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Distress and Psychosocial Needs of a Heterogeneous High Risk Familial Cancer Population

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

In order to assess the levels of distress and psychosocial support needs of a high risk population, we undertook a study to look at both the objective and subjective levels of distress and the wants and needs of individuals from a high familial cancer risk population. Three hundred and eighteen individuals (160 affected, 158 unaffected) completed several distress and psychosocial needs questionnaires (including the Brief Symptom Inventory-18). Sixty key informants were also surveyed about their perspective on the support needs of this population. In the largely female (90%), largely HBOC syndrome group (approximately 90%), 20% had significant levels of generalized distress, with no significant differences between affected and unaffected individuals. Generalized distress was also not significantly different as a function of mutation status. Individuals who received inconclusive test results, however, were more likely to indicate somatic symptoms of distress. Those individuals who did not have social support were more likely to be those who had never had cancer and who either had a mutation, received inconclusive test results, or were not tested. Key informants were most likely to indicate that patients need more support. These results provide evidence for the importance of establishing regular psychosocial distress screening, including a focus on somatic symptoms, in such high risk populations.

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Acknowledgements

This research was funded through the National Cancer Institute of Canada post-doctoral fellowship program with additional support from the INHERIT BRCAs project of the Canadian Institute of Health Research.

Disclosure of Interest

No conflicts of interest to be declared. The authors have full control of all primary data and agree to allow the Journal of Genetic Counseling to review said data upon request.

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Authors and Affiliations

  1. Calgary Breast Health Program, Alberta Health Services, Calgary, AB, Canada

    Tara E. Power

  2. Department of Psychosocial Resources, Tom Baker Cancer Centre, Calgary, AB, Canada

    John W. Robinson

  3. Department of Oncology and Program in Clinical Psychology, University of Calgary, Calgary, AB, Canada

    John W. Robinson

  4. Molecular Diagnostic Laboratory, Alberta Children’s Hospital, Calgary, AB, Canada

    Peter Bridge

  5. Department of Medical Genetics, Faculty of Medicine, University of Calgary, Calgary, AB, Canada

    Peter Bridge

  6. Department of Pathology, Faculty of Medicine, University of Calgary, Calgary, AB, Canada

    Peter Bridge

  7. Department of Medical Genetics, University of Calgary, Calgary, AB, Canada

    Francois P. Bernier

  8. Medical Genetics, University of Alberta, Edmonton, AB, Canada

    Dawna M. Gilchrist

  9. Alberta Health Services, Women’s Health Resources Centre, FMC, 1441-29th St NW, Calgary, AB, T2N 4J8, Canada

    Tara E. Power

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  1. Tara E. Power
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  2. John W. Robinson
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Correspondence to Tara E. Power.

Appendix A Psycho-social Support Needs Questionnaire

Appendix A Psycho-social Support Needs Questionnaire

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Power, T.E., Robinson, J.W., Bridge, P. et al. Distress and Psychosocial Needs of a Heterogeneous High Risk Familial Cancer Population. J Genet Counsel 20, 249–269 (2011). https://doi.org/10.1007/s10897-010-9344-7

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