clinicaltrials.gov Identifier: NCT01438697.
A detailed family health history is currently the most potentially useful tool for diagnosis and risk assessment in clinical genetics. We developed and evaluated the usability and analytic validity of a patient-driven web-based family health history collection and analysis tool. Health Heritage© guides users through the collection of their family health history by relative, generates a pedigree, completes risk assessment, stratification, and recommendations for 89 conditions. We compared the performance of Health Heritage to that of Usual Care using a nonrandomized cohort trial of 109 volunteers. We contrasted the completeness and sensitivity of family health history collection and risk assessments derived from Health Heritage and Usual Care to those obtained by genetic counselors and genetic assessment teams. Nearly half (42%) of the Health Heritage participants reported discovery of health risks; 63% found the information easy to understand and 56% indicated it would change their health behavior. Health Heritage consistently outperformed Usual Care in the completeness and accuracy of family health history collection, identifying 60% of the elevated risk conditions specified by the genetic team versus 24% identified by Usual Care. Health Heritage also had greater sensitivity than Usual Care when comparing the identification of risks. These results suggest a strong role for automated family health history collection and risk assessment and underscore the potential of these data to serve as the foundation for comprehensive, cost-effective personalized genomic medicine.
Mobile health interventions may help People Living with HIV (PLWH) improve engagement in care. We designed and piloted PositiveLinks, a clinic-affiliated mobile intervention for PLWH, and assessed longitudinal impact on retention in care and viral suppression. The program was based at an academic Ryan White Clinic serving a nonurban population in Central Virginia. The PL intervention included a smartphone app that connected participants to clinic staff and provided educational resources, daily queries of stress, mood and medication adherence, weekly quizzes, appointment reminders, and a virtual support group. Outcomes were analyzed using McNemar's tests for HRSA-1, visit constancy, and viral suppression and nonparametric Wilcoxon signed-rank tests for CD4 counts and viral loads. Of 77 participants, 63% were male, 49% black non-Hispanic, and 72% below the federal poverty level. Participants' achievement of a retention in care benchmark (HRSA-1) increased from 51% at baseline to 88% at 6 months (p < 0.0001) and 81% at 12 months (p = 0.0003). Visit constancy improved from baseline to 6 months (p = 0.016) and 12 months (p = 0.0004). Participants' mean CD4 counts increased from baseline to 6 months (p = 0.0007) and 12 months (p = 0.0005). The percentage of participants with suppressed viral loads increased from 47% at baseline to 87% at 6 months (p < 0.0001) and 79% at 12 months (p = 0.0007). This study is one of the first to demonstrate that a mobile health intervention can have a positive impact on retention in care and clinical outcomes for vulnerable PLWH. Next steps include integration with clinical practice and dissemination.
The examination of health disparities among people within Appalachian counties compared to people living in other counties is needed to find ways to strategically target improvements in community health in the United States of America (USA). Methods: A telephone survey of a random sample of adults living in households within communities of all counties of the state of Virginia (VA) in the USA was conducted. Findings: Health status was poorer among those in communities within Appalachian counties in VA and health insurance did not make a difference. Health perception was significantly worse in residents within communities in Appalachian counties compared to non-Appalachian community residents (30.5 vs. 17.4% rated their health status as poor/fair), and was worse even among those with no chronic diseases. Within communities in Appalachian counties, black residents report significantly better health perception than do white residents. Conclusion: Residents living in communities in Appalachian counties in VA are not receiving adequate health care, even among those with health insurance. More research with a larger ethnic minority sample is needed to investigate the racial/ethnic disparities in self-reported health and health care utilization within communities.
Social support can improve outcomes for people living with HIV (PLWH) and could be provided through online support groups. The Positive Links smartphone app is a multicomponent intervention that allows users to interact in a clinic-affiliated anonymous online support group. We investigated how social support was exchanged in a group of 55 participants over 8 months, using an adaptation of the Social Support Behavior Code. Participant interviews assessed their experiences and perceptions of the app. Of 840 posts analyzed, 115 (14 %) were coded as eliciting social support and 433 (52 %) as providing social support. Messages providing support were predominantly emotional (41 %), followed by network (27 %), esteem (24 %), informational (18 %), and instrumental (2 %) support. Participants perceived connection and support as key benefits of the app. Technical issues and interpersonal barriers limited some participants in fully using the app. Mobile technology offers a useful tool to reach populations with barriers to in-person support and may improve care for PLWH.
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