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1.
Telemed J E Health ; 30(8): e2232-e2239, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38916873

RESUMEN

Introduction: Before the COVID-19 public health emergency, few genetics providers used telehealth. As a response to this, many genetics providers began conducting telehealth care, referred to as telegenetics, usually with guidance from their institutions but without specific guidance related to the uniqueness of genetic services. Objectives: The Telegenetics Workgroup of the National Coordinating Center for Regional Genetics Networks convened a panel of experts in the fields of telemedicine, genetics, and genomics to review the existing literature on telegenetics and synthesize best operating practices for medical geneticists, genetic counselors, and metabolic dietitians providing telegenetics services. Methods: The group searched PubMed using the terms "telegenetics," "telemedicine + genetics," and "telehealth + genetics." The group also reviewed the Northeast Telehealth Resource Center's telegenetics webliography. Websites were searched, including the American Telemedicine Association's website, Center for Connected Health Policy, and National Telehealth Resource Center for position statements, standards documents, and guidelines. The group met frequently by videoconference and discussed the literature, and using expert consensus, the group determined best practices in providing telegenetics services. Results: These telegenetics best practices cover important aspects of telegenetics services, including, but not limited to, ongoing delivery of telegenetics services, use of special technology, legal and regulatory requirements, and considerations regarding special settings and circumstances in which telegenetics may be conducted. Conclusions: Recognizing the growing use of telegenetics and a future in which telegenetics continues to be part of the regular practice of genetics, this guide informs genetics providers of best practices for delivering telegenetics services to patients.


Asunto(s)
COVID-19 , Pandemias , SARS-CoV-2 , Telemedicina , Humanos , Telemedicina/organización & administración , SARS-CoV-2/genética , Servicios Genéticos/organización & administración , Infecciones por Coronavirus/epidemiología , Guías de Práctica Clínica como Asunto , Neumonía Viral/epidemiología , Estados Unidos , Betacoronavirus/genética
2.
Genet Med ; 26(9): 101176, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-38832564

RESUMEN

PURPOSE: Research that includes diverse patient populations is necessary to optimize implementation of telehealth. METHODS: As part of a Clinical Sequencing Evidence-Generating Research Consortium cross-site study, we assessed satisfaction with mode of return of results (RoR) delivery across a diverse sample of participants receiving genetic testing results in person vs telemedicine (TM). RESULTS: Ninety-eight percent of participants were satisfied with their mode of results delivery. Participants receiving results by TM were more likely to report a preference for receiving results in a different way and challenges with providers noticing difficulties with understanding. More than 90% reported satisfaction across all items measuring support and interaction during sessions. Participants self-reporting Hispanic/Latino or Black/African American race and ethnicity compared with White/European American, fewer years of education, and having lower health literacy were more likely to report challenges with understanding the information or asking questions. Participants who were White/European American, had more years of education, and higher health literacy reported higher communication scores, reflecting more positive evaluations of the communication experience. CONCLUSION: TM is an acceptable mode of return of results delivery across diverse settings and populations. Research optimizing approaches for underrepresented populations, populations with lower levels of education and health literacy, and multilingual populations is necessary.


Asunto(s)
Pruebas Genéticas , Humanos , Femenino , Masculino , Adulto , Pruebas Genéticas/métodos , Persona de Mediana Edad , Telemedicina , Genómica/métodos , Satisfacción del Paciente , Alfabetización en Salud , Anciano
3.
Genes (Basel) ; 15(6)2024 Jun 13.
Artículo en Inglés | MEDLINE | ID: mdl-38927716

RESUMEN

The delivery of genetic services in developing countries is faced with significant challenges, despite medical and technological advances globally. The Philippines, being an archipelago, faces even more challenges, with significant disparities in access to healthcare, and tertiary medical centers and specialists being concentrated in the major cities. The utilization of different networks for the integration of genetic services in the existing public health delivery system has been valuable. Using the well-established network of the national newborn screening program, genetic services have been successfully integrated into the delivery of healthcare, even at the grassroot level. Equitable access to healthcare, including genetic services, was highlighted and supported by the enactment of the Rare Disease Law in 2016. The support of the academe to assure the sustainability of services was evident in the establishment of a genetic counseling program to augment the work of a handful of clinical geneticists. Professional societies and support groups have been instrumental in identifying genetic conditions to be prioritized and lobbying for increased public awareness, leading to national programs and policies. This paper primarily discusses the value of networks in the delivery of genetic services, specifically newborn screening, programs for rare diseases, birth defects, and genetic counseling.


Asunto(s)
Servicios Genéticos , Tamizaje Neonatal , Salud Pública , Humanos , Recién Nacido , Atención a la Salud , Asesoramiento Genético , Accesibilidad a los Servicios de Salud , Filipinas
4.
J Community Genet ; 15(2): 119-127, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38095830

RESUMEN

Telegenetics played an important role in providing genetic services to patients during the COVID-19 pandemic. In particular, at our institution, it enabled us to expand our genetic counseling and testing services to non-local family members of patients outside of our prior catchment area. However, as telegenetics continues to be utilized even as social distancing is no longer required, further information is needed regarding the impact of this modality on patient experience within cardiogenetics. This study qualitatively explored the experiences of 12 genotype positive individuals who underwent genetic counseling and testing via telegenetics during the first 22 months of the COVID-19 pandemic and compared the experiences of local vs. non-local patients. Both local and non-local participants discussed similar benefits and drawbacks to the use of technology in telegenetics and overall found the use of telegenetics and at-home genetic testing to be convenient. Both groups also noted having to make changes in their daily lives and future planning as a consequence of the positive genetic testing results. However, access to follow-up care differed between local and non-local participants, with more local participants having scheduled and attended appointments with the appropriate medical providers compared to non-local participants. Supplying non-local patients access to remote cardiogenetic testing may therefore require careful consideration in how to ensure proper follow-up care for genotype positive patients and may necessitate the involvement of national professional or patient-centered organizations to help streamline the referral process.

5.
Telemed J E Health ; 30(1): 118-125, 2024 01.
Artículo en Inglés | MEDLINE | ID: mdl-37294555

RESUMEN

Introduction: The 2019 Coronavirus Disease (COVID-19) pandemic necessitated a mass transition in genetics clinics nationwide from in-person care to virtual care through telehealth. Before the COVID-19 pandemic, there was limited research on the use of telehealth in genetics specialties. Therefore, the COVID-19 pandemic presented a unique opportunity to study this emerging mode of care delivery in the setting of genetics clinics. This study described the scope of telehealth use in genetics clinics nationally and determined how COVID-19 influenced patients' decisions regarding their genetic care. Methods: Two anonymous surveys for patients and providers were developed. The patient survey was offered online to all genetics patients seen through telehealth at a Manhattan-based practice between March and December 2020. The provider survey was distributed through several listservs to genetics providers nationwide. Results: Patients (n = 242) and providers (n = 150) responded. Telehealth was used in all specialty genetics clinics for both initial and follow-up visits. Telehealth was both effective and satisfactory to patients for both visit types and across specialties; however, Asian and Hispanic/Latino patients had significantly lower mean satisfaction scores compared with White patients (p = 0.03 and 0.04, respectively). Patients appreciated telehealth for its convenience and to avoid COVID-19 exposure. Providers across specialties and provider types preferred telehealth for follow-up rather than initial visits. Several clinic initiatives related to telehealth were identified. Discussion: Telehealth was generally well received by both patients and providers, and is expected to become permanent option in genetics clinics. Further studies are needed to identify barriers to accessing telehealth.


Asunto(s)
COVID-19 , Telemedicina , Humanos , COVID-19/epidemiología , Pandemias , Atención a la Salud , SARS-CoV-2
6.
Front Genet ; 14: 1239817, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37600657

RESUMEN

The need for the expansion of genomic services has been at a record time high in the past decade. As technological advancement continues to strengthen the entire genetic and genomic pipeline and clinical operational workflow, the major challenge remains to be the speed of workforce development to meet service growth. In particular, the international expansion of genetic counselling (GC) services has been a topic of interest for the past few years. GC is an emerging profession in most of Asia, and in many countries the profession of GC often refers to physicians or front-line health workers with expertise in genetics to provide GC services rather than being a specific independent profession. As genetic and genomic services, especially pre-test and post-test GC, expand globally, the need to tackle the longstanding obstacles of GC personnel shortage and funding issues must not be overlooked. There is an urgent need internationally, and especially in Asia, where GC profession is comparatively less well-established, to seek alternative approaches to meet service demand. The present review examines the global development and feasibility of tele-genetics and tele-genetic counselling (TGC), and serves as the foundation to explore a possible roadmap in Hong Kong via the Hong Kong Genome Project.

7.
J Genet Couns ; 32(6): 1217-1221, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37528687

RESUMEN

As the provision of telehealth genetic counseling (THGC) services continues to expand, it is imperative that genetic counseling students gain proficiency in telehealth service delivery. To prepare students to provide THGC services, the MSGC program at the University of Pennsylvania has included didactic sessions on THGC, THGC role plays, THGC standardized patient sessions, and THGC fieldwork experiences and clinical rotations. This article highlights best practices in THGC and guidance for Master of Science in Genetic Counseling (MSGC) programs training the next generation of genetic counselors providing THGC services.


Asunto(s)
Consejeros , Telemedicina , Humanos , Asesoramiento Genético , Curriculum , Escolaridad
8.
J Genet Couns ; 2023 May 15.
Artículo en Inglés | MEDLINE | ID: mdl-37183788

RESUMEN

The purpose of this nonrandomized study was to compare several attributes of hereditary cancer risk assessment using a collaborative model of service delivery. Arm 1 included patients seen in-person by a board-certified genetic counselor (CGC), Arm 2 included high-complexity triaged patients from distant sites who received telegenetics with a CGC, and Arm 3 included low-complexity triaged patients from distant sites who had in-person risk assessment with a locally placed genetic counselor extender (GCE). A total of 152 patients consented and 98 had complete data available for analysis (35 in Arm 1, 33 in Arm 2, and 30 in Arm 3). The three groups were comparable in age, ethnicity, education, employment, and cancer status. There was no significant difference in median wait time or distance traveled to receive care across all three arms. However, if patients in Arms 2 and 3 had to access the CGC in-person, they would have had to travel significantly further (p < 0.0001). The time spent in a session was significantly longer in Arm 3 with a GCE than with a CGC in-person or by telegenetics (p < 0.01). There was no difference in the number of essential elements covered in the appointment, change in cancer worry, or appointment satisfaction across all three arms, although the sample size was small. Employing a collaborative model of service delivery with GCEs and telegenetics is feasible, satisfactory to patients and reduces the distance patients travel to access hereditary cancer genetic services.

9.
Hered Cancer Clin Pract ; 21(1): 6, 2023 May 08.
Artículo en Inglés | MEDLINE | ID: mdl-37158974

RESUMEN

BACKGROUND: The study purpose is to compare outcomes associated with completion of genetic testing between telemedicine and in-person gastrointestinal cancer risk assessment appointments during the COVID-19 pandemic. METHODS: Data was collected on patients with scheduled appointments between July 2020 and June 2021 in a gastrointestinal cancer risk evaluation program (GI-CREP) that utilized both telemedicine and in-person visits throughout the COVID-19 pandemic, and a survey was administered. RESULTS: A total of 293 patients had a GI-CREP appointment scheduled and completion rates of in-person versus telemedicine appointments were similar. Individuals diagnosed with cancer and those with Medicaid insurance had lower rates of appointment completion. Although telehealth was the preferred visit modality, there were no differences in recommending genetic testing nor in the consent rate for genetic testing between in-person and telemedicine visits. However, of patients who consented for genetic testing, more than three times more patients seen via telemedicine did not complete genetic testing compared to those seen in-person (18.3% versus 5.2%, p = 0.008). Furthermore, telemedicine visits had a longer turnaround time for genetic test reporting (32 days versus 13 days, p < 0.001). CONCLUSIONS: Compared to in-person GI-CREP appointments, telemedicine was associated with lower rates of genetic testing completion, and longer turnaround time for results.

10.
Genet Med ; 25(5): 100802, 2023 05.
Artículo en Inglés | MEDLINE | ID: mdl-36906849

RESUMEN

PURPOSE: National efforts have prioritized the identification of effective methods for increasing case ascertainment and delivery of evidence-based health care for individuals at elevated risk for hereditary cancers. METHODS: This study examined the uptake of genetic counseling and testing following the use of a digital cancer genetic risk assessment program implemented at 27 health care sites in 10 states using 1 of 4 clinical workflows: (1) traditional referral, (2) point-of-care scheduling, (3) point-of-care counseling/telegenetics, and (4) point-of-care testing. RESULTS: In 2019, 102,542 patients were screened and 33,113 (32%) were identified as at high risk and meeting National Comprehensive Cancer Network genetic testing criteria for hereditary breast and ovarian cancer, Lynch syndrome, or both. Among those identified at high risk, 5147 (16%) proceeded with genetic testing. Genetic counseling uptake was 11% among the sites with workflows that included seeing a genetic counselor before testing, with 88% of patients proceeding with genetic testing after counseling. Uptake of genetic testing across sites varied significantly by clinical workflow (6% referral, 10% point-of-care scheduling, 14% point-of-care counseling/telegenetics, and 35% point-of-care testing, P < .0001). CONCLUSION: Study findings highlight the potential heterogeneity of effectiveness attributable to different care delivery approaches for implementing digital hereditary cancer risk screening programs.


Asunto(s)
Neoplasias Colorrectales Hereditarias sin Poliposis , Síndromes Neoplásicos Hereditarios , Femenino , Humanos , Flujo de Trabajo , Pruebas Genéticas , Síndromes Neoplásicos Hereditarios/diagnóstico , Síndromes Neoplásicos Hereditarios/genética , Asesoramiento Genético , Neoplasias Colorrectales Hereditarias sin Poliposis/diagnóstico , Neoplasias Colorrectales Hereditarias sin Poliposis/genética , Predisposición Genética a la Enfermedad
11.
Pilot Feasibility Stud ; 9(1): 47, 2023 Mar 22.
Artículo en Inglés | MEDLINE | ID: mdl-36949526

RESUMEN

BACKGROUND: The COVID-19 pandemic forced healthcare institutions and many clinical research programs to adopt telehealth modalities in order to mitigate viral spread. With the expanded use of telehealth, there is the potential to increase access to genomic medicine to medically underserved populations, yet little is known about how best to communicate genomic results via telehealth while also ensuring equitable access. NYCKidSeq, a multi-institutional clinical genomics research program in New York City, launched the TeleKidSeq pilot study to assess alternative forms of genomic communication and telehealth service delivery models with families from medically underserved populations. METHODS: We aim to enroll 496 participants between 0 and 21 years old to receive clinical genome sequencing. These individuals have a neurologic, cardiovascular, and/or immunologic disease. Participants will be English- or Spanish-speaking and predominantly from underrepresented groups who receive care in the New York metropolitan area. Prior to enrollment, participants will be randomized to either genetic counseling via videoconferencing with screen-sharing or genetic counseling via videoconferencing without screen-sharing. Using surveys administered at baseline, results disclosure, and 6-months post-results disclosure, we will evaluate the impact of the use of screen-sharing on participant understanding, satisfaction, and uptake of medical recommendations, as well as the psychological and socioeconomic implications of obtaining genome sequencing. Clinical utility, cost, and diagnostic yield of genome sequencing will also be assessed. DISCUSSION: The TeleKidSeq pilot study will contribute to innovations in communicating genomic test results to diverse populations through telehealth technology. In conjunction with NYCKidSeq, this work will inform best practices for the implementation of genomic medicine in diverse, English- and Spanish-speaking populations.

12.
Eur J Med Genet ; 66(6): 104749, 2023 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-36948289

RESUMEN

Telemedicine provides healthcare services remotely and represents a fundamental resource for the management of rare and fragile patients. Tele-health implementation is a main objective of the European Reference Networks (ERNs) mission to accelerate diagnosis for rare diseases. TeleNewCARe is a pilot case-control project which evaluates the efficacy and satisfaction of telegenetics for neuromuscular and cardiac adult patients, compared to face-to-face genetic counselling. The virtual sessions were co-hosted by a medical geneticist and a neurologist/cardiologist. Specific questionnaires (Clinical Genetics Satisfaction Questionnaire (CGS), Telemedicine Satisfaction Questionnaire (TSQ) and a Satisfaction Questionnaire for medical geneticists) were used to assess the effectiveness and fulfilment of telecounselling, both for patients and health care providers. Satisfaction expressed for telegenetics did not significantly differ from face-to-face counselling. The virtually enrolled patients declared they had the possibility to relate confidentially with the specialists, to share information and to be informed in an exhaustive way about their disease. Almost all patients declared themselves willing to reuse the telecounselling in the future. The multidisciplinary care was perceived as a significant added value. No overt technical problems were reported although the need for digital skills and tools can limit patients' compliance. Our experience supports telegenetics as a valid alternative to traditional genetic counselling in cardiac and neuromuscular patients. This innovative approach facilitates multidisciplinary care, grants a periodical follow up, without forcing patients to discomfortable travelling, and allows to maintain expert care. This result meets the ERNs needs to reduce patients' burden to access and monitor their healthcare.


Asunto(s)
Cardiopatías , Telemedicina , Adulto , Humanos , Asesoramiento Genético , Pacientes , Cardiopatías/genética , Cardiopatías/terapia , Estudios de Casos y Controles
13.
Am J Med Genet A ; 191(4): 1013-1019, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36637370

RESUMEN

Telegenetics has shifted some genetic testing performance to the patient's own home, with the patient collecting his/her own sample. Little is known regarding the rate of test completion of such home-based genetic testing. This study compared the completion rate of home-based genetic tests before and after a reminder system was implemented. In the pre-reminder group, we reviewed medical records for patients who were seen via telegenetics and agreed to complete genetic testing using an at-home test kit. In the reminder group, a prospective analysis of the genetic test completion rate was performed taking a clinical quality improvement approach where three reminders were provided for patients who had not submitted their at-home genetic testing. Our study included 94 patients' records: 46 pre-reminders and 48 reminders. The lab received 24 patient samples (52.2%) in the pre-reminder group. In the reminder group, 30 patients returned their kits (62.5%). Despite a higher percentage of patients completing their test in the reminder group, there was no statistically significant difference between the pre-reminder and reminder groups. The rate of test completion in our pilot test was statistically similar between the two groups, but the reminder group was trending toward a higher percent of completion which may be clinically meaningful.


Asunto(s)
Pruebas Genéticas , Neoplasias , Humanos , Masculino , Femenino , Proyectos Piloto , West Virginia , Región de los Apalaches
14.
J Genet Couns ; 32(1): 4-17, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-36054686

RESUMEN

There are currently no practice guidelines available for genetic counseling using telehealth modalities. This evidence-based practice guideline was developed in response to increasing use of alternative service delivery models for genetic counseling, specifically telephone and video-based genetic counseling (telehealth genetic counseling or THGC). A recent systematic evidence review (SER) compared outcomes of THGC with in-person genetic counseling and found that for the majority of studied outcomes, THGC was a non-inferior and comparable service delivery model. The SER results were used to develop this guideline. The current and anticipated future use of THGC, including the influence of the COVID-19 pandemic, provides the context for this guideline. Recommendation: The Telehealth Practice Guideline author workgroup conditionally recommends telehealth genetic counseling, either via telephone or video, as a delivery method for genetic counseling. Depending on factors unique to individual healthcare systems and provider and patient populations, THGC may be the only service delivery model available or may be utilized in addition to other service delivery models including in-person genetic counseling. The evidence shows large desirable effects, minor undesirable effects, and increased equity for patients when THGC is available. THGC may reduce or remove existing barriers to patient access to genetic counseling, such as medical conditions and/or disabilities that may affect a patient's ability to travel, inflexible work or school schedules, and lack of reliable transportation, finances, or dependent care. THGC is likely acceptable to key groups impacted by its use and is feasible to implement. Certain patient populations may require additional resources or encounter more barriers in using telemedicine services in general. For these populations, THGC can still be a valuable option if solutions are available.


Asunto(s)
COVID-19 , Consejeros , Telemedicina , Humanos , Asesoramiento Genético/métodos , Pandemias , Telemedicina/métodos
15.
Artículo en Inglés | WPRIM (Pacífico Occidental) | ID: wpr-984458

RESUMEN

@#The Philippines is a densely populated nation faced with multiple challenges in the healthcare field given its geographic, cultural, and socioeconomic barriers. Due to the geographic limitations of medical services in the country, many patients must travel a great distance to referral centers. This was further exacerbated by the Coronavirus disease 2019 (COVID-19) pandemic, which spread across the world and upended lives. This pandemic triggered a public health crisis that impacted healthcare systems, healthcare workers, and communities worldwide. It compounded current difficulties with the provision and accessibility of medical services, necessitating the employment of alternative methods of providing health coverage. As a result, advanced technological methods for patient diagnosis, monitoring, treatment, and counseling were rapidly implemented.1 Interest in these technological advances began prior to the COVID-19 pandemic, though primarily in developed countries. However, during this global outbreak, telehealth practices – which refer to online health care services provided by all health care professions – have seen a rapid increase in popularity.2,3 Telehealth was brought to the forefront in all countries in order to surmount lockdown constraints, allow continuous provision of health care for patients, and limit exposure to health systems and health providers.4 Traditional medical education and training were likewise disrupted during this time, resulting in the incorporation of telehealth into medical education. To reduce the risks associated with more personnel in the hospital, medical students were withdrawn from clinical environments during the COVID-19 outbreak. This created an environment of uncertainty and limited clinical exposure, with concerns surrounding progression through the medical course and training program.5 Continuing medical education, which has traditionally been based on clinical knowledge and skills, now requires online technical communication skills. Innovative services were rapidly developed with health professionals embracing this new technological competence, enabling general consultation for patients, remote patient monitoring, and self-directed patient care, thereby decreasing the burden on health facilities. Digital learning platforms also provided an effective way to address the learning gaps caused by the pandemic. The restriction of “in-person” delivery of healthcare services due to the global outbreak has prompted physicians, including clinical geneticists and genetic counselors, to investigate alternative methods of providing health care to patients. A telehealth innovation for online delivery of clinical genetic and genetic counseling services is the Philippine General Hospital’s Telegenetics Service. Despite being launched in 2013 to serve genetics patients across the country, this service has since been upgraded and capitalized resulting in patient appreciation for its COVID-19 exposure prevention, increased access, and time and cost efficiency. However, the telegenetics service has its limitations.6,7 Despite the expanding scope of telehealth/telegenetics and its immediate application, issues such as data/patient privacy, organizational readiness, digital maturity, regulatory impediments, access and acceptance of the technology, geographical and digital disparities, and its integration with traditional medical services have emerged.8 Lack of a detailed physical examination is also lost in a virtual visit, with focused questions leading to fragmented, impersonal interactions. Even when restrictions were lifted, telehealth usage nonetheless remained significantly higher than it had been prior to the pandemic. This may indicate a shift in public opinion in favor of this innovative medical practice.9 With the expansion of genetic services in the country, there is now a greater need for telegenetics due to the increased demand for clinical genetic and genetic counseling expertise. Therefore, evidence on the safety and efficacy of this technology in comparison to the traditional healthcare delivery approach is required. If the technology has the potential to improve health care, we must guarantee its availability in all resource-limited areas. Future efforts should thus focus on establishing solutions to address the aforementioned issues and concerns within our healthcare and education systems, thereby ultimately enhancing the standard of medical care.


Asunto(s)
Filipinas , Atención a la Salud , COVID-19
16.
Acta Medica Philippina ; : 5-14, 2023.
Artículo en Inglés | WPRIM (Pacífico Occidental) | ID: wpr-984460

RESUMEN

Background@#Telegenetics has been a very useful platform to continue the different services offered by the clinical genetics team especially during the COVID-19 pandemic, when this mode of care had been maximized.@*Objective@#This paper aimed to present the process of telegenetics in a tertiary hospital and the feedback for this service through patient satisfaction surveys. @*Methods@#Telegenetics consultation is divided into three phases: pre-consultation, consultation, and post-consultation. Patient satisfaction in the delivery of genetics services were obtained through a survey answered by patients/caregivers after telegenetics consultation. Ratings of patient satisfaction on telegenetics consultation during the pandemic (September 2020 to February 2021) were compared from that of face-to-face consultations before the pandemic (September 2019 to February 2020).@*Results@# In 2020, there were a total of 1,228 consultations made via telegenetics. Of which, 319 consultations were for the metabolic service, 138 for dysmorphology, 207 for genetic counseling, and 564 for dietary counseling. New patients comprised 13.84% of the consultations and 86.16% were from follow-up patients. In 2021, there were a total of 3,124 consultations made via telegenetics. Of which, 617 consultations were for the metabolic service, 688 for dysmorphology, 961 for genetic counseling, and 858 for dietary counseling. New patients comprised 12.93% of the consultations and 87.07% were from follow-up patients. Over a period of 6 months, pre-pandemic (face-to-face consultation) and pandemic (telegenetics) patient satisfaction survey results showed no significant difference on the results for both new patient consultations and follow-up patient consultations that is a standard satisfactory rating of at least 3 (satisfactory) on customer satisfaction by more than 70% of the respondents. @*Conclusion@#Patient satisfaction ratings on the utility of telegenetics was comparable to that of face-to-face consultations. Its use has shown benefits like cost-effectiveness, time efficiency, improved accessibility, and psychological benefits as some patients fear a hospital setting during the pandemic. It also has limitations like possible technical difficulties during consultations and limited opportunity for physical examination, establishing rapport, and exploring psychosocial issues. Hence it is important to consider the possibility of a telegenetics consultation as an alternative to a face-to-face consultation.


Asunto(s)
Satisfacción del Paciente
17.
Fam Cancer ; 22(1): 43-48, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-35867288

RESUMEN

During Covid-19 pandemic most hospitals have restricted in-person delivery of non-essential healthcare services, including genetic testing delivery, to slow the spread of the virus. Our Onco-Genetic Service also faced this challenging period and had to re-organize its clinical practice with the use of tele-health. Aim of the present paper is to understand whether and how Covid-19-related changes in medical practice influenced patients' satisfaction about the health service provided. 125 BRCA1/2 non carriers (109/125, 87.2% female and 16/125, 12.8% male) in Istituto Tumori "Giovanni Paolo II" of Bari were enrolled. All participants were asked to choose whether they prefer in-person or remote post-test counselling session. Basing on patients' choice, two groups of subjects were composed. One week after the post-test counselling session, participants were phone called and asked to complete: a socio-demographic form, a brief structured interview about their Covid-19 related worries and their satisfaction with the health service provided, Hospital Anxiety and Depression Scale and Fear of Covid-19 scale. Qualitative information about patients' choice were also collected. No significant difference about patients' satisfaction with the health service provided emerged between groups. Patients who preferred remote post-test counselling had higher anxiety, worries and fear-of Covid-19 than the others. All remote-counselling subjects preferred tele-genetics because of Covid-19 security, would choose it again and would recommend it to others. Cancer tele-genetics offers good guarantees of comfort and efficacy, but patients' choices are related to personal and psychological variables. The use of tele-genetics has to be a patient's choice.


Asunto(s)
Proteína BRCA1 , Proteína BRCA2 , COVID-19 , Pruebas Genéticas , Femenino , Humanos , Masculino , Ansiedad/psicología , Proteína BRCA1/genética , COVID-19/epidemiología , Pandemias , Satisfacción del Paciente , Proteína BRCA2/genética , Consulta Remota , Prioridad del Paciente
19.
J Telemed Telecare ; : 1357633X221112556, 2022 Jul 14.
Artículo en Inglés | MEDLINE | ID: mdl-35833346

RESUMEN

INTRODUCTION: Direct-to-patient telegenetics, which uses video conferencing to connect health professionals directly to patients' devices, has been widely adopted during the pandemic. However, limited evidence currently supports its use in cancer genetic counselling. METHODS: Before the pandemic, we conducted a two-arm partially randomised patient-preference pilot trial to evaluate direct-to-patient telegenetics for patients and genetic counsellors. Patients were randomised to a standard care (telephone/in-person) or direct-to-patient telegenetics appointment. Patients completed questionnaires before, during and after appointments measuring: psychological distress, perceived genetic counsellor empathy, telegenetics satisfaction and technical challenges. Genetic counsellor-reported outcomes -measured using purpose-designed questionnaires- included telegenetics satisfaction, therapeutic alliance and time for assessment. Open-ended patient and genetic counsellor questionnaire responses were synthesised using content analysis. RESULTS: Fifty-six patients and seven genetic counsellors participated. Thirteen patients switched appointment type. No significant differences in distress (P = 0.84) were identified between direct-to-patient telegenetics and standard care. Perceived genetic counsellor empathy was high for all appointment types. There was no evidence of differences in reported maximum empathy scores between direct-to-patient telegenetics and standard care [telephone (P = 0.57); in-person (P = 0.44)]. Patients reported high direct-to-patient telegenetics satisfaction despite technical challenges in most appointments (65%). Genetic counsellors were satisfied with direct-to-patient telegenetics and perceived high therapeutic alliance irrespective of appointment type. No significant differences in genetic counsellor time were identified between direct-to-patient telegenetics and standard care [telephone (P > 0.90); in-person (P = 0.35)]. DISCUSSION: Our results suggest that direct-to-patient telegenetics is a satisfactory service delivery model that does not appear to compromise patient-genetic counsellor relationships or increase patient distress. These findings support direct-to-patient telegenetics use in cancer genetic counselling, although larger trials are needed.

20.
J Community Genet ; 13(4): 449-458, 2022 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-35794442

RESUMEN

The COVID-19 pandemic required genetic counseling services, like most outpatient healthcare, to rapidly adopt a telemedicine model. Understanding the trends in patients' preferences for telemedicine relative to in-person service delivery both before and after the advent of the COVID-19 pandemic may aid in navigating how best to integrate telemedicine in a post-COVID-19 era. Our study explored how respondents' willingness to use, and preference for, telemedicine differed from before to after the onset of the COVID-19 pandemic. Respondents included patients, or their parent/guardian, seen in a general medical genetics clinic in 2018, prior to the COVID-19 pandemic, and in 2021, during the COVID-19 pandemic. Respondents were surveyed regarding their willingness to use telemedicine, preference for telemedicine relative to in-person care, and the influence of various factors. Among 69 pre-COVID-19 and 40 current-COVID-19 respondents, there was no shift in willingness to use, or preference for, telemedicine across these time periods. About half of respondents (50.6%) preferred telemedicine visits for the future. Of the 49.4% who preferred in-person visits, 79.1% were still willing to have visits via telemedicine. Predictors of these preferences included comfort with technology and prioritization of convenience of location. This study suggests that a hybrid care model, utilizing telemedicine and in-person service delivery, may be most appropriate to meet the needs of the diverse patients served. Concern for COVID-19 was not found to predict willingness or preference, suggesting that our findings may be generalizable in post-pandemic contexts.

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