Unmet support needs and distress among women with a BRCA1/2 mutation

Familial Cancer

Volumn 12, Issue 3, 2013, Pages 509-518

  Farrelly, Ashley ^a   White, Victoria ^a   Meiser, Bettina ^b   Jefford, Michael ^a,c,d   Young, Mary Anne ^c   Ieropoli, Sandra ^e   Winship, Ingrid ^d,f   Duffy, Jessica ^g  

^a CANCER EPIDEMIOLOGY CENTRE   (Australia)

^b UNIVERSITY OF NEW SOUTH WALES   (Australia)

^c PETER MACCALLUM CANCER CENTRE   (Australia)

^d UNIVERSITY OF MELBOURNE   (Australia)

^e Early in Life Mental Health Services   (Australia)

^f ROYAL MELBOURNE HOSPITAL   (Australia)

^g PRINCE OF WALES HOSPITAL   (Australia)

Author keywords

BRCA1 2; Breast ovarian cancer; Impact of Events Scale; Psychological distress; Unmet needs

Indexed keywords

BRCA1 PROTEIN; BRCA2 PROTEIN;

ADULT; ARTICLE; AUSTRALIA; BREAST CANCER; CANCER CENTER; DISTRESS SYNDROME; FEMALE; GENE MUTATION; GENETIC SCREENING; HEALTH CARE NEED; HEALTH CARE SURVEY; HELP SEEKING BEHAVIOR; HOSPITAL ANXIETY AND DEPRESSION SCALE; HUMAN; IMPACT OF EVENTS SCALE; MAJOR CLINICAL STUDY; OVARY CANCER; PRIORITY JOURNAL; SUPPORT GROUP;

ADULT; AGED; AGED, 80 AND OVER; ANXIETY; BRCA1 PROTEIN; BRCA2 PROTEIN; BREAST NEOPLASMS; DEPRESSION; FEMALE; FOLLOW-UP STUDIES; GENETIC PREDISPOSITION TO DISEASE; HUMANS; MIDDLE AGED; MUTATION; NEEDS ASSESSMENT; QUESTIONNAIRES; RANDOMIZED CONTROLLED TRIALS AS TOPIC; RISK FACTORS; SOCIAL SUPPORT; STRESS, PSYCHOLOGICAL; YOUNG ADULT;

EID: 84885950602     PISSN: 13899600     EISSN: 15737292     Source Type: Journal    
DOI: 10.1007/s10689-012-9596-5     Document Type: Article

References (42)

1. Antoniou A, Pharoah PD, Narod S, Risch HA, Eyfjord JE, Hopper JL, Loman N, Olsson H, Johannsson O, Borg A, Pasini B, Radice P, Manoukian S, Eccles DM, Tang N, Olah E, Anton-Culver H, Warner E, Lubinski J, Gronwald J, Gorski B, Tulinius H, Thorlacius S, Eerola H, Nevanlinna H, Syrjakoski K, Kallioniemi OP, Thompson D, Evans C, Peto J, Lalloo F, Evans DG, Easton DF (2003) Average risks of breast and ovarian cancer associated with BRCA1 or BRCA2 mutations detected in case series unselected for family history: a combined analysis of 22 studies. Am J Hum Genet 72(5):1117-1130. doi: 10.1086/375033
2. Rebbeck TR, Friebel T, Lynch HT, Neuhausen SL, van't Veer L, Garber JE, Evans GR, Narod SA, Isaacs C, Matloff E, Daly MB, Olopade OO, Weber BL (2004) Bilateral prophylactic mastectomy reduces breast cancer risk in BRCA1 and BRCA2 mutation barriers: the PROSE Study Group. J Clin Oncol 22(6):1055-1062
3. Rebbeck TR, Lynch HT, Neuhausen SL, Narod SA, van't Veer L, Garber JE, Evans GR, Isaacs C, Daly MB, Matloff E, Olopade OO, Weber BL (2002) Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. N Engl J Med 346(21):1616-1622
4. Clarke-Pearson DL (2009) Screening for ovarian cancer. N Engl J Med 361:170-177
5. Youlden DR, Cramb SM, Dunn NAM, Muller JM, Pyke CM, Baade PD (2012) The descriptive epidemiology of female breast cancer: an international comparison of screening, incidence, survival and mortality. Cancer Epidemiol 36(3):237-248
6. Kriege M, Brekelmans C, Boetes C, Besnard P, Zonderland H, Obdeijn I, Manoliu R, Kok T, Peterse H, Tilanus-Linthorst M, Muller SH, Meijer S, Oosterwijk JC, Beex L, Tollenaar R, de Koning H, Rutgers E, Klijn JGM (2004) Efficacy of MRI and mammography for breast-cancer screening in women with a familial or genetic predisposition. N Engl J Med 351(5):427-437
7. Meiser B, Butow P, Friedlander M, Barratt A, Schnieden V, Watson M, Brown J, Tucker K (2002) Psychological impact of genetic testing in women from high-risk breast cancer families. Eur J Cancer 38:2025-2033
8. Croyle R, Smith K, Botkin J, Baty B, Nash J (1997) Psychological responses to BRCA1 mutation testing: preliminary findings. Health Psychol 16:63-72
9. Braithwaite D, Emery J, Walter F, Prevost AT, Sutton S (2004) Psychological impact of genetic counseling for familial cancer: a systematic review and meta-analysis. J Natl Cancer Inst 96:122-123
10. Meiser B (2005) Psychological impact of genetic testing for cancer susceptibility: an update of the literature. Psychooncology 14(12):1060-1074. doi: 10.1002/pon.933
11. Tjemsland L, Soreide J, Malt U (1998) Posttraumatic distress symptoms in operable breast cancer III: status one year after surgery. Breast Cancer Res Treat 47:141-151
12. Lindberg NM, Wellisch DK (2004) Identification of traumatic stress reactions in women at increased risk for breast cancer. Psychosomatics 45:7-16
13. van Oostrom I, Meijers-Heijboer H, Lodder LN, Duivenvoorden HJ, van Gool AR, Seynaeve C, van der Meer CA, Klijn JGM, van Geel BN, Burger CW, Wladimiroff JW, Tibben A (2004) Long-term psychological impact of carrying a BRCA1/2 mutation and prophylactic surgery: a 5-year follow-up study. J Clin Oncol 21:3867-3874
14. Hodgkinson K, Butow P, Hunt GE (2007) Breast cancer survivors' supportive care needs 2-10 years after diagnosis. Support Care Cancer 15(5):515-523
15. Harrison JD, Young JM, Price MA, Butow PN, Solomon MJ (2009) What are the unmet supportive care needs of people with cancer? A systematic review. Support Care Cancer 17:1117-1128
16. Thewes B, Meiser B, Tucker M, Tucker K (2003) The unmet information and support needs of women with a family history of breast cancer: a descriptive survey. J Genet Couns 12(1):61-76
17. Iredale R, Brain K, Edwards L, Gray J, France E (2003) The information and support needs of women at high risk of familial breast and ovarian cancer: how can cancer genetic services give patients what they want? Fam Cancer 2:119-121
18. Werner-Lin A (2008) Formal and informal support needs of young women with BRCA mutations. J Psychosoc Oncol 26(4):111-133
19. Beckmann K, Tait C, McCormack J, Suthers G (2004) Information and support needs of people with genetic errors associated with increased cancer risk: summary report of study findings. SA Clinical Genetics Service and The Cancer Council South Australia, Adelaide, South Australia
20. Metcalfe KA, Liede A, Hoodfar E, Scott A, Foulkes WD, Narod SA (2000) An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling. J Med Genet 37:866-874
21. Mor V, Allen SM, Siegel K, Houts P (1992) Determinants of needs and unmet need among cancer patients residing at home. Health Serv Res 27:337-360
22. Schmid-Buchi S, Halfens RJG, Muller M, Dassen T, van den Borne B (2012) Factors associated with supportive care needs of patients under treatment for breast cancer. Eur J Oncol Nurs. doi: http://dx.doi.org/10.1016/j.ejon.2012.02. 003
23. Butow PN, Phillips F, Schweder J, White K, Underhill C, Goldstein D (2011) Psychosocial well-being and supportive care needs of cancer patients living in urban and rural/regional areas: a systematic review. Support Care Cancer 20(1):1-22
24. Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P (2000) The unmet supportive care needs of patients with cancer. Cancer 88(1):226-237
25. Fatouros M, Baltoyiannis G, Roukos DH (2007) The predominant role of surgery in the prevention and new trends in the surgical treatment of women with BRCA1/2 mutations. Ann Surg Oncol 15(1):21-33
26. Bonevski B, Sanson-Fisher R, Girgis A, Burton L, Cook P, Boyes A, Supportive Care Review Group (2000) Evaluation of an instrument to assess the needs of patients with cancer. Cancer 88(1):217-225
27. Foot G, Sanson-Fisher R (1995) Measuring the unmet needs of people living with cancer. Cancer Forum 19(2):131-135
28. Horowitz M, Wilner N, Alvarez W (1979) Impact of event scale: a measure of subjective stress. Psychosom Med 41:209-218
29. Horowitz M (2006) Impact of events scale. http://www.mardihorowitz.com/ impact-of-events-scale.2011
30. Finch A, Metcalfe KA, Chiang J, Elit L, McLaughlin J, Springate C, Esplen MJ, Demsky R, Murphy J, Rosen B, Narod SA (2011) The impact of prophylactic salpingo-oophorectomy on quality of life and psychological distress in women with a BRCA mutation. Psychooncology. doi: 10.1002/pon.2041
31. Thewes B, Meiser B, Hickie IB (2001) Psychometric properties of the Impact of Event Scale amongst women at increased risk for hereditary breast cancer. Psychooncology 10(6):459-468
32. Froot KA (1989) Consistent covariance matrix estimation with cross-sectional dependence and heteroskedasticity in financial data. J Fin Quant Anal 24:333-355
33. Thewes B, Butow P, Girgis A, Pendlebury S (2004) The psychosocial needs of breast cancer survivors: a qualitative study of the shared and unique needs of younger versus older survivors. Psychooncology 13:177-189
34. Thewes B, Meiser B, Taylor A, Phillips KA, Capp PA, Dalley D, Goldstein D, Baber R, Friedlander ML (2005) Fertility and menopause related information needs of younger women with a diagnosis of early breast cancer. J Clin Oncol 23(22):5155-5165
35. Hoey LM, Ieropoli SC, White VM, Jefford M (2008) Systematic review of peer-support programs for people with cancer. Patient Educ Couns 70(3):315-337
36. Ganz PA (2008) Psychological and social aspects of breast cancer. Oncology 22(6):642-646
37. Schwartz MD, Peshkin BN, Hughes C, Main D, Isaacs C, Lerman C (2002) Impact of BRCA1/BRCA2 mutation testing on psychologic distress in a clinic-based sample. J Clin Oncol 20(2):514-520
38. Smith K, West J, Croyle R, Botkin JR (1999) Familial context of genetic testing for cancer susceptibility: moderating effect of siblings' test results on psychological distress one to two weeks after BRCA1 mutation testing. Cancer Epidemiol Biomarkers Prev 8:385-392
39. den Heijer M, Seynaeve C, Vanheusden K, Duivenvoorden HJ, Bartels CCM, Menke-Pluymers MBE, Tibben A (2011) Psychological distress in women at risk for hereditary breast cancer: the role of family communication and perceived social support. Psychooncology 2:1317-1323
40. Hamilton R, Hurley KE (2010) Conditions and consequences of a BRCA mutation in young, single women of childbearing age. Oncol Nurs Forum 37(5):627-634
41. Madalinska JB, Hollenstein J, Bleiker E, van Beurden M, Valdimarsdottir HB, Massuger LF, Katja N, Gaarenstroom KN, Mourits MJE, Verheijen RHM, van Dorst EBL, van der Putten H, van der Velden K, Boonstra H, Aaronson NK (2005) Quality of life effects of prophylactic salpingo-oophorectomy versus gynecologic screening among women at increased risk of hereditary ovarian cancer. J Clin Oncol 23(28):6890-6898
42. Bresser PJC, Seynaeve C, Van Gool AR, Niermeijer MF, Duivenvoorden HJ, van Dooren S, van Geel AN, Menke-Pluijmers M, Klijn JGM, Tibben A (2007) The course of distress in women at increased risk of breast and ovarian cancer due to an (identified) genetic susceptibility who opt for prophylactic mastectomy and/or salpingo oophorectomy. Eur J Cancer 43:95-103