Critical decisions: A mixed-methods study of decision-making among diverse gynecologic cancer patients considering therapeutic clinical trial enrollment.

OBJECTIVE: Participation in therapeutic clinical trials does not reflect the diversity of gynecologic cancer patients, limiting access to novel therapeutics and generalizability of results. Reasons for inequities in participation among historically underrepresented populations remain undertheorized, as studies have shown equal willingness to participate among groups. We sought to apply a precarity framework to conceptualize the factors that impact patients' desire to enroll, to improve equity in gynecologic oncology clinical trial participation. METHODS: Gynecologic cancer patients at a single tertiary care facility in the Southwestern United States who discussed participation in therapeutic clinical trial with their oncology provider from 2020 to 2021 were identified. Enrolled participants completed surveys and qualitative interviews regarding treatment experiences and decision-making. Oncology providers completed parallel surveys at the time of their patient's enrollment. Descriptive statistics and thematic coding were used to analyze data. RESULTS: 30 patients were enrolled and participated in surveys and interviews. No differences were found in quantitative data assessing shared decision-making and patient-centered communication between those who enrolled and those who did not. Qualitative data demonstrated that patients who declined trial enrollment expressed concerns regarding uncertainty and loss of control, independence in decision-making, and significant resource challenges and financial toxicity of cancer treatment. CONCLUSIONS: We identified a constellation of factors that contribute to desire to enroll in clinical trials, that we describe using the framework of precarity. Through identification of precarious patients and mitigation of burdens, we anticipate improved enrollment and retention in therapeutic clinical trials among diverse gynecologic oncology patients.

Exploring the role of cancer fatalism and engagement with skin cancer genetic information in diverse primary care patients.

OBJECTIVE: To broaden the currently limited reach of genomic innovations, research is needed to understand how psychosocial and cultural factors influence reactions to genetic testing in diverse subgroups. Cancer fatalism is important in cancer prevention and deserves theoretical and empirical attention in the context of genomics and behavior change. METHODS: The current study employed data from a randomized controlled trial (N = 593) offering skin cancer genetic testing (using the melanocortin-1 receptor [MC1R] gene) in primary care in Albuquerque, New Mexico, USA. We examined interrelations of cancer fatalism with demographics, general health beliefs, perceived risk, perceived control, sun protection and skin screening behaviors and cancer worry in the skin cancer context stratified across Hispanic versus non-Hispanic ethnicity, and examined cancer fatalism as a moderator of intervention effects on study primary outcomes, including 3-month sun protection, cancer worry and perceived risk. RESULTS: Cancer fatalism was significantly related to the perception of control over skin cancer risk behaviors (ps ≤ 0.01) and demographics (ethnicity, education, health literacy; ps < 0.05), but not consistently related to general health beliefs or risk perception. Cancer fatalism did not moderate intervention effects on primary outcomes, except those with higher cancer fatalism randomized to intervention had higher levels of 3-month cancer worry (p = 0.019). CONCLUSIONS: These findings will guide future work considering the role of cancer fatalism in use of genomic technologies in the general population. This work anticipates strategies required to address cancer fatalism as translational genomics becomes more commonly available to diverse general population subgroups.

Evaluating a web-based training curriculum for disseminating best practices for the care of newborns with neonatal opioid withdrawal syndrome in a rural hospital, the NOWS-NM Program.

BACKGROUND: The incidence of neonatal opiate withdrawal syndrome (NOWS) in the US has grown dramatically over the past two decades. Many rural hospitals not equipped to manage these patients transfer them to hospitals in bigger cities. METHODS: We created a curriculum, the NOWS-NM Program, a web-based curriculum training in best practices. To evaluate the curriculum, we conducted pre- and post-surveys of NOWS knowledge, attitudes, and care practices, plus post-curriculum interviews and focus groups. RESULTS: Fourteen participants completed both pre- and post-curriculum surveys. They indicated an increase in knowledge and care practices. A small number of respondents expressed negative attitudes about parents of infants with NOWS at pre-test, the training curriculum appeared to have no impact on such attitudes at post-test. Sixteen participants participated in focus groups or interviews. Qualitative data reinforced the positive quantitative results and contradicted the negative survey results, respondents reported that the program did reduce stigma and improve provider/staff interactions with patients. CONCLUSIONS: This curriculum demonstrated positive impacts on NOWS knowledge and care practices. Incorporating focus on core concepts of trauma-informed care and self-regulation in future iterations of the curriculum may strengthen the opportunity to change attitudes and address the needs expressed by participants and improve care of families and babies with NOWS.

Implementation of pharmacy access to hormonal contraception.

BACKGROUND: States throughout the country are enacting legislation to authorize pharmacist prescribing of hormonal contraception to decrease barriers to access. Little is known about the process of state implementation of pharmacist prescriptive authority for hormonal contraception. OBJECTIVES: To understand the state-level steps to enable pharmacist prescribing of hormonal contraception, including implementation challenges and facilitators. METHODS: We conducted a qualitative study of interviews with 18 key individuals, including pharmacists and other stakeholders, from ten states with laws permitting pharmacist-prescribed hormonal contraception from March 2021 to April 2022. We analyzed data using directed qualitative analysis principles and compared experiences across states. We organized the data using the Consolidated Framework for Implementation Research framework and evaluated relevant constructs in states' implementation efforts. RESULTS: Participants identified four key steps to implement pharmacist prescribing at the state level, including development of state rules and regulations, educational programs, reimbursement mechanisms, and expansion strategies to pharmacists and pharmacies. Participants identified early involvement of key stakeholders and a culture of support for clinical pharmacists as facilitators to implementation. Challenges included complexity and cost of billing mechanisms, lack of funding for implementation efforts, and competing priorities of pharmacies/pharmacists. CONCLUSION: Participants in states with pharmacist prescriptive authority for hormonal contraception identified development of reimbursement and billing mechanisms as the most critical state-level step in implementation. Focusing on facilitators of key steps can guide states in developing successful implementation strategies to improve contraceptive access.

A culturally informed model to enhance breast, cervical, and colorectal cancer screenings: perspectives of American Indian adults and healthcare providers in rural New Mexico.

PURPOSE: American Indian/Alaska Native (AI/AN) populations have some of the lowest cancer screening rates compared to other racial/ethnic populations. Using community-based participatory research methods, we sought to characterize knowledge, attitudes, beliefs, and approaches to enhance breast, colorectal, and cervical cancer screening. METHODS: We conducted 12 focus groups between October 2018 and September 2019 with 96 eligible AI adults and healthcare providers, recruited using non-probability purposive sampling methods from the Zuni Pueblo in rural New Mexico. We used the Multi-level Health Outcomes Framework (MHOF) to conduct a qualitative content analysis identifying mutable systems- and individual- level constructs important for behavior change that we crosslinked with the Community Preventive Services Task Force (CPSTF) recommended evidence-based interventions (EBIs) or approaches. RESULTS: Salient systems-level factors that limited uptake of cancer screenings included inflexible clinic hours, transportation barriers, no on-demand service and reminder systems, and brief doctor-patient encounters. Individual-level barriers included variable cancer-specific knowledge that translated into fatalistic beliefs, fear, and denial. Interventions to enhance community demand and access for screening should include one-on-one and group education, small media, mailed screening tests, and home visitations by public health nurses. Interventions to enhance provider delivery of screening services should include translation and case management services. CONCLUSIONS: The MHOF constructs crosslinked with CPSTF recommended EBIs or approaches provided a unique perspective to frame barriers and promoters of screening utilization and insights for intervention development. Findings inform the development of culturally tailored, theoretically informed, multi-component interventions concordant with CPSTF recommended EBIs or approaches aimed at improving cancer screening.

Association of MOUD ECHO Participation on Expansion of Buprenorphine Prescribing in Rural Primary Care.

BACKGROUND: Lack of access to buprenorphine to treat Opioid Use Disorder is profound in rural areas where over half of small and remote rural counties have no buprenorphine prescriber. To increase prescribing, an online, Medication of Opioid Use Disorder (MOUD) Extensions for Community Healthcare Outcomes (ECHO) was developed that addressed known barriers to the startup and expansion of treatment. The objective of the present study was to determine the relationship between participating in MOUD ECHO sessions and prescribing of buprenorphine for OUD in rural primary care. METHODS: Using non-random, rolling-recruitment from Feb 2018 to October of 2021, all rural primary care clinics in New Mexico were contacted via phone call and fax to recruit providers (Physicians, Nurse Practitioners, and Physician Assistants) who had no or limited buprenorphine experience to enroll in this study. Participation in the MOUD ECHO was tracked across the 12 week series. Start-up and expansion of buprenorphine treatment was measured every 3 months for up to 2 years using 5 implementation benchmarks spanning training completion, obtaining licensure, prescribing and adding patients. Using a dose-response intention to treat type analysis, associations between number of sessions and benchmark achievement were analyzed using logistic regression. RESULTS: Eighty providers were enrolled, mostly female (66%) white (82%), non-Hispanic (82%), and mostly nurse practitioners (51%) or MDs (38%). Achievement of prescribing benchmarks at 6 months was significantly increased by attendance at MOUD ECHO sessions including obtaining training and licensure Odds Ratio (OR = 1.24; P = .001); starting to prescribe (OR = 1.31; P = .004), and adding patients (OR = 1.14; P = .025). CONCLUSIONS: This study provides compelling evidence that MOUD ECHO participation may significantly increase the number of providers implementing this treatment and adding patients onto their panels. The dose-response approach helps address current gaps in ECHO research that call for more rigorous examination of the ECHO model's impact on provider practice improvements.

Patient, provider, and nurse preferences of patient reported outcomes (PRO) and side effect management during cancer treatment of underrepresented racial and ethnic minority groups, rural and economically disadvantaged patients: a mixed methods study.

PURPOSE: The purpose of this study was to evaluate patient, oncologist and nurse perspectives on side effects and patient reported outcomes (PROs) with the question of how to optimize side effect management and PRO tools in this unique population. METHODS: This pilot study utilized a mixed method explanatory design. Patients receiving intravenous (IV) chemotherapy from June to August 2020 were surveyed about side effect burden and PRO system preferences. Providers and nurses (PN) completed complementary surveys. Semi-structured phone interviews were conducted among a subset of each group. RESULTS: Of 90 patient surveys collected; 51.1% minority, 35.6% rural, and 40.0% income < $30,000, 48% felt side effect management was a significant issue. All patients reported access to a communication device but 12.2% did not own a cell phone; 68% smart phone, 20% cell phone, 22% landline, 53% computer, and 39% tablet. Patients preferred a response to reported side effects within 0-3 h (73%) while only 29% of the 55 PN surveyed did (p < 0.0001). Interviews reinforced that side effect burden was a significant issue, the varied communication devices, and a PRO system could improve side effect management. CONCLUSION: In a non-White, rural and low-income patient population, 87.8% of patients reported owning a cell phone. Although all agreed side effect management was a prominent issue, expectations between patients and PN differed substantially. Qualitative data echoed the above and providing concrete suggestions to inform development of a PRO program and side effect mitigation strategies among a diverse patient population.

Ethnicity, socioeconomic status, income inequality, and colorectal cancer outcomes: evidence from the 4C2 collaboration.

PURPOSE: National Cancer Institute (NCI)-Designated Cancer Centers are required to assess and address the needs of their catchments. In rural regions, catchment areas are vast, populations small, and infrastructure for data capture limited, making analyses of cancer patterns challenging. METHODS: The four NCI-Designated Comprehensive Cancer Centers in the southern Rocky Mountain region formed the Four Corners Collaboration (4C2) to address these challenges. Colorectal cancer (CRC) was identified as a disease site where disparities exist. The 4C2 leaders examined how geographic and sociodemographic characteristics were correlated to stage at diagnosis and survival in the region and compared those relationships to a sample from the surveillance, epidemiology, and end results (SEER) program. RESULTS: In 4C2, Hispanics were more likely to live in socioeconomically disadvantaged areas relative to their counterparts in the SEER program. These residency patterns were positively correlated with later stage diagnosis and higher mortality. Living in an area with high-income inequality was positively associated with mortality for Non-Hispanic whites in 4C2. In SEER, Hispanics had a slightly higher likelihood of distant stage disease, and disadvantaged socioeconomic status was associated with poor survival. CONCLUSION: CRC interventions in 4C2 will target socioeconomically disadvantaged areas, especially those with higher income inequality, to improve outcomes among Hispanics and Non-Hispanic whites. The collaboration demonstrates how bringing NCI-Designated Cancer Centers together to identify and address common population catchment issues provides opportunity for pooled analyses of small, but important populations, and thus, capitalize on synergies among researchers to reduce cancer disparities.

Assessing Knowledge and Perceptions About Cancer Among American Indians of the Zuni Pueblo, NM.

American Indians (AIs) in New Mexico have lower cancer screening rates compared to other populations and are more likely to be diagnosed with cancer at an advanced stage of the disease as reported by Li et al. (Archives of Internal Medicine 163(1):49-56, 2003). AIs also have the lowest 5-year cancer survival rates compared to any ethnic/racial group in the USA as reported by Clegg et al. (Arch Intern Med 162:1985-1993, 2002) and Edwards et al. (Cancer 97:1407-1427, 2005). Numerous barriers such as cultural beliefs, fear, fatalism, mistrust, stigma, and lack of culturally appropriate interventions could contribute to low cancer screening rates as reported by Daley et al. (J Health Dispar Res Pract 5(2), 2012); Filippi et al. (J Prim Care Community Health 4(3):160-166, 2013); James et al. (Prev Chronic Dis 10:E170, 2013); and Schumacher et al. (Cancer Causes Control 19(7):725-737, 2008). Trained Community Health Representatives (CHRs) from the Zuni Pueblo and native Zuni undergraduate students led six 1-h focus group sessions using a structured focus group guide with probes. The focus groups were conducted among 51 participants from different age groups (20-29 years, n = 19; 30-49 years, n = 17; and 50 years and older, n = 15) stratified by sex. Focus groups were conducted in both English and Shiwi (Zuni) languages. Sessions were audio recorded, and team members took notes. CHRs transcribed the notes and audio recordings, and created a codebook for qualitative data analysis. In the focus groups, participants provided Zuni-specific cultural context, opinion, and experience regarding (1) general knowledge about cancer, (2) cancer risk, (3) cancer risk reduction, (4) personal experiences with cancer, and (5) culturally competent delivery of cancer information and resources. Understanding the perceptions of cancer within the Zuni Pueblo is an essential component in the development of interventional/preventative measures and improvement of current care. Ultimately, this information will provide a basis for the next steps in culturally sensitive cancer care for the Zuni Pueblo.

A sequential explanatory study of the employment experiences of population-based breast, colorectal, and prostate cancer survivors.

PURPOSE: Cancer treatment often leads to work disruptions including loss of income, resulting in long-term financial instability for cancer survivors and their informal caregivers. METHODS: In this sequential explanatory study, we conducted a cross-sectional survey of employment experiences among ethnically diverse, working-age individuals diagnosed with breast, colorectal, or prostate cancer. Following the survey, we conducted semi-structured interviews with cancer survivors and informal caregivers to explore changes in employment status and coping techniques to manage these changes. RESULTS: Among employed survivors (n = 333), cancer caused numerous work disruptions including issues with physical tasks (53.8%), mental tasks (46.5%) and productivity (76.0%) in the workplace. Prostate cancer survivors reported fewer work disruptions than female breast and male and female colorectal cancer survivors. Paid time off and flexible work schedules were work accommodations reported by 52.6% and 36.3% of survivors, respectively. In an adjusted regression analysis, household income was positively associated with having received a work accommodation. From the qualitative component of the study (survivors n = 17; caregivers n = 11), three key themes emerged: work disruptions, work accommodations, and coping mechanisms to address the disruptions. Survivors and caregivers shared concerns about lack of support at work and resources to navigate issues caused by changes in employment. CONCLUSIONS: This study characterized employment changes among a diverse group of cancer survivors. Work accommodations were identified as a specific unmet need, particularly among low-income cancer survivors. Addressing changes in employment among specific groups of cancer survivors and caregivers is critical to mitigate potential long-term consequences of cancer.

Developing a survivorship care plan (SCP) delivery process for patients and primary care providers serving poor, rural, and minority patients with cancer.

BACKGROUND: Survivorship care plans (SCPs) summarize patients' treatment and act as an education and communication tool between oncologists and primary care providers (PCPs). But creation and delivery of SCPs are challenging, labor intensive, and costly. The University of New Mexico Comprehensive Cancer Center (UNM CCC) treats a poor, rural, and minority patient population, and our purpose was to implement and evaluate a process to create and deliver SCPs to patients and PCPs. METHODS: Providers placed an electronic SCP order, basic information was imported, and staff compiled treatment details. Flagged SCPs were then ready for delivery, providers approved of and delivered the SCP at the next encounter, and the SCP was sent to the PCP. RESULTS: By April 2020, 283 SCPs were ordered, 241 (85.2%) were created by the designated staff, and 97 (34.2%) were given to patients after definitive therapy for breast cancer (59.1%), gynecological cancers (10.8%), prostate cancer (7.4%), colorectal cancer (5.1%), and lymphomas (4.8%). Of 97 SCPs eligible to be sent to PCPs, 75 (77.3%) were mailed or sent via EMR. Of the 41 (48.9%) SCPs sent via mail or fax, only 8 (8.3%) were received and 5 (5.2%) integrated. CONCLUSIONS: This study shows that SCPs can be delivered to patients in a poor, rural, and minority patient population but that PCP receipt and integration of SCPs are poor. Future efforts need to ensure that an oncologist to PCP education and communication tool is able reach and be integrated by PCPs.

"Let's Talk about Skin Cancer": Examining Association between Family Communication about Skin Cancer, Perceived Risk, and Sun Protection Behaviors.

Family communication about skin cancer risk may motivate protective behaviors. However, it is unclear how widespread such communication might be. In this study, we describe prevalence and patterns (across environmental, personal, and behavioral factors) of family communication about skin cancer across N = 600 diverse (79% female, 48% Hispanic, 44% non-Hispanic White) primary care patients from Albuquerque, New Mexico, a geographical location with year-round sun exposure. Over half reported discussing general cancer (77%) and skin cancer risks (66%) with their families. The most frequent target of skin cancer risk communication included doctors (54%), followed by friends/coworkers (49%), spouse/partner (43%), other family members (38%), sisters (36%), mothers (36%), daughters (33%), sons (32%), father (24%), and brothers (22%). On average, participants reported having talked to three family members about skin cancer risks. The most frequently discussed content of skin cancer risk communication was the use of sun protection (89%), followed by the personal risk of skin cancer (68%), who had skin cancer in the family (60%), family risk of skin cancer (59%), time of sun exposure (57%), and skin cancer screening (57%). A family or personal history of cancer, higher perceived risk, higher health literacy, being non-Hispanic, having higher education or income, and proactive sun protective behavior were associated with greater family communication about general cancer and skin cancer risks. These study findings have implications for interventions that encourage discussions about skin cancer risk, sun protection, and skin cancer screening that lead to adoption of sun-safe behaviors.

Feasibility and acceptability of an online ECHO intervention to expand access to medications for treatment of opioid use disorder, psychosocial treatments and supports.

Background: Buprenorphine combined with psychosocial support is the standard of care for treatment of opioid use disorder (OUD) in office-based primary care settings. However, uptake of this treatment has been slow due to a number of addressable barriers including providers' lack of training, staffing concerns, stigma and the need for ongoing support and consultation. This study examined acceptability and feasibility of an online Extensions for Community Healthcare Outcomes (ECHO) model intervention developed to support rural primary care clinics to expand treatment and is part of a larger study tracking the impact of participation in this ECHO on expansion of MOUD in rural primary care. Methods: We developed a comprehensive, 12-week online education and mentorship intervention using ECHO aimed at supporting the entire primary care clinic to start or expand treatment using MOUD, psychosocial treatments and recovery supports. We tracked participation and collected feedback using qualitative interviews and post-session questionnaires. Results: Sixty-seven primary care staff across 27 rural clinics in New Mexico participated in the study including 32 prescribers and 35 clinic support staff. Average participation was 4/12 sessions. Post-session questionnaires showed positive feedback, including that 95% or more respondents agreed or strongly agreed that the sessions were relevant and improved their confidence. Qualitative interview themes included strong endorsement of the ECHO curriculum. Clinical duties were the most common barrier to attending sessions. Conclusions: Engagement of 27 clinics, the range of staff and providers who participated, and positive feedback gathered through survey and qualitative interviews provide evidence of feasibility and acceptability of MOUD ECHO to support expansion of this treatment. However, barriers to participation present an important threat to feasibility. Understanding feasibility and acceptability is an important component of research on the impact of ECHO to expand MOUD treatment.

The who, the what, and the how: A description of strategies and lessons learned to expand access to medications for opioid use disorder in rural America.

Access to treatment for opioid use disorder (OUD) in rural areas within the United States remains a challenge. Providers must complete 8-24 h of training to obtain the Drug Addiction Treatment Act (DATA) 2000 waiver to have the legal authority to prescribe buprenorphine for OUD. Over the last 4 years, we executed five dissemination and implementation grants funded by the Agency for Healthcare Research and Quality to study and address barriers to providing Medications for Opioid Use Disorder Treatment (MOUD), including psychosocial supports, in rural primary care practices in different states. We found that obtaining the DATA 2000 waiver is just one component of meaningful treatment using MOUD, and that the waiver provides a one-time benchmark that often does not address other significant barriers that providers face daily. In this commentary, we summarize our initiatives and the common lessons learned across our grants and offer recommendations on how primary care providers can be better supported to expand access to MOUD in rural America.

Barriers to and recommendations for take-home naloxone distribution: perspectives from opioid treatment programs in New Mexico.

BACKGROUND: Naloxone is a safe and effective medication to help reverse opioid overdose. Providing take-home naloxone to patients in opioid treatment settings is a critical step to reducing opioid overdose deaths. In New Mexico, a US state with one of the highest rates of opioid overdose deaths, legislation was passed in 2017 (House Bill 370) to support take-home naloxone, and followed by naloxone training of Opioid Treatment Program staff to increase distribution. METHODS: Naloxone training was offered to all New Mexico Opioid Treatment Programs along with a baseline survey to assess current practices and barriers to take-home naloxone distribution. Focus groups were conducted approximately 1 year post-training with staff at a subset of the trained Opioid Treatment Programs to assess the impact of the legislation and training provided. RESULTS: Baseline survey results show most Opioid Treatment Program staff were unfamiliar with House Bill 370, reported conflicting understandings of their agency's current take-home naloxone practices, and reported a number of barriers at the patient, agency, and policy level. Follow-up focus groups revealed support for House Bill 370 but persistent barriers to its implementation at the patient, agency, and policy level including patient receptivity, cost of naloxone, staff time, and prohibitive pharmacy board regulations. CONCLUSIONS: In spite of targeted legislation and training, provision of take-home naloxone at remained low. This is alarming given the need for this lifesaving medication among the Opioid Treatment Program patient population, and high opioid death rate in New Mexico. Locally, important next steps include clarifying regulatory guidelines and supporting policy/billing changes to offset costs to Opioid Treatment Programs. Globally, additional research is needed to identify the prevalence of take-home naloxone distribution in similar settings, common barriers, and best practices that can be shared to increase access to this vital lifesaving medication in this critical context.

Perspectives on prescribing hormonal contraception among rural New Mexican pharmacists.

OBJECTIVES: New Mexico is a large rural state with high rates of unintended pregnancy and limited access to contraception. In 2017, the New Mexico Pharmacist Prescriptive Authority Act was amended to allow pharmacists to prescribe hormonal contraception. We explored pharmacist perspectives on prescribing hormonal contraceptives, including perceived barriers and facilitators to implementation in rural New Mexico and opinions on over-the-counter (OTC) access, and prescribing and inserting subdermal contraceptive implants. METHODS: This qualitative study recruited rural pharmacists using contact information from the New Mexico Board of Pharmacy and at a state-level pharmacist conference. We conducted semistructured telephone interviews with pharmacists focusing on benefits and concerns about prescribing hormonal contraception, resources required, perspectives on OTC access, and interest in prescribing and placing contraceptive implants. Deidentified transcribed interviews were analyzed by 2 independent coders for emerging themes. RESULTS: From November 2017 to January 2018, we recruited 25 rural pharmacists and conducted 21 interviews. The majority of participants were male (71%), aged over 60 years (43%), and in practice for over 20 years (52%). Interviewees were mostly positive about prescribing hormonal contraception citing community benefits. The top 3 perceived barriers were training needs, reimbursement, and liability. The top 3 facilitators were the availability of private areas within pharmacies, pharmacists' role as knowledgeable health care team members, and pharmacist accessibility without appointments. Most pharmacists did not support OTC access to hormonal contraception, and over half were interested in certification to prescribe and place subdermal contraceptive implants. CONCLUSION: New Mexico pharmacists identified community benefits of pharmacy access to hormonal contraception and were interested in training. Several barriers must be addressed to realize the potential of this practice expansion.

Personal Outcomes in Community-based Participatory Research Partnerships: A Cross-site Mixed Methods Study.

Community-based participatory research (CBPR) has been embraced by diverse populations to address health inequities within their communities. CBPR has been shown to produce favorable health outcomes, but little is known about personal outcomes (e.g., individual growth and capacities) resulting from the direct involvement in a CBPR partnership. We empirically examine which CBPR partnerships' processes and practices are associated with personal outcomes. We hypothesize that higher levels of collaborative approaches and adherence to CBPR principles and practices would be associated with personal outcomes. Based on a national cross-site CBPR study, Research for Improved Health, we utilized mixed-method data from a comprehensive community-engagement survey (N = 450) and seven in-depth case studies to explore the hypothesized relationships. Our multivariate mixed-effects model revealed the importance of various partnering practices. Relationship dynamics emerged as key predictors including the following: respect in the partnership, voice and influence in decision-making among partners, and stewardship. Qualitative findings highlighted individual, partnership, and community-level impacts, within and beyond the partnership. Our findings have implications for CBPR best practices and highlight the potential role of personal outcomes for partnerships' sustainability, long-term outcomes, and health equity research.

Gaining the patient perspective on pelvic floor disorders' surgical adverse events.

BACKGROUND: The Institute for Healthcare Improvement defines an adverse event as an unintended physical injury resulting from or contributed to by medical care that requires additional monitoring, treatment, or hospitalization or that results in death. The majority of research has focused on adverse events from the provider's perspective. OBJECTIVE: The objective of this qualitative study was to describe patient perceptions on adverse events following surgery for pelvic floor disorders. STUDY DESIGN: Women representing the following 3 separate surgical populations participated in focus groups: (1) preoperative (women <12 weeks prior to surgery); (2) short-term postoperative (women up to 12 weeks after surgery); and (3) long-term postoperative (women 1-5 years after surgery). Deidentified transcripts of audio recordings were coded and analyzed with NVivo 10 software to identify themes, concepts, and adverse events. Women were asked to rank patient-identified and surgeon-identified adverse events in order of perceived severity. RESULTS: Eighty-one women participated in 12 focus groups. Group demographics were similar between groups, and all groups shared similar perspectives regarding surgical expectations. Women commonly reported an unclear understanding of their surgery and categorized adverse events such as incontinence, constipation, nocturia, and lack of improvement in sexual function as very severe, ranking these comparably with intensive care unit admissions or other major surgical complications. Women also expressed a sense of personal failure and shame if symptoms recurred. CONCLUSION: Women consider functional outcomes such as incontinence, sexual dysfunction, and recurrence of symptoms as severe adverse events and rate them as similar in severity to intensive care unit admissions and death.

A longitudinal qualitative evaluation of patient perspectives of adverse events after pelvic reconstructive surgery.

INTRODUCTION AND HYPOTHESIS: Patient perception of adverse events (AEs) after pelvic floor disorder surgery is incompletely understood and may differ from providers' views of AEs. Our objective is to describe patient perceptions of AEs related to pelvic floor disorder surgery and how perceptions change over time. METHODS: Mixed-method study of longitudinal patient interviews and surveys. Women planning pelvic floor disorder surgery completed three one-on-one interviews: preoperatively (< 12 weeks before surgery), 6-8 weeks postoperatively, and 6 months postoperatively. Interviews explored the patient experience of surgery and their perception of AEs over time. Participants ranked self-identified AEs by severity. De-identified transcripts of audio recordings were coded and analyzed using an iterative, thematic, team-based process using NVivo software (QSR International). RESULTS: Twenty women each completed three separate interviews for a total of 60 interviews. Their mean age was 55.3 (± 12.7) years, and 50% were Non-Hispanic white. Women's perceptions of AEs changed as more time passed from surgery. Women identified potential problems related to surgery such as anesthesia complications, pain, injury, catheter issues, and an unsuccessful surgery as the most concerning AEs preoperatively. Postoperatively (6-8 weeks), women expressed concern about functional outcomes (e.g., performing daily activities, symptom reduction). Late postoperatively (6 months), the majority identified unsuccessful surgery, incontinence, and sexual dysfunction as severe AEs. These findings are consistent with prior work that suggests women perceive functional outcomes as fundamental to their recovery. CONCLUSIONS: These findings contribute to a more nuanced understanding of patient-centered perspectives on AEs. Patients view poor functional outcomes as severe AEs.

Racial/Gender Biases in Student Clinical Decision-Making: a Mixed-Method Study of Medical School Attributes Associated with Lower Incidence of Biases.

BACKGROUND: Accumulating evidence suggests that clinician racial/gender decision-making biases in some instances contribute to health disparities. Previous work has produced evidence of such biases in medical students. OBJECTIVE: To identify contextual attributes in medical schools associated on average with low levels of racial/gender clinical decision-making biases. DESIGN: A mixed-method design using comparison case studies of 15 medical schools selected based on results of a previous survey of student decision-making bias: 7 schools whose students collectively had, and 8 schools whose students had not shown evidence of such biases. PARTICIPANTS: Purposively sampled faculty, staff, underrepresented minority medical students, and clinical-level medical students at each school. MAIN MEASURES: Quantitative descriptive data and qualitative interview and focus group data assessing 32 school attributes theorized in the literature to be associated with formation of decision-making and biases. We used a mixed-method analytic design with standard qualitative analysis and fuzzy set qualitative comparative analysis. KEY RESULTS: Across the 15 schools, a total of 104 faculty, administrators and staff and 21 students participated in individual interviews, and 196 students participated in 29 focus groups. While no single attribute or group of attributes distinguished the two clusters of schools, analysis showed some contextual attributes were seen more commonly in schools whose students had not demonstrated biases: longitudinal reflective small group sessions; non-accusatory approach to training in diversity; longitudinal, integrated diversity curriculum; admissions priorities and action steps toward a diverse student body; and school service orientation to the community. CONCLUSIONS: We identified several potentially modifiable elements of the training environment that are more common in schools whose students do not show evidence of racial and gender biases.