Longitudinal changes in patient distress following interactive decision aid use among BRCA1/2 carriers: a randomized trial.
Increasingly, women with a strong family history of breast cancer are seeking genetic testing as a starting point to making significant decisions regarding management of their cancer risks. Individuals who are found to be carriers of a BRCA1 or BRCA2 mutation have a substantially elevated risk for breast cancer and are frequently faced with the decision of whether to undergo risk-reducing mastectomy.



In order to provide BRCA1/2 carriers with ongoing decision support for breast cancer risk management, a computer-based interactive decision aid was developed and tested against usual care in a randomized controlled trial.



. Following genetic counseling, 214 female (aged 21-75 years) BRCA1/2 mutation carriers were randomized to usual care (UC; n = 114) or usual care plus decision aid (DA; n = 100) arms. UC participants received no further intervention; DA participants were sent the CD-ROM-based decision aid to view at home.



The authors measured general distress, cancer-specific distress, and genetic testing-specific distress at 1-, 6-, and 12-month follow-up time points postrandomization.



Longitudinal analyses revealed a significant longitudinal impact of the DA on cancer-specific distress (B = 5.67, z = 2.81, P = 0.005), which varied over time (DA group by time; B = -2.19, z = -2.47, P = 0.01), and on genetic testing-specific distress (B = 5.55, z = 2.46, P = 0.01), which also varied over time (DA group by time; B = -2.46, z = -2.51, P = 0.01). Individuals randomized to UC reported significantly decreased distress in the month following randomization, whereas individuals randomized to the DA maintained their postdisclosure distress over the short term. By 12 months, the overall decrease in distress between the 2 groups was similar.



This report provides new insight into the long-term longitudinal effects of DAs.
Hooker
Gillian W
GW
Lombardi Comprehensive Cancer Center, Georgetown University, Washington, DC (GWH, K-GL, TD, BNP, CF, MDS)
Leventhal
Kara-Grace
KG
Lombardi Comprehensive Cancer Center, Georgetown University, Washington, DC (GWH, K-GL, TD, BNP, CF, MDS)
DeMarco
Tiffani
T
Lombardi Comprehensive Cancer Center, Georgetown University, Washington, DC (GWH, K-GL, TD, BNP, CF, MDS)
Peshkin
Beth N
BN
Lombardi Comprehensive Cancer Center, Georgetown University, Washington, DC (GWH, K-GL, TD, BNP, CF, MDS)
Finch
Clinton
C
Lombardi Comprehensive Cancer Center, Georgetown University, Washington, DC (GWH, K-GL, TD, BNP, CF, MDS)
Wahl
Erica
E
Section of Genetics and Metabolism, Albany Medical Center, Albany, NY (EW)
Joines
Jessica Rispoli
JR
Greenebaum Cancer Center, University of Maryland, Baltimore, MD (JRJ)
Brown
Karen
K
Department of Genetic and Genomic Sciences, Mount Sinai School of Medicine, New York, NY (KB)
Valdimarsdottir
Heiddis
H
Department of Oncological Sciences, Mount Sinai School of Medicine, New York, NY (HV)
Schwartz
Marc D
MD
Lombardi Comprehensive Cancer Center, Georgetown University, Washington, DC (GWH, K-GL, TD, BNP, CF, MDS)
D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001943:Breast Neoplasms / Q000235:genetics* / Q000523:psychology* / Q000601:surgery; D003658:Decision Making, Computer-Assisted; D003661:Decision Support Techniques; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling / Q000523:psychology*; D006801:Humans; D008137:Longitudinal Studies; D008327:Mammography; D008408:Mastectomy; D008875:Middle Aged; D015999:Multivariate Analysis; D009518:New York / Q000453:epidemiology; D010353:Patient Education as Topic; D011594:Psychometrics; D018570:Risk Assessment; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D013997:Time Factors; D055815:Young Adult