Genetic Counselors’ Current Use of Personal Health Records-Based Family Histories in Genetic Clinics and Considerations for Their Future Adoption

Given the widespread adoption of electronic medical records and recent emergence of electronic family history tools, we examined genetic counselors’ perspectives on the emerging technology of the personal health record (PHR)-based family history tool that links to an electronic medical record (EMR). Two-hundred thirty-three genetic counselors responded to an on-line survey eliciting current use of electronic family history (EFH) tools and familiarity with PHR-based family history tools. Additionally, after being shown a series of screen shots of a newly developed PHR-based family history tool based on the U.S. Surgeon General’s My Family Health Portrait (United States Department of Health and Human Services 2009), participants were surveyed about the perceived usefulness, ease of use, and impact on current workflow that this kind of tool would have in their practices. Eighty-three percent reported that their institution has an EMR, yet only 35 % have a dedicated space for family history. Eighty-two percent reported that less than 5 % of their patients have a PHR, and only 16 % have worked with patients who have a PHR. Seventy-two percent or more agreed that a PHR-based family history tool would facilitate communication, increase accuracy of information, ensure consistency in recording information, increase focus on actual counseling, reduce repetitive questions, improve efficiency, and increase the legibility and clarity. Our findings suggest that participants were familiar with existing EFH tools, but that the majority did not use them in practice. Genetic counselors’ adoption of such tools is limited due to non-existence of this kind of technology or inability to integrate it into their clinics. They are also strongly in favor of adopting a PHR-based family history tool in genetics clinics, but have practical concerns that must be addressed before the tool can be implemented.     

Academic Underachievement and Attention-Deficit/Hyperactivity Disorder: The Negative Impact of Symptom Severity on School Performance

Many children with Attention-Deficit/Hyperactivity Disorder (ADHD) achieve academically at a lower level than would be predicted given their intellectual abilities. However, the extent to which this is due to behavioral problems versus cognitive deficits associated with the disorder is unclear. In the present study, a group of children with ADHD (with average intellectual abilities) performed significantly below prediction in reading, writing, and mathematics skills and demonstrated a greater discrepancy between actual and predicted achievement than did a group of non-ADHD children. Even when controlling for performance on a measure of executive functioning, severity of ADHD symptoms, based on parent report, significantly predicted academic underachievement in reading, writing, and mathematics. These results indicate that the more severe the behavioral symptomatology of children with ADHD is, the more negatively impacted their school performance may be. Results are discussed in terms of diagnostic and intervention implications.     

The importance of callous-unemotional traits for extending the concept of psychopathy to children

This study focused on the use of callous-unemotional (CU) traits to identify a subgroup of children with both attention deficit/hyperactivity disorder (ADHD) and a conduct problem diagnosis (oppositional defiant disorder [ODD] or conduct disorder [CD] who show characteristics similar to adults with psychopathy. In a clinic-referred sample of children aged 6 to 13 years (N = 154), those with diagnoses of both ADHD and ODD/CD were divided on the basis of teacher ratings of CU traits. Children high on these traits showed features typically associated with psychopathy, such as a lack of fearfulness and a reward-dominant response style. Furthermore, children with CU traits seemed less distressed by their behavior problems. These findings are consistent with research on adults showing that impulsivity and antisocial behavior alone are insufficient to document persons who fit the construct of psychopathy.     

Expansion of Genetic Services Utilizing a General Genetic Counseling Clinic

We established a general genetic counseling clinic (GCC) to help reduce long wait times for new patient appointments and to enhance services for a subset of patients. Genetic counselors, who are licensed in Tennessee, were the primary providers and MD geneticists served as medical advisors. This article describes the clinic referral sources, reasons for referral and patient dispositions following their GCC visit(s). We obtained patients by triaging referrals made to our medical genetics division. Over 24 months, our GCC provided timely visits for 321 patients, allowing the MD geneticists to focus on patients needing a clinical exam and/or complex medical management. Following their GCC visit(s), over 80 % of patients did not need additional appointments with an MD geneticist. The GCC allowed the genetic counselor to spend more time with patients than is possible in our traditional medical genetics clinic. Patient satisfaction surveys (n?=?30) were very positive overall concerning the care provided. Added benefits for the genetic counselors were increased professional responsibility, autonomy and visibility as health care providers. We conclude that genetic counselors are accepted as health care providers by patients and referring providers for a subset of clinical genetics cases. A GCC can expand genetic services, complement more traditional genetic clinic models and utilize the strengths of the genetic counselor health care provider.