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Women’s Experience of Telehealth Cancer Genetic Counseling

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

Telegenetics offers an alternative model of delivering genetic counseling to rural and outreach areas; however there is a dearth of qualitative research into the patient’s experience. Twelve women who had received telemedicine genetic counseling for hereditary breast and/or ovarian cancer (HBOC) within the previous 12 months participated in a semi-structured telephone interview. The interview explored women’s experience with telegenetics, satisfaction, perceived advantages and disadvantages and quality of the interaction with their genetic professionals. Overall women were highly satisfied with telegenetics. Telegenetics offered them convenience and reduced travel and associated costs. The majority of women described feeling a high degree of social presence, or rapport, with the off-site genetic clinician. One woman with a recent cancer diagnosis, reported that telemedicine was unable to meet her needs for psychosocial support. This finding highlights the need to be mindful of the psychosocial support needs of women with a recent diagnosis being seen via telegenetics. Patients attending for HBOC genetic counseling are generally highly satisfied with the technology and the interaction. Care should be taken, however, with patients with more complex psychosocial needs.

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Acknowledgements

We are most grateful for the valuable contribution of all the women who participated in the project. Without the assistance of the recruiting genetic counselors Sian Greening, Gillian Bleazby and Bruce Hopper, this project would not be possible. We are also grateful to Dr Shab Mireskandari, A/Professor Kristine Barlow-Stewart and Dr Tracey Dudding for their input into the development of this project. A/Professor Bettina Meiser is supported by an NHMRC Career Development Award (ID 350989). This research was funded through a Strategic Research Partnership Grant from the New South Wales Cancer Council (SRP 06-X5).

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Authors and Affiliations

  1. Department of Medical Oncology, Prince of Wales Hospital, Randwick, NSW, Australia

    Elvira M. Zilliacus, Bettina Meiser & Katherine Tucker

  2. School of Psychiatry, The University of New South Wales, Randwick, NSW, Australia

    Elvira M. Zilliacus

  3. Prince of Wales Clinical School, The University of New South Wales, Randwick, NSW, Australia

    Bettina Meiser

  4. Calvary Health Care Sydney, Kogarah, NSW, Australia

    Elizabeth A. Lobb

  5. WA Centre for Cancer & Palliative Care, Curtin University of Technology, Bentley, WA, Australia

    Elizabeth A. Lobb

  6. School of Nursing, Midwifery and Post-graduate Medicine, Edith Cowan University, Perth, WA, Australia

    Elizabeth A. Lobb

  7. Familial Cancer Service, Westmead Hospital, Westmead, NSW, Australia

    Judy Kirk

  8. ACT Genetics Service, Canberra Hospital, Woden, ACT, Australia

    Linda Warwick

  9. Psychosocial Research Group, Prince of Wales Hospital, Level 3, Dickinson Building, Randwick, NSW, 2031, Australia

    Elvira M. Zilliacus

Authors
  1. Elvira M. Zilliacus
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  2. Bettina Meiser
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  3. Elizabeth A. Lobb
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  4. Judy Kirk
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  6. Katherine Tucker
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Corresponding author

Correspondence to Elvira M. Zilliacus.

Appendix I-Patient Interview Schedule

Appendix I-Patient Interview Schedule

  1. 1.

    Could you please tell me a little bit about your experience of telehealth cancer genetic counselling?

  2. 2.

    What do you see as the advantages of telehealth? (Cost, travel, childcare, work, access)

  3. 3.

    What are the disadvantages of telehealth?( Technology, depersonalised)

  4. 4.

    How do you see the advantages and disadvantages balancing out?

  5. 5.

    Did you feel you knew what to expect in the telehealth consultation?

  6. 6.

    How did you feel during the telehealth consultation?

    1. a.

      Did that change during the consultation?

    2. b.

      Did it make a difference having the gc present?

    3. c.

      What did you see the GC being there for?

    4. d.

      Did you feel able to interact with the geneticist?

  7. 7.

    Were there any practical aspects that you weren’t happy with (eg. Travel, the setup of the room, technical difficulties)

    1. a.

      Could you see the doctor clearly?

  8. 8.

    Did seeing the doctor by telehealth make a difference to being able to understand what she was saying?

  9. 9.

    Did you feel comfortable asking questions during your consultation?

  10. 10.

    Did you feel that the staff were able to pick up any emotional issues you felt needed attention?

  11. 11.

    The doctors have mentioned they ‘cut to the chase’. Did you find that and if so, how was it?

  12. 12.

    Overall how would you rate your telehealth consultation, on a scale of 1 to 10? Please elaborate.

  13. 13.

    Did it meet your expectations?

  14. 14.

    In retrospect, would you chose to see the doctor by telehealth again? Why?

  15. 15.

    Do you have any other comments you would like to make?

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Zilliacus, E.M., Meiser, B., Lobb, E.A. et al. Women’s Experience of Telehealth Cancer Genetic Counseling. J Genet Counsel 19, 463–472 (2010). https://doi.org/10.1007/s10897-010-9301-5

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