Distress and psychosocial needs of a heterogeneous high risk familial cancer population

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.