Subject(s)
Biological Specimen Banks/ethics , Genetic Testing/ethics , Social Discrimination/prevention & control , Biological Specimen Banks/legislation & jurisprudence , Biological Specimen Banks/standards , China , Europe , Genetic Testing/legislation & jurisprudence , Genetic Testing/standards , Human Genetics/organization & administration , Human Rights , Humans , Social Discrimination/trends , Societies, Scientific/standardsABSTRACT
The national importance of telemedicine for safe and effective patient care has been highlighted by the current COVID-19 pandemic. Prior to the 2020 pandemic the Division of Genetics and Metabolism piloted a telemedicine program focused on initial and follow-up visits in the patients' home. The goals were to increase access to care, decrease missed work, improve scheduling, and avoid the transport and exposure of medically fragile patients. Visits were conducted by physician medical geneticists, genetic counselors, and biochemical dietitians, together and separately. This allowed the program to develop detailed standard operating procedures. At the onset of the COVID-19 pandemic, this pilot-program was deployed by the full team of 22 providers in one business day. Two physicians remained on-site for patients requiring in-person evaluations. This model optimized patient safety and workforce preservation while providing full access to patients during a pandemic. We provide initial data on visit numbers, types of diagnoses, and no-show rates. Experience in this implementation before and during the pandemic has confirmed the effectiveness and value of telemedicine for a highly complex medical population. This program is a model that can and will be continued well-beyond the current crisis.
Subject(s)
COVID-19/epidemiology , Delivery of Health Care/organization & administration , Endocrinology/organization & administration , Genetics, Medical/organization & administration , Models, Organizational , Pandemics , Telemedicine/organization & administration , Adolescent , Adult , Child , Child, Preschool , Delivery of Health Care/methods , Delivery of Health Care/standards , Endocrinology/education , Female , Genetic Counseling/methods , Genetic Counseling/organization & administration , Genetic Counseling/standards , Genetic Diseases, Inborn/epidemiology , Genetic Diseases, Inborn/therapy , Genetic Testing/methods , Genetic Testing/standards , Genetics, Medical/education , Humans , Implementation Science , Infant , Infant, Newborn , Internship and Residency/methods , Internship and Residency/organization & administration , Internship and Residency/standards , Male , Metabolic Diseases/epidemiology , Metabolic Diseases/therapy , Middle Aged , Patient Safety , Pilot Projects , Program Evaluation , Telemedicine/methods , Young AdultSubject(s)
COVID-19/epidemiology , Genetic Counseling/organization & administration , Pandemics , Telemedicine , Feasibility Studies , Female , Genetic Counseling/methods , Genetic Testing/methods , Genetic Testing/standards , History, 21st Century , Humans , Male , Pregnancy , Prenatal Diagnosis/methods , Prenatal Diagnosis/standards , Remote Consultation/methods , Remote Consultation/organization & administration , Telemedicine/methods , Telemedicine/organization & administration , Telemedicine/standards , WorkflowABSTRACT
OBJECTIVE: Advances in prenatal genetics place additional challenges as patients must receive information about a growing array of screening and testing options. This raises concerns about how to achieve a shared decision-making process that prepares patients to make an informed decision about their choices about prenatal genetic screening and testing options, calling for a reconsideration of how healthcare providers approach the first prenatal visit. METHODS: We conducted interviews with 40 pregnant women to identify components of decision-making regarding prenatal genetic screens and tests at this visit. Analysis was approached using grounded theory. RESULTS: Participants brought distinct notions of risk to the visit, including skewed perceptions of baseline risk for a fetal genetic condition and the implications of screening and testing. Participants were very concerned about financial considerations associated with these options, ranking out-of-pocket costs on par with medical considerations. Participants noted diverging priorities at the first visit from those of their healthcare provider, leading to barriers to shared decision-making regarding screening and testing during this visit. CONCLUSION: Research is needed to determine how to restructure the initiation of prenatal care in a way that best positions patients to make informed decisions about prenatal genetic screens and tests.