Cancer genetic counseling via telegenetics and telephone: A qualitative study exploring the experience of patients and genetic counselors in an Australian cancer genetics context

被引:1
作者
Finney, Jessica [1 ,2 ]
Fargas, Verna [2 ]
Gonzalez, Tina [3 ]
Taylor, Natalie [4 ]
Wakefield, Claire E. [5 ,6 ]
Tucker, Kathy [1 ,5 ]
Turbitt, Erin [2 ]
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
基金
英国医学研究理事会;
关键词
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.
引用
收藏
页数:12
相关论文
共 50 条
[21]   A Time Study of Cancer Genetic Counselors Using a Genetic Counselor-Only Patient Care Model Versus a Traditional Combined Genetic Counselor Plus Medical Geneticist Care Model [J].
Heald, Brandie ;
Gustafson, Shanna ;
Mester, Jessica ;
Arscott, Patricia ;
Lynch, Katherine ;
Moline, Jessica ;
Eng, Charis .
JOURNAL OF THE NATIONAL COMPREHENSIVE CANCER NETWORK, 2013, 11 (09) :1076-1081
[22]   Exploring parents' perceptions of the value of pediatric genetic counseling patient letters: A qualitative study presenting lessons learned [J].
Brown, Courtney ;
Head, Katharine J. ;
Hartsock, Jane ;
Burns, Katelyn ;
Wilson, Theodore E. ;
Prucka, Sandra .
JOURNAL OF GENETIC COUNSELING, 2021, 30 (04) :1168-1180
[23]   Delivery of Internet-based cancer genetic counselling services to patients' homes: a feasibility study [J].
Meropol, Neal J. ;
Daly, Mary B. ;
Vig, Hetal S. ;
Manion, Frank J. ;
Manne, Sharon L. ;
Mazar, Carla ;
Murphy, Camara ;
Solarino, Nicholas ;
Zubarev, Vadim .
JOURNAL OF TELEMEDICINE AND TELECARE, 2011, 17 (01) :36-40
[24]   Oncologists' perspectives of telephone genetic counseling to facilitate germline BRCA1/2 testing for their patients with high-grade serous ovarian cancer [J].
Hemming, Pierre ;
Kaur, Rajneesh ;
Meiser, Bettina ;
McKinley, Joanne ;
Young, Mary-Anne ;
James, Paul A. ;
Forrest, Laura E. .
JOURNAL OF COMMUNITY GENETICS, 2021, 12 (03) :449-457
[25]   Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients [J].
Claes, E ;
Evers-Kiebooms, G ;
Boogaerts, A ;
Decruyenaere, M ;
Denayer, L ;
Legius, E .
AMERICAN JOURNAL OF MEDICAL GENETICS PART A, 2003, 116A (01) :11-19
[26]   Exploring cancer patients', caregivers', and clinicians' utilisation and experiences of telehealth services during COVID-19: A qualitative study [J].
Smith, Sarah J. ;
Ben Smith, Allan ;
Kennett, William ;
Vinod, Shalini K. .
PATIENT EDUCATION AND COUNSELING, 2022, 105 (10) :3134-3142
[27]   Communicating cancer and its treatment to Australian Aboriginal and Torres Strait Islander patients with cancer: a qualitative study [J].
Ian Olver ;
Kate M. Gunn ;
Alwin Chong ;
Vikki Knott ;
Kristiaan Spronk ;
Nayia Cominos ;
Joan Cunningham .
Supportive Care in Cancer, 2022, 30 :431-438
[28]   Communicating cancer and its treatment to Australian Aboriginal and Torres Strait Islander patients with cancer: a qualitative study [J].
Olver, Ian ;
Gunn, Kate M. ;
Chong, Alwin ;
Knott, Vikki ;
Spronk, Kristiaan ;
Cominos, Nayia ;
Cunningham, Joan .
SUPPORTIVE CARE IN CANCER, 2022, 30 (01) :431-438
[29]   Pre-test genetic counseling services for hereditary breast and ovarian cancer delivered by non-genetics professionals in the state of Florida [J].
Vadaparampil, S. T. ;
Scherr, C. L. ;
Cragun, D. ;
Malo, T. L. ;
Pal, T. .
CLINICAL GENETICS, 2015, 87 (05) :473-477
[30]   Pretest Video Education Versus Genetic Counseling for Patients With Prostate Cancer: ProGen, A Multisite Randomized Controlled Trial [J].
Rana, Huma Q. ;
Stopfer, Jill E. ;
Weitz, Michelle ;
Kipnis, Lindsay ;
Koeller, Diane R. ;
Culver, Samantha ;
Mercado, Joanna ;
Gelman, Rebecca Sue ;
Underhill-Blazey, Meghan ;
Mcgregor, Bradley A. ;
Sweeney, Christopher J. ;
Petrucelli, Nancie ;
Kokenakes, Courtney ;
Pirzadeh-Miller, Sara ;
Reys, Brian ;
Frazier, Arthur ;
Knechtl, Andrew ;
Fateh, Salman ;
Vatnick, Donna Rachel ;
Silver, Rebecca ;
Kilbridge, Kerry E. ;
Pomerantz, Mark M. ;
Wei, Xiao X. ;
Choudhury, Atish D. ;
Sonpavde, Guru P. ;
Kozyreva, Olga ;
Lathan, Christopher ;
Horton, Carrie ;
Dolinsky, Jill S. ;
Heath, Elisabeth I. ;
Ross, Theodora Suzanne ;
Courtney, Kevin Dale ;
Garber, Judy E. ;
Taplin, Mary-Ellen .
JCO ONCOLOGY PRACTICE, 2023, 19 (11) :1069-+