title: Unmet support needs and distress among women with a BRCA1/2 mutation.
abstract: Distress levels among female BRCA1/2 mutation carriers can be similar to levels found among breast cancer patients. While psychological distress has been associated with unmet needs among cancer patients no study has examined this among BRCA1/2 mutation carriers. The objectives of this study were to: (1) describe the unmet support needs of women with a known BRCA1/2 mutation, (2) determine how unmet needs are related to psychological distress, and (3) identify variables that predict level of unmet need and distress. Female BRCA1/2 mutation carriers were identified through Familial Cancer Centers in 3 Australian states. Two-hundred and seventy-nine participants completed surveys assessing need for help on 16 information and support items. The Impact of Events Scale assessed genetic test related distress. Participants reported an average of 5.4 (SD = 4.9) moderate to very high unmet needs. Twenty-one percent had scores indicating moderate distress, and 13 % indicating severe distress. Younger age (t = -3.34; p < 0.01), not having someone to confide in about the gene mutation (t = 2.57; p = 0.01) and shorter time since notification of mutation status (t = -2.49; p = 0.01) were associated with higher unmet need scores in linear regression analyses. Greater number of unmet needs was associated with a greater likelihood of moderate to severe levels of distress (OR = 1.19; p < 0.01) in logistic regression analyses. Identifying appropriate interventions that target unmet needs among younger women and those with no confidante may help to reduce distress. Interventions that provide an opportunity for women to confide in someone, such as Peer support programs, may be one way of meeting the emotional needs of this population.
authors.affiliation: Centre for Behavioral Research in Cancer, Cancer Council Victoria, 1 Rathdowne Street, Carlton, VIC, 3000, Australia, ashley.farrelly@cancervic.org.au.
authors.forename: Ashley
authors.initials: A
authors.lastname: Farrelly
authors.forename: Victoria
authors.initials: V
authors.lastname: White
authors.forename: Bettina
authors.initials: B
authors.lastname: Meiser
authors.forename: Michael
authors.initials: M
authors.lastname: Jefford
authors.forename: Mary-Anne
authors.initials: MA
authors.lastname: Young
authors.forename: Sandra
authors.initials: S
authors.lastname: Ieropoli
authors.forename: Ingrid
authors.initials: I
authors.lastname: Winship
authors.forename: Jessica
authors.initials: J
authors.lastname: Duffy
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001007:Anxiety / Q000209:etiology / Q000523:psychology*; D019313:BRCA1 Protein / Q000235:genetics*; D024682:BRCA2 Protein / Q000235:genetics*; D001943:Breast Neoplasms / Q000235:genetics / Q000523:psychology*; D003863:Depression / Q000209:etiology / Q000523:psychology*; D005260:Female; D005500:Follow-Up Studies; D020022:Genetic Predisposition to Disease; D006801:Humans; D008875:Middle Aged; D009154:Mutation; D020380:Needs Assessment; D016032:Randomized Controlled Trials as Topic; D012307:Risk Factors; D012944:Social Support; D013315:Stress, Psychological / Q000235:genetics / Q000523:psychology*; D011795:Surveys and Questionnaires; D055815:Young Adult
chemical_list: D019313:BRCA1 Protein; C492913:BRCA1 protein, human; D024682:BRCA2 Protein; C551750:BRCA2 protein, human