A novel approach in pediatric telegenetic services: geneticist, pediatrician and genetic counselor team

Abstract

PurposeOur aim was to improve access to genetic services in an underserved region by developing a collaborative telegenetic service delivery model with a pediatrician, medical geneticist, and genetics counselor (GC).MethodsProtocols for the evaluation of common genetic indications were developed. Patients referred with indications suggestive of a syndromic etiology were scheduled to see the geneticist directly via telegenetics. Other patients were scheduled to see the pediatrician and GC in person before follow-up with the geneticist if indicated. Patients seen by the geneticist and/or pediatrician/GC were enumerated and the next available appointment was tracked. Patient satisfaction surveys were conducted.ResultsOf the 265 patients evaluated during the study period, 116 (44%) were evaluated by a pediatrician and GC in person first, after which 82 (71% of those evaluated) required further follow-up with the geneticist. The next available appointment with a pediatrician and GC never exceeded 6 weeks, while new appointments with a geneticist ranged from 3 to 9 months. All patients reported high satisfaction with this genetic service model.ConclusionThe pediatrician/GC clinic provides a model of collaborative care that is a medical home neighbor and exemplifies the integration of genetics into primary care. The telegenetics clinic offers a viable solution to providing competent and convenient access to a geneticist for patients in chronically underserved regions.

A Comprehensive Program Enabling Effective Delivery of Regional Genetic Counseling

“…It has been hypothesized that telegenetics may improve access to genetic counseling, especially in the era of increasing demand for genetic services. 24,29,30 Our early experience presented here supports these findings.…”

“…28 McDonald et al demonstrated that the most important component of a successful program involved one-on-one rather than group consultation, but that inperson counseling was least important to perceived patient satisfaction. 29 Our model included individual consultation with a certified genetic counselor through telegenetics, but incorporation of a medical geneticist may be an option to consider in future investigations. It has been hypothesized that telegenetics may improve access to genetic counseling, especially in the era of increasing demand for genetic services.…”

Clinical models of telehealth in genetics: A regional telegenetics landscape

“…When examining the literature specific to genetics consultation via live videoconferencing, the term “telegenetics,” is most often used, but the terms “virtual health” (Weissman, Zellmer, Gill, & Wham, 2018), “televideo” (Voils et al, ), and web‐based/video (National Society of Genetic Counselors, ) were also noted. Collectively, these studies have demonstrated improved access to care in underserved areas with high levels of patient satisfaction and outcomes similar to in‐person consultations across many patient populations and medical indications (Abrams & Geier, ; Bradbury et al, ; Buchanan et al, ; Coelho, Arnold, Nayler, Tischkowitz, & MacKay, ; D'Agincourt‐Canning et al, ; Fournier, Bazzell, & Dains, ; Gattas, MacMillan, Meinecke, Loane, & Wootton, ; Gray et al, ; Hardy & Grinzaid, ; Hawkins, Creighton, Ho, McManus, & Hayden, ; Hilgart et al, ; Hopper, Buckman, & Edwards, ; Kubendran, Sivamurthy, & Schaefer, ; Lea et al, ; Mette et al, ; Otten, Birnie, Lucassen, Ranchor, & van Langen, ; Schwartz et al, ; Solomons, Lamb, Lucas, McDonald, & Miesfeldt, ; Stalker et al, ; Sutphen et al, ; Weissman et al, ; Wenger et al, ; Zilliacus et al, ; Zilliacus, Meiser, Lobb, Kirk, et al, ). Some studies have shown reductions in cost and time per patient for the clinic and/or the patient (Buchanan et al, ; D'Agincourt‐Canning et al, ; Otten, Birnie, Ranchor, & van Langen, ; Schwartz et al, ; Weissman et al, ), shorter wait times (Cohen et al, ; Kubendran et al, ; Stalker et al, ; Weissman et al, ), and a larger geographic reach (Cohen et al, ).…”

“…Some studies have shown reductions in cost and time per patient for the clinic and/or the patient (Buchanan et al, ; D'Agincourt‐Canning et al, ; Otten, Birnie, Ranchor, & van Langen, ; Schwartz et al, ; Weissman et al, ), shorter wait times (Cohen et al, ; Kubendran et al, ; Stalker et al, ; Weissman et al, ), and a larger geographic reach (Cohen et al, ). Interviews with patients who received such services point to convenience, reduced travel, and cost as advantages (Kubendran et al, ; Zilliacus, Meiser, Lobb, Kirk, et al, ). Despite such evidence about the utility of video consultations in genetics, prevalence studies suggest that implementation of this service delivery model is still limited.…”

“…Studies of genetics providers have revealed some perceived benefits and challenges of video consultations. Cited benefits included improved access, convenience, efficiency, and reductions in travel, wait time, and cost (Cohen, Huziak, Gustafson, & Grubs, ; Hilgart et al, ; Kubendran et al, ; Weissman et al, ; Zilliacus, Meiser, Lobb, Dudding, et al, ). Expressed challenges included technology issues, reimbursement, patient communication, lack of professional support, lack of patient need or suitability, regulatory concerns, licensure, credentialing, and test ordering logistics (Cohen et al, ; Hardy & Grinzaid, ; Hilgart et al, ; Otten, Birnie, Lucassen, et al, ; Otten, Birnie, Ranchor, et al, ; Shah et al, ; Weissman et al, ; Zilliacus, Meiser, Lobb, Dudding, et al, ).…”