify novel intervention targets (eg, addressing landlord discrimination) and policy solutions (eg, ensuring a living wage and providing affordable housing assistance to everyone who qualifies) to reduce the burden of PTB among African Americans.

Use of nonpreferred contraceptive methods among women in Ohio.

OBJECTIVES: We describe the prevalence and correlates of nonuse of preferred contraceptive method among women 18-44 years of age in Ohio using contraception. STUDY DESIGN: The population-representative Ohio Survey of Women had 2529 participants in 2018-2019, with a response rate of 33.5%. We examined prevalence of preferred method nonuse, reasons for nonuse, and satisfaction with current method among current contraception users (n = 1390). We evaluated associations between demographic and healthcare factors and preferred method nonuse. RESULTS: About 25% of women reported not using their preferred contraceptive method. The most common barrier to obtaining preferred method was affordability (13%). Those not using their preferred method identified long-acting methods (49%), oral contraception (33%), or condoms (21%) as their preferred methods. The proportion using their preferred method was highest among intrauterine device (IUD) users (86%) and lowest among emergency contraception users (64%). About 16% of women using permanent contraception reported it was not their preferred method. Having the lowest socioeconomic status (versus highest) (prevalence ratio [PR]: 1.47, 95% CI: 1.11-1.96), Hispanic ethnicity (versus non-Hispanic white) (PR: 1.83, 95% CI: 1.15-2.90), reporting poor provider satisfaction related to contraceptive care (PR: 2.33, 95% CI: 1.02-5.29), and not having a yearly women's checkup (PR: 1.31, 95% CI: 1.01-1.68) were significantly associated with nonuse of preferred method. Compared to preferred-method nonusers, higher proportions of preferred-method users reported consistent contraceptive use (89% vs. 73%, p < 0.001) and intent to continue use (79% vs. 58%, p < 0.001). CONCLUSIONS: Affordability and poor provider satisfaction related to contraceptive care were associated with nonuse of preferred contraceptive method. Those using their preferred method reported more consistent use. IMPLICATIONS: Cost is an important barrier for women in obtaining their preferred contraceptive methods. Low quality birth control care may also be a barrier to preferred-method use. Removal of cost barriers and improvement in contraceptive counseling strategies may increase access to preferred contraceptive methods.