Identifying metrics of success for transitional care practices in childhood cancer survivorship: a qualitative interview study of survivors.

BACKGROUND: Adolescent and young adult (AYA) childhood cancer survivors (CCS) should be empowered to continue their survivor-focused care as they transition into adult medicine. However, the majority of AYA-aged survivors become lost to follow up around the age of typical transition to adulthood. The purpose of this study was to identify, from the patient's perspective, key factors that facilitate successful transitions to adult-centered survivorship care. METHODS: A qualitative study was conducted with AYA CCS (n = 29) from the survivorship clinic of a single institution as key informants. Data were collected through a series of structured phone interviews and subjected to thematic content analysis. RESULTS: Four major themes with multiple subthemes were identified: (1) transition practices need to be flexible and individually tailored; (2) effective communication is critical to a successful transition; (3) continuity in providers is needed during the transition; and (4) comprehensive care means care that also addresses psycho-social well-being. CONCLUSIONS: From the perspective of AYA CCS, the ideal model of transitional survivorship care could include a patient navigator who promotes provider flexibility, consistent communication, and pro-active comprehensive care that encompasses both medical and psycho-social well-being. Models of care for CCS should be built to provide, or seamlessly facilitate, continuous survivor-focused care across the age continuum. A longitudinal relationship with a survivor-focused provider can help promote the values that CCS' report as important in transitioning care from pediatric- to adult-centered care.

Effect of an Electronic Health Record Decision Support Alert to Decrease Excess Cervical Cancer Screening.

OBJECTIVE: Cervical cancer screening is often conducted in excess of current screening guidelines. The objective of this study was to evaluate the effect of an electronic health record (EHR) clinical decision support alert to decrease guideline-nonadherent cervical cancer screening beyond the age limits of screening or posthysterectomy. MATERIALS AND METHODS: The proportion of guideline-nonadherent Pap tests in women younger than 21 years or older than 65 years or posthysterectomy were compared 4 months before and 3 months after implementation of an EHR clinical decision support alert warning providers that a Pap test is not indicated. Providers could cancel the Pap test or override the alert and place the order. Provider characteristics and Pap test indications were summarized by preintervention/postintervention period using descriptive statistics. The proportions of nonindicated Pap tests were compared by intervention period and provider characteristics using generalized estimating equation models. RESULTS: In women beyond the screening age limits or posthysterectomy, a total of 388 Pap tests were ordered before intervention, and 313 tests were ordered after intervention. Proportion of guideline-nonadherent tests was similar before (62%) and after intervention (63%); thus, implementation of the clinical decision support alert did not change the proportion of guideline-nonadherent Pap tests ordered (OR = 1.08, 95% CI = 0.77-1.52). It is notable that 52% of guideline-nonadherent tests were ordered by 11 providers. Even when controlling for providers who ordered more than 1 test during the study period, multivariate analysis showed that male providers were more likely to order guideline-nonadherent Pap tests (OR = 2.30, 95% CI = 1.36-3.89); no other differences by provider characteristics were observed. CONCLUSIONS: An EHR clinical decision support alert does not decrease guideline-nonadherent cervical cancer screening. These data suggest efforts to optimize clinical decision support should be focused on other aspects of cervical cancer prevention.

Gendered Expectations: Do They Contribute to High Burnout Among Female Physicians?

Patients have differing expectations of female versus male physicians. Female patients tend to seek more empathic listening and longer visits, especially with female physicians; however, female doctors are not provided more time for this. Female doctors have more female patients than male doctors, and more patients with psychosocial complexity. We propose that gender differences in patient panels and gendered expectations of female physicians may contribute to the high rate of burnout among female clinicians, as well as to the many female physicians working part-time to reduce stress in their work lives. We propose several mechanisms for addressing this, including brief increments in visit time (20, 30 and 40 min), staff awareness, training in patient expectations during medical school, adjusting for patient gender in compensation plans, and co-locating behavioral medicine specialists in primary care settings. Beneficial outcomes could include fewer malpractice suits, greater patient satisfaction, higher quality care, and lower burnout among female physicians.

Integrating Community Health Workers Into Medical Homes.

PURPOSE: Though evidence supports the value of community health workers (CHWs) in chronic disease self-management support, and authorities have called for expanding their roles within patient-centered medical homes (PCMHs), few PCMHs in Minnesota have incorporated these health workers into their care teams. We undertook a qualitative study to (1) identify facilitators and barriers to utilizing a CHW model among PCMHs in Minnesota, and (2) define roles played by this workforce within the PCMH team. METHODS: We conducted 51 semistructured, key-informant interviews of clinic leaders, clinicians, care coordinators, CHWs, and staff from 9 clinics (5 with community health workers, 4 without). Qualitative analysis consisted of thematic coding aligned with interview topics. RESULTS: Four key conceptual themes emerged as facilitators and barriers to utilizing a CHW model: the presence of leaders with knowledge of CHWs who championed the model, a clinic culture that favored piloting innovation vs maintaining established care models, clinic prioritization of patients' nonmedical needs, and leadership perceptions of sustainability. These health care workers performed common and clinic-specific roles that included outreach, health education and coaching, community resource linkage, system navigation, and facilitating communication between clinician and patient. CONCLUSIONS: We identified facilitators and barriers to adopting CHW roles as part of PCMH care teams in Minnesota and documented their roles being played in these settings. Our findings can be used when considering strategies to enhance utilization and integration of this emerging workforce.

Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative study of survivorship providers.

BACKGROUND: Long-term survival in childhood cancer is excellent. Most survivors will have a therapy-related chronic condition, yet very few receive survivor-focused care as they transition from adolescence to young adulthood. The purpose of this study is to identify indicators of success in current transitional care practices for young adult survivors of childhood cancer as defined by all members of survivorship care teams. PROCEDURE: An exploratory, phenomenologic qualitative study was conducted with key informants from medical teams involved in transitional care of childhood cancer survivors. Data were collected through phone interviews with providers from both pediatric and adult care settings. RESULTS: A multidisciplinary study sample of 29 participants from three institutions identified two major themes with multiple subthemes. The first major theme was that providers must be good communicators, and it emphasized the importance of having good relationships throughout the transition of care to optimize effective communication. The second major theme was that models of care must include well-established partners throughout the healthcare system that promote accessible subspecialty care with streamlined referrals and patient navigation services. CONCLUSIONS: From the perspective of experienced pediatric- and adult-centered providers at three different institutions delivering life-long transitional care for childhood cancer survivors, the optimal model of care must be built around facilitating communication among all key stakeholders and emphasizing patient-friendly services that minimize patient stressors.

Experiences with VHA care: a qualitative study of U.S. women veterans with self-reported trauma histories.

BACKGROUND: Women veterans in the United States, particularly those with posttraumatic stress disorder (PTSD) or a history of military sexual assault, have unique health care needs, but their minority status in the US Veterans Health Administration (VHA) has led to documented healthcare disparities when compared to men. This study's objective was to obtain a richer understanding of the challenges and successes encountered by women veterans with self-reported service-related trauma histories (particularly those with a history of military sexual assault and/or posttraumatic stress symptomology) receiving VHA care. METHODS: Thirty-seven female Vietnam and post-Vietnam (1975-1998) era veterans were randomly selected from a cohort of PTSD disability benefit applicants to complete semi-structured interviews in 2011-2012. Grounded-theory informed procedures were used to identify interview themes; differences between veterans with and without a history of military sexual assault were examined through constant comparison. RESULTS: At the time of the interviews, many women believed that VHA was falling short of meeting women veterans' needs (e.g., lack of women-only mental health programming). Also common, but particularly among those with a military sexual assault history, was the perception that VHA's environment was unwelcoming; being "surrounded by men" yielded emotions ranging from discomfort and mistrust to severe anxiety. A few veterans reported recent positive changes and offered additional suggestions for improvement. CONCLUSIONS: Findings suggest that while at the time of the interviews gains had been made in the delivery of gender-sensitive outpatient medical care, women veterans with a history of military sexual assault and/or posttraumatic stress symptomology perceived that they were not receiving the same quality of care as male veterans.

Persistent Serious Mental Illness Among Former Applicants for VA PTSD Disability Benefits and Long-Term Outcomes: Symptoms, Functioning, and Employment.

Millions of U.S. veterans have returned from military service with posttraumatic stress disorder (PTSD), for which a substantial number receive U.S. Department of Veterans Affairs (VA) disability benefits. Although PTSD is treatable, comorbid serious mental illness (defined here as schizophrenia, schizoaffective disorder, and bipolar spectrum disorders) could complicate these veterans' recovery. Using VA administrative data, we examined the burden of persistent serious mental illness in a nationally representative cohort of 1,067 men and 1,513 women who applied for VA PTSD disability benefits between 1994 and 1998 and served during or after the Vietnam conflict. Self-reported outcomes were restricted to the 713 men and 1,015 women who returned surveys at each of 3 collection points. More than 10.0% of men and 20.0% of women had persistent serious mental illness; of these, more than 80.0% also had persistent PTSD. On repeated measures modeling, those with persistent serious mental illness consistently reported more severe PTSD symptoms and poorer functioning in comparison to other participants (ps < .001); their employment rate did not exceed 21.0%. Interactions between persistent serious mental illness and PTSD were significant only for employment (p = .002). Persistent serious mental illness in this population was almost 2 to 19 times higher than in the general U.S. POPULATION: The implications of these findings are discussed.

"You have to go through it and have your children": reproductive experiences among women with vulvodynia.

BACKGROUND: Vulvodynia is a potentially debilitating chronic pain condition affecting the vulva (external genitalia) in women, with typical age of onset during the early-to mid-reproductive years. Yet, virtually nothing is known about the thoughts, feelings and experience of vulvodynia patients regarding conception, pregnancy and delivery; including the effect that a hallmark symptom, dyspareunia (painful sex), can have on a couple's physical and emotional ability to conceive. We sought to describe these experiences and beliefs among women with vulvodynia who were pregnant or who recently had delivered a child. METHODS: The study used in-depth, qualitative exploratory interview methods to gain a deeper understanding of these experiences for 18 women with vulvar pain who were recruited from an existing, nationally-sampled prospective pregnancy cohort study. RESULTS: Four major themes were reported by our participants. Women described their reaction to pain as volatile at first, and, over time, more self-controlled, regardless of medical treatment; once the volatility became more stable and overall severity lessened, many women began planning for pregnancy. Techniques described by women to cope with pain around pregnancy included pain minimization, planning pregnancy-safe treatment and timing intercourse around ovulation. Regardless of the degree to which interaction with health care providers before pregnancy were positive, most participants developed mistrustful attitudes toward future dealings with health care systems and providers. Nearly all women described anxiety regarding how pregnancy may change pain symptoms, yet described being hopeful. CONCLUSIONS: Women described strategies regarding reproduction such as finding a personally acceptable level of pain before planning pregnancy, and a resilience that allowed them to achieve their reproductive goals despite pain and perceived lack of assistance from healthcare providers. Therefore, future research should assess the benefits of increased psychosocial support from partners and professionals who may assist in improving resilience.

Do neighborhood attributes moderate the relationship between alcohol establishment density and crime?

Although numerous studies have found a positive association between the density of alcohol establishments and various types of crime, few have examined how neighborhood attributes (e.g., schools, parks) could moderate this association. We used data from Minneapolis, MN with neighborhood as the unit of analysis (n = 83). We examined eight types of crime (assault, rape, robbery, vandalism, nuisance crime, public alcohol consumption, driving while intoxicated, underage alcohol possession/consumption) and measured density as the total number of establishments per roadway mile. Neighborhood attributes assessed as potential moderators included non-alcohol businesses, schools, parks, religious institutions, neighborhood activism, neighborhood quality, and number of condemned houses. Using Bayesian techniques, we created a model for each crime outcome (accounting for spatial auto-correlation and controlling for relevant demographics) with an interaction term (moderator × density) to test each potential moderating effect. Few interaction terms were statistically significant. The presence of at least one college was the only neighborhood attribute that consistently moderated the density-crime association, with the presence of a college attenuating the association between the density and three types of crime (assaults, nuisance crime, and public consumption). However, caution should be used when interpreting the moderating effect of college presence because of the small number of colleges in our sample. The lack of moderating effects of neighborhood attributes, except for presence of a college, suggests that the addition of alcohol establishments to any neighborhood, regardless of its other attributes, could result in an increase in a wide range of crime.

"I connect with the ringleader:" health professionals' perspectives on promoting the sexual health of adolescent males.

In-depth interviews with nine professionals in adolescent health were used to identify perceived barriers, facilitators, and innovative strategies to reach, engage, and serve adolescent males for sexual and reproductive health care. Barriers included stigma, embarrassment, and lack of social norms around sexually transmitted infection (STI) testing for men. Facilitators included crisis situations and partner support. Clinic-based approaches to reach and engage young men included developing authentic staff-youth engagement and ensuring that access to services is easy and appealing. To be innovative, providers should become part of the real-world context of adolescent males. Technology (e.g., text messaging) and social media can be utilized to target and eliminate barriers to health care among young men.

Designing and operationalizing a customized internal evaluation model for cancer treatment support programs.

Be The Match® Patient and Health Professional Services (PHPS) supports patients undergoing hematopoietic cell transplant (HCT) and caregivers by providing educational programs and resources. HCT is a potentially curative therapy for blood cancers such as leukemia and lymphoma. To help meet the increasing demand for support services, PHPS implemented a multipronged plan to build and sustain the organization's capacity to conduct evaluation of its programs and resources. To do so, PHPS created and operationalized an internal evaluation model, developed customized resources to help stakeholders incorporate evaluation in program planning, and implemented utilization-focused evaluation for quality improvement. Formal mentorship was also critical in the development of an evidence-based, customized model and navigating inherent challenges throughout the process. Our model can serve as a guide for evaluators on establishing and operationalizing an internal evaluation program. Ultimately, we seek to improve support and education services from the time of diagnosis through survivorship.

The association between density of alcohol establishments and violent crime within urban neighborhoods.

BACKGROUND: Numerous studies have found that areas with higher alcohol establishment density are more likely to have higher violent crime rates, but many of these studies did not assess the differential effects of type of establishments or the effects on multiple categories of crime. In this study, we assess whether alcohol establishment density is associated with 4 categories of violent crime and whether the strength of the associations varies by type of violent crime and by on-premise establishments (e.g., bars, restaurants) versus off-premise establishments (e.g., liquor and convenience stores). METHODS: Data come from the city of Minneapolis, Minnesota in 2009 and were aggregated and analyzed at the neighborhood level. Across the 83 neighborhoods in Minneapolis, we examined 4 categories of violent crime: assault, rape, robbery, and total violent crime. We used a Bayesian hierarchical inference approach to model the data, accounting for spatial auto-correlation and controlling for relevant neighborhood demographics. Models were estimated for total alcohol establishment density as well as separately for on-premise establishments and off-premise establishments. RESULTS: Positive, statistically significant associations were observed for total alcohol establishment density and each of the violent crime outcomes. We estimate that a 3.9 to 4.3% increase across crime categories would result from a 20% increase in neighborhood establishment density. The associations between on-premise density and each of the individual violent crime outcomes were also all positive and significant and similar in strength as for total establishment density. The relationships between off-premise density and the crime outcomes were all positive but not significant for rape or total violent crime, and the strength of the associations was weaker than those for total and on-premise density. CONCLUSIONS: Results of this study, combined with earlier findings, provide more evidence that community leaders should be cautious about increasing the density of alcohol establishments within their neighborhoods.

Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative interview study of parents.

BACKGROUND: Survivor-focused care for adolescent and young adult (AYA) childhood cancer survivors (CCS) often involves their parents. Recognizing the importance of parents in the ongoing care of CCS, our study sought to identify key aspects of a successful transition for CCS from pediatric- to adult-centered care from the parent perspective. METHODS: We conducted qualitative interviews with 26 parents of CCS who were receiving care in the long-term follow-up (LTFU) clinic at a single institution. We used a semi-structured interview protocol with the parents and conducted a thematic content analysis. RESULTS: Using a constant comparison approach, data revealed three primary themes regarding parents' perspectives toward ensuring a seamless transition from pediatric- to adult-centered follow-up care: (1) the transition needs to include seamless communication between all involved parties, (2) survivors need to demonstrate sufficient health care self-efficacy in order to achieve a successful transition, and (3) the survivor-focused care should include support for survivors' overall well-being, including financial and health insurance literacy. CONCLUSIONS: For parents of AYA CCS, the optimal pediatric to adult care transition model should include mechanisms that facilitate communication between parents, CCS, and survivor-focused providers while also supporting self-efficacy and financial literacy as it relates to health insurance.

The Association Between NRMN STAR Grantsmanship Self-Efficacy and Grant Submission.

BACKGROUND: Eliminating the NIH funding gap among underrepresented minorities (URMs) remains a high priority for the National Institutes of Health. In 2014, the National Research Mentoring Network1 Steps Toward Academic Research (NRMN STAR) program recruited postdoctoral, early-stage and junior faculty to participate in a 12-month grant writing and professional development program. The expectation of the program was to increase the number of grant submissions and awards to URM researchers. Although receiving a grant award is the gold standard of NRMN STAR, instilling confidence for postdocs and early-stage faculty to submit an application is a critical first step. Based on our previous study, a sustained increase in trainee self-efficacy score over a 24-month period was observed after completing NRMN STAR. METHODS: The current study sought to determine the association between self-efficacy score and grant submissions among two cohorts of trainees. Grantsmanship Self-Efficacy was measured using a 19-item questionnaire previously described by and used in our own work, which was originally adapted from an 88-item Clinical Research Appraisal Inventory.2 A binary variable was created to identify trainees who submitted an initial or revised proposal vs those who abandoned their proposal or were still writing. Trainees were assessed prior to and following program completion with subsequent assessments at 6 and 12 months beyond participation. RESULTS: As of June 20, 2019, 12 of the 21 (57%) trainees had submitted a grant proposal (eg, NIH, other federal or non-federal grant). For every point increase in 12-month post assessments, Grantsmanship Self-Efficacy scores across all domains had a 44% higher prevalence of submitting a grant after controlling for race, sex, education level, academic rank, research experience, duration of postdoctoral training, institution type, and NRMN STAR cohort. CONCLUSIONS: Our findings demonstrate that NRMN STAR had a positive impact on trainees' confidence in grant writing and professional development activities, which resulted in higher grant submission rates.

Online resources for persons recently diagnosed with HIV/AIDS: an analysis of HIV-related webpages.

The Internet is a major source of HIV-related information and resources for persons recently diagnosed with HIV/AIDS (PRDHA). This study examined the types of HIV-related websites that appear as a result of HIV-related keyword searches and the extent to which website information targets PRDHA. The first page of HIV-related webpages from 18 keyword searches was coded. Among 137 webpages meeting inclusion criteria, 63% represented HIV-informational websites, 31% targeted HIV-positive individuals, and over half contained or provided access to HIV prevention, treatment, and transmission information. Thirty-three percent of webpages contained or provided access to PRDHA-targeted information, with a greater percentage of those webpages having mobile, non-English, and "Ask the Expert" features compared with non-PRDHA targeted webpages. Implications for PRDHA include the following: (1) they should explore HIV-related websites to gain insight into the credibility of the information contained on those sites; (2) PRDHA must be aware that HIV-related websites have the potential to elicit dated, emotionally distressing, or irrelevant information; and (3) to obtain information that relates to their demographic and situational profile, they may wish to use specific key terms (e.g., "HIV women") rather than attempting to navigate webpages that arise from general search terms (e.g., "HIV"). Recommendations for future development of online resources for PRDHA include providing HIV-relevant information in a stepwise fashion, providing demographically targeted HIV information, and greater utilization of mobile technology.

Characterizing the Community Collaborations of a Community-Based Student-Run Clinic.

INTRODUCTION: Community-based student-run free clinics (SRCs) can advance health on a community level by reaching populations not served by other organizations and serving as an access point to the healthcare system. However, little is known about the scope of community-engaged efforts undertaken by SRCs, including interorganizational partnerships and relationship-building activities. The primary objective of this study was to characterize the community collaborations of an interprofessional SRC located in a high-poverty area. METHODS: Qualitative data was collected through semi-structured interviews with key stakeholders, which included student volunteers holding leadership roles, representatives of community-based organizations, and current and former members of the community advisory board. RESULTS: Key informant interviews with student and community leaders offered insight into local community outreach activities and the community advisory board. Findings revealed opportunities to impact community health through more intentional collaboration and relationship-building. CONCLUSIONS: This exploratory study adds to literature suggesting that community-based SRCs can address service gaps in medically underserved communities while advancing community health through intentional community engagement.

The Impact of Grantsmanship Self-Efficacy on Early Stage Investigators of The National Research Mentoring Network Steps Toward Academic Research (NRMN STAR).

The NRMN STAR program was created to address the persistent underrepresentation in grant submissions and receipt of National Institutes of Health (NIH) awards by racial/ethnic minority groups. In our current study, we assessed program impact on trainees' self-efficacy related to grant writing. The program was conducted with two cohorts: one in June 2014 and one in June 2015. We used a 19-item grant writing self-efficacy scale drawn from the 88-item Clinical Research Assessment Inventory of three domains (conceptualizing, designing, and funding a study) to predict whether self-efficacy influences researchers' grant submissions. Trainees were assessed prior to and following program completion with subsequent assessments at 6 and 12 months beyond participation. The majority of trainees were Black (62%), female (62%), and had obtained a PhD (90%). More than half (52%) were assistant professors and 57% had none or <1 year of research experience beyond postdoctoral training. However, 24% of trainees reported no postdoctoral research training. NRMN STAR trainees' self-efficacy significantly improved on all three domains exhibiting a 2.0-point mean change score on two domains (conceptualizing and design) and 3.7 point mean change score on the domain, funding a study. Findings suggest that NRMN's STAR provides impactful, confidence-building training for diverse, early stage investigators with little-to-no skills, experiences, or low self-efficacy in writing research grants.

Grant application outcomes for biomedical researchers who participated in the National Research Mentoring Network's Grant Writing Coaching Programs.

BACKGROUND: A diverse research workforce is essential for catalyzing biomedical advancements, but this workforce goal is hindered by persistent sex and racial/ethnic disparities among investigators receiving research grants from the National Institutes of Health (NIH). In response, the NIH-funded National Research Mentoring Network implemented a Grant Writing Coaching Program (GCP) to provide diverse cohorts of early-career investigators across the United States with intensive coaching throughout the proposal development process. We evaluated the GCP's national reach and short-term impact on participants' proposal submissions and funding outcomes. METHODS: The GCP was delivered as six similar but distinct models. All models began with an in-person group session, followed by a series of coaching sessions over 4 to 12 months. Participants were surveyed at 6-, 12- and 18-months after program completion to assess proposal outcomes (submissions, awards). Self-reported data were verified and supplemented by searches of public repositories of awarded grants when available. Submission and award rates were derived from counts of participants who submitted or were awarded at least one grant proposal in a category (NIH, other federal, non-federal). RESULTS: From June 2015 through March 2019, 545 investigators (67% female, 61% under-represented racial/ethnic minority, URM) from 187 different institutions participated in the GCP. Among them, 324 (59% of participants) submitted at least one grant application and 134 (41% of submitters) received funding. A total of 164 grants were awarded, the majority being from the NIH (93, 56%). Of the 74 R01 (or similar) NIH research proposals submitted by GCP participants, 16 have been funded thus far (56% to URM, 75% to women). This 22% award rate exceeded the 2016-2018 NIH success rates for new R01s. CONCLUSION: Inter- and intra-institutional grant writing coaching groups are a feasible and effective approach to supporting the grant acquisition efforts of early-career biomedical investigators, including women and those from URM groups.