Search

Background Innovative interventions are needed to address gaps in preventive cancer care, especially in rural areas. This study evaluated the impact of clinical decision support (CDS) with and without shared decision making (SDM) on cancer-screening completion. Methods In this 3-arm, parallel-group, cluster-randomized trial conducted at a predominantly rural medical group, 34 primary care clinics were randomized to clinical decision support (CDS), CDS plus shared decision making (CDS+SDM), or usual care (UC). The CDS applied web-based clinical algorithms identifying patients overdue for United States Preventive Services Task Force–recommended preventive cancer care and presented evidence-based recommendations to patients and providers on printouts and on the electronic health record interface. Patients in the CDS+SDM clinic also received shared decision-making tools (SDMTs). The primary outcome was a composite indicator of the proportion of patients overdue for breast, cervical, or colorectal cancer screening at index who were up to date on these 1 y later. Results From August 1, 2018, to March 15, 2019, 69,405 patients aged 21 to 74 y had visits at study clinics and 25,198 were overdue for 1 or more cancer screening tests at an index visit. At 12-mo follow-up, 9,543 of these (37.9%) were up to date on the composite endpoint. The adjusted, model-derived percentage of patients up to date was 36.5% (95% confidence interval [CI]: 34.0–39.1) in the UC group, 38.1% (95% CI: 35.5–40.9) in the CDS group, and 34.4% (95% CI: 31.8–37.2) in the CDS+SDM group. For all comparisons, the screening rates were higher than UC in the CDS group and lower than UC in the CDS+SDM group, although these differences did not reach statistical significance. Conclusion The CDS did not significantly increase cancer-screening rates. Exploratory analyses suggest a deeper understanding of how SDM and CDS interact to affect cancer prevention decisions is needed. Trial registration: ClinicalTrials.gov ID: NCT02986230, December 6, 2016.

BACKGROUND Clinical decision support (CDS) has the potential to improve clinical decision making consistent with evidence-based care. CDS can be designed to save providers time and help them provide safe and personalized analgesic prescribing. OBJECTIVE To describe the development and implementation of a clinical decision support system (CDS) designed to provide dentists with personalized pain management recommendations for patients at the point of care using electronic health record (EHR) information. METHODS HealthPartners Dental Group uses an EHR system that integrates both medical and dental information upon which the SMART on FHIR based CDS application was developed. The CDS draws upon best evidence data and patient characteristics to help dentists with decisions regarding pain management related to dental extractions. The CDS application runs a home-grown drug interaction algorithm against a patient’s medical history and provides patient-specific recommendations. We utilized RxNorm level codes and NLM RxNorm API to obtain ingredient-level information for the patient’s medication list. The CDS included access to the state Prescription Monitoring Program database. RESULTS The pain management CDS was implemented as part of a study examining opioid prescribing among patients undergoing dental extraction procedures from 2/17/20 - 5/14/21. Among the 20 clinics with providers assigned to the intervention arms, 95.0% (19/20) had at least one extraction encounter with the CDS opened. The app was opened more frequently by general dentists than oral surgeons. CONCLUSIONS The pain management CDS is an EHR-embedded, provider-facing tool to help dentists make personalized pain management recommendations following dental extractions. The SMART on FHIR based pain management CDS adapted well into the point-of-care dental setting and helped us to design a scalable CDS tool that is EHR vendor-agnostic. CLINICALTRIAL Clinicaltrials.gov NCT03584789

Background Tobacco smoking is the leading cause of disease, death, and disability in the United States. Dental practitioners are advised to provide evidence-based smoking cessation interventions to their patients, yet dental practitioners frequently fail to deliver brief smoking cessation advice. Objectives To test whether giving dental practitioners a clinical decisions support (CDS) system embedded in their electronic dental record would increase the rate at which patients who smoke 1) report receiving a brief intervention or referral to treatment during a recent dental visit, 2) taking action related to smoking cessation within 7 days of visit, and 3) stop smoking for one day or more or reduce the amount smoked by 50% within 6 months. Methods Two-group, parallel arm, cluster-randomized trial. From March through December 2019, 15 non-academic primary care dental clinics were randomized via covariate adaptive randomization to either a usual care arm or the CDS arm. Adult smokers completed an initial telephone survey within 7 days of their visit and another survey after 6 months. Results Forty-three patients from 5 CDS and 13 patients from 2 usual care clinics completed the 7-day survey. While the proportion of patients who reported receipt of a brief intervention or referral to treatment was significantly greater in the CDS arm than the usual care arm (84.3% versus 58.6%; p = 0.005), the differences in percentage of patients who took any action related to smoking cessation within 7 days (44.4% versus 22.3%; p= 0.077), or stopped smoking for one day or more and/or reduced amount smoked by 50% within 6 months (63.1% versus 46.2%; p = 0.405) were large but not statistically significant. Conclusions Despite interruption by Covid-19, these results demonstrate a promising approach to assist dental practitioners in providing their patients with smoking cessation screening, brief intervention and referral to treatment.

The purpose of this scoping review was to evaluate the current literature related to vocational outcomes among US service members and veterans with traumatic brain injury (TBI).Seven research databases (Ovid MEDLINE, PsycINFO, EMBASE, CINAHL Plus, Cochrane Library, Scopus, and SPORTDiscus) were queried for human studies between the database inception and February, 2020. We included studies that focused on US service members and veterans who sustained a TBI and their vocational outcomes. Conference abstracts, systematic reviews, literature reviews, editorials, consensus reports, commentaries, dissertations, and qualitative studies were excluded. Two rounds of independent reviews were performed. Details of study design, intervention, and vocational outcomes were recorded.The search yielded 5667 articles; 48 articles met inclusion criteria. Forty-three studies were observational (90%), and 5 were randomized controlled trials. A majority of interventions were in the outpatient setting (71%). Interventions related to return to work and duty utilized physical therapy and occupational therapy to address cognitive skills and functional deficits and provide supportive employment.Community reintegration research among service members and veterans with brain injuries is underdeveloped. Because of heterogeneity of severity and smaller sample sizes, no consensus was reached on interventions that improve vocational outcomes. Evidence thus far suggests that future studies should incorporate an interdisciplinary team approach beyond physical therapy and occupational therapy, longer-term outcomes, and sample subgroups.

D Brad Rindal,1 Stephen E Asche,1 Sheryl Kane,1 Anjali R Truitt,1 Donald C Worley,1 Lauryn M Davin,1 Jan Gryczynski,2 Shannon G Mitchell2 1HealthPartners Institute, Minneapolis, MN, USA; 2Friends Research Institute, Baltimore, MD, USACorrespondence: D Brad RindalHealthPartners Institute, 8170 33rd Ave. So. MS21112R, Minneapolis, MN, 55444, USATel +1 952-967-5026Email Donald.b.rindal@healthpartners.comIntroduction: Reports examining opioid prescribing for dental conditions are limited and do not examine patient-level factors. This study examines the association of patient age, sex, race, ethnicity, Medicaid coverage, and the need for an interpreter in addition to procedure type and dental provider type with receipt of an opioid prescription in dental care settings within a large health system.Materials and Methods: This study was conducted utilizing data from the electronic health record of HealthPartners, a large dental practice embedded within a health care system. The analytic sample consisted of all 169,173 encounters from 90,487 patients undergoing a dental procedure in the baseline period (9/1/2018 to 8/30/2019), prior to implementing a clinical trial to de-implement opioids in dentistry.Results: Opioids were prescribed at 1.9% of all 169,173 encounters and rates varied by patient factors, procedure category, and provider type. Opioid prescriptions were most likely for extraction encounters (25.9%). In a multivariable analysis of 8760 extraction encounters, all patient age groups were more likely than those age 66+ to receive an opioid prescription, particularly those age 18– 25 (OR=6.94). Patients having a complex rather than simple extraction were more likely to receive an opioid prescription (OR=6.31) and those seen by an oral surgeon rather than a general dentist (OR=9.11) were more likely to receive an opioid prescription. Among 108,748 encounters with a diagnostic procedure, opioid prescribing was more likely among male than female patients (OR=1.20), Black patients relative to White (OR=1.69), patients with Medicaid coverage (OR=1.86), and patients seeing an oral surgeon rather than a general dentist (OR=27.81).Conclusion: Opioid prescribing rates vary considerably depending on procedure type. Patterns of associations between patient factors and opioid prescribing also vary considerably across procedure type. To understand which patient groups are more at risk of being prescribed opioids, it is essential to consider the procedures they are receiving.Keywords: dentistry, oral surgical procedures, analgesics, opioid, prescribing, practice patterns

Introduction. This study explores the ways in which racism-related stress affects the well-being and career trajectories of Black nursing professionals and certified nursing assistants and their strategies for coping with such stress. Method. Semistructured interviews were conducted to explore racism-related stress and coping strategies. Data were analyzed using content analysis. Results. Findings illuminate how Black nursing professionals and certified nursing assistants experience both subtle and explicit racism in the workplace from a variety of actors, including patients, peers, and supervisors. Coping strategies included consultation with personal support systems, such as friends outside of work or family members. Participants described barriers to advancement, including disparate educational and mentoring experiences, and a lack of policies or standards to address racial bias and discrimination in their work settings. Discussion. Facilitating diversity in nursing and supporting nursing professionals of color requires multipronged approaches that include collaborations between education systems and employers.

Background: Patient–provider race concordance has been argued as one way to improve patient–provider communication, patient satisfaction, and even patient outcomes. However, much of this literature focuses on or assumes that both patients and providers identify with only one race. Objective: The purpose of this study was to understand multiracial patients’ preferences in choosing a health-care provider. Methods: We conducted 15 interviews and 3 focus groups. We performed a directed content analysis to understand participants’ expressed preferences. Results: Thirty-one participants shared their health-care preferences. Participants described proximity to their homes or work, convenience in terms of availability, and health insurance coverage as reasons for selecting a provider. The majority articulated preferences related to provider gender and race. However, participants noted key barriers to receiving care from their preferred providers. Conclusion: This study highlights the preferences for health-care providers and the factors influencing those preferences and decisions among multiracial individuals. Findings illustrate the need to increase health workforce diversity, especially among primary care providers. Findings also show the need for increased empathy and cultural sensitivity among health-care professionals.

Background: Understanding how adolescent patients and their parents make decisions about pain management after complex dental procedures could help reduce the use of opioid medications in this population. This study explored how adolescent patients and their parents make decisions about pain management after third molar extractions.Methods: Participants were identified from administrative databases based on age (15-17 years) and a dental extraction performed in the last 8 days. Structured interviews were conducted by phone, with interview guides tailored separately to patients and parents. De-identified interview transcripts were analyzed using qualitative analysis software using a directed content analysis approach.Results: A total of 15 patient/parent dyads were interviewed. There was high concordance in terms of shared decision-making and pain management views in this dyadic sample. In addition to conversations with their dentist, most patients and their parents discussed pain management plans that included non-medication options, over-the-counter medications, and opioid medications to be taken as needed. All participants reported that the adolescent received an opioid prescription for post-extraction pain management but most only took it the day of the extraction and up to 2 days following, usually based on the patient’s reported pain levels and perceptions of over-the-counter medication adequacy. Participants said they did not receive guidance from their provider concerning disposal of unused opioid medications. Conclusions: Shared decision-making concerning pain management was common for adolescents and their parents following third molar extractions. Providers may have an opportunity to reduce the number of opioids prescribed, since respondents reported little to no use of opioids that they were prescribed. Providers should educate patients and their parents about safe disposal of opioids to mitigate the potential for diversion.Trial registration: not applicable

Background Overdose deaths from prescription opioid analgesics are a continuing crisis in the United States. Opioid analgesics are among the most frequently prescribed drugs by dentists. An estimated 5 million people undergo third-molar extractions in the United States each year, resulting in postoperative pain. Studies show that, in most cases, the combination of ibuprofen and acetaminophen is an effective alternative to commonly prescribed opioid analgesics for the management of postextraction pain. Nevertheless, many dentists routinely prescribe opioids after dental extractions. Objective We describe the rationale, design, and methods for a randomized trial of interventions designed to de-implement opioid prescribing by dentists while implementing effective nonopioid analgesics following dental extractions. Methods Using a prospective, 3-arm, cluster randomized trial design with dentists as the unit randomized and patient-level prescribing data as the primary outcome, we will compare different strategies to reduce the reliance on opioids and increase the use of alternative pain management approaches utilizing information support tools aimed at both providers and their patients. The study will test the efficacy of 2 interventions to decrease opioid prescribing following dental extractions: clinical decision support with (CDS-E) and without patient education (CDS). Providers will be randomized to CDS, CDS-E, or standard practice. Patient-level outcomes will be determined via review of comprehensive electronic health records. We will compare study arms on differential change in prescribing patterns from pre- to postimplementation of the intervention. The primary outcome of interest is a binary indicator of whether or not the patient received an opioid prescription on the day of the extraction encounter. We will also examine recommendations or prescriptions for nonopioid analgesics, patients’ perceptions of shared decision making, and patients’ pain experiences following the extraction. Results The HealthPartners Institutional Review Board approved the study. All study materials including the CDS and patient education materials have been developed and pilot tested, and the protocol has been approved by the National Institute of Dental and Craniofacial Research. The intervention was implemented in February 2020, with 51 dentists who were randomized to 1 of the 3 arms. Conclusions If the intervention strategies are shown to be effective, they could be implemented more broadly in dental settings with high levels of opioid prescribing. Trial Registration ClinicalTrials.gov NCT03584789, https://clinicaltrials.gov/ct2/show/NCT03584789 International Registered Report Identifier (IRRID) DERR1-10.2196/24342

BACKGROUND Overdose deaths from prescription opioid analgesics are a continuing crisis in the United States. Opioid analgesics are among the most frequently prescribed drugs by dentists. An estimated 5 million people undergo third-molar extractions in the United States each year, resulting in postoperative pain. Studies show that, in most cases, the combination of ibuprofen and acetaminophen is an effective alternative to commonly prescribed opioid analgesics for the management of postextraction pain. Nevertheless, many dentists routinely prescribe opioids after dental extractions. OBJECTIVE We describe the rationale, design, and methods for a randomized trial of interventions designed to de-implement opioid prescribing by dentists while implementing effective nonopioid analgesics following dental extractions. METHODS Using a prospective, 3-arm, cluster randomized trial design with dentists as the unit randomized and patient-level prescribing data as the primary outcome, we will compare different strategies to reduce the reliance on opioids and increase the use of alternative pain management approaches utilizing information support tools aimed at both providers and their patients. The study will test the efficacy of 2 interventions to decrease opioid prescribing following dental extractions: clinical decision support with (CDS-E) and without patient education (CDS). Providers will be randomized to CDS, CDS-E, or standard practice. Patient-level outcomes will be determined via review of comprehensive electronic health records. We will compare study arms on differential change in prescribing patterns from pre- to postimplementation of the intervention. The primary outcome of interest is a binary indicator of whether or not the patient received an opioid prescription on the day of the extraction encounter. We will also examine recommendations or prescriptions for nonopioid analgesics, patients’ perceptions of shared decision making, and patients’ pain experiences following the extraction. RESULTS The HealthPartners Institutional Review Board approved the study. All study materials including the CDS and patient education materials have been developed and pilot tested, and the protocol has been approved by the National Institute of Dental and Craniofacial Research. The intervention was implemented in February 2020, with 51 dentists who were randomized to 1 of the 3 arms. CONCLUSIONS If the intervention strategies are shown to be effective, they could be implemented more broadly in dental settings with high levels of opioid prescribing. CLINICALTRIAL ClinicalTrials.gov NCT03584789, https://clinicaltrials.gov/ct2/show/NCT03584789 INTERNATIONAL REGISTERED REPORT DERR1-10.2196/24342

Background Despite decades of research the gap in primary and secondary cancer prevention services in the U. S. remains unacceptably wide. Innovative interventions are needed to address this persistent challenge. Electronic health records linked with Web-based clinical decision support may close this gap, especially if delivered to both patients and their providers. Objectives The Cancer Prevention Wizard (CPW) study is an implementation, clinic-randomized trial designed to achieve these aims: 1) assess impact of the Cancer Prevention Wizard-Clinical Decision Support (CPW-CDS) alone and CPW-CDS plus Shared Decision Making Tools (CPW + SDMTs) compared to usual care (UC) on tobacco cessation counseling and drugs, HPV vaccinations, and screening tests for breast, cervical, colorectal, or lung cancer; 2) assess cost of the CPW-CDS intervention; and 3) describe critical facilitators and barriers for CPW-CDS implementation, use, and clinical impact using a mixed-methods approach supported by the CFIR and RE-AIM frameworks. Methods 34 predominantly rural, primary care clinics were randomized to CPW-CDS, CPW + SMDTs, or UC. Between August 2018 and October 2020, primary care providers and their patients who met inclusion criteria in intervention clinics were exposed to the CPW-CDS with or without SDMTs. Study outcomes at 12 months post index visit include patients up to date on screening tests and HPV vaccinations, overall healthcare costs, and diagnostic codes and billing levels for cancer prevention services. Conclusions We will test in rural primary care settings whether CPW-CDS with or without SDMTs can improve delivery of primary and secondary cancer prevention services. The trial and analyses are ongoing with results expected in 2021.

Background Black women with endometrial cancer (EC) are diagnosed at advanced stages and have markedly high mortality rates compared with women of other races. EC disparities research lacks both qualitative work and engagement of Black women. We sought to describe developing a community-research partnership to examine EC among Black women. Methods We apply the Public Health Critical Race (PCHR) praxis to examine how race and racism shaped our partnership development. We used story telling, goal setting, and iterative collaboration tools to build our relationship and research study. Results Common racial and gender identities played an important role in establishing partnership. Active management of historical institutional discrimination, co-learning activities, and transparency were critical to successful collaboration and research development. Conclusions Using community engagement and race-conscious approaches, we laid the groundwork for addressing a major knowledge gap in racial inequity in EC.

Purpose Illuminating patients' experiences of microaggressions in health care settings can help practitioners develop care that is more culturally responsive. While much of the literature on health care disparities focuses on minority groups generally, we sought to identify and to describe the ways in which racial microaggressions manifest for multiracial individuals and families specifically. Methods Using a combination of interviews and focus groups, we conducted 15 interviews and 3 focus groups. Eligible participants self-identified as more than one race and/or they self-identified as part of an interracial family, and they and/or someone they considered to be part of their family received health care in the past 12 months. We performed a content analysis to describe the dominant ways racial microaggressions presented in health care interactions. Results A total of 31 participants shared their experiences in health care settings, including their experiences with racism, racial bias, and microaggressions. Based on their experiences, we describe 6 prevalent microaggressions: mistaken identity, mistaken relationships, fixed forms, entitled examiner, pervasive stereotypes, and intersectionality. Many acknowledged their experiences with racial microaggressions in health care were similar to those they experienced in everyday settings; however, the power dynamics differed in health care. Conclusions Understanding patient perspectives about racial microaggressions suggests opportunities to improve patient-provider communication. For multiracial individuals and families, racial microaggressions may have implications for patient engagement in health care. Findings of this study highlight implications for theory and research as well as opportunities to facilitate systematic improvements in the provision of culturally responsive health care services.

Background The extent to which participants act to clinically verify research results is largely unknown. This study examined whether participants who received Lynch syndrome (LS)-related findings pursued researchers’ recommendation to clinically verify results with testing performed by a CLIA-certified laboratory. Methods The Fred Hutchinson Cancer Research Center site of the multinational Colon Cancer Family Registry offered non-CLIA individual genetic research results to select registry participants (cases and their enrolled relatives) from 2011 to 2013. Participants who elected to receive results were counseled on the importance of verifying results at a CLIA-certified laboratory. Twenty-six (76.5%) of the 34 participants who received genetic results completed 2- and 12-month postdisclosure surveys; 42.3% of these (11/26) participated in a semistructured follow-up interview. Results Within 12 months of result disclosure, only 4 (15.4%) of 26 participants reported having verified their results in a CLIA-certified laboratory; of these four cases, all research and clinical results were concordant. Reasons for pursuing clinical verification included acting on the recommendation of the research team and informing future clinical care. Those who did not verify results cited lack of insurance coverage and limited perceived personal benefit of clinical verification as reasons for inaction. Conclusion These findings suggest researchers will need to address barriers to seeking clinical verification in order to ensure that the intended benefits of returning genetic research results are realized.

A cornerstone of patient-centered outcome research is direct patient involvement throughout the research process. Identifying and prioritizing research topics is a critical but often overlooked point for involvement, as it guides what research questions are asked. We assess the feasibility of involving individuals with low back pain in identifying and prioritizing research topics using two approaches: an existing patient registry and an online crowdsourcing platform. We compare and contrast the diversity of participants recruited, their responses, and resources involved. Eligible participants completed a survey ranking their five highest priority topics from an existing list and supplying additional topics not previously identified. We analyzed their responses using descriptive statistics and content analysis. The patient registry yielded older (mean age 72.4), mostly White (70%), and well-educated (95% high school diploma or higher) participants; crowdsourcing yielded younger (mean age 36.6 years), mostly White (82%), and well-educated (98% high school diploma or higher) participants. The two approaches resulted in similar research priorities by frequency. Both provided open-ended responses that were useful, in that they illuminate additional and nuanced research topics. Overall, both approaches suggest a preference towards topics related to diagnosis and treatment over other topics. Using a patient registry and crowdsourcing are both feasible recruitment approaches for engagement. Researchers should consider their approach, community, and resources when choosing their recruitment approach, as each approach has its own strengths and weaknesses. These approaches are likely most appropriate to supplement or to complement in-person and ongoing engagement strategies.

Background Cancer is a leading cause of death in the United States. Primary care providers (PCPs) juggle patient cancer prevention and screening along with managing acute and chronic health problems. However, clinical decision support (CDS) may assist PCPs in addressing patients’ cancer prevention and screening needs during short clinic visits. In this paper, we describe pre-implementation study design and cancer screening and prevention CDS changes made to maximize utilization and better fit a healthcare system’s goals and culture. We employed the Consolidated Framework for Implementation Research (CFIR), useful for evaluating the implementation of CDS interventions in primary care settings, in understanding barriers and facilitators that led to those changes. Methods In a three-arm, pragmatic, 36 clinic cluster-randomized control trial, we integrated cancer screening and prevention CDS and shared decision-making tools (SDMT) into an existing electronic medical record-linked cardiovascular risk management CDS system. The integrated CDS is currently being tested within a predominately rural upper Midwestern healthcare system. Prior to CDS implementation, we catalogued pre-implementation changes made from 2016 to 2018 based on: pre-implementation site engagement; key informant interviews with healthcare system rooming staff, providers, and leadership; and pilot testing. We identified influential barriers, facilitators, and changes made in response through qualitative content analysis of meeting minutes and supportive documents. We then coded pre-implementation changes made and associated barriers and facilitators using the CFIR. Results Based on our findings from system-wide pre-implementation engagement, pilot testing, and key informant interviews, we made changes to accommodate the needs of the healthcare system based on barriers and facilitators that fell within the Intervention Characteristics, Inner Setting, and Outer Setting CFIR domains. Changes included replacing the expansion of medical assistant roles in one intervention arm with targeted SDMT, as well as altering cancer prevention CDS and study design elements. Conclusions Pre-implementation changes to CDS may help meet healthcare systems’ evolving needs and optimize the intervention by being responsive to real-world implementation barriers and facilitators. Frameworks like the CFIR are useful tools for identifying areas where pre-implementation barriers and facilitators may result in design changes, both to research studies and CDS systems. Trial registration NCT02986230.

Background Imaging tests are one of the most sophisticated types of diagnostic tools used in health care, yet there are concerns that imaging is overused. Currently, tests are typically evaluated and implemented based on their accuracy, and there is limited knowledge about the range of patient-centered outcomes (PCOs) that imaging tests may lead to. This study explores patients’ experiences and subsequent outcomes of imaging tests most notable to patients. Methods Adult patients from four primary care clinics who had an x-ray, CT, MRI, or ultrasound in the 12 months before recruitment participated in a single semistructured interview to recount their imaging experience. Interview transcripts were analyzed thematically. Results Four themes related to PCOs were identified from 45 interviews. Participants’ mean age was 53 years (25-83 years), 30 had undergone a diagnostic imaging test, and 15 underwent imaging for screening or monitoring. Themes included knowledge gained from the imaging test, its contribution to their overall health care journey, physical experiences during the test procedure, and impacts of the testing process on emotions. Conclusions Patients identified various imaging test outcomes that were important to them. Measurement and reporting these outcomes should be considered more often in diagnostic research. Tools for providers and patients to discuss and utilize these outcomes may help promote shared decision making around the use and impact of imaging tests.

Background: Informed consent is one of the major ethical issues raised in conversations about prenatal genetic testing, and understanding of the risks and benefits is a key component of informed consent. Because newspapers help translate complex scientific developments into understandable, practical insights, they can influence understanding of prenatal genetic testing outside of the clinical encounter. We assess the extent to which newspaper articles address concerns about accurately portraying cell-free fetal DNA testing and discuss how they create what we consider to be unrealistic expectations about this methodology. Methods: LexisNexis Academic was searched for United States-based newspapers to identify articles including discussion about cell-free fetal DNA testing for Down syndrome. This broad search yielded 447 articles. Two independent coders reviewed these articles for adherence to a specific set of inclusion criteria, and discrepancies were reconciled through consensus. Articles meeting the inc...

Background: The involvement of patients in research better aligns evidence generation to the gaps that patients themselves face when making decisions about health care. However, obtaining patients’ perspectives is challenging. Amazon’s Mechanical Turk (MTurk) has gained popularity over the past decade as a crowdsourcing platform to reach large numbers of individuals to perform tasks for a small reward for the respondent, at small cost to the investigator. The appropriateness of such crowdsourcing methods in medical research has yet to be clarified. Objective: The goals of this study were to (1) understand how those on MTurk who screen positive for back pain prioritize research topics compared with those who screen negative for back pain, and (2) determine the qualitative differences in open-ended comments between groups. Methods: We conducted cross-sectional surveys on MTurk to assess participants’ back pain and allow them to prioritize research topics. We paid respondents US $0.10 to complete the 24-point Roland Morris Disability Questionnaire (RMDQ) to categorize participants as those “with back pain” and those “without back pain,” then offered both those with (RMDQ score ≥7) and those without back pain (RMDQ

Background: Involving patients as partners in research is a defining characteristic of patient-centered outcomes research (PCOR). While patients’ experiential knowledge of a health condition or treatment may yield research priorities not reflected by researchers and policy makers, the methods for identifying and effectively collaborating with patients are still evolving. Patient registries and crowdsourcing may offer ease of access and convenience to both researchers and patients. Surveys and focus groups, including online modalities, have been described for prioritizing research topics. However, little is known about how these different methods compare in producing consistent priorities and similar perceptions of engagement quality among participants. Objective: The aims of this study are (1) to compare how different engagement methods used to elicit patient priorities for research perform as measured by rankings for priorities generated and participant satisfaction; and (2) to determine characteristics of individuals choosing to participate in research prioritization activities. Methods: Participants in the Back pain Outcomes using Longitudinal Data (BOLD) patient registry, established to evaluate the natural history of back pain among individuals 65 years and older, and participants on the Amazon Mechanical Turk (MTurk) crowdsourcing platform, to provide input on priorities for research via a questionnaire, are invited. For BOLD participants, we subsequently randomize interested respondents to 1 of 3 interactive prioritization activities to further develop priorities: a Delphi panel, an online crowd voting activity, or an in-person facilitated prioritization activity using nominal group technique (NGT). Participants involved in each activity complete a survey to evaluate the quality of the experience and a subset of these participants discuss their experience further in an interview. Descriptive statistics are used to characterize the rankings produced by each method and compare the top 5 rated topics resulting from each prioritization activity. We use rank-ordered logistic regression models to identify associations of the ranked priority topics with baseline patient characteristics. We analyze responses to the evaluation using a mixed-methods approach wherein we tabulate responses to Likert-scale questions and use content analysis to enumerate themes emerging from interviews for the 3 activities. Results: In Phase I, we invite approximately 3000 BOLD participants and 500 Amazon MTurk workers to complete a research topic prioritization survey. Based on these results, we include additional topics into a subsequent prioritization survey. In Phase II, we invite BOLD participants to join 1 of 3 activities: 90 participants for Delphi panel, 100 participants for crowd voting, and 60 participants for focus groups. Of the Phase II participants, 30 will be interviewed to evaluate the activities. Conclusions: This study informs decisions about how to conduct outreach to patient registry participants for providing input on research priorities, how individuals 65 years and older wish to participate in engagement activities, and how different research prioritization methods compare in terms of rankings generated and participant satisfaction. [JMIR Res Protoc 2017;6(9):e168]

Brain–Computer Interface (BCI) research is an interdisciplinary area of study within Neural Engineering. Recent interest in end-user perspectives has led to an intersection with user-centered design (UCD). The goal of user-centered design is to reduce the translational gap between researchers and potential end users. However, while qualitative studies have been conducted with end users of BCI technology, little is known about individual BCI researchers’ experience with and attitudes towards UCD. Given the scientific, financial, and ethical imperatives of UCD, we sought to gain a better understanding of practical and principled considerations for researchers who engage with end users. We conducted a qualitative interview case study with neural engineering researchers at a center dedicated to the creation of BCIs. Our analysis generated five themes common across interviews. The thematic analysis shows that participants identify multiple beneficiaries of their work, including other researchers, clinicians working with devices, device end users, and families and caregivers of device users. Participants value experience with device end users, and personal experience is the most meaningful type of interaction. They welcome (or even encourage) end-user input, but are skeptical of limited focus groups and case studies. They also recognize a tension between creating sophisticated devices and developing technology that will meet user needs. Finally, interviewees espouse functional, assistive goals for their technology, but describe uncertainty in what degree of function is “good enough” for individual end users. Based on these results, we offer preliminary recommendations for conducting future UCD studies in BCI and neural engineering.

Background Historical training instructs surgeons to, “never let the sun set on a small bowel obstruction (SBO)” due to concern for bowel ischemia. However, the routine use of computed tomography scans for ruling out ischemia provides the opportunity for trial of nonoperative management, allowing time for resolution of adhesive SBO. In light of advances in practice, little is known about how surgeons manage these patients, in particular, whether there is consistency in the stated duration for safe nonoperative management. Methods Using a case vignette (a patient with computed tomography scan diagnosed complete SBO without bowel ischemia), we interviewed a purposive sample of general surgeons practicing in Washington State to understand stated approaches to clinical management. Interview questions addressed typical practice, preferred timing of surgery, and approach. We conducted a content analysis to understand current practice and attitudes. Results We interviewed 15 surgeons practicing across Washington State. Surgical practice patterns for patients with SBO varied widely. The period of time that surgeons were willing to manage patients nonoperatively ranged from 1-7 d. Interviews revealed insight into surgical decision-making, the importance of patient preferences, variation in practice, and evidence gaps. All surgeons acknowledged a lack of evidence to support appropriate management of patients with SBO. Conclusions Interviews with practicing surgeons highlight a changing paradigm away from routine early surgery for patients with adhesive SBO. However, there is lack of consensus in the appropriate duration of nonoperative management and practices vary considerably. These revealed attitudes inform the feasibility and design of future randomized studies of patients with adhesive SBO.

Consequences of major burn injuries often include losing the ability to engage in basic life functions such as work or employment. As this is a developing area of importance in burn care, the goal of this study was to perform a systematic review of the burn literature to ascertain a comprehensive view of the literature and identify return to work (RTW) factors where possible. A search was conducted and peer-reviewed studies that investigated predictors and barriers of returning to work of those with burn injuries, published since 1970 and written in English, were examined. From the 216 articles initially identified in the search, 26 studies were determined to meet inclusion criteria. Across studies, the mean age was 33.63 years, the mean TBSA was 18.94%, and the average length of stay was 20 days. After 3.3 years (41 months) postburn, 72.03% of previously employed participants had returned to some form of work. Important factors of RTW were identified as burn location, burn size, treatment variables, age, pain, psychosocial factors, job factors, and barriers. This systematic review suggests multiple conclusions. First, there is a significant need for attention to this area of study given that nearly 28% of all burn survivors never return to any form of employment. Second, the RTW literature is in need of coherent and consistent methodological practices, such as a sound system of measurement. Finally, this review calls for increased attention to interventions designed to assist survivors' ability to function in an employed capacity.

Neural devices now under development stand to interact with and alter the human brain in ways that may challenge standard notions of identity, normality, authority, responsibility, privacy and justice.

Background There remain significant knowledge gaps in our understanding of aging with long-term disability. It is possible that important advances in knowledge could be gained using existing secondary data sets. However, little is known regarding which of the data sets available to researchers contain the age-related measures needed for this purpose, specifically age of onset and/or duration of disability measures. Objective To better understand the capacity to investigate aging with long-term disability (e.g. mobility limitation) and aging with long-term chronic conditions (e.g. spinal cord injury, multiple sclerosis) using extant data. Methods Public use national and regional data sets were identified through existing reports, web-based searches, and expert nomination. The age- and disability-related variables, including age of onset and duration of disability, were tabulated for data sets meeting inclusion criteria. Analysis was descriptive. Results A total of N = 44 data sets were reviewed. Of these, 22 contained both age and disability variables. Within these 22 data sets, 9 contained an age of onset or duration of disability variable. Six of the nine data sets contained age of diagnosis for a single or set of health conditions. Onset of functional limitation is in two, and onset of self-reported and/or employment disability is in four, of the nine data sets respectively. Conclusions There is some, but limited opportunity to investigate aging with long-term disability in extant U.S. public use secondary data sets.

ObjectiveThis study sought to better understand the prevalence and the severity of secondary health conditions in individuals with postpolio syndrome (PPS) as well as the association between these conditions and aging.DesignA scoping literature review was conducted searching electronic datab

Health care providers need to be alert to secondary conditions that might develop after stroke so that these conditions can be prevented or treated early to reduce further deterioration of health and quality of life.To review and describe the prevalence of secondary conditions after stroke and to summarize associations between secondary conditions and age and time post stroke.A scoping review of studies pertaining to secondary conditions after stroke published between 1986 and 2011 was conducted.Seventy-six articles provided information regarding 6 secondary conditions: depression, pain, falls, fatigue, bowel/bladder problems, and sleep difficulties. Prevalence varied widely across studies for each condition. The limited repeated-measures evidence suggests that secondary conditions tend to occur in the first weeks or months post stroke and may remain relatively stable over time. Other evidence from regression analyses suggests either no significant associations between time post stroke or age or mixed results. Secondary conditions appear to be most commonly associated with severity of impairments.Health care providers need to be alert to the development of secondary conditions after stroke in individuals as they age as well as in the poststroke time span. Obtaining a clear understanding of the prevalence of secondary conditions and associations with age and time post stroke is difficult because of variations in research methodologies. Future research is needed to define secondary condition prevalence and risk factors more clearly and to identify interventions that could reduce the prevalence and impact of these conditions on quality of life.

Scoping review.To gain a better understanding of the prevalence, course and association with age of secondary health conditions in individuals with spinal cord injury (SCI).Seattle, Washington, USA.We performed searches of electronic databases for studies published from 1986-2011 that provided information regarding the prevalence, course or associations with age and duration of secondary health conditions in individuals with SCI.Ninety-two studies were included. The findings indicate that: (1) individuals with SCI experience a number of secondary health conditions, many of which occur at a higher rate in those with SCI than the normative population; (2) the most common conditions or symptoms are pain, bowel and bladder regulation problems, muscle spasms, fatigue, esophageal symptom and osteoporosis; (3) a number of conditions, including cardiovascular disease, diabetes, bone mineral density loss, fatigue and respiratory complications or infections, occur with higher frequency in older individuals or those with longer SCI duration, relative to younger individuals or those with shorter SCI duration; and (4) there is a marked lack of longitudinal research examining the natural course of health conditions in individuals aging with SCI.The findings support the conclusion that individuals with SCI show signs of 'premature aging' in different organ systems. Longitudinal research is needed to understand when problems are most likely to emerge, and to develop and test the efficacy of interventions to prevent these health conditions and their negative impact.