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Background: It is critical to understand the wide-ranging clinical and non-clinical effects of genome sequencing (GS) for parents in the NICU context. We assessed parents’ experiences with GS as a first-line diagnostic tool for infants with suspected genetic conditions in the NICU. Methods: Parents of newborns (N = 62) suspected of having a genetic condition were recruited across five hospitals in the southeast United States as part of the SouthSeq study. Semi-structured interviews (N = 78) were conducted after parents received their child’s sequencing result (positive, negative, or variants of unknown significance). Thematic analysis was performed on all interviews. Results: Key themes included that (1) GS in infancy is important for reproductive decision making, preparing for the child’s future care, ending the diagnostic odyssey, and sharing results with care providers; (2) the timing of disclosure was acceptable for most parents, although many reported the NICU environment was overwhelming; and (3) parents deny that receiving GS results during infancy exacerbated parent–infant bonding, and reported variable impact on their feelings of guilt. Conclusion: Parents reported that GS during the neonatal period was useful because it provided a “backbone” for their child’s care. Parents did not consistently endorse negative impacts like interference with parent–infant bonding.

PURPOSE: SouthSeq is a translational research study that performed genome sequencing (GS) for infants with symptoms suggestive of a genetic disorder. Recruitment targeted racial/ethnic minorities and rural, medically underserved areas in the Southeastern US that are historically under-represented in genomic medicine research. METHODS: GS and analysis were performed for 367 infants to detect disease-causal variation concurrent with standard of care evaluation and testing. RESULTS: Definitive diagnostic (DD) or likely diagnostic (LD) genetic findings were identified in 30% of infants and 14% harbored an uncertain result. Only 43% of DD/LD findings were identified via concurrent clinical genetic testing suggesting that GS testing is better for obtaining early genetic diagnosis. We also identified phenotypes that correlate with the likelihood of receiving a DD/LD finding, such as craniofacial, ophthalmologic, auditory, skin, and hair abnormalities. We did not observe any differences in diagnostic rates between racial/ethnic groups. CONCLUSION: We describe one of the largest-to-date GS cohorts of ill infants, enriched for African American and rural patients. Our results demonstrate the utility of GS as it provides early in life detection of clinically relevant genetic variation not identified via current clinical genetic testing, particularly for infants exhibiting certain phenotypic features.

Engaging patients in the research process helps to ensure researchers ask meaningful questions and generate useful evidence to inform healthcare decisions. In 2015, the Veterans Health Administration (VA) Health Services Research & Development (HSR&D) service convened a Veteran engagement workgroup, comprised of researchers, clinicians, and Veterans, to identify ways to integrate Veteran engagement into HSR&D. A subgroup was designated to explore the utility of health experiences research (research focused on enhancing understanding of people’s experiences with healthcare and illnesses) as a mechanism to complement and broaden traditional engagement mechanisms. The subgroup recommended the VA adopt the Database of Individual Patient Experiences (DIPEx) methodology for conducting and disseminating health experiences research (HER). In this paper, we describe (1) the key components of the DIPEx approach, (2) how these components complement and broaden current methods of Veteran engagement, (3) an update on VA activities using the DIPEx approach, and (4) a roadmap for future VA HER activities.

ImportanceProlonged symptoms following SARS-CoV-2 infection, or Long COVID, is common, but few prospective studies of Long COVID risk factors have been conducted.ObjectiveTo determine whether sociodemographic factors, lifestyle, or medical history preceding COVID-19 or characteristics of acute SARS-CoV-2 infection are associated with Long COVID.DesignCohort study with longitudinal assessment of symptoms before, during, and after SARS-CoV-2 infection, and cross-sectional assessment of Long COVID symptoms using data from the COVID-19 Citizen Science (CCS) study.SettingCCS is an online cohort study that began enrolling March 26, 2020. We included data collected between March 26, 2020, and May 18, 2022.ParticipantsAdult CCS participants who reported a positive SARS-CoV-2 test result (PCR, Antigen, or Antibody) more than 30 days prior to May 4, 2022, were surveyed.ExposuresAge, sex, race/ethnicity, education, employment, socioeconomic status/financial insecurity, self-reported medical history, vaccination status, time of infection (variant wave), number of acute symptoms, pre-COVID depression, anxiety, alcohol and drug use, sleep, exercise.Main OutcomePresence of at least 1 Long COVID symptom greater than 1 month after acute infection. Sensitivity analyses were performed considering only symptoms beyond 3 months and only severe symptoms.Results13,305 participants reported a SARS-CoV-2 positive test more than 30 days prior, 1480 (11.1% of eligible) responded to a survey about Long COVID symptoms, and 476 (32.2% of respondents) reported Long COVID symptoms (median 360 days after infection).Respondents’ mean age was 53 and 1017 (69%) were female. Common Long COVID symptoms included fatigue, reported by 230/476 (48.3%), shortness of breath (109, 22.9%), confusion/brain fog (108, 22.7%), headache (103, 21.6%), and altered taste or smell (98, 20.6%). In multivariable models, number of acute COVID-19 symptoms (OR 1.30 per symptom, 95%CI 1.20-1.40), lower socioeconomic status/financial insecurity (OR 1.62, 95%CI 1.02-2.63), pre-infection depression (OR 1.08, 95%CI 1.01-1.16), and earlier variants (OR 0.37 for Omicron compared to ancestral strain, 95%CI 0.15-0.90) were associated with Long COVID symptoms.Conclusions and RelevanceVariant wave, severity of acute infection, lower socioeconomic status and pre-existing depression are associated with Long COVID symptoms.Key PointsQuestionWhat are the patterns of symptoms and risk factors for Long COVID among SARS-CoV-2 infected individuals?FindingsPersistent symptoms were highly prevalent, especially fatigue, shortness of breath, headache, brain fog/confusion, and altered taste/smell, which persisted beyond 1 year among 56% of participants with symptoms; a minority of participants reported severe Long COVID symptoms. Number of acute symptoms during acute SARS-CoV-2 infection, financial insecurity, pre-existing depression, and infection with earlier variants are associated with prevalent Long COVID symptoms independent of vaccination, medical history, and other factors.MeaningSeverity of acute infection, SARS-CoV-2 variant, and financial insecurity and depression are associated with Long COVID symptoms.

Clinical research studies have navigated many changes throughout the COVID-19 pandemic. We sought to describe the pandemic's impact on research operations in the context of a clinical genomics research consortium that aimed to enroll a majority of participants from underrepresented populations. We interviewed (July to November 2020) and surveyed (May to August 2021) representatives of six projects in the Clinical Sequencing Evidence-Generating Research (CSER) consortium, which studies the implementation of genome sequencing in the clinical care of patients from populations that are underrepresented in genomics research or are medically underserved. Questions focused on COVID's impact on participant recruitment, enrollment, and engagement, and the transition to teleresearch. Responses were combined and thematically analyzed. Projects described factors at the project, institutional, and community levels that affected their experiences. Project factors included the project's progress at the pandemic's onset, the urgency of in-person clinical care for the disease being studied, and the degree to which teleresearch procedures were already incorporated. Institutional and community factors included institutional guidance for research and clinical care and the burden of COVID on the local community. Overall, being responsive to community experiences and values was essential to how CSER navigated evolving challenges during the COVID-19 pandemic.

BACKGROUND AND OBJECTIVES: Successful clinical integration of genomic sequencing (GS) requires evidence of its utility. While GS potentially has benefits (utilities) or harms (disutilities) across multiple domains of life for both patients and their families, there is yet no empirically informed conceptual model of these effects. Our objective was to develop an empirically informed conceptual model of perceived utility of GS that captures utilities and disutilities for patients and their families across diverse backgrounds. METHODS: We took a patient-centered approach in which we began with a review of existing literature followed by collection of primary interview data. We conducted semi-structured interviews to explore types of utility in a clinically and sociopolitically diverse sample of 60 adults from seven Clinical Sequencing Evidence-Generating Research (CSER) consortium projects. Interviewees had either personally received, or were parents of a child who had received, GS results. Qualitative data was analysed using thematic analysis. Findings from interviews were integrated with existing literature on clinical and personal utility to form the basis of an initial conceptual model that was refined based on expert review and feedback. RESULTS: Five key utility types that have been previously identified in qualitative literature held up as primary domains of utility and disutility in our diverse sample. Interview data were used to specify and organize subdomains of an initial conceptual model. After expert refinement, the five primary domains included in the final model are: clinical, emotional, behavioral, cognitive, and social, and several sub-domains are specified within each. CONCLUSION: We present an empirically-informed conceptual model of perceived utility of GS. This model can be used to guide development of instruments for patient-centered outcome measurement that capture the range of relevant utilities and disutilities and inform clinical implementation of GS.

Context: We previously developed the reintegration model to describe the adjustment process for individuals at the end of life. However, caregivers and loved ones also require significant support a...

Since its inception in 2016, the establishment of learning communities led by senior Society of Behavioral Medicine (SBM) members has been central to the SBM’s Mid-Career Leadership Institute (Institute). At the beginning of an initial two-day intensive workshop, groups of approximately six fellows are placed together, and one or two senior SBM members are asked to lead group mentoring. Senior SBM members serve as mentors during quarterly calls that are conducted over the year in order for group members to develop and present an individual leadership project at the following annual meeting. Group mentoring relies on the social dynamic that emerges from the group’s own social norms and roles; it is designed to advance the careers of group members. To our knowledge, this is the first commentary describing a program of formal group mentoring for mid-career leadership development in a professional association. Based on the authors’ experience as mentors, thematic and descriptive analyses of the initial workshop evaluations, and contemporaneous notes, we discuss the structure, process, and project outcomes of the formal group mentoring in SBM’s Institute. Early process evaluation of the Institute suggests that the Fellows benefitted from the group mentoring experience.

217 Background: Little data exist on patient perceptions of guideline-based care. This qualitative analysis describes patient and oncologist views on the value of discussing guidelines when making metastatic breast cancer (MBC) treatment decisions. Methods: In-person interviews completed by MBC patients and community medical oncologists and focus groups for academic medical oncologists were audio-recorded and transcribed. Two coders utilized a content analysis approach to analyze transcripts independently using NVivo. Major themes and exemplary quotes were extracted. Results: Participants included 20 MBC patients, 6 community oncologists, and 5 academic oncologists. The majority of patients (80%) were unfamiliar with the term “guidelines”. However, all patients desired to know if they were receiving guideline discordant treatment. As one patient commented “ I'm supposed to know the guidelines and it's not supposed to be a secret to me.” Among patients willing to receive care inconsistent with guidelines, several themes emerged including trusting the oncologist, relying on the oncologist’s prior experiences, being informed of rationale for deviation, personalized treatment, and openness to novel therapies. Physician discussions on the importance of guidelines revealed themes such as consistency with scientific evidence, insurance coverage, and limiting unusual practices. Oncologists identified limitations to guidelines including lack of expert consensus, inability to “ think outside the box” to personalize treatment, and lack of guideline timeliness. Although some oncologists discussed guidelines, a common sentiment was that sharing this information is not a priority. One physician commented that sharing the guidelines with patients is, “ getting too much into the how you practice medicine, and they may not want to know, kind of like eating at a restaurant. You don't need to know how the cook's preparing everything.” Conclusions: Both patients and physicians expressed reasons why guideline discordant treatments would be acceptable. Providers’ preference to limit discussions of guidelines is discordant with patients’ desire for this information and may limit shared decision-making.

Context: Increasing emphasis on patient-centered care has led to highlighted importance of shared decision making, which better aligns medical decisions with patient care preferences. Effective shared decision making in metastatic breast cancer (MBC) treatment requires prognostic understanding, without which patients may receive treatment inconsistent with personal preferences. Objectives: To assess MBC patient and provider perspectives on the role of prognostic information in treatment decision making. Methods: We conducted semi-structured interviews with MBC patients and community oncologists and separate focus groups involving lay navigators, nurses, and academic oncologists. Qualitative analysis utilized a content analysis approach that included a constant comparative method to generate themes. Results: Of 20 interviewed patients with MBC, 30% were African American. Academic oncologists were mostly women (60%), community oncologists were all Caucasian, and nurses were all women and 28% African American. Lay navigators were all African American and predominately women (86%). Five emergent themes were identified. (1) Most patients wanted prognostic information but differed in when they wanted to have this conversation, (2) Emotional distress and discomfort was a critical reason for not discussing prognosis, (3) Religious beliefs shaped preferences for prognostic information, (4) Health care professionals differed on prognostic information delivery timing, and (5) Providers acknowledged that an individualized approach taking into account patient values and preferences would be beneficial. Conclusion: Most MBC patients wanted prognostic information, yet varied in when they wanted this information. Understanding why patients want limited or unrestricted prognostic information can inform oncologists' efforts toward shared decision making.

Lack of diversity among genomic research participants results in disparities in benefits from genetic testing. To address this, the Alabama Genomic Health Initiative employed community engagement strategies to recruit diverse populations where they lived. In this paper, we describe our engagement techniques and recruitment strategies, which resulted in significant improvement in representation of African American participants. While African American participation has not reached the representation of this community as a percentage of Alabama's overall population (26%–27%), we have achieved an overall representation exceeding 20% for African Americans. We believe this demonstrates the value of engagement and recruitment where diverse populations reside.

Background: Low health literacy is associated with poor health outcomes in many chronic diseases and may have an important role in determining surgical outcomes. This study aims to comprehensively review the current state of science on adult health literacy in surgery and to identify knowledge gaps for future research. Methods: Using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, a systematic search was conducted to identify all studies from January 2002 through May 2018 that used validated instruments to assess health literacy among adult patients undergoing surgery. Studies were assessed for quality using the Newcastle-Ottawa scale and evaluated on findings by their focus on identifying health literacy levels, understanding associations with surgical outcomes, and/or developing interventions to address low health literacy. Key Results: There were 51 studies on health literacy with data from 22,139 patients included in this review. Low health literacy was present in more than one-third of surgical patients (34%, interquartile range 16%–50%). The most commonly used validated instrument for assessment of health literacy in the surgical population was the Newest Vital Sign. Most studies were focused on identifying the prevalence of low health literacy within a surgery population (84%, n = 43). Few studies focused on understanding the association of health literacy to surgical outcomes (12%, n = 6) and even fewer studies developed interventions to address health literacy (4%, n = 2). Discussion: Low health literacy is common among surgical patients. Important opportunities exist to better understand the role of health literacy in determining surgical outcomes and to develop more health literacy-sensitive models of surgical care. [ HLRP: Health Literacy Research and Practice . 2020;4(1):e45–e65.] Plain Language Summary: Health literacy has not been well-studied in surgery but likely plays an important role. In this article, we reviewed all current research on health literacy in surgery to help us understand where we are at and where we need to go. We found that low health literacy is common and we need more ways to address it in surgery.

PURPOSE: There is a critical need for genomic medicine research that reflects and benefits socioeconomically and ancestrally diverse populations. Disparities in research populations persist, however, highlighting that traditional study designs and materials may be insufficient or inaccessible to all groups. New approaches can be gained through collaborations with patient/community stakeholders. Although some benefits of stakeholder engagement are recognized, routine incorporation into design and implementation of genomics research has yet to be realized. METHODS: The NIH-funded Clinical Sequencing Evidence-Generating Research (CSER) consortium required stakeholder engagement as a dedicated project component. Each CSER project planned and carried out stakeholder engagement activities with differing goals and expected outcomes. Examples were curated from each project to highlight engagement strategies and outcomes throughout the research lifecycle from development through dissemination. RESULTS: Projects tailored strategies to individual study needs, logistical constraints, and other challenges. Lessons learned include starting early with engagement efforts across project stakeholder groups and planned flexibility to enable adaptations throughout the project lifecycle. CONCLUSION: Each CSER project utilized more than one approach to engage with relevant stakeholders, resulting in numerous adaptations and tremendous value-added throughout the full research lifecycle. Incorporation of community stakeholder insight improves the outcomes and relevance of genomic medicine research.

Summary Prior to integration into clinical care, a novel medical innovation is typically assessed in terms of its balance of benefits and risks, often referred to as utility. Members of multidisciplinary research teams may conceptualize and assess utility in different ways, which has implications within the translational genomics community and for the evidence base upon which clinical guidelines groups and healthcare payers make decisions. Ambiguity in the conceptualization of utility in translational genomics research can lead to communication challenges within research teams and to study designs that do not meet stakeholder needs. We seek to address the ambiguity challenge by describing the conceptual understanding of utility and use of the term by scholars in the fields of philosophy, medicine, and the social sciences of decision psychology and health economics. We illustrate applications of each field's orientation to translational genomics research by using examples from the Clinical Sequencing Evidence-Generating Research (CSER) consortium, and we provide recommendations for increasing clarity and cohesion in future research. Given that different understandings of utility will align to a greater or lesser degree with important stakeholders' views, more precise use of the term can help researchers to better integrate multidisciplinary investigations and communicate with stakeholders.

Importance Head and neck cancer (HNC) survivors are about twice as likely to die by suicide compared with other cancer survivors. Objective To examine the associations between precancer mental health and pain and postcancer receipt of mental health, substance use disorder (SUD), or palliative care services with risk of suicidal self-directed violence (SSDV). Design, setting, and participants This retrospective cohort study used the Veterans Health Administration data of 7803 veterans with a diagnosis of HNC (stage I-IVB) who received cancer treatment between January 1, 2012, and January 1, 2018. Data were analyzed between May 2020 and July 2021. Exposures Presence of precancer chronic pain and SUD diagnoses, and postcancer SUD, mental health, or palliative care treatment. Exposures were defined using International Classification of Diseases, Ninth Revision and International Statistical Classification of Diseases and Related Health Problems, Tenth Revision codes in Veterans Health Administration administrative data. Main outcomes and measures Documented SSDV event, including suicide attempt or death by suicide, after HNC diagnosis. Results Among the cohort of 7803 veterans (7685 [98.4%] male; mean [SD] age, 65 [10.7] years), 72 (0.9%) had at least 1 documented SSDV event following their cancer diagnosis, and 51 (0.7%) died by suicide. Four adjusted modified Poisson regression analyses identified that precancer chronic pain (incidence rate ratio [IRR], 2.58; 95% CI 1.54-4.32) or mood disorder diagnoses (IRR, 1.95; 95% CI, 1.17-3.24) were associated with higher risk of postcancer SSDV. Those who had at least 1 documented mental health (IRR, 2.73; 95% CI, 1.24-6.03) or SUD (IRR, 3.92; 95% CI, 2.46-6.24) treatment encounter in the 90 days following HNC diagnosis were at higher risk for SSDV. A palliative care encounter within 90 days of postcancer diagnosis was associated with decreased risk of SSVD (IRR, 0.49; 95% CI, 0.31-0.78). Conclusions and relevance In this cohort study, a high proportion of HNC survivors with an SSVD event died from their injuries. Identification of risk factors for SSDV among HNC survivors may help direct additional resources to those who are at high risk. Referral to palliative care appears to be an important component of supportive oncologic care to reduce the risk of SSDV.

PurposeSouthSeq, a translational research study to perform genome sequencing (GS) for infants with symptoms suggestive of a genetic disorder, was conducted in NICUs in the Southeastern US. Recruitment targeted racial/ethnic minorities and rural, medically underserved areas that are historically under-represented in genomic medicine research.MethodsGS and analysis were performed for 367 newborns to detect disease-causal genetic variation concurrent with standard of care evaluation and testing.ResultsDefinitive diagnostic (DD) or likely diagnostic (LD) genetic findings were identified in 30% of newborns and 14% harbored an uncertain result. Only 39% of DD/LD findings were identified via concurrent standard of care suggesting that GS testing is better for obtaining early genetic diagnosis. We also identified phenotypes that correlate with the likelihood of receiving a DD/LD finding, such as craniofacial, ophthalmologic, auditory, skin, and hair abnormalities. We did not observe any differences in diagnostic rates between racial/ethnic groups.ConclusionWe describe one of the largest to-date GS cohorts of ill newborns, enriched for African American and rural patients. Our results demonstrate the utility of GS as it provides early in life detection of clinically relevant genetic variation not identified via current standard clinical testing, particularly for newborns exhibiting certain phenotypic features.

An ideal model for decision making in cancer is shared decision-making (SDM). Primary facilitators in this model are information-seeking about treatment options and patient-physician trust. Previous studies have investigated the role of each of these parameters individually. However, little is known about their convergent role in treatment decision-making. Therefore, we explored perspectives of metastatic breast cancer (MBC) patients and healthcare professionals about the influence of health information-seeking and physician trust in the SDM process. Qualitative interviews with 20 MBC patients and 6 community oncologists, as well as 3 separate focus groups involving lay navigators, nurses, and academic oncologists, were conducted, recorded, and transcribed. Qualitative data analysis employed a content analysis approach, which included a constant comparative method to generate themes from the transcribed textual data. Five emergent themes were identified (1) physicians considered themselves as the patients' primary source of treatment information; (2) patients trusted their physician's treatment recommendations; (3) patients varied in their approach to seeking further health information regarding the discussed treatment options (e.g., internet websites, family and friends, support groups); (4) other healthcare professionals were cognizant of their fundamental role in facilitating further information-seeking; and (5) patient and physician discordant perspectives on shared decision making were present. Patient procurement of treatment information and the capacity to use it effectively in conjunction with patient trust in physicians play an important role in the shared decision-making process.

Precision medicine promises to improve patient outcomes, but much is unknown about its adoption within health-care systems. A comprehensive implementation plan is needed to realize its benefits. We convened 80 stakeholders for agenda setting to inform precision medicine policy, delivery, and research. Conference proceedings were audio-recorded, transcribed, and thematically analyzed. We mapped themes representing opportunities, challenges, and implementation strategies to a logic model, and two implementation science frameworks provided context. The logic model components included inputs: precision medicine infrastructure (clinical, research, and information technology), big data (from data sources to analytics), and resources (e.g., workforce and funding); activities: precision medicine research, practice, and education; outputs: precision medicine diagnosis; outcomes: personal utility, clinical utility, and health-care utilization; and impacts: precision medicine value, equity and access, and economic indicators. Precision medicine implementation challenges include evidence gaps demonstrating precision medicine utility, an unprepared workforce, the need to improve precision medicine access and reduce variation, and uncertain impacts on health-care utilization. Opportunities include integrated health-care systems, partnerships, and data analytics to support clinical decisions. Examples of implementation strategies to promote precision medicine are: changing record systems, data warehousing techniques, centralized technical assistance, and engaging consumers. We developed a theory-based, context-specific logic model that can be used by health-care organizations to facilitate precision medicine implementation.

Background: Improving family caregiver preparation for surrogate decision making is a critical priority. Objective: Determine a parsimonious set of intrapersonal factors associated with family caregivers' confidence in making future medical decisions for their relatives with cancer. Methods: Cross-sectional mail survey. Family caregivers of Medicare beneficiaries with pancreatic, lung, brain, ovarian, head and neck, hematologic, and stage IV cancers from communities of eight U.S. cancer centers. Participants completed validated measures of their social and mental health, self-care behaviors, coping styles, and surrogate decision-making confidence. Using linear modeling, the Bayesian information criterion was used to identify factors associated with decision-making confidence. A bootstrap approach was used to conduct penalized inference on the selected model coefficients. Model fit validation was assessed with a random forest ensemble. Results: Caregivers (n = 294) were on average 65.5 years old, mostly female (72.8%), and care recipients' spouse/partner (60.2%). The parsimonious set of factors associated with low caregiver decision-making confidence included less engagement in spiritual growth self-care, more use of avoidant coping, low emotional social support, and younger care recipient age (in-sample R(2) = 0.22). These factors were also identified by a random forest approach. After overfitting adjustment (shrunken R(2) = 0.09), the strongest associations with low surrogate decision-making confidence were low spiritual growth self-care (adjusted standardized B = 0.17, p = 0.005) and high use of avoidant coping (adjusted standardized B = −0.12, p = 0.049). Discussion: Identifying strategies to enhance spiritual growth and reduce avoidant coping may be promising targets for interventions to improve family caregivers' confidence in future surrogate decision making.

With 20 million living veterans and millions more immediate family members, and approximately 9 million veterans enrolled in the nationally networked VA healthcare system, representing the interests and needs of veterans in this complex community is a substantial endeavor. Based on the importance of engaging Veterans in research, the VA Health Services Research and Development (HSR&D) Service convened a Working Group of VA researchers and Veterans to conduct a review of patient engagement models and develop recommendations for an approach to engage Veterans in health research that would incorporate their unique lived experiences and interests, and their perspectives on research priorities. The Working Group considered the specific context for Veteran engagement in research that includes other VA stakeholders from the operational and clinical leadership of the VA Health Administration (VHA). The resulting model identifies the range of potential stakeholders and three domains of relevant constructs—processes expected to facilitate Veteran engagement in research with other stakeholders, individual stakeholder and external factors, and outcomes. The expectation is that Veteran engagement will benefit research to policy and practice translation, including increasing the transparency of research and producing knowledge that is readily accepted and implemented in healthcare.

Objective The aim of this study was to obtain feedback from key stakeholders and end users to identify program strengths and weaknesses to plan for wider dissemination and implementation of the Virtual Acute Care for Elders (Virtual ACE) program, a novel intervention that improves outcomes for older surgical patients. Background Virtual ACE was developed to deliver evidence-based geriatric care without requiring daily presence of a geriatrician. Previous work demonstrated that Virtual ACE increased mobility and decreased delirium rates for surgical patients. Methods We conducted semi-structured interviews with 30 key stakeholders (physicians, nurses, hospital leadership, nurse managers, information technology staff, and physical/occupational therapists) involved in the implementation and use of the program. Results Our stakeholders indicated that Virtual ACE was extremely empowering for bedside nurses. The program helped nurses identify older patients who were at risk for a difficult postoperative recovery. Virtual ACE also gave them skills to manage complex older patients and more effectively communicate their needs to surgeons and other providers. Nurse managers felt that Virtual ACE helped them allocate limited resources and plan their unit staffing assignments to better manage the needs of older patients. The main criticism was that the Virtual ACE Tracker that displayed patient status was difficult to interpret and could be improved by a better design interface. Stakeholders also felt that program training needed to be improved to accommodate staff turnover. Conclusions Although respondents identified areas for improvement, our stakeholders felt that Virtual ACE empowered them and provided effective tools to improve outcomes for older surgical patients.

Background Although secure messaging (SM) between patients and clinical team members is a recommended component of continuous care, uptake by patients remains relatively low. We designed a multicomponent Supported Adoption Program (SAP) to increase SM adoption among patients using the Veterans Health Administration (VHA) for primary care. Objective Our goals were to (1) conduct a multisite, randomized, encouragement design trial to test the effectiveness of an SAP designed to increase patient engagement with SM through VHA’s online patient portal (My HealtheVet [MHV]) and (2) evaluate the impact of the SAP and patient-level SM adoption on perceived provider autonomy support and communication. Patient-reported barriers to SM adoption were also assessed. Methods We randomized 1195 patients at 3 VHA facilities who had MHV portal accounts but had never used SM. Half were randomized to receive the SAP, and half served as controls receiving usual care. The SAP consisted of encouragement to adopt SM via mailed educational materials, proactive SM sent to patients, and telephone-based motivational interviews. We examined differences in SM adoption rates between SAP recipients and controls at 9 months and 21 months. Follow-up telephone surveys were conducted to assess perceived provider autonomy support and self-report of telephone communication with clinical teams. Results Patients randomized to the SAP had significantly higher rates of SM adoption than the control group (101/595, 17.0% vs 40/600, 6.7%; P Conclusions The multicomponent SAP was successful in increasing use of SM 10 percentage points above standard care; new SM adopters reported improved perceptions of provider autonomy support and less use of the telephone to communicate with their providers. Still, despite the encouragement and technical assistance provided through the SAP, adoption rates were lower than anticipated, reaching only 24% at 21 months (10% above controls). Common barriers to adoption such as limited perceived need for SM may be more challenging to address and require different interventions than barriers related to patient self-efficacy or technical difficulties. Trial Registration ClinicalTrials.gov NCT02665468; https://clinicaltrials.gov/ct2/show/NCT02665468

Background While many studies have tested the impact of a decision aid (DA) compared to not receiving any DA, far fewer have tested how different types of DAs affect key outcomes such as treatment choice, patient–provider communication, or decision process/satisfaction. This study tested the impact of a complex medical oriented DA compared to a more simplistic decision aid designed to encourage shared decision making in men with clinically localized prostate cancer. Methods 1028 men at 4 VA hospitals were recruited after a scheduled prostate biopsy. Participants completed baseline measures and were randomized to receive either a simple or complex DA. Participants were men with clinically localized cancer (N = 285) by biopsy and who completed a baseline survey. Survey measures: baseline (biopsy); immediately prior to seeing the physician for biopsy results (pre- encounter); one week following the physician visit (post-encounter). Outcome measures included treatment preference and treatment received, knowledge, preference for shared decision making, decision making process, and patients’ use and satisfaction with the DA. Results Participants who received the simple DA had greater interest in shared decision making after reading the DA (p = 0.03), found the DA more helpful (p’s Conclusions The simple DA led to increased desire for shared decision making and for less aggressive treatment. However, these differences disappeared following the physician visit, which appeared to change patients’ treatment preferences. Trial registration This trial was pre-registered prior to recruitment of participants.

BACKGROUND Although secure messaging (SM) between patients and clinical team members is a recommended component of continuous care, uptake by patients remains relatively low. We designed a multicomponent Supported Adoption Program (SAP) to increase SM adoption among patients using the Veterans Health Administration (VHA) for primary care. OBJECTIVE Our goals were to (1) conduct a multisite, randomized, encouragement design trial to test the effectiveness of an SAP designed to increase patient engagement with SM through VHA’s online patient portal (My HealtheVet [MHV]) and (2) evaluate the impact of the SAP and patient-level SM adoption on perceived provider autonomy support and communication. Patient-reported barriers to SM adoption were also assessed. METHODS We randomized 1195 patients at 3 VHA facilities who had MHV portal accounts but had never used SM. Half were randomized to receive the SAP, and half served as controls receiving usual care. The SAP consisted of encouragement to adopt SM via mailed educational materials, proactive SM sent to patients, and telephone-based motivational interviews. We examined differences in SM adoption rates between SAP recipients and controls at 9 months and 21 months. Follow-up telephone surveys were conducted to assess perceived provider autonomy support and self-report of telephone communication with clinical teams. RESULTS Patients randomized to the SAP had significantly higher rates of SM adoption than the control group (101/595, 17.0% vs 40/600, 6.7%; PPP=.007) and less telephone use to communicate with their provider (68.8% vs 76.0%, P=.05), compared to patients in the control group. Patient-reported barriers to SM adoption included self-efficacy (eg, not comfortable using a computer, 24%), no perceived need for SM (22%), and difficulties with portal password or login (17%). CONCLUSIONS The multicomponent SAP was successful in increasing use of SM 10 percentage points above standard care; new SM adopters reported improved perceptions of provider autonomy support and less use of the telephone to communicate with their providers. Still, despite the encouragement and technical assistance provided through the SAP, adoption rates were lower than anticipated, reaching only 24% at 21 months (10% above controls). Common barriers to adoption such as limited perceived need for SM may be more challenging to address and require different interventions than barriers related to patient self-efficacy or technical difficulties. CLINICALTRIAL ClinicalTrials.gov NCT02665468; https://clinicaltrials.gov/ct2/show/NCT02665468

Introduction:Implementation of genome-scale sequencing in clinical care has significant challenges: the technology is highly dimensional with many kinds of potential results, results interpretation and delivery require expertise and coordination across multiple medical specialties, clinical utility may be uncertain, and there may be broader familial or societal implications beyond the individual participant. Transdisciplinary consortia and collaborative team science are well poised to address these challenges. However, understanding the complex web of organizational, institutional, physical, environmental, technologic, and other political and societal factors that influence the effectiveness of consortia is understudied. We describe our experience working in the Clinical Sequencing Evidence-Generating Research (CSER) consortium, a multi-institutional translational genomics consortium.Methods:A key aspect of the CSER consortium was the juxtaposition of site-specific measures with the need to identify consensus measures related to clinical utility and to create a core set of harmonized measures. During this harmonization process, we sought to minimize participant burden, accommodate project-specific choices, and use validated measures that allow data sharing.Results:Identifying platforms to ensure swift communication between teams and management of materials and data were essential to our harmonization efforts. Funding agencies can help consortia by clarifying key study design elements across projects during the proposal preparation phase and by providing a framework for data sharing data across participating projects.Conclusions:In summary, time and resources must be devoted to developing and implementing collaborative practices as preparatory work at the beginning of project timelines to improve the effectiveness of research consortia.

Military service presents unique challenges and opportunities for health care and public health. In the USA, there are over 2 million military servicemembers, 20 million veterans, and millions more military and veteran family members. Military servicemembers and eligible family members, many veterans, and retirees receive health care through the two largest learning health care systems in the USA, managed and delivered through the Departments of Defense (DoD), Veterans Affairs (VA), and contracted health care organizations. Through a network of collaborative relationships, DoD, VA, and partnering health care and research organizations (university, corporate, community, and government) accelerate research translation into best practices and policy across the USA and beyond. This article outlines military and veteran health research translation as summarized from a collaborative workshop led by experts across health care research, practice, and administration in DoD, VA, the National Institutes of Health, and affiliated universities. Key themes and recommendations for research translation are outlined in areas of: (a) stakeholder engagement and collaboration; (b) implementation science methods; and (c) funding along the translation continuum. Overall, the ability to rapidly translate research into clinical practice and policy for positive health outcomes requires collaborative relationships among many stakeholders. This includes servicemembers, veterans, and their families along with researchers, health care clinicians, and administrators, as well as policymakers and the broader population.

Background We investigated whether variation in post-acute care (PAC) services could be explained by surgeons discharging clinically similar patients to different PAC destinations, including home health (HH), skilled nursing facilities (SNF), and inpatient rehabilitation (IR). Methods We studied patients having colectomy, pancreatectomy or hepatectomy in the 2008–2011 Nationwide Inpatient Sample. We used propensity matching to determine: 1. Proportion of patients discharged to SNF/IR who could be matched to clinically similar patients discharged with HH. 2. Potential cost savings from greater use of HH. Results 30,843 patients were discharged with HH and 23,172 to SNF or IR. 14,163 (61%) SNF/IR patients could be matched to similar patients discharged with HH. Potential cost savings from increasing use of HH as an alternative to SNF/IR ranged from $2.5-$438 million annually. Conclusions There is considerable potential for reducing variation in PAC use and costs by better understanding how surgeons make decisions about PAC placement. Summary Many surgical patients discharged to inpatient rehabilitation or skilled nursing facilities have similar pre- and postoperative characteristics as individuals discharged home with home health. In order to reduce variation and deliver cost-effective care after discharge, it is important to understand how surgeons make decisions about post-acute care, and to develop processes to identify which type of post-acute care is best for each patient.

Objective Women with metastatic breast cancer face numerous, complex treatment and advance care planning (ACP) decisions. Our aim was to develop a better understanding of women with metastatic breast cancer's decision-making preferences overtime and relative to specific types of decisions. Methods Convergent, parallel mixed-methods study. Participants completed the Control Preferences Scale (CPS) and a semi-structured interview of decision-making experiences at enrollment (T1; n = 22) and when facing a decision or 3 months later (T2; n = 19). We categorized women's decision-making experience descriptions into one of the CPS decisional styles and compared them to their CPS response. We constructed an analytic grid that aligned the interview-determined treatment and ACP decisional preferences with the CPS categories at T1 and T2 and calculated Cohen's kappa coefficient and congruence percentages. Results Participants (n = 22) were White (100%), averaged 62 years, married (54%), retired (45%), and had a bachelor's degree (45%). Congruence between CPS response and interview-determined treatment preferences at T1 was 32% (kappa = 0.083) and 33% (kappa = 0.120) at T2. Congruence between CPS survey response and interview-determined ACP preferences at T1 was 22.7% (kappa =0.092) at T1 and 11% (kappa = 0.011) at T2. Conclusions Although women selected a "shared" treatment decision-making style using the CPS validated tool, when interviewed their descriptions generally reflected a passive process in which they followed the oncologists' treatment suggestions. Future research should explore whether the incongruence between stated and actual decision-making style is a function of misinterpreting the CPS choices or a true inconsistency that could lead to adverse consequences such as decisional regret.

New treatments for chronic lymphocytic leukemia (CLL) with excellent response rates and varying toxicity profiles have emerged in recent years, creating an opportunity for a patient's personal preferences to contribute to treatment decisions. We conducted a prospective, quasi-experimental pre- and post-evaluation of a multilevel educational program and its impact on knowledge of CLL and shared decision-making (SDM). We educated patients, lay navigators, nurses/advanced practice providers (APPs), and physicians. Patients were evaluated for change in patient activation, distress, desired role in decision-making, perception of decision-making, satisfaction with oncologist explanation of treatment choice, and knowledge of CLL. Lay navigators, nurses/APPs, and physicians were evaluated for change in CLL knowledge and perception of decision-making. Forty-four patients, 33 lay navigators, 27 nurses/APPs, and 27 physicians participated in the educational program. We observed trends toward improved patient activation, with 68% before education versus 76% after education reporting a Patient Activation Measure (PAM) score of 3 or 4. The percentage of patients desiring and perceiving SDM trended upward from 47% to 67% and from 35% to 49%, respectively. The percentage of patients understanding that CLL is incurable increased from 80% to 90%, as did reporting awareness of signs of progression (64% to 76%). Patients' satisfaction with their oncologists' explanations of therapy increased significantly from 83% to 95% (p = .03). CLL knowledge increased after education for lay navigators (36% vs 63%) and nurses/APPs (35% vs 69%), and remained high for physicians (85% vs 87%). Nurses/APPs and physicians perceived at least some patient involvement in decision-making at baseline, whereas 12% of patients and 23% of lay navigators perceived that physicians made decisions independently. This project demonstrated trends toward improvements in patient engagement, prognostic awareness, knowledge of signs of progression, and SDM. These promising findings should be tested in larger samples. There remains an opportunity for further improvement in SDM.

Conceptual frameworks are useful in research because they can highlight priority research domains, inform decisions about interventions, identify outcomes and factors to measure, and display how factors might relate to each other to generate and test hypotheses. Discovery, translational, and implementation research are all critical to the overall mission of genomic medicine and prevention, but they have yet to be organized into a unified conceptual framework. To fill this gap, our diverse team collaborated to develop the Genomic Medicine Integrative Research (GMIR) Framework, a simple but comprehensive tool to aid the genomics community in developing research questions, strategies, and measures and in integrating genomic medicine and prevention into clinical practice. Here we present the GMIR Framework and its development, along with examples of its use for research development, demonstrating how we applied it to select and harmonize measures for use across diverse genomic medicine implementation projects. Researchers can utilize the GMIR Framework for their own research, collaborative investigations, and clinical implementation efforts; clinicians can use it to establish and evaluate programs; and all stakeholders can use it to help allocate resources and make sure that the full complexity of etiology is included in research and program design, development, and evaluation.

OBJECTIVE The aim of this study was to examine the association of county-level food access, recreational opportunities, and natural amenities with participant engagement in a weight management program. METHODS In this cohort study, participants in the Veterans Health Administration MOVE! weight management program between October 1, 2007, and September 30, 2013, were observed for 12 months after enrollment. Engagement was measured as the number of program visits per year at 12 months. Cross-sectional analysis and spatial regression were used to examine county characteristics associated with greater participant engagement at 12 months. RESULTS A total of 321,624 participants in 2,708 counties were included. Greater engagement was associated with older age, female sex, white race, being married, and being retired. After accounting for similarities between nearby communities, engagement at 12 months was 3.1 visits higher for each additional farmers' market per 1,000 population (P = 0.01). Engagement was highest for participants living in counties with the most natural amenities (P

OBJECTIVE: To investigate the effects of enhanced recovery after surgery (ERAS) on racial disparities in postoperative length of stay (pLOS) after colorectal surgery. BACKGROUND: Racial disparities in surgical outcomes exist. We hypothesized that ERAS would reduce disparities in pLOS between black and white patients. METHODS: Patients undergoing ERAS in 2015 were 1:1 matched by race/ethnicity, age, sex, and procedure to a pre-ERAS group from 2010 to 2014. After stratification by race/ethnicity, expected pLOS was calculated using the American College of Surgeons National Surgical Quality Improvement Project Risk Calculator. Primary outcome was the observed pLOS and observed-to-expected difference in pLOS. Secondary outcomes were National Surgical Quality Improvement Project postoperative complications including 30-day readmissions and mortality. Adjusted sensitivity analyses on pLOS were also performed. RESULTS: Of 420 patients (210 ERAS and 210 pre-ERAS) examined, 28.3% were black. Black and white patients were similar in age, body mass index, sex, American Anesthesia Association class, and minimally invasive approaches. Within the pre-ERAS group, black patients stayed a mean of 2.7 days longer than expected compared with white patients (P < 0.05). Overall, ERAS patients had a significantly shorter pLOS (5.7 vs 8 days) and observed-to-expected difference (−0.7 vs 1.4 days) compared with pre-ERAS patients (P < 0.01). In the ERAS group, disparities in pLOS were reduced with no differences in readmissions or mortality between black and white patients. On sensitivity analyses, race/ethnicity remained a significant predictor of pLOS among pre-ERAS patients, but not for ERAS patients. CONCLUSIONS: ERAS eliminated racial differences in pLOS between black and white patients undergoing colorectal surgery. Reduced pLOS occurred without increases in mortality, readmissions, and most postoperative complications. ERAS may provide a practical approach to reducing disparities in surgical outcomes.

Background Metastatic breast cancer (MBC) is an ideal environment for shared decision-making because of the large number of guideline-based treatment options with similar efficacy but different toxicity profiles. This qualitative analysis describes patient and provider factors that influence decision-making in treatment of MBC. Materials and Methods Patients and community oncologists completed in-person interviews. Academic medical oncologists participated in focus groups. Interviews and focus groups were audio-recorded, transcribed, and analyzed using NVivo. Using an a priori model based on the Ottawa Framework, two independent coders analyzed transcripts using a constant comparative method. Major themes and exemplary quotes were extracted. Results Participants included 20 patients with MBC, 6 community oncologists, and 5 academic oncologists. Analysis of patient interviews revealed a decision-making process characterized by the following themes: decision-making style, contextual factors, and preferences. Patient preference subthemes include treatment efficacy, physical side effects of treatment, emotional side effects of treatment, cognitive side effects of treatment, cost and financial toxicity, salience of cutting-edge treatment options (clinical trial or newly approved medication), treatment logistics and convenience, personal and family responsibilities, treatment impact on daily activities, participation in self-defining endeavors, attending important events, and pursuing important goals. Physician decisions emphasized drug-specific characteristics (treatment efficacy, side effects, cost) rather than patient preferences, which might impact treatment choice. Conclusion Although both patients with MBC and oncologists considered treatment characteristics when making decisions, patients’ considerations were broader than oncologists’, incorporating contextual factors such as the innovative value of the treatment and life responsibilities. Differences in perspectives between patients and oncologists suggests the value of tools to facilitate systematic communication of preferences in the setting of MBC. Implications for Practice Both patients with metastatic breast cancer (MBC) and oncologists emphasized importance of efficacy and physical side effects when making treatment decisions. However, other patient considerations for making treatment decisions were broader, incorporating contextual factors such as the logistics of treatments, personal and family responsibilities, and ability to attend important events. Furthermore, individual patients varied substantially in priorities that they want considered in treatment decisions. Differences in perspectives between patients and oncologists suggest the value of tools to facilitate systematic elicitation of preferences and communication of those preferences to oncologists for integration into decision-making in MBC.

© 2018 American Society of Human Genetics The Clinical Sequencing Evidence-Generating Research (CSER) consortium, now in its second funding cycle, is investigating the effectiveness of integrating genomic (exome or genome) sequencing into the clinical care of diverse and medically underserved individuals in a variety of healthcare settings and disease states. The consortium comprises a coordinating center, six funded extramural clinical projects, and an ongoing National Human Genome Research Institute (NHGRI) intramural project. Collectively, these projects aim to enroll and sequence over 6,100 participants in four years. At least 60% of participants will be of non-European ancestry or from underserved settings, with the goal of diversifying the populations that are providing an evidence base for genomic medicine. Five of the six clinical projects are enrolling pediatric patients with various phenotypes. One of these five projects is also enrolling couples whose fetus has a structural anomaly, and the sixth project is enrolling adults at risk for hereditary cancer. The ongoing NHGRI intramural project has enrolled primarily healthy adults. Goals of the consortium include assessing the clinical utility of genomic sequencing, exploring medical follow up and cascade testing of relatives, and evaluating patient-provider-laboratory level interactions that influence the use of this technology. The findings from the CSER consortium will offer patients, healthcare systems, and policymakers a clearer understanding of the opportunities and challenges of providing genomic medicine in diverse populations and settings, and contribute evidence toward developing best practices for the delivery of clinically useful and cost-effective genomic sequencing in diverse healthcare settings.

Robust evidence about the value of clinical genomic interventions (CGIs), such as genetic/genomic testing or clinical genetic evaluation, is limited. We obtained stakeholders’ perspectives on outcomes from CGIs to help inform their value. We used an adapted Delphi expert panel process. Two anonymous survey rounds assessed the value of 44 CGI outcomes and whether a third party should pay for them, with discussion in between rounds. Sixty-six panelists responded to the first-round survey and 60 to the second. Policy-makers/payers gave the lowest ratings for value and researchers gave the highest. Patients/consumers had the most uncertainty about value and payment by a third party. Uncertainty about value was observed when evidence of proven health benefit was lacking, potential harms outweighed benefits for reproductive outcomes, and outcomes had only personal utility for individuals or family members. Agreement about outcomes for which a third party should not pay included prevention through surgery with unproven health benefits, establishing ancestry, parental consanguinity, and paternity. Research is needed to understand factors contributing to uncertainty and stakeholder differences about the value of CGI outcomes. Reaching consensus will accelerate the creation of metrics to generate the evidence needed to inform value and guide policies that promote availability, uptake, and coverage of CGIs.

Precision medicine promises to improve patient outcomes, but much is unknown about its adoption within health-care systems. A comprehensive implementation plan is needed to realize its benefits.We convened 80 stakeholders for agenda setting to inform precision medicine policy, delivery, and research. Conference proceedings were audio-recorded, transcribed, and thematically analyzed. We mapped themes representing opportunities, challenges, and implementation strategies to a logic model, and two implementation science frameworks provided context.The logic model components included inputs: precision medicine infrastructure (clinical, research, and information technology), big data (from data sources to analytics), and resources (e.g., workforce and funding); activities: precision medicine research, practice, and education; outputs: precision medicine diagnosis; outcomes: personal utility, clinical utility, and health-care utilization; and impacts: precision medicine value, equity and access, and economic indicators. Precision medicine implementation challenges include evidence gaps demonstrating precision medicine utility, an unprepared workforce, the need to improve precision medicine access and reduce variation, and uncertain impacts on health-care utilization. Opportunities include integrated health-care systems, partnerships, and data analytics to support clinical decisions. Examples of implementation strategies to promote precision medicine are: changing record systems, data warehousing techniques, centralized technical assistance, and engaging consumers.We developed a theory-based, context-specific logic model that can be used by health-care organizations to facilitate precision medicine implementation.

The main mission of the Genomic Applications in Practice and Prevention Network™ is to advance collaborative efforts involving partners from across the public health sector to realize the promise of genomics in healthcare and disease prevention. We introduce a new framework that supports the Genomic Applications in Practice and Prevention Network mission and leverages the characteristics of the complex adaptive systems approach. We call this framework the Genome-based Knowledge Management in Cycles model (G-KNOMIC). G-KNOMIC proposes that the collaborative work of multidisciplinary teams utilizing genome-based applications will enhance translating evidence-based genomic findings by creating ongoing knowledge management cycles. Each cycle consists of knowledge synthesis, knowledge evaluation, knowledge implementation and knowledge utilization. Our framework acknowledges that all the elements in the knowledge translation process are interconnected and continuously changing. It also recognizes the importance of feedback loops, and the ability of teams to self-organize within a dynamic system. We demonstrate how this framework can be used to improve the adoption of genomic technologies into practice using two case studies of genomic uptake.

Background We compared short-term recovery for patients discharged to inpatient rehabilitation versus skilled nursing facilities after gastrointestinal surgery. Materials & methods We conducted a propensity-matched cohort study of 12,939 adults discharged to inpatient rehabilitation or skilled nursing facilities after colectomy, pancreatectomy or hepatectomy at hospitals participating in the American College of Surgeons National Surgical Quality Improvement Program from 2011 to 2014. Primary outcomes were readmission and mortality rates 30 days after surgery. Results 9259 (72%) patients were discharged to skilled nursing facilities and 3680 (28%) to inpatient rehabilitation. Median age in both groups was 76 years and 82% of patients were white. There was no difference in 30-day readmission rates (16% for skilled nursing vs 16.8% for inpatient rehabilitation) but post-discharge mortality was higher for patients discharged to skilled nursing facilities (4.4%) compared to inpatient rehabilitation (1.6%, p Conclusions Increased utilization of inpatient rehabilitation services after gastrointestinal surgery may improve postoperative outcomes.

Lifestyle interventions must be effective at engaging participants beyond the initial intervention period in order to be successful in reducing long-term cardiovascular risks. Unfortunately, there is a lack of evidence for improvement in long-term cardiovascular outcomes following participation in lifestyle interventions. Participant engagement has been shown to wane after the first 12 months of participation. This gradual reduction in engagement may be responsible for the limited evidence for an effect on long-term cardiovascular risk. The objective of this study is to assess patient, program and community characteristics associated with better participant engagement after 2 years in a weight management program. This is an observational study of 330,522 participants enrolled in MOVE! programs within the Veterans Healthcare Administration (VHA) from 2008 to 2013. The MOVE! program is a nationwide weight management intervention integrated into primary care within the VHA and provided free to Veterans. Participant engagement is defined as the number of MOVE! program visits per year for each participant. Engagement is assessed at 6 months, 12 months, and 24 months following the first program visit. Bivariate statistics and multivariate generalized linear models were used to assess factors associated with patient engagement at each time point. At the first MOVE! visit, the average participant age was 56.3 years old (SD=12.0) with a body mass index of 36.9 [Standard Deviation (SD)=5.4). Most participants were male (87.9 and lived in an urban area (69.7%) an average of 38.6 miles from the MOVE! program (SD=48.5). Eight percent (7.5%) of participants had a Charlson Comorbidity Index of 4 or more at the time of their first visit. Engagement decreased as time from the first visit increased. Patients had a median of 4.0 visits per year at 6 months [Interquartile Range (IQR)=2.0-8.0], 2.0 visits per year at 12 months (IQR=1.0-5.0), and 1.0 visit per year at 24 months (IQR=0.5-3.0). In adjusted models of 24-month engagement, older age (beta=0.03, p

Background. While choices about genetic testing are increasingly common for patients and families, and public opinion surveys suggest public interest in genomics, it is not known how adults from the general population value genetic testing for heritable conditions. We sought to understand in a US sample the relative value of the characteristics of genetic tests to identify risk of hereditary colorectal cancer, among the first genomic applications with evidence to support its translation to clinical settings. Methods. A Web-enabled choice-format conjoint survey was conducted with adults age 50 years and older from a probability-based US panel. Participants were asked to make a series of choices between 2 hypothetical blood tests that differed in risk of false-negative test, privacy, and cost. Random parameters logit models were used to estimate preferences, the dollar value of genetic information, and intent to have genetic testing. Results. A total of 355 individuals completed choice-format questions. Cost and privacy were more highly valued than reducing the chance of a false-negative result. Most (97% [95% confidence interval (CI)], 95%–99%) would have genetic testing to reduce the risk of dying of colorectal cancer in the best scenario (no false negatives, results disclosed to primary care physician). Only 41% (95% CI, 25%–57%) would have genetic testing in the worst case (20% false negatives, results disclosed to insurance company). Conclusions. Given the characteristics and levels included in the choice, if falsenegative test results are unlikely and results are shared with a primary care physician, the majority would have genetic testing. As genomic services become widely available, primary care professionals will need to be increasingly knowledgeable about genetic testing decisions. Key words: genetics; oncology; internal medicine; discrete choice; utility assessment. (Med Decis Making XXXX;XX: xx–xx)

Adherence to pulmonary rehabilitation (PR) is low. Previous studies have focused on clinical predictors of PR completion. We aimed to identify social determinants of adherence to PR. A cross-sectional analysis of a database of COPD patients (N = 455) in an outpatient PR program was performed. Adherence, a ratio of attended-to-prescribed sessions, was coded as low (85%). Individual-level measures included age, sex, race, BMI, smoking status, pack-years, baseline 6-minute walk distance (6MWD: 30). Fifteen area-level measures aggregated to Census tracts were obtained from the U.S. Census after geocoding patients' addresses. Using exploratory factor analysis, a neighborhood socioeconomic disadvantage index was constructed, which included variables with factor loading >0.5: poverty, public assistance, households without vehicles, cost burden, unemployment, and minority population. Multivariate regression models were adjusted for clustering on Census tracts. Twenty-six percent of patients had low adherence, 23% were moderately adherent, 51% were highly adherent. In the best fitted full model, each decile increase in neighborhood socioeconomic disadvantage increased the risk of moderate vs high adherence by 14% (p

Objectives To examine the concordance between clinicians and men diagnosed with prostate cancer on a clinician-derived pathophysiological classification of the following self-reported urinary complications: storage (irritative), voiding (obstructive), and leakage/incontinence. Materials and methods Fourteen urology experts classified 37 urinary function questionnaire items into 3 primary conceptual dimensions (e.g., storage [irritative], voiding [obstructive] and urinary leakage/incontinence) that would best reflect each item's content. In addition, 218 patient participants provided responses to the 37 items. Using classifications by experts to develop the conceptual framework, the structure was tested using confirmatory factor analyses with patient data. Results Expert consensus was achieved in the classification of 31 out of 37 items. Using the 3-factor conceptual framework and patient data, the fit indices for the overall correlated factor model suggested an acceptable overall model fit. The analyses of the separate domains showed acceptable fit for the storage/irritative domain and the leaking/incontinence domain. The dimensionality of the voiding/obstructive domain was too difficult to estimate. Conclusions Our analysis found items that conceptually and psychometrically support 2 constructs (leaking/incontinence and storage/irritative). The consistency of this support between the groups suggests a clinical relevance that is useful in treating patients. We have conceptual support for a third hypothesis (voiding/obstructive), although there were too few items to assess this psychometrically. Relative motivating factors of bother and urinary complaints were not addressed and remain an unmet need in this field.

Background We know little about patient–physician communication during visits to discuss diagnosis and treatment of prostate cancer. Objective To examine the overall visit structure and how patients and physicians transition between communication activities during visits in which patients received new prostate cancer diagnoses. Participants Forty veterans and 18 urologists at one VA medical centre. Methods We coded 40 transcripts to identify major communication activities during visits and used empiric discourse analysis to analyse transitions between activities. Results We identified five communication activities that occurred in the following typical sequence: ‘diagnosis delivery’, ‘risk classification’, ‘options talk’, ‘decision talk’ and ‘next steps’. The first two activities were typically brief and involved minimal patient participation. Options talk was typically the longest activity; physicians explicitly announced the beginning of options talk and framed it as their professional responsibility. Some patients were unsure of the purpose of visit and/or who should make treatment decisions. Conclusion Visits to deliver the diagnosis of early stage prostate cancer follow a regular sequence of communication activities. Physicians focus on discussing treatment options and devote comparatively little time and attention to discussing the new cancer diagnosis. Towards the goal of promoting patient-centred communication, physicians should consider eliciting patient reactions after diagnosis delivery and explaining the decision-making process before describing treatment options.