Barriers and Facilitators to Adoption of Genomic Services for Colorectal Care within the Veterans Health Administration.

We examined facilitators and barriers to adoption of genomic services for colorectal care, one of the first genomic medicine applications, within the Veterans Health Administration to shed light on areas for practice change. We conducted semi-structured interviews with 58 clinicians to understand use of the following genomic services for colorectal care: family health history documentation, molecular and genetic testing, and genetic counseling. Data collection and analysis were informed by two conceptual frameworks, the Greenhalgh Diffusion of Innovation and Andersen Behavioral Model, to allow for concurrent examination of both access and innovation factors. Specialists were more likely than primary care clinicians to obtain family history to investigate hereditary colorectal cancer (CRC), but with limited detail; clinicians suggested templates to facilitate retrieval and documentation of family history according to guidelines. Clinicians identified advantage of molecular tumor analysis prior to genetic testing, but tumor testing was infrequently used due to perceived low disease burden. Support from genetic counselors was regarded as facilitative for considering hereditary basis of CRC diagnosis, but there was variability in awareness of and access to this expertise. Our data suggest the need for tools and policies to establish and disseminate well-defined processes for accessing services and adhering to guidelines.

Barriers to and facilitators of interventions to counter publication bias: thematic analysis of scholarly articles and stakeholder interviews.

BACKGROUND: When the nature and direction of research results affect their chances of publication, a distortion of the evidence base - termed publication bias - results. Despite considerable recent efforts to implement measures to reduce the non-publication of trials, publication bias is still a major problem in medical research. The objective of our study was to identify barriers to and facilitators of interventions to prevent or reduce publication bias. METHODS: We systematically reviewed the scholarly literature and extracted data from articles. Further, we performed semi-structured interviews with stakeholders. We performed an inductive thematic analysis to identify barriers to and facilitators of interventions to counter publication bias. RESULTS: The systematic review identified 39 articles. Thirty-four of 89 invited interview partners agreed to be interviewed. We clustered interventions into four categories: prospective trial registration, incentives for reporting in peer-reviewed journals or research reports, public availability of individual patient-level data, and peer-review/editorial processes. Barriers we identified included economic and personal interests, lack of financial resources for a global comprehensive trial registry, and different legal systems. Facilitators identified included: raising awareness of the effects of publication bias, providing incentives to make data publically available, and implementing laws to enforce prospective registration and reporting of clinical trial results. CONCLUSIONS: Publication bias is a complex problem that reflects the complex system in which it occurs. The cooperation amongst stakeholders to increase public awareness of the problem, better tailoring of incentives to publish, and ultimately legislative regulations have the greatest potential for reducing publication bias.

Identifying Barriers and Practical Solutions to Conducting Site-Based Research in North America: Exploring Acute Heart Failure Trials As a Case Study.

Although the prognosis of ambulatory heart failure (HF) has improved dramatically there have been few advances in the management of acute HF (AHF). Despite regional differences in patient characteristics, background therapy, and event rates, AHF clinical trial enrollment has transitioned from North America and Western Europe to Eastern Europe, South America, and Asia-Pacific where regulatory burden and cost of conducting research may be less prohibitive. It is unclear if the results of clinical trials conducted outside of North America are generalizable to US patient populations. This article uses AHF as a paradigm and identifies barriers and practical solutions to successfully conducting site-based research in North America.

Health Knowledge, Attitudes, and Practices among Street Children in LMICs

Background: Worldwide, it is estimated that there are up to 150 million street children. Street children are an understudied, vulnerable population. While many studies have characterized street children’s physical health, few have addressed the circumstances and barriers to their utilization of health services.

Methods: A systematic literature review was conducted to understand the barriers and facilitators that street children face when accessing healthcare in low and middle income countries. Six databases were used to search for peer review literature and one database and Google Search engine were used to find grey literature (theses, dissertations, reports, etc.). There were no exclusions based on study design. Studies were eligible for inclusion if the study population included street children, the study location was a low and middle income country defined by the World Bank, AND whose subject pertained to healthcare.

In addition, a cross-sectional study was conducted between May 2015 and August 2015 with the goal of understanding knowledge, attitudes, and health seeking practices of street children residing in Battambang, Cambodia. Time location and purposive sampling were used to recruit community (control) and street children. Both boys and girls between the ages of 10 and 18 were recruited. Data was collected through a verbally administered survey. The knowledge, attitudes and health seeking practices of community and street children were compared to determine potential differences in healthcare utilization.

Results: Of the 2933 abstracts screened for inclusion in the systematic literature review, eleven articles met all the inclusion criteria and were found to be relevant. Cost and perceived stigma appeared to be the largest barriers street children faced when attempting to seek care. Street children preferred to receive care from a hospital. However, negative experiences and mistreatment by health providers deterred children from going there. Instead, street children would often self treat and/or purchase medicine from a pharmacy or drug vendor. Family and peer support were found to be important for facilitating treatment.

The survey found similar results to the systematic review. Forty one community and thirty four street children were included in the analysis. Both community and street children reported the hospital as their top choice for care. When asked if someone went with them to seek care, both community and street children reported that family members, usually mothers, accompanied them. Community and street children both reported perceived stigma. All children had good knowledge of preventative care.

Conclusions: While most current services lack the proper accommodations for street children, there is a great potential to adapt them to better address street children’s needs. Street children need health services that are sensitive to their situation. Subsidies in health service costs or provision of credit may be ways to reduce constraints street children face when deciding to seek healthcare. Health worker education and interventions to reduce stigma are needed to create a positive environment in which street children are admitted and treated for health concerns.

Factors Impacting Grandparent and Grand Child Communication Across Sex- Related Topics in Kenya

Background: Although many studies have investigated sexual communication between parents and children in Kenya, none have focused singularly on grandparent and grandchild communication when grandparents are primary caregivers. Further, few studies have asked about specific topics related to sex, instead asking generally about “sex related topics” or focusing on HIV/AIDS. This research aims to investigate communication on ten specific sex- related topics between grandparents who are primary caregivers and their grandchildren. The primary research aim was to identify facilitators and barriers to grandparent-grandchild communication associated with frequency of communication. A secondary exploratory question was whether frequency of communication and youth satisfaction with communication were associated with youth’s desire for more communication in the future. Methods: The study was conducted in urban and peri-urban central Kenya. A convenience sample of 193 grandparents and 166 twelve to fifteen year old grandchildren were identified by community health workers. A cross sectional survey assessed nine potential barriers or facilitators to communication (e.g., frequency of communication, perceived grandparent knowledge, grandparent sense of responsibility to communication on a given topic) on ten specified sex- related topics (e.g., peer pressure on sex topics, romantic relationships, condoms). Bivariate and multivariable analyses identified significant associations between communication variables and the outcomes of interest. Results: Bivariate regression showed that higher grandchild age, grandchild gender, higher perceived grandparent knowledge, higher perceived grandparent comfort, higher grandparent-reported sense of responsibility, higher grandparent-reported belief that child should be aware of a given topic before initiating in sex, and higher youth’s own comfort during communication, were significantly associated with higher levels of communication frequency. In the multivariable model, higher grandchild age, gender, higher comfort during communication, and higher perceived grandparent knowledge remained significantly associated with higher levels communication frequency. For the secondary research question, higher communication frequency and higher levels of youth satisfaction were both significantly associated with higher levels of youth desire for more communication in bivariate regression, and higher levels of youth’s satisfaction with communication remained significantly associated with higher levels of youth’s desire for more in the adjusted analysis. Conclusions: This study found that several potential barriers and facilitators of communication are associated with both frequency of and youth’s desire for more communication. The association between grandchild age, gender and perceived grandparent knowledge and frequency of communication is similar to findings from other studies that have examined sex-related communication between parent primary caregivers and children. This finding has important implications for understanding grandparent and grandchild communication, and communication on specific topics in a population from Kenya. The positive association between youth satisfaction of and desire for more communication has important education policy and intervention implications, suggesting that if youth are satisfied with the communication with their caregivers, they may want to learn more.

The Relationship Between Support Systems and Disease Burden for Families Coping with Sickle Cell Disease in South Africa and Cameroon

Background: Sickle cell disease (SCD) is a debilitating genetic blood disorder that seriously impacts the quality of life of affected individuals and their families. With 85% of cases occurring in sub-Saharan Africa, it is essential to identify the barriers and facilitators of optimal outcomes for people with SCD in this setting. This study focuses on understanding the relationship between support systems and disease outcomes for SCD patients and their families in Cameroon and South Africa.

Methods: This mixed-methods study utilizes surveys and semi-structured interviews to assess the experiences of 29 SCD patients and 28 caregivers of people with SCD across three cities in two African countries: Cape Town, South Africa; Yaoundé, Cameroon; and Limbe, Cameroon.

Results: Patients in Cameroon had less treatment options, a higher frequency of pain crises, and a higher incidence of malaria than patients in South Africa. Social support networks in Cameroon consisted of both family and friends and provided emotional, financial, and physical assistance during pain crises and hospital admissions. In South Africa, patients relied on a strong medical support system and social support primarily from close family members; they were also diagnosed later in life than those in Cameroon.

Conclusions: The strength of medical support systems influences the reliance of SCD patients and their caregivers on social support systems. In Cameroon the health care system does not adequately address all factors of SCD treatment and social networks of family and friends are used to complement the care received. In South Africa, strong medical and social support systems positively affect SCD disease burden for patients and their caregivers. SCD awareness campaigns are necessary to reduce the incidence of SCD and create stronger social support networks through increased community understanding and decreased stigma.

The implementation of a translational study involving a primary care based behavioral program to improve blood pressure control: The HTN-IMPROVE study protocol (01295).

BACKGROUND: Despite the impact of hypertension and widely accepted target values for blood pressure (BP), interventions to improve BP control have had limited success. OBJECTIVES: We describe the design of a 'translational' study that examines the implementation, impact, sustainability, and cost of an evidence-based nurse-delivered tailored behavioral self-management intervention to improve BP control as it moves from a research context to healthcare delivery. The study addresses four specific aims: assess the implementation of an evidence-based behavioral self-management intervention to improve BP levels; evaluate the clinical impact of the intervention as it is implemented; assess organizational factors associated with the sustainability of the intervention; and assess the cost of implementing and sustaining the intervention. METHODS: The project involves three geographically diverse VA intervention facilities and nine control sites. We first conduct an evaluation of barriers and facilitators for implementing the intervention at intervention sites. We examine the impact of the intervention by comparing 12-month pre/post changes in BP control between patients in intervention sites versus patients in the matched control sites. Next, we examine the sustainability of the intervention and organizational factors facilitating or hindering the sustained implementation. Finally, we examine the costs of intervention implementation. Key outcomes are acceptability and costs of the program, as well as changes in BP. Outcomes will be assessed using mixed methods (e.g., qualitative analyses--pattern matching; quantitative methods--linear mixed models). DISCUSSION: The study results will provide information about the challenges and costs to implement and sustain the intervention, and what clinical impact can be expected.

Toward the development of national telehealth services: the role of Veterans Health Administration and future directions for research.

The Veterans Health Administration (VHA) in the Department of Veteran Affairs (VA) has emerged as a national and international leader in the delivery and research of telehealth-based treatment. Several unique characteristics of care in VA settings intersect to create an ideal environment for telehealth modalities and research. However, the value of telehealth experience and initiatives in VA settings is limited if telehealth strategies cannot be widely exported to other public or private systems. Whereas a hierarchical organization, such as VA, can innovate and fund change relatively quickly based on provider and patient preferences and a growing knowledge base, other health provider organizations and third-party payers may likely require replicable scientific findings over time before incremental investments will be made to create infrastructure, reform regulatory barriers, and amend laws to accommodate expansion of telehealth modalities. Accordingly, large-scale scientifically rigorous telehealth research in VHA settings is essential not only to investigate the efficacy of existing and future telehealth practices in VHA, but also to hasten the development of telehealth infrastructure in private and other public health settings. We propose an expanded partnership between the VA, NIH, and other funding agencies to investigate creative and pragmatic uses of telehealth technology. To this end, we identify six specific areas of research we believe to be particularly relevant to the efficient development of telehealth modalities in civilian and military contexts outside VHA.

The increasing impact of human immunodeficiency virus infections, sexually transmitted diseases, and viral hepatitis in Durham County, North Carolina: a call for coordinated and integrated services.

BACKGROUND: Durham County, North Carolina, faces high rates of human immunodeficiency virus (HIV) infection (with or without progression to AIDS) and sexually transmitted diseases (STDs). We explored the use of health care services and the prevalence of coinfections, among HIV-infected residents, and we recorded community perspectives on HIV-related issues. METHODS: We evaluated data on diagnostic codes, outpatient visits, and hospitalizations for individuals with HIV infection, STDs, and/or hepatitis B or C who visited Duke University Hospital System (DUHS). Viral loads for HIV-infected patients receiving care were estimated for 2009. We conducted geospatial mapping to determine disease trends and used focus groups and key informant interviews to identify barriers and solutions to improving testing and care. RESULTS: We identified substantial increases in HIV/STDs in the southern regions of the county. During the 5-year period, 1,291 adults with HIV infection, 4,245 with STDs, and 2,182 with hepatitis B or C were evaluated at DUHS. Among HIV-infected persons, 13.9% and 21.8% were coinfected with an STD or hepatitis B or C, respectively. In 2009, 65.7% of HIV-infected persons receiving care had undetectable viral loads. Barriers to testing included stigma, fear, and denial of risk, while treatment barriers included costs, transportation, and low medical literacy. LIMITATIONS: Data for health care utilization and HIV load were available from different periods. Focus groups were conducted among a convenience sample, but they represented a diverse population. CONCLUSIONS: Durham County has experienced an increase in the number of HIV-infected persons in the county, and coinfections with STDs and hepatitis B or C are common. Multiple barriers to testing/treatment exist in the community. Coordinated care models are needed to improve access to HIV care and to reduce testing and treatment barriers.

Protocol for the "Implementation, adoption, and utility of family history in diverse care settings" study.

BACKGROUND: Risk assessment with a thorough family health history is recommended by numerous organizations and is now a required component of the annual physical for Medicare beneficiaries under the Affordable Care Act. However, there are several barriers to incorporating robust risk assessments into routine care. MeTree, a web-based patient-facing health risk assessment tool, was developed with the aim of overcoming these barriers. In order to better understand what factors will be instrumental for broader adoption of risk assessment programs like MeTree in clinical settings, we obtained funding to perform a type III hybrid implementation-effectiveness study in primary care clinics at five diverse healthcare systems. Here, we describe the study's protocol. METHODS/DESIGN: MeTree collects personal medical information and a three-generation family health history from patients on 98 conditions. Using algorithms built entirely from current clinical guidelines, it provides clinical decision support to providers and patients on 30 conditions. All adult patients with an upcoming well-visit appointment at one of the 20 intervention clinics are eligible to participate. Patient-oriented risk reports are provided in real time. Provider-oriented risk reports are uploaded to the electronic medical record for review at the time of the appointment. Implementation outcomes are enrollment rate of clinics, providers, and patients (enrolled vs approached) and their representativeness compared to the underlying population. Primary effectiveness outcomes are the percent of participants newly identified as being at increased risk for one of the clinical decision support conditions and the percent with appropriate risk-based screening. Secondary outcomes include percent change in those meeting goals for a healthy lifestyle (diet, exercise, and smoking). Outcomes are measured through electronic medical record data abstraction, patient surveys, and surveys/qualitative interviews of clinical staff. DISCUSSION: This study evaluates factors that are critical to successful implementation of a web-based risk assessment tool into routine clinical care in a variety of healthcare settings. The result will identify resource needs and potential barriers and solutions to implementation in each setting as well as an understanding potential effectiveness. TRIAL REGISTRATION: NCT01956773.

Documenting the Contextualization and Implementation of mhGAP-HIG in Post-earthquake Nepal

Background: The burden of mental health is increased in humanitarian settings, and needs to be addressed in emergency situations. The World Health Organization has recently released the mental health Global Action Programme Humanitarian Intervention Guide (mhGAP-HIG) in order to scale up mental health service delivery in humanitarian settings through task-shifting. This study aims to evaluate, contextualize and identify possible barriers and challenges to mhGAP-HIG manual content, training and implementation in post-earthquake Nepal.

Methods: This qualitative study was conducted in Kathmandu, Nepal. Key informant interviews were conducted with fourteen psychiatrists involved in a mhGAP-HIG Training of Trainers and Supervisors (ToTS) in order to assess the mhGAP-HIG, ToTS training, and the potential challenges and barriers to mhGAP-HIG implementation. Themes identified by informants were supplemented by process notes taken by the researcher during observed training sessions and meetings.

Results: Key themes emerging from key informant interviews include the need to take three factors into account in manual contextualization: culture, health systems and the humanitarian setting. This includes translation of the manual into the local language, adding or expanding upon conditions prevalent in Nepal, and more consideration to improving feasibility of manual use by non-specialists.

Conclusion: The mhGAP-HIG must be tailored to specific humanitarian settings for effective implementation. This study shows the importance of conducting a manual contextualization workshop prior to training in order to maximize the feasibility and success in training health care workers in mhGAP.

Finding our way through phenotypes.

Despite a large and multifaceted effort to understand the vast landscape of phenotypic data, their current form inhibits productive data analysis. The lack of a community-wide, consensus-based, human- and machine-interpretable language for describing phenotypes and their genomic and environmental contexts is perhaps the most pressing scientific bottleneck to integration across many key fields in biology, including genomics, systems biology, development, medicine, evolution, ecology, and systematics. Here we survey the current phenomics landscape, including data resources and handling, and the progress that has been made to accurately capture relevant data descriptions for phenotypes. We present an example of the kind of integration across domains that computable phenotypes would enable, and we call upon the broader biology community, publishers, and relevant funding agencies to support efforts to surmount today's data barriers and facilitate analytical reproducibility.

Facilitators and barriers to hypertension self-management in urban African Americans: perspectives of patients and family members.

INTRODUCTION: We aimed to inform the design of behavioral interventions by identifying patients' and their family members' perceived facilitators and barriers to hypertension self-management. MATERIALS AND METHODS: We conducted focus groups of African American patients with hypertension and their family members to elicit their views about factors influencing patients' hypertension self-management. We recruited African American patients with hypertension (n = 18) and their family members (n = 12) from an urban, community-based clinical practice in Baltimore, Maryland. We conducted four separate 90-minute focus groups among patients with controlled (one group) and uncontrolled (one group) hypertension, as well as their family members (two groups). Trained moderators used open-ended questions to assess participants' perceptions regarding patient, family, clinic, and community-level factors influencing patients' effective hypertension self-management. RESULTS: Patient participants identified several facilitators (including family members' support and positive relationships with doctors) and barriers (including competing health priorities, lack of knowledge about hypertension, and poor access to community resources) that influence their hypertension self-management. Family members also identified several facilitators (including their participation in patients' doctor's visits and discussions with patients' doctors outside of visits) and barriers (including their own limited health knowledge and patients' lack of motivation to sustain hypertension self-management behaviors) that affect their efforts to support patients' hypertension self-management. CONCLUSION: African American patients with hypertension and their family members reported numerous patient, family, clinic, and community-level facilitators and barriers to patients' hypertension self-management. Patients' and their family members' views may help guide efforts to tailor behavioral interventions designed to improve hypertension self-management behaviors and hypertension control in minority populations.

Facilitators and Barriers to Naloxone Kit Use Among Opioid-Dependent Patients Seeking Treatment at Medication Assisted Therapy Clinics in North Carolina, USA

Naloxone – an opioid antagonist that reverses the effects of opioids, including potential death from overdose – is increasingly being distributed in non-medical settings. We conducted a mixed methods study administering a survey to 100 treatment seekers and pursuing observant participation at four methadone/buprenorphine Medication Assisted Therapy (MAT) clinics in North Carolina, USA. Female participants were more likely to have gotten a kit and to carry it with them, whereas male participants were more likely to have witnessed an overdose and to have made use of naloxone. Men discussed the difficulties of carrying the naloxone kits, which are currently too large to fit in a pocket. Public health officials may be relieved to know that naloxone users intend to call emergency services.