Patient Satisfaction with Private Genetic Counselling for Familial Cancer in Western Australia: A Prospective Audit

Document Type : Research Articles

Authors

1 School of Medicine, University of Notre Dame Australia, Fremantle Campus, Fremantle, Western Australia, Australia.

2 Women Centre, West Leederville, Western Australia, Australia.

3 Genetic Services of Western Australia, King Edward Memorial Hospital, Subiaco, Western Australia, Australia.

4 Division of Pharmacology and Division of Paediatrics and Child Health, University of Western Australia Faculty of Medicine Dentistry and Health Sciences, Crawley, Western Australia, Australia.

5 Division of Obstetrics and Gynaecology Faculty of Health and Medical Sciences,University of Western Australia, Crawley, Western Australia, Australia.

6 Division of Gynaecological Oncology, St John of God Subiaco Hospital, Subiaco, Western Australia, Australia.

7 Institute for Health Research, University of Notre Dame Australia, Fremantle Campus, Fremantle, Western Australia, Australia.

Abstract

Background: The rapid increase in demand for cancer genetic testing in Australia led to the establishment of private Familial Cancer Clinics (FCCs) as alternatives to public sector FCCs. Australian studies conducted in the public sector have shown high patient satisfaction with genetic counselling. No study has investigated patient satisfaction with genetic counselling in the private sector in Australia. Our aim was to assess patient satisfaction with genetic counselling for familial cancer within the private healthcare sector of Western Australia. Materials and Methods: Questionnaires were given to all eligible patients after their first genetic counselling appointment, consisting of the 12-item Satisfaction with Genetic Counselling Scale and an added question regarding the perceived value for the financial cost. Outcomes assessed included instrumental satisfaction, affective satisfaction, procedural satisfaction and perceived value for financial cost. Participants scored the representative questions from one to four (unsatisfied - highly satisfied). Results: Two hundred and twenty patients were given the questionnaire, 75 questionnaires were returned (response rate 34%),  and 73 were appropriately completed and analysed. Overall, seventy (96%) participants were highly satisfied with the genetic counsellor’s explanation; seventy-four (98%) were highly satisfied/satisfied with the reassurance provided. Sixty-eight participants (93%) were highly satisfied/satisfied with the help received. Seventy-two (99%) participants had their expectations met and sixty-nine (95%) participants were highly satisfied with the service. Sixty-eight (93%) participants were highly satisfied/satisfied with the cost of private genetic counselling. Sixty-one (83.6%) proceeded to genetic testing. Conclusions: Private genetic counselling was considered highly satisfactory, and the cost considered acceptable by most participants.

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