Distress and unmet information needs among women with the BRCA 1/2 gene mutation: how are they related? — ASN Events

Distress and unmet information needs among women with the BRCA 1/2 gene mutation: how are they related? (#270)

Victoria White 1 , Ashley Farrelly 1 , M Jefford 2 , B Meiser 3 , I Winship 4 , M A Young 2 , J Duffy 3
  1. Cancer Council Victoria, Carlton, Vic, Australia
  2. The Peter MacCallum Cancer Centre, Melbourne, Victora, Australia
  3. Prince of Wales Hospital, Sydney, NSW, Australia
  4. Royal Melbourne Hospital, Melbourne, Vic, Australia
BACKGROUND: Distress levels among female BRCA1/2 mutation carriers are similar to levels among breast cancer patients. Studies of cancer patients suggest psychological distress (PD) is associated with unmet needs (UN), but no study has examined this among BRCA1/2 mutation carriers. AIMS: (1) describe levels of PD and UN among BRCA1/2 mutation carriers, (2) examine associations between UN and PD, and (3) identify variables associated with UN and PD. Method: Female BRCA1/2 mutation carriers were identified through Familial Cancer Centres in three Australian states. 279 participants (response rate 46%) completed surveys assessing availability of confidante, age, marital status, surgical risk-reducing strategies and time since mutation notification. Women indicated need for help (1-no need to 5-very high need) on 16 information and support items. The Impact of Events Scale (IES) assessed PD (range: 0-70, moderate PD: 26-43, severe: 44+). Results: An average of 9.2 (SD=5.3) UN were reported, with only 9% reporting no needs. The most common need was: “dealing with fears about developing cancer” (71%). Median IES score was 15.0, 21% had moderate PD and 13% had severe PD. UN level was positively associated (r=0.49) with PD. In multivariate regression, higher UN were associated with younger age (p<0.01), not having a confidante (p=0.01) and shorter time since mutation status notification (p=0.04). In multivariate logistic regression, moderate to severe PD was associated with having more UN (OR=1.19, p<0.01), not having a confidante (OR=4.97, p=0.01), and having no surgery (OR=2.56, p=0.03) or bilateral mastectomy only (OR=4.83, p=0.01) compared to having bilateral salpingo-oophorectomy. Being married was associated with a lower likelihood of moderate to severe PD (OR=0.31, p<0.01).Conclusion: Many women with a BRCA1/2 mutation have unmet needs and a third experience moderate to severe distress. Identifying appropriate interventions that target unmet needs among younger women with no confidante may help to reduce distress.