April Morrow1, Chris Jacobs2, Megan Best3, Sian Greening4, Kathy Tucker5. 1. Hereditary Cancer Clinic, The Prince of Wales Hospital, Randwick, NSW, 2031, Australia. april.morrow@health.nsw.gov.au. 2. Prince of Wales Clinical School-UNSW Sydney, Randwick, NSW, Australia. 3. PoCoG, University of Sydney, Camperdown, NSW, Australia. 4. Hereditary Cancer Clinic, Wollongong Hospital, Wollongong, NSW, Australia. 5. Hereditary Cancer Clinic, The Prince of Wales Hospital, Randwick, NSW, 2031, Australia.
Abstract
PURPOSE: In the palliative oncology setting, genetic assessment may not impact on the patient's management but can be of vital importance to their surviving relatives. Despite care of the family being central to the ethos of palliative care, little is known about how hereditary aspects of cancer are addressed in this setting. This review aims to examine current practices, identify practice barriers and determine the genetic information and support needs of patients, family members and health providers. METHODS: Key databases were systematically searched to identify both quantitative and qualitative studies that addressed these aims. Data was extracted and coded using thematic analysis. RESULTS: Eight studies were included for review. Suboptimal genetic practices were identified, with lack of knowledge and poor confidence amongst providers reported as barriers in both qualitative and quantitative studies. Providers expressed concern about the emotional impact of initiating these discussions late in the disease trajectory; however, qualitative interviews amongst palliative patients suggested there may be emotional benefits. CONCLUSIONS: All lines of evidence suggest that genetics is currently missing from the palliative agenda, signifying lost opportunities for mutation detection, genetic counselling and appropriate risk management for surviving relatives. There is an urgent need for interventions to improve provider knowledge and awareness of genetic referral pathways and for research into the genetic information and support needs of palliative care patients.
PURPOSE: In the palliative oncology setting, genetic assessment may not impact on the patient's management but can be of vital importance to their surviving relatives. Despite care of the family being central to the ethos of palliative care, little is known about how hereditary aspects of cancer are addressed in this setting. This review aims to examine current practices, identify practice barriers and determine the genetic information and support needs of patients, family members and health providers. METHODS: Key databases were systematically searched to identify both quantitative and qualitative studies that addressed these aims. Data was extracted and coded using thematic analysis. RESULTS: Eight studies were included for review. Suboptimal genetic practices were identified, with lack of knowledge and poor confidence amongst providers reported as barriers in both qualitative and quantitative studies. Providers expressed concern about the emotional impact of initiating these discussions late in the disease trajectory; however, qualitative interviews amongst palliative patients suggested there may be emotional benefits. CONCLUSIONS: All lines of evidence suggest that genetics is currently missing from the palliative agenda, signifying lost opportunities for mutation detection, genetic counselling and appropriate risk management for surviving relatives. There is an urgent need for interventions to improve provider knowledge and awareness of genetic referral pathways and for research into the genetic information and support needs of palliative care patients.
Entities:
Keywords:
End of life; Genetic counselling; Hereditary; Palliative; Supportive care
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