Telegenetics in Maine: Successful clinical and educational service delivery model developed from a 3-year pilot project

Abstract

Purpose: The goal of this 3-year pilot project was to increase accessibility to genetics educational and clinical services in Maine. Methods: Southern Maine Genetics Services, Foundation for Blood Research in collaboration with Maine Telemedicine Services established telemedicine capacity to link with rural health care centers located in Northern, Central, and Southern Maine and public health nursing statewide for the provision of genetics clinical and educational services. Core partners included a rural family practice residency program, a rural pediatric practice in northern Maine, and public health nurses statewide. The telegenetics model created was based on development and implementation of a preventive and medical management technology solution, conducting a pilot study to collect data, and approaching insurance companies for reimbursement. Evaluation included surveys on the quality, acceptability, and usefulness of genetics services delivered via telemedicine, telephone interviews, and decision-making confidence evaluations. Results: During the project period, 24 rural clinical sites participated. In total, 93 presentations were given, and 125 patients were evaluated. Sixty-four percent of patients evaluated were pediatric. Despite site coordinator efforts to complete satisfaction surveys, the provider and patient response level was low (18% and 25%, respectively). Of those evaluations received, provider and patient response to telegenetics was positive. Decision-making confidence for genetics and neurology consultants was high. Our experience contributes to the development of telegenetics models that can be used in other rural states. Genet Med 2005: 7(1):21-27.

Telegenetics: a systematic review of telemedicine in genetics services

“…24,27,37 Of the 125 patients who were evaluated and/or counseled via telemedicine in the study by Lea et al, 37 64% received pediatric and/or neurological genetics consultations and the rest received consultations for cancer or reproductive genetics counseling. Pediatric telegenetics services often included physical examinations, whereas consultations for cancer generally only involved a review of the patients' family history, the provision of information, and psychosocial support.…”

“…Eight of the studies did not have a comparison group, and reported data solely on those who received genetics services via a telemedicine. 24,26,[29][30][31][32][35][36][37][38] All the studies measured patient satisfaction with the telegenetics consultation; in some cases, the health professionals' satisfaction was also assessed. The methods of measuring satisfaction varied between studies, with many researchers developing their own scales of satisfaction, whereas others based their scales on previous research.…”

“…24,28,33 There were no reports on clinical or behavioral outcomes such as uptake of genetics testing or cancer screening after telegenetics counseling for hereditary cancer. However, Lea et al, 37 Hopper et al, 35 and Stalker et al 36 reported on the clinical efficacy of diagnosing pediatric genetic disorders through the use of telegenetics. in the combined (telemedicine plus face-to-face) group (P = 0.02).…”

“…Those involved in the care of pediatric patients felt that telemedicine was an effective medium through which to evaluate genetic conditions in their children. [35][36][37] Where a comparison group was utilized, the satisfaction levels of those receiving telegenetics services were generally no different from those in the group receiving face-toface counseling. Indeed, in one study, the satisfaction level in the telegenetics group was higher than in the control group.…”

“…36 Patients tended to be more satisfied than the genetics practitioners with telegenetics counseling. 24,29,37,38 Patients viewed the technical difficulties involved as being less problematic, and were more satisfied with the rapport established with the genetics professional.…”