Improved provider preparedness through an 8-part genetics and genomic education program

PurposeLarge-scale genetics education appropriate for general practice providers is a growing priority. We describe the content and impact of a mandatory system-wide program implemented at Sanford Health.MethodsThe Imagenetics Initiative at Sanford Health developed a 2-year genetics education program with quarterly web-based modules that were mandatory for all physicians and advanced practice providers. Scores of 0 to 5 were calculated for each module on the basis of the number of objectives that the participants reported as fulfilled. In addition, the participants completed surveys before starting and after finishing the education program, which included a 7-item measure scored 7 to 28 on the perceived preparedness to practice genetics.ResultsBetween 2252 and 2822 Sanford Health employees completed each of the 8 quarterly education modules. The ratings were highest for the module about using genomics to improve patient management (mean score = 4.3) and lowest for the module about different types of genetic tests and specialists. The mean perceived preparedness scores increased from 15.7 at pre-education to 19.1 at post-education (P < .001).ConclusionWeb-based genetics education was highly effective in increasing health care providers’ confidence about using genetics. Both comfort with personal knowledge and confidence regarding access to the system’s genomic medicine experts increased significantly. The results demonstrate how scalable approaches can improve provider preparedness.     

Diagnosis,treatment and disclosure: A qualitative exploration of participant challenges in a Monogenic Diabetes Registry

PurposeMaturity-onset diabetes of the young (MODY) represents a heterogenous group of monogenic diabetes. Despite its autosomal dominant inheritance, many MODY participants in the University of Chicago Monogenic Diabetes Registry have no family members enrolled. We aimed to gather data on the Registry participants’ experiences in (1) receipt of an accurate diagnosis, (2) decisions regarding disclosure of their MODY genetic test results with biological relatives, and (3) recommendations toward our Registry’s processes and outreach.MethodsWe conducted 20 one-on-one semistructured interviews with adult Registry participants.ResultsAll participants found navigating the health care system challenging because of the providers’ unfamiliarity with MODY and dismissal of its importance post diagnosis. All had shared their results with at least 1 relative, however many found their relatives resistant to engaging with their providers. Participants wanted to receive targeted information on their condition and connect with other participants who have faced similar diagnostic and treatment challenges.ConclusionOur results demonstrate that our probands faced resistance to reclassification of their diabetes from both health care providers and relatives. In an effort to improve cascade testing, the Registry is designing a portal to facilitate participant–research team communication and provide additional supports for participants to involve family members in testing.     

Striking a balance: Health care providers’ experiences with home-based,patient-centered care for older people—A meta-synthesis of qualitative studies

ObjectiveThe aim of this article was to synthesize research findings about health care providers’ experiences of patient-centered care in the home setting.MethodsThis is a meta-synthesis of qualitative findings using the analytical method of meta-ethnography developed by Noblit and Hare. We performed a systematic literature search in seven databases and assessed potential studies against eligibility criteria and quality. Subsequently, 10 primary studies were included for analysis.ResultsThe core theme “being a balance artist” emerged from the synthesis, incorporating the participants’ experiences when faced with conflicting and competing responsibilities and needs. Two subthemes—“balancing the older clients’ needs against organizational demands” and “balancing the older clients’ needs against professional standards”—further elaborated on this core theme.ConclusionHealth care providers’ experiences indicate that organizational factors play a crucial role in shaping the conditions for patient-centered care for older people in the home setting.Practice implicationsTo motivate and facilitate health care providers to move to a more patient-centered practice, it is important to expand the values of patient-centered care beyond the clinical encounter into the organization.     

Development of observational rating scales for evaluating patient-centered communication within a whole health approach to care

ContextTeaching and evaluating patient-centered communication (PCC) skills that incorporate holistic approaches are increasingly relevant.ObjectiveThis study describes the development of the Observational Whole Health Measure (OWHM) for evaluating the extent to which primary care providers in the Veterans Health Administration engaged in PCC in the context of a holistic approach to care known as “Whole Health.”Design and SettingObservational rating scales were created based on content from a national whole health clinical education program in the VA and refined from audio recordings of patient-provider interactions in primary care clinical encounters. Unpaired t-tests and Cohen's d were conducted to measure overall quality of what really matters and whole health goal setting and plan development.Participants65 clinical encounters across 8 providers before and after participating in the training were included for analysis.InterventionThe intervention used for creating rating scales is a 2.5 day whole health clinical education program designed to teach providers PCC skills to identify what matters most for the patients and develop a patient-centered health plan that incorporates integrative health approaches to care.Main outcome measureQuality scores (0–4) were used to measure number of instances and extent to which providers explored what matters most to patients, dimensions of whole health, and development of a whole health plan tailored to patient's goals.ResultsWe developed the Observational Whole Health Measure (OWHM) that captures changes in provider communication. Significant differences in overall quality of whole health goal setting and plan development were detected between pre- and post-encounters, demonstrating a sensitivity to change. With the rise of integrative health approaches being adopted across clinical settings, the observational rating scales created in this study are likely to have increasing relevance.     

Association of Participation in Health Check-ups with Risk Factors for Cardiovascular Diseases

BackgroundWe compared the risk factors for cardiovascular diseases (CVDs) among Koreans who did and did not participate in national periodic health check-ups, after adjustment for demographic factors, socioeconomic status, and lifestyle factors.MethodsThis cross-sectional study used data from the Korea National Health and Nutrition Examination Survey (KNHANES) from 2007 to 2018. Study subjects were classified as participants or non-participants in health check-ups, based on attendance at national periodic health check-ups during the previous two years.ResultsComparison of participants and non-participants in health check-ups indicated statistically significant differences in age, gender, region, education level, monthly income, employment status, obesity, smoking, alcohol consumption, exercise, and marital status. After adjustment for demographic, socioeconomic factors, and health-related behaviors, woman non-participants were more likely to have metabolic syndrome, pre-hypertension, hypertension, prediabetes, and diabetes, and man non-participants were more likely to have pre-diabetes and diabetes.ConclusionSubjects who participated in periodic health check-ups had fewer CVD-related risk factors than non-participants. Thus, health care providers should encourage non-participants to attend periodic health check-ups so that appropriate interventions can be implemented and decrease the risk for CVDs in these individuals.     

Impacts of mobile tablet computing on provider productivity,communications, and the process of care

ObjectiveHealth information technology investments continue to increase while the value derived from their implementation and use is mixed. Mobile device adoption into practice is a recent trend that has increased dramatically and formal studies are needed to investigate consequent benefits and challenges. The objective of this study is to evaluate practitioner perceptions of improvements in productivity, provider-patient communications, care provision, technology usability and other outcomes following the adoption and use of a tablet computer connected to electronic health information resources.MethodsA pilot program was initiated in June 2013 to evaluate the effect of mobile tablet computers at one health provider organization in the southeast United States. Providers were asked to volunteer for the evaluation and were each given a mobile tablet computer. A total of 42 inpatient and outpatient providers were interviewed in 2015 using a survey style questionnaire that utilized yes/no, Likert-style, and open ended questions. Each had previously used an electronic health record (EHR) system a minimum of one year outside of residency, and were regular users of personal mobile devices. Each used a mobile tablet computer in the context of their practice connected to the health system EHR.ResultsThe survey results indicate that more than half of providers perceive the use of the tablet device as having a positive effect on patient communications, patient education, patient's perception of the provider, time spent interacting with patients, provider productivity, process of care, satisfaction with EHR when used together with the device, and care provision. Providers also reported feeling comfortable using the device (82.9%), would recommend the device to colleagues (69.2%), did not experience increased information security and privacy concerns (95%), and noted significant reductions in EHR login times (64.1%). Less than 25% of participants reported negative impacts on any of these areas as well as on time spent on order submission, note completion time, overall workload, patient satisfaction with care experience and patient outcomes. Gender, number of years in practice, practice type (general practitioner vs. specialist), and service type (inpatient/outpatient) were found to have a significant effect on perceptions of patient satisfaction, care process, and provider productivity.ConclusionsProviders found positive gains from utilizing mobile devices in overall productivity, improved communications with their patients, the process of care, and technology efficiencies when used in combination with EHR and other health information resources. Demographic and health care work environment play a role in how mobile technologies are integrated into practice by providers.     

Factors that differentiate cancer risk management decisions among females with pathogenic/likely pathogenic variants in PALB2, CHEK2, and ATM

PurposeFollowing disclosure of pathogenic or likely pathogenic variants in hereditary cancer genes, patients face cancer risk management decisions. Through this mixed-methods study, we investigated cancer risk management decisions among females with pathogenic or likely pathogenic variants in PALB2, CHEK2, and ATM to understand why some patients follow National Comprehensive Cancer Network guidelines, whereas others do not.MethodsSurvey and interview data were cross-analyzed using a 3-stage approach. Identified factors were used to conduct coincidence analysis and differentiate between combinations of factors that result in following or not following guidelines.ResultsOf the 13 participants who underwent guideline inconsistent prophylactic surgery, 12 fit 1 of 3 unique patterns: (1) cancer-related anxiety in the absence of trust in care, (2) provider recommending surgery inconsistent with National Comprehensive Cancer Network guidelines, or (3) surgery occurring before genetic testing. Two unique patterns were found among 18 of 20 participants who followed guidelines: (1) anxiety along with trust in care or (2) lack of anxiety and no prophylactic surgery before testing.ConclusionHealth care provider recommendations and trust in care may influence whether individuals receive care that is congruent with risk levels conferred by specific genes. Interventions are needed to improve provider knowledge, patient trust in non-surgical care, and patient anxiety.     

The influence of mobile health applications on patient - healthcare provider relationships: A systematic,narrative review

ObjectiveTo explore the influence of mobile health applications on various dimensions of patient and healthcare provider relationships.MethodsA systematic, narrative review of English literature reporting experiences and outcomes of using mobile health applications was performed, evaluating communication and relationships between patients and healthcare professionals. Findings were framed thematically within the four dimensions of relationship-centred care. The methodological quality of included articles was appraised.ResultsThirty-seven articles were included, all of them meeting tenets of relationship-centred care. After adopting mobile health applications patients perceived an overall positive impact on their relationship with healthcare providers, indicating they are ready to transition from traditional clinical ecounters to a different modality. Use of the applications supported patients in assuming active roles in the management of their health in collaboration with health professionals. Reluctance of providers to using mobile health needs to be acknowledged and addressed when encouraging wider use of applications in clinical practice.ConclusionThe use of mobile health applications can influence communication and relationships between patients and providers positively, facilitating relationship-centered healthcare.Practice implicationImplementation of mobile health can support patients’ self-efficacy, improve access to healthcare services and improve relationships between patients and providers in ambulatory and hospital settings.     

Perspectives on wellness self-monitoring tools for older adults

PurposeOur purpose was to understand different stakeholder perceptions about the use of self-monitoring tools, specifically in the area of older adults’ personal wellness. In conjunction with the advent of personal health records, tracking personal health using self-monitoring technologies shows promising patient support opportunities. While clinicians’ tools for monitoring of older adults have been explored, we know little about how older adults may self-monitor their wellness and health and how their health care providers would perceive such use.MethodsWe conducted three focus groups with health care providers (n = 10) and four focus groups with community-dwelling older adults (n = 31).ResultsOlder adult participants’ found the concept of self-monitoring unfamiliar and this influenced a narrowed interest in the use of wellness self-monitoring tools. On the other hand, health care provider participants showed open attitudes toward wellness monitoring tools for older adults and brainstormed about various stakeholders’ use cases. The two participant groups showed diverging perceptions in terms of: perceived uses, stakeholder interests, information ownership and control, and sharing of wellness monitoring tools.ConclusionsOur paper provides implications and solutions for how older adults’ wellness self-monitoring tools can enhance patient-health care provider interaction, patient education, and improvement in overall wellness.     

Between and within race differences in patient-centeredness and activation in mental health care

ObjectivesThe aim of this study was to compare Black and White mental health care patients’ perceptions of their providers’ and their own participation in patient-centered mental health care. Perceptions of patient-centered care (PCC) in relation to the Multidimensional Model of Racial Identity were explored.MethodsBlack and White veterans receiving mental health care (n = 82) completed surveys assessing patient activation, involvement in care, perceptions of PCC, and therapeutic alliance. Black participants (n = 40) also completed the Multidimensional Inventory of Black Identity.ResultsThere were no differences by race in perceived PCC, though Black participants had lower levels of therapeutic alliance with their mental health care provider and were less activated. Black identity centrality, private regard, and public regard were positively related to PCC and elements of PCC such as patient information seeking/sharing.ConclusionsIntragroup identity variables such as racial centrality, regard, and ideology influenced perceived PCC among Black participants. Race identity variables should be explored in future research on racial disparities and PCC.Practice implicationsMental health care providers serving Black patients should create opportunities to discuss racial identity and race-related experiences as part of their efforts to improve therapeutic alliance and increase the patient-centeredness of care.     

Access to health information,health literacy and health-related quality of life among women living with breast cancer: Depression and anxiety as mediators

ObjectiveThis study examined the direct and indirect influences of health literacy and access to health information on the quality of life among 205 women living with breast cancer in Ghana.MethodsA cross-sectional survey design was employed. The interviewer-administered instrument included the health literacy scale, questions on access and satisfaction with healthcare information, depression and anxiety scale, and the Functional Assessment of Cancer Therapy-Breast Cancer.ResultsAccess to health information and health literacy had significant indirect effects on quality of life through depression and anxiety. Whereas health literacy had direct influence on quality of life after controlling for other factors, access to information had no direct influence on quality of life.ConclusionHealth literacy and access to health information improve quality of life in women living with breast cancer by reducing the levels of depression and anxiety. Depression and anxiety serve as possible mechanisms for the positive impacts of access to health information and health literacy on improved quality of life among breast cancer patients.Practice implicationsHealth care providers need to ensure that the information needs of patients are met in oncology practice to reduce their negative emotional states which would lead to improved health and wellbeing.     

Engaging patients in population-based chronic disease management: A qualitative study of barriers and intervention opportunities

ObjectiveCardiovascular disease (CVD) continues to be a leading cause of morbidity in the U.S. Managing CVD risk factors, such as diabetes or hypertension, can be challenging for many individuals. We investigated the barriers experienced by patients who persistently struggled to reach their CVD risk factor control goals.MethodsThis qualitative study examined patient, clinician, and researcher observations of individuals’ experiences in a chronic disease management program. All participants (n = 332) were enrolled in a clinical trial testing a skills-based group intervention seeking to improve healthcare engagement. Data were analyzed through a general inductive approach and resulting themes were structured along the Capability-Opportunity-Motivation-Behavior framework.ResultsAnalyses identified care engagement barriers related to participants’ communication skills and activation, care team relationship processes, and emotional factors. Although most participants reported benefitting from skills training, persistent barriers included distrust of their providers, shame about health challenges, and dissatisfaction with care team interactions that were described as impersonal or unresponsive.Conclusions and practice implicationsEfforts to support engagement in CVD risk factor management programs should address whether patients and their care team have the necessary skills, opportunities and confidence to proactively communicate health needs and engage in non-judgmental interactions for goal-setting, rapport-building, and shared decision-making.     

Effects of family health history-based colorectal cancer prevention education among non-adherent Chinese Americans to colorectal cancer screening guidelines

ObjectiveThis study examined the effects of the first family health history (FHH)-based colorectal cancer (CRC) prevention education on 1) FHH of CRC communication with family members and primary care physicians (PCPs), 2) fecal occult blood test (FOBT) uptake, and 3) CRC preventive lifestyle modifications among 50- to 75-year-old Chinese Americans non-adherent to CRC screening guidelines.MethodsUsing a community–based participatory research approach, we developed and implemented 62 culturally and linguistically appropriate, theory-driven, FHH-based CRC prevention educational workshops across Texas for 344 Chinese Americans (mostly with low education/income) aged 50–75 years who were non-adherent to CRC screening guidelines.ResultsLinear mixed modeling analyses showed that participants’ FHH of CRC communication with PCPs and family members significantly increased two-week post-workshop compared to pre-workshop data (ps<0.001). Moreover, at two-weeks post-workshop, 91.9 % of participants underwent FOBT. Nevertheless, no significant changes were found in participants’ lifestyles.ConclusionOur educational workshops successfully increased Chinese Americans’ FHH of CRC communication and FOBT uptake. Personalized education with longer follow-ups may be needed in future studies to promote lifestyle changes among Chinese Americans.Practice implicationsHealth and public health professionals may adopt our workshop educational materials to provide patient and public CRC prevention education for Chinese Americans.     

Health screening behaviors among adults with hereditary hemorrhagic telangiectasia in North America

PurposeThis study aimed to identify factors that influence screening behaviors of adults with hereditary hemorrhagic telangiectasia (HHT).MethodsParticipants with a self-reported diagnosis of HHT were recruited from the HHT Foundation International, Inc.; the “HHT Awareness” Facebook group; and six HHT clinics. A cross-sectional mixed methods survey was administered to investigate the relationships among the Health Belief model constructs, the domains of illness representations, and HHT-specific screening behaviors consistent with recommended guidelines.ResultsA total of 320 participants reported rates of cerebral arteriovenous malformation (AVM) screenings, pulmonary AVM screenings, and HHT annual checkups that were 82.0, 67.1, and 56.5%, respectively. Logistical regression analysis showed that perceived barriers (β = −0.114, P < 0.001), perceived susceptibility (β = 0.117, P < 0.05), treatment control (β = 0.078, P < 0.05), and emotional representations (β = 0.067, P < 0.05) were significant predictors of HHT screening. Open-ended responses revealed perceived barriers to screening, including a lack of health-care providers (HCPs) familiar with and/or knowledgeable about HHT.ConclusionOur results reveal suboptimal screening rates among adults with HHT and identify several factors influencing these behaviors. We suggest that there is a need for increased provider education regarding HHT as well as approaches that providers can use to improve screening adherence.Genet Med advance online publication 13 October 2016     

Returning integrated genomic risk and clinical recommendations: The eMERGE study

PurposeAssessing the risk of common, complex diseases requires consideration of clinical risk factors as well as monogenic and polygenic risks, which in turn may be reflected in family history. Returning risks to individuals and providers may influence preventive care or use of prophylactic therapies for those individuals at high genetic risk.MethodsTo enable integrated genetic risk assessment, the eMERGE (electronic MEdical Records and GEnomics) network is enrolling 25,000 diverse individuals in a prospective cohort study across 10 sites. The network developed methods to return cross-ancestry polygenic risk scores, monogenic risks, family history, and clinical risk assessments via a genome-informed risk assessment (GIRA) report and will assess uptake of care recommendations after return of results.ResultsGIRAs include summary care recommendations for 11 conditions, education pages, and clinical laboratory reports. The return of high-risk GIRA to individuals and providers includes guidelines for care and lifestyle recommendations. Assembling the GIRA required infrastructure and workflows for ingesting and presenting content from multiple sources. Recruitment began in February 2022.ConclusionReturn of a novel report for communicating monogenic, polygenic, and family history-based risk factors will inform the benefits of integrated genetic risk assessment for routine health care.     

Patient–provider communication and reproductive health among HIV-positive women in Rio de Janeiro,Brazil

ObjectiveTo qualitatively assess the influence of patient–provider communication on contraceptive choice among HIV-positive women in the context of universal antiretroviral therapy (ART) access.MethodsFocus group discussions (FGD; n = 3), in-depth (IDI; n = 15) and freelist interviews (FLI; n = 36) were conducted with HIV-positive women aged 18–40 years recruited from public health units in Rio de Janeiro/Brazil.ResultsOf 70 participants, 49 used ART and the median time since HIV diagnosis was 6 years (range: 1–18). The majority of participants (71.4%) reported some degree of dissatisfaction with their health providers (usually lack of open dialogue) and a few reported experiences of stigma/prejudice during appointments. Intra, interpersonal and social factors modulated behaviors and reproductive health decisions, and those issues were rarely addressed by providers during HIV clinical care.ConclusionDespite dramatic increases in survival and life quality after universal ART implementation in Brazil, reproductive health issues are neglected by multiple cadres of HIV health providers. Communication on reproductive health issues remains fragmented and potentially contradictory, compromising care in these settings.Practice implicationsAdequate provider training to address reproductive health-related issues in a comprehensive, culturally sensitive manner and improved integration of HIV and reproductive health care are urgently needed in this setting.     

Milestones for medical students completing a clinical genetics elective

PurposeWe are not aware of any competency-based evaluation method that is specifically designed for a genetics elective for medical students. Here, we aimed to create a milestone template to improve evaluation and to use the feedback from the template to improve the elective.MethodsThrough an iterative process using feedback from eight medical students and eight attendings, we crafted a milestone template for the medical student genetics rotation. A “scavenger hunt” of activities was developed to address several gaps discovered through this process.ResultsAll participants felt that the milestone template was complete for the student level and that it improved evaluation. In response to faculty feedback, we modified the evaluation process such that several evaluators rated students in only selected domains. Scavenger hunt activities were designed to address five domains that the students reported to be inadequately covered.ConclusionDeveloping a milestone template has taken us a step closer to meaningful assessment of students completing the genetics elective and simultaneously allowed us to strengthen the elective. Meaningful elective experiences in genetics that provide individual feedback within a learner-centered assessment of progress and flexible out-of-classroom activities may contribute to lifelong learning and interest in genetics and genomics.     

Helping young women go red: Harnessing the power of personal and digital information to prevent heart disease

ObjectiveCardiovascular disease (CVD) is the leading cause of death for American women, yet young women are rarely the target population of CVD prevention campaigns. This study investigated young women’s exposure to CVD information.MethodsWe surveyed 331 females ages 15–24 years to determine 1) whether participants felt informed about heart disease or stroke, 2) their exposure to heart disease information sources over the past year, and 3) whether they had ever discussed CVD-related topics with healthcare providers.ResultsOver half of participants reported feeling not informed about heart disease (52%) or stroke (59%). Participants were more likely to report feeling informed if they were exposed to information from websites or social media, or if they had ever discussed family history of heart disease, personal risk for heart disease, or high blood pressure with their healthcare provider.ConclusionsMost young women did not feel informed about CVD. Exposure to specific information sources and discussions with healthcare providers may help improve this.Practice implicationsPublic health campaigns should promote cardiovascular health through websites and social media popular amongst young women. Healthcare providers should discuss CVD risk factor modification with young patients in order to promote cardiovascular health across the life course.