Cancer genetic counseling via telegenetics and telephone: A qualitative study exploring the experience of patients and genetic counselors in an Australian cancer genetics context
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作者:
Finney, Jessica
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机构:
Prince Wales Hosp, Prince Wales Hereditary Canc Ctr, Randwick, NSW, Australia
Univ Technol Sydney UTS, Grad Sch Hlth, Ultimo, NSW, AustraliaPrince Wales Hosp, Prince Wales Hereditary Canc Ctr, Randwick, NSW, Australia
Finney, Jessica
[1
,2
]
Fargas, Verna
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Univ Technol Sydney UTS, Grad Sch Hlth, Ultimo, NSW, AustraliaPrince Wales Hosp, Prince Wales Hereditary Canc Ctr, Randwick, NSW, Australia
Fargas, Verna
[2
]
Gonzalez, Tina
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Royal North Shore Hosp, Dept Clin Genet, St Leonards, NSW, AustraliaPrince Wales Hosp, Prince Wales Hereditary Canc Ctr, Randwick, NSW, Australia
Gonzalez, Tina
[3
]
Taylor, Natalie
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UNSW Sydney, Sch Populat Hlth, UNSW Med & Hlth, Kensington, NSW, AustraliaPrince Wales Hosp, Prince Wales Hereditary Canc Ctr, Randwick, NSW, Australia
Taylor, Natalie
[4
]
Wakefield, Claire E.
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UNSW Sydney, Sch Clin Med, UNSW Med & Hlth, Kensington, NSW, Australia
Sydney Childrens Hosp, Kids Canc Ctr, Randwick, NSW, AustraliaPrince Wales Hosp, Prince Wales Hereditary Canc Ctr, Randwick, NSW, Australia
Wakefield, Claire E.
[5
,6
]
Tucker, Kathy
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机构:
Prince Wales Hosp, Prince Wales Hereditary Canc Ctr, Randwick, NSW, Australia
UNSW Sydney, Sch Clin Med, UNSW Med & Hlth, Kensington, NSW, AustraliaPrince Wales Hosp, Prince Wales Hereditary Canc Ctr, Randwick, NSW, Australia
Tucker, Kathy
[1
,5
]
Turbitt, Erin
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Univ Technol Sydney UTS, Grad Sch Hlth, Ultimo, NSW, AustraliaPrince Wales Hosp, Prince Wales Hereditary Canc Ctr, Randwick, NSW, Australia
Turbitt, Erin
[2
]
Williams, Rachel
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Prince Wales Hosp, Prince Wales Hereditary Canc Ctr, Randwick, NSW, Australia
UNSW Sydney, Sch Clin Med, UNSW Med & Hlth, Kensington, NSW, AustraliaPrince Wales Hosp, Prince Wales Hereditary Canc Ctr, Randwick, NSW, Australia
Williams, Rachel
[1
,5
]
机构:
[1] Prince Wales Hosp, Prince Wales Hereditary Canc Ctr, Randwick, NSW, Australia
[2] Univ Technol Sydney UTS, Grad Sch Hlth, Ultimo, NSW, Australia
[3] Royal North Shore Hosp, Dept Clin Genet, St Leonards, NSW, Australia
[4] UNSW Sydney, Sch Populat Hlth, UNSW Med & Hlth, Kensington, NSW, Australia
[5] UNSW Sydney, Sch Clin Med, UNSW Med & Hlth, Kensington, NSW, Australia
[6] Sydney Childrens Hosp, Kids Canc Ctr, Randwick, NSW, Australia
communication;
COVID-19;
genetic counseling cancer genetics;
telegenetics;
telemedicine;
telephone;
NATIONAL SOCIETY;
TELEMEDICINE;
D O I:
10.1002/jgc4.1982
中图分类号:
Q3 [遗传学];
学科分类号:
071007 ;
090102 ;
摘要:
The demand for direct-to-patient (DTP) telegenetics (genetics services delivered via videoconferencing) in genetic counseling practice has rapidly increased, particularly since the COVID-19 pandemic. Recent telegenetics literature is mostly quantitative and not in the Australian context. A qualitative interview study was conducted to address this gap. This research investigated the experiences of patients and genetic counselors (GCs), enrolled in a randomized controlled trial, using telegenetics and telephone for cancer genetic counseling appointments. Twenty-eight semi-structured interviews with patients (n = 22) and GCs (n = 6) were conducted following patient randomization to either a telephone or telegenetics genetic counseling appointment. The interviews explored participant's experiences of telegenetics and compared DTP telegenetics with telephone and in-person delivery. Codebook thematic analysis was used to develop topic summaries from the data. Patient and GC participants noted positive experiences of telegenetics; with key benefits reported as reduced travel time, time and cost saving, ease, convenience, efficiency, and comfortability. Technical issues and privacy concerns were highlighted as potential disadvantages of telegenetics. All but one patient felt sufficiently emotionally supported while using telegenetics. Telegenetics has both benefits and limitations; however, generally, this cohort found telegenetics to be a suitable and acceptable mode of delivery for genetic counseling with many advantages over in-person or telephone appointments. Further studies should be conducted to provide evidence for the long-term implementation of telegenetics, regardless of any future COVID-19 pandemic lockdown restrictions.
机构:
Stanford Univ, Dept Genet, Sch Med, Stanford, CA 94305 USAStanford Univ, Dept Genet, Sch Med, Stanford, CA 94305 USA
Park, Jessica
Zayhowski, Kimberly
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Stanford Univ, Dept Genet, Sch Med, Stanford, CA 94305 USAStanford Univ, Dept Genet, Sch Med, Stanford, CA 94305 USA
Zayhowski, Kimberly
Newson, Ainsley J.
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机构:
Univ Sydney, Sydney Sch Publ Hlth, Fac Med & Hlth, Sydney Hlth Eth, Sydney, NSW, AustraliaStanford Univ, Dept Genet, Sch Med, Stanford, CA 94305 USA
Newson, Ainsley J.
Ormond, Kelly E.
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机构:
Stanford Univ, Dept Genet, Sch Med, Stanford, CA 94305 USA
Stanford Univ, Sch Med, Stanford Ctr Biomed Eth, Stanford, CA 94305 USAStanford Univ, Dept Genet, Sch Med, Stanford, CA 94305 USA
机构:
Acibadem Mehmet Ali Aydinlar Univ, Med Sch, Dept Med Genet, Kayisdagi St 32, Istanbul, Turkiye
Acibadem Labgen Genet Diag Ctr, Istanbul, TurkiyeAcibadem Mehmet Ali Aydinlar Univ, Med Sch, Dept Med Genet, Kayisdagi St 32, Istanbul, Turkiye
Yararbas, Kanay
Ozbek, Ugur
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Acibadem Mehmet Ali Aydinlar Univ, Med Sch, Dept Med Genet, Kayisdagi St 32, Istanbul, TurkiyeAcibadem Mehmet Ali Aydinlar Univ, Med Sch, Dept Med Genet, Kayisdagi St 32, Istanbul, Turkiye