Psychosocial Implications of Prenatal Telehealth Genetic Counselling: A Systematic Review

Beretich, Lauren; DeLuca, Jane M.; Eggert, Julie

doi:10.29086/jisfteh.6.e21

Cited by 4 publications

(3 citation statements)

References 19 publications

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“…The paper provides insight into the lived experiences of The major shift in the provision of clinical services for the unit was the expansion of telecounseling and a reduction in face-toface counseling. Telecounseling is not a new concept in medicine and has been used since the 2000s in genetic counseling (Beretrich et al, 2018;Trepanier & Allain, 2014) and other fields such as spinal cord injury rehabilitation , managing depression , and social work (Earle & Freddolino, 2021). In genetic counseling, telecounseling services were first implemented in breast cancer but later expanded to include other areas (Trepanier & Allain, 2014).…”

Section: What the Paper Addsmentioning

confidence: 99%

Genetic counseling experiences at the University of Cape Town during COVID‐19

Wessels

Düsterwald

Barlow

et al. 2021

Journal of Genetic Counseling

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Soon after the first COVID-19 case was reported in December 2019 in Wuhan, China, South Africa announced a national lockdown in an attempt to curb the spread of the disease. Under national lockdown, businesses were closed, learning institutions moved to emergency remote teaching (ERT), and hospitals reduced their patient loads. De-escalation of clinical services at Groote Schuur and Red Cross War Memorial Children's Hospitals affected Genetic Counseling Services and resulted in a decrease in in-person and an increase in telecounseling sessions. ERT, offered by the University of Cape Town, affected the teaching of Genetic Counseling students, and other methods of training had to be found to compensate for the lack of patient contact. In this paper, we present our Genetic Counseling team's experiences of learning and clinical services during the COVID-19 pandemic in South Africa. The team met online as a group in November 2020 to discuss their experiences. The discussion was recorded and transcribed, and topics that arose during the discussion were identified.The pandemic and the accompanying lock down, which forced trainees to move back home, resulted in great uncertainty. The trainees found ERT on an online platform, including simulated cases, very helpful, but they lost the confidence to work with real patients. Telecounseling became the predominant form of service delivery and was experienced as positive when video sessions were possible. The telephone service for advanced maternal age counseling was problematic due to unreliable networks.The biggest loss for the GCs was the feeling of disconnection from peers, supervisors, and patients. The experiences highlighted positive and negative aspects as well as specific challenges faced in South Africa. Lessons learnt from the COVID-19 pandemic will be used in future to improve training of GCs and to enhance service delivery.

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Section: What the Paper Addsmentioning

confidence: 99%

Genetic counseling experiences at the University of Cape Town during COVID‐19

Wessels

Düsterwald

Barlow

et al. 2021

Journal of Genetic Counseling

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show abstract

“…Though outcomes research in genetic counseling is a burgeoning area, it has primarily focused on understanding the relationship between characteristics of the appointment and counseling outcomes (Athens et al, 2017). For example, several studies have compared in‐person appointments to telehealth‐based appointments (Beretich et al, 2018; Buchanan et al, 2015; Otten et al, 2016). The method of family history collection, provision of recurrence numbers, session content, group vs. individual counseling, and physical counseling environment have been assessed as well (Borle et al, 2018; Gerrard et al, 2020; Godino et al, 2016; Lobb et al, 2004; Morris et al, 2019; Slomp et al, 2018).…”

Section: Introductionmentioning

confidence: 99%

Examining the effect of patient personality types and coping styles on outcomes of genetic counseling

Salman

Morris

Inglis

et al. 2022

Journal of Genetic Counseling

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Both empirical data and genetic counselors' clinical experienceshow that genetic counseling is not equally beneficial to all patients (Thomas & McAllister, 2019). However, there is insufficient research data to accurately identify characteristics of those who benefit more or less from the service. Not only is this important from the perspective of tailoring services to ensure maximum benefit for all patients, but it is also of potential relevance to patient prioritization/ triage decisions. Specifically, demand for genetic counseling is exceeding workforce capacity, which necessitates prioritizing patients (Hoskovec et al., 2018). Traditional risk status-based prioritization and triage models do not incorporate patients' emotional need for, or potential to benefit from genetic counseling services. More patientcentric triage models are only possible if we further characterize how different patients benefit from genetic counseling.

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“…A plethora of studies have demonstrated noninferiority of telehealth compared to in-person genetic counseling for a variety of indicators such as cancer-related stress, genetic testing decision-making, and decisional conflict [31][32][33][34][35][36]. Telehealth has been shown to improve knowledge and decrease anxiety and depression [35,37,38], while maintaining patient satisfaction [33,37,39,40]. It can provide a significant cost reduction for the provision of genetic counseling services [39,41] and enable access for rural populations [42].…”

Section: Introductionmentioning

confidence: 99%

Evaluating the Effectiveness of a Telehealth Cancer Genetics Program: A BRCA Pilot Study

Rose

Hardy

Gates

et al. 2022

Public Health Genomics

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Introduction: Ashkenazi Jewish (AJ) individuals face a 1 in 40 (2.5%) risk of having a BRCA mutation, which is 10 times the general population risk. JScreen launched the PEACH BRCA Study, a telehealth-based platform for BRCA education and testing, with the goal of creating an effective model for BRCA testing in low-risk AJ individuals who do not meet national testing criteria. Other goals were to determine the rate of BRCA mutations in this group, to assess the adequacy of screening for the 3 common AJ founder mutations only, and to assess satisfaction with the telehealth model to help inform a national launch of a broader cancer genetic testing program. Methods: Criteria for participation included those who were AJ, resided in the metro-Atlanta area, were aged 25 and older, and had no personal or close family history of BRCA-related cancers. Pre-test education was provided through a video and written summary, followed by complimentary BRCA1/2 sequencing and post-test genetic counseling. Participants responded to pre- and post-test surveys, which assessed knowledge and satisfaction. Those who were not eligible to participate were sent genetic counseling resources and later surveyed. Results: Five hundred one participants were tested and the results included 4 positives (0.8% positivity rate), 494 negatives, and 3 variants of uncertain significance. Overall satisfaction with the study process was high (96.9/100), knowledge about BRCA was high (97.5% of participants passed a pre-test knowledge quiz), and satisfaction with pre- and post-test education was high (97.9% of participants were satisfied with the pre-test video and written summary, and 99.5% felt that their post-test genetic counseling session was valuable). Many participants expressed interest in receiving broader cancer testing. Conclusions: The BRCA founder mutation rate in a low-risk AJ population was significantly lower than the previously established AJ rate of 1 in 40. It was also determined that a telehealth model for a cancer genetics program is effective and acceptable to the population tested. This study established interest in broader cancer genetic testing through a telehealth platform and suggested that testing may be successful in the Jewish community at a national level and potentially in other populations, provided that patient education and genetic counseling are adequately incorporated.

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Psychosocial Implications of Prenatal Telehealth Genetic Counselling: A Systematic Review

Cited by 4 publications

References 19 publications

Genetic counseling experiences at the University of Cape Town during COVID‐19

Genetic counseling experiences at the University of Cape Town during COVID‐19

Examining the effect of patient personality types and coping styles on outcomes of genetic counseling

Evaluating the Effectiveness of a Telehealth Cancer Genetics Program: A <b><i>BRCA</i></b> Pilot Study

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