Family Adjustment to Hereditary Cancer Syndromes: A Systematic Review
Abstract
:1. Introduction
2. Method
2.1. Search Strategy
2.2. Inclusion and Exclusion Criteria
2.3. Study Selection
2.4. Assessment of Risk of Bias
2.5. Data Extraction and Synthesis
3. Results
3.1. Description of the Included Studies: The MMAT-v2018 Checklist
3.2. Overview of Characteristics of Included Articles
3.3. The Family System Facing Genetic Testing Results
3.3.1. Positive and Negative Relational Changes after Genetic Testing
3.3.2. Siblings’ Adjustment
3.3.3. Couples’ Adjustment
3.3.4. The Family System Facing Risk-Reduction Decision Making and Long-Term Managing of Cancer Risk
3.3.5. Parents and Children Facing Hereditary Cancer Risk
4. Discussion
4.1. Limitations of the Current Research
4.2. Research Gaps and Recommendations for Future Studies and Clinical Practice
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
- Rahner, N.; Steinke, V. Hereditary Cancer Syndromes. Dtsch. Ärzteblatt Int. 2008, 105, 706–714. [Google Scholar] [CrossRef] [PubMed]
- National Cancer Institute BRCA Gene Mutations: Cancer Risk and Genetic Testing. Available online: https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#:~:text=Breast cancer%3A About 13%25 of,age (2–4) (accessed on 27 May 2021).
- Raymond, V.M.; Everett, J.N. Genetic Counselling and Genetic Testing in Hereditary Gastrointestinal Cancer Syndromes. Best Pract. Res. Clin. Gastroenterol. 2009, 23, 275–283. [Google Scholar] [CrossRef] [PubMed]
- Daly, M.B.; Pilarski, R.; Berry, M.; Buys, S.S.; Farmer, M.; Friedman, S.; Garber, J.E.; Kauff, N.D.; Khan, S.; Klein, C.; et al. Genetic/Familial High-Risk Assessment: Breast and Ovarian, Version 2.2017 NCCN Guidelines Insights Disclosure of Relevant Financial Relationships CE Planners: Individuals Who Provided Content Development and/or Authorship Assistance. J. Natl. Compr. Cancer Netw. 2017, 15, 9–20. [Google Scholar] [CrossRef] [PubMed]
- Vasen, H.F.A.; Blanco, I.; Aktan-Collan, K.; Gopie, J.P.; Alonso, A.; Aretz, S.; Bernstein, I.; Bertario, L.; Burn, J.; Capella, G.; et al. Revised Guidelines for the Clinical Management of Lynch Syndrome (HNPCC): Recommendations by a Group of European Experts. Gut 2013, 62, 812–823. [Google Scholar] [CrossRef] [PubMed]
- Harper, J.C.; Aittomäki, K.; Borry, P.; Cornel, M.C.; de Wert, G.; Dondorp, W.; Geraedts, J.; Gianaroli, L.; Ketterson, K.; Liebaers, I.; et al. Recent Developments in Genetics and Medically-Assisted Reproduction: From Research to Clinical Applications. Hum. Reprod. Open 2017, 2017, hox015. [Google Scholar] [CrossRef] [Green Version]
- Esplen, M.J.; Wong, J.; Aronson, M.; Butler, K.; Rothenmund, H.; Semotiuk, K.; Madlensky, L.; Way, C.; Dicks, E.; Green, J.; et al. Long-Term Psychosocial and Behavioral Adjustment in Individuals Receiving Genetic Test Results in Lynch Syndrome. Clin. Genet. 2015, 87, 525–532. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Lewis, K.L.; Umstead, K.L.; Johnston, J.J.; Miller, I.M.; Thompson, L.J.; Fishler, K.P.; Biesecker, L.G.; Biesecker, B.B. Outcomes of Counseling after Education about Carrier Results: A Randomized Controlled Trial. Am. J. Hum. Genet. 2018, 102, 540–546. [Google Scholar] [CrossRef] [Green Version]
- Worster, E.; Liu, X.; Richardson, S.; Hardwick, R.H.; Dwerryhouse, S.; Caldas, C.; Fitzgerald, R.C. The Impact of Prophylactic Total Gastrectomy on Health-Related Quality of Life: A Prospective Cohort Study. Ann. Surg. 2014, 260, 87–93. [Google Scholar] [CrossRef] [Green Version]
- Church, J.M. Prophylactic Colectomy in Patients with Hereditary Nonpolyposis Colorectal Cancer. Ann. Med. 1996, 28, 479–482. [Google Scholar] [CrossRef]
- Gopie, J.P.; Mureau, M.A.M.; Seynaeve, C.; ter Kuile, M.M.; Menke-Pluymers, M.B.E.; Timman, R.; Tibben, A. Body Image Issues after Bilateral Prophylactic Mastectomy with Breast Reconstruction in Healthy Women at Risk for Hereditary Breast Cancer. Fam. Cancer 2013, 12, 479–487. [Google Scholar] [CrossRef]
- Giardiello, F.M.; Allen, J.I.; Axilbund, J.E.; Boland, C.R.; Burke, C.A.; Burt, R.W.; Church, J.M.; Dominitz, J.A.; Johnson, D.A.; Kaltenbach, T.; et al. Guidelines on Genetic Evaluation and Management of Lynch Syndrome: A Consensus Statement by the US Multi-Society Task Force on Colorectal Cancer. Gastroenterology 2014, 147, 502–526. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Voorwinden, J.S.; Jaspers, J.P.C. Prognostic Factors for Distress after Genetic Testing for Hereditary Cancer. J. Genet. Couns. 2016, 25, 495–503. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Puski, A.; Hovick, S.; Senter, L.; Toland, A.E. Involvement and Influence of Healthcare Providers, Family Members, and Other Mutation Carriers in the Cancer Risk Management Decision-Making Process of BRCA1 and BRCA2 Mutation Carriers. J. Genet. Couns. 2018, 27, 1291–1301. [Google Scholar] [CrossRef] [PubMed]
- Rolland, J.S.; Williams, J.K. Toward a Biopsychosocial Model for 21 St-Century Genetics. Fam. Process 2005, 44, 3–24. [Google Scholar] [CrossRef]
- Lerman, C.; Shields, A.E. Genetic Testing for Cancer Susceptibility: The Promise and the Pitfalls. Nat. Rev. Cancer 2004, 4, 235–241. [Google Scholar] [CrossRef]
- Marteau, T.; Richards, M. The Troubled Helix: Social and Psychological Implications of the New Human Genetics; Marteau, T., Richards, M., Eds.; Cambridge University Press: New York, NY, USA, 1996; ISBN 0-521-46288-6 (Hardcover). [Google Scholar]
- Hadley, D.W.; Ashida, S.; Jenkins, J.F.; Martin, J.C.; Calzone, K.A.; Kuhn, N.R.; McBride, C.M.; Kirsch, I.R.; Koehly, L.M. Generation after Generation: Exploring the Psychological Impact of Providing Genetic Services through a Cascading Approach. Genet. Med. 2010, 12, 808–815. [Google Scholar] [CrossRef]
- Rolland, J.S.; Williams, J.K. Toward a Psychosocial Model for the New Era of Genetics. In Individuals, Families, and the New Era of Genetics: Biopsychosocial Perspectives; W W Norton & Co.: New York, NY, USA, 2006; pp. 36–75, ISBN 0-393-70374-6 (Hardcover); 978-0-393-70374-0 (Hardcover). [Google Scholar]
- Daly, M.B. A Family-Centered Model for Sharing Genetic Risk. J. Law Med. Ethics 2015, 43, 545. [Google Scholar] [CrossRef]
- Mendes, Á.; Chiquelho, R.; Santos, T.A.; Sousa, L. Family Matters: Examining a Multi-Family Group Intervention for Women with BRCA Mutations in the Scope of Genetic Counselling. J. Community Genet. 2010, 1, 161. [Google Scholar] [CrossRef] [Green Version]
- Hamilton, J.G.; Lobel, M.; Moyer, A. Emotional Distress Following Genetic Testing for Hereditary Breast and Ovarian Cancer: A Meta-Analytic Review. Health Psychol. 2009, 28, 510–518. [Google Scholar] [CrossRef]
- Heshka, J.T.; Palleschi, C.; Howley, H.; Wilson, B.; Wells, P.S. A Systematic Review of Perceived Risks, Psychological and Behavioral Impacts of Genetic Testing. Genet. Med. 2008, 10, 19–32. [Google Scholar] [CrossRef] [Green Version]
- Lombardi, L.; Bramanti, S.M.; Babore, A.; Stuppia, L.; Trumello, C.; Antonucci, I.; Cavallo, A. Psychological Aspects, Risk and Protective Factors Related to BRCA Genetic Testing: A Review of the Literature. Supportive Care Cancer 2019, 27, 3647–3656. [Google Scholar] [CrossRef] [PubMed]
- Heiniger, L.; Butow, P.N.; Price, M.A.; Charles, M. Distress in Unaffected Individuals Who Decline, Delay or Remain Ineligible for Genetic Testing for Hereditary Diseases: A Systematic Review. Psycho-Oncology 2013, 22, 1930–1945. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Braithwaite, D.; Emery, J.; Walter, F.; Prevost, A.T.; Sutton, S. Psychological Impact of Genetic Counseling for Familial Cancer: A Systematic Review and Meta-Analysis. Fam. Cancer 2006, 5, 61–75. [Google Scholar] [CrossRef] [PubMed]
- Oliveri, S.; Ferrari, F.; Manfrinati, A.; Pravettoni, G. A Systematic Review of the Psychological Implications of Genetic Testing: A Comparative Analysis among Cardiovascular, Neurodegenerative and Cancer Diseases. Front. Genet. 2018, 9, 624. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Yanes, T.; Willis, A.M.; Meiser, B.; Tucker, K.M.; Best, M. Psychosocial and Behavioral Outcomes of Genomic Testing in Cancer: A Systematic Review. Eur. J. Hum. Genet. 2019, 27, 28–35. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Krassuski, L.; Vennedey, V.; Stock, S.; Kautz-Freimuth, S. Effectiveness of Decision Aids for Female BRCA1 and BRCA2 Mutation Carriers: A Systematic Review. BMC Med. Inform. Decis. Mak. 2019, 19, 154. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Sherman, K.A.; Kasparian, N.A.; Mireskandan, S. Psychological Adjustment among Male Partners in Response to Women’s Breast/Ovarian Cancer Risk: A Theoretical Review of the Literature. Psycho-Oncology 2010, 19, 1–11. [Google Scholar] [CrossRef]
- Khan, K.S.; Kunz, R.; Kleijnen, J.; Antes, G. Five Steps to Conducting a Systematic Review. J. R. Soc. Med. 2003, 96, 118–121. [Google Scholar] [CrossRef]
- Moher, D.; Liberati, A.; Tetzlaff, J.; Altman, D.G. Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. BMJ 2009, 339, 2535. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Huang, X.; Lin, J.; Demner-Fushman, D. Evaluation of PICO as a Knowledge Representation for Clinical Questions. AMIA Annu. Symp. Proc. 2006, 2006, 359–363. [Google Scholar]
- Valdosta State University Boolean, Truncation, and Wildcards: Home. Available online: https://libguides.valdosta.edu/boolean-truncation-wildcards (accessed on 25 May 2019).
- Gopie, J.P.; Vasen, H.F.A.; Tibben, A. Surveillance for Hereditary Cancer: Does the Benefit Outweigh the Psychological Burden? A Systematic Review. Crit. Rev. Oncol./Hematol. 2012, 83, 329–340. [Google Scholar] [CrossRef] [PubMed]
- van Oostrom, I. Family Matters: Adjustment to Genetic Cancer Susceptibility Testing; Erasmus University: Rotterdam, The Netherlands, 2006. [Google Scholar]
- Smith, V.; Devane, D.; Begley, C.M.; Clarke, M. Methodology in Conducting a Systematic Review of Systematic Reviews of Healthcare Interventions. BMC Med. Res. Methodol. 2011, 11, 15. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Arver, B.; Haegermark, A.; Platten, U.; Lindblom, A.; Brandberg, Y. Evaluation of Psychosocial Effects of Pre-Symptomatic Testing for Breast/Ovarian and Colon Cancer Pre-Disposing Genes: A 12-Month Follow-Up. Fam. Cancer 2004, 3, 109–116. [Google Scholar] [CrossRef] [PubMed]
- Gritz, E.R.; Vernon, S.W.; Peterson, S.K.; Baile, W.F.; Marani, S.K.; Amos, C.I.; Frazier, M.L.; Lynch, P.M. Distress in the Cancer Patient and Its Association with Genetic Testing and Counseling for Hereditary Non-Polyposis Colon Cancer. Cancer Res. Ther. Control. 1999, 8, 35–49. [Google Scholar]
- Keller, M.; Jost, R.; Haunstetter, C.M.; Sattel, H.; Schroeter, C.; Bertsch, U.; Cremer, F.; Kienle, P.; Tariverdian, M.; Kloor, M.; et al. Psychosocial Outcome Following Genetic Risk Counselling for Familial Colorectal Cancer. A Comparison of Affected Patients and Family Members. Clin. Genet. 2008, 74, 414–424. [Google Scholar] [CrossRef]
- Kinney, A.Y.; Bloor, L.E.; Mandal, D.; Simonsen, S.E.; Baty, B.J.; Holubkov, R.; Seggar, K.; Neuhausen, S.; Smith, K. The Impact of Receiving Genetic Test Results on General and Cancer-Specific Psychologic Distress among Members of an African-American Kindred with a BRCA1 Mutation. Cancer 2005, 104, 2508–2516. [Google Scholar] [CrossRef]
- Maheu, C.; Bouhnik, A.-D.; Nogues, C.; Mouret-Fourme, E.; Stoppa-Lyonnet, D.; Lasset, C.; Berthet, P.; Fricker, J.-P.; Caron, O.; Luporsi, E.; et al. Which Factors Predict Proposal and Uptake of Psychological Counselling after BRCA1/2 Test Result Disclosure? Psycho-Oncology 2014, 23, 420–427. [Google Scholar] [CrossRef]
- Meiser, B. Psychological Impact of Genetic Testing for Cancer Susceptibility: An Update of the Literature. Psycho-Oncology 2005, 14, 1060–1074. [Google Scholar] [CrossRef]
- Driel, V. Risk-Reducing Surgery Uptake & Menopausal Consequences; University of Groningen: Groningen, The Netherlands, 2019. [Google Scholar]
- van Roosmalen, M.S.; Stalmeier, P.F.M.; Verhoef, L.C.G.; Hoekstra-Weebers, J.E.H.M.; Oosterwijk, J.C.; Hoogerbrugge, N.; Moog, U.; van Daal, W.A.J. Impact of BRCA1/2 Testing and Disclosure of a Positive Test Result on Women Affected and Unaffected with Breast or Ovarian Cancer. Am. J. Med. Genet. Part A 2004, 124A, 346–355. [Google Scholar] [CrossRef] [Green Version]
- Johnson, K.A.; Trimbath, J.D.; Petersen, G.M.; Griffin, C.A.; Giardiello, F.M. Impact of Genetic Counseling and Testing on Colorectal Cancer Screening Behavior. Genet. Test. Mol. Biomark. 2002, 6, 303–306. [Google Scholar] [CrossRef]
- Brown, K.L.; Moglia, D.M.; Grumet, S. Genetic Counseling for Breast Cancer Risk: General Concepts, Challenging Themes and Future Directions. Breast Dis. 2007, 27, 69–96. [Google Scholar] [CrossRef] [PubMed]
- Flugelman, A.; Rennert, G.; Eidelman, S. Psychological and familial aspects of the familial breast and ovarian cancer genetic counseling process. Harefuah 2014, 153, 22–26, 65. [Google Scholar] [PubMed]
- Carlsson, C.; Nilbert, M. Living with Hereditary Non-Polyposis Colorectal Cancer; Experiences from and Impact of Genetic Testing. J. Genet. Couns. 2007, 16, 811–820. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Healey, E.; Taylor, N.; Greening, S.; Wakefield, C.E.; Warwick, L.; Williams, R.; Tucker, K. Quantifying Family Dissemination and Identifying Barriers to Communication of Risk Information in Australian BRCA Families. Genet. Med. 2017, 19, 1323–1331. [Google Scholar] [CrossRef] [Green Version]
- Costalas, J.W.; Itzen, M.; Malick, J.; Babb, J.S.; Bove, B.; Godwin, A.K.; Daly, M.B. Communication of BRCA1 and BRCA2 Results to At-Risk Relatives: A Cancer Risk Assessment Program’s Experience. Am. J. Med. Genet. Part C Semin. Med. Genet. 2003, 119C, 11–18. [Google Scholar] [CrossRef]
- Codori, A.-M.; Zawacki, K.L.; Petersen, G.M.; Miglioretti, D.L.; Bacon, J.A.; Trimbath, J.D.; Booker, S.V.; Picarello, K.; Giardiello, F.M. Genetic Testing for Hereditary Colorectal Cancer in Children: Long-Term Psychological Effects. Am. J. Med. Genet. Part A 2003, 116A, 117–128. [Google Scholar] [CrossRef]
- McGivern, B.; Everett, J.; Yager, G.G.; Baumiller, R.C.; Hafertepen, A.; Saal, H.M. Family Communication about Positive BRCA1 and BRCA2 Genetic Test Results. Genet. Med. 2004, 6, 503–509. [Google Scholar] [CrossRef]
- Vos, J.; Gómez-García, E.; Oosterwijk, J.C.; Menko, F.H.; Stoel, R.D.; van Asperen, C.J.; Jansen, A.M.; Stiggelbout, A.M.; Tibben, A. Opening the Psychological Black Box in Genetic Counseling. The Psychological Impact of DNA Testing Is Predicted by the Counselees’ Perception, the Medical Impact by the Pathogenic or Uninformative BRCA1/2-Result. Psycho-Oncology 2012, 21, 29–42. [Google Scholar] [CrossRef]
- Katapodi, M.C.; Munro, M.L.; Pierce, P.F.; Williams, R.A. Testing of the Decisional Conflict Scale: Genetic Testing Hereditary Breast, Ovarian Cancer. Nurs. Res. 2011, 60, 368. [Google Scholar] [CrossRef] [Green Version]
- Mendes, Á.; Sousa, L. Families’ Experience of Oncogenetic Counselling: Accounts from a Heterogeneous Hereditary Cancer Risk Population. Fam. Cancer 2012, 11, 291–306. [Google Scholar] [CrossRef]
- Milhabet, I.; Duprez, C.; Krzeminski, A.; Christophe, V. Cancer Risk Comparative Perception and Overscreening Behaviours of Non-Carriers from BRCA1/2 Families. Eur. J. Cancer Care 2013, 22, 540–548. [Google Scholar] [CrossRef] [PubMed]
- Hong, Q.N.; Fàbregues, S.; Bartlett, G.; Boardman, F.; Cargo, M.; Dagenais, P.; Gagnon, M.-P.; Griffiths, F.; Nicolau, B.; O’Cathain, A.; et al. The Mixed Methods Appraisal Tool (MMAT) Version 2018 for Information Professionals and Researchers. Educ. Inf. 2018, 34, 285–291. [Google Scholar] [CrossRef] [Green Version]
- Peterson, S.K.; Watts, B.G.; Koehly, L.M.; Vernon, S.W.; Baile, W.F.; Kohlmann, W.K.; Gritz, E.R. How Families Communicate about HNPCC Genetic Testing: Findings from a Qualitative Study. Am. J. Med. Genet. 2003, 119, 78–86. [Google Scholar] [CrossRef] [PubMed]
- Norris, J.; Spelic, S.S.; Snyder, C.; Tinley, S. Five Families Living with Hereditary Breast and Ovarian Cancer Risk. Clin. J. Oncol. Nurs. 2009, 13, 73–80. [Google Scholar] [CrossRef] [PubMed]
- Mireskandari, S.; Meiser, B.; Sherman, K.; Warner, B.J.; Andrews, L.; Tucker, K.M. Evaluation of the Needs and Concerns of Partners of Women at High Risk of Developing Breast/Ovarian Cancer. Psycho-Oncology 2006, 15, 96–108. [Google Scholar] [CrossRef] [PubMed]
- den Heijer, M.; Seynaeve, C.; Vanheusden, K.; Duivenvoorden, H.J.; Bartels, C.C.M.; Menke-Pluymers, M.B.E.; Tibben, A. Psychological Distress in Women at Risk for Hereditary Breast Cancer: The Role of Family Communication and Perceived Social Support. Psycho-Oncology 2011, 20, 1317–1323. [Google Scholar] [CrossRef] [PubMed]
- Murakami, Y.; Okamura, H.; Sugano, K.; Yoshida, T.; Kazuma, K.; Akechi, T.; Uchitomi, Y. Psychologic Distress after Disclosure of Genetic Test Results Regarding Hereditary Nonpolyposis Colorectal Carcinoma: A Preliminary Report. Cancer 2004, 101, 395–403. [Google Scholar] [CrossRef] [PubMed]
- Shapira, R.; Turbitt, E.; Erby, L.H.; Biesecker, B.B.; Klein, W.M.P.; Hooker, G.W. Adaptation of Couples Living with a High Risk of Breast/Ovarian Cancer and the Association with Risk-Reducing Surgery. Fam. Cancer 2017, 17, 485–493. [Google Scholar] [CrossRef] [PubMed]
- van Oostrom, I.; Meijers-heijboer, H.; Duivenvoorden, H.J.; Bröcker-vriends, A.H.J.T.; van Asperen, C.J.; Sijmons, R.H.; Seynaeve, C.; van Gool, A.R.; Klijn, E.; Tibben, A. Family System Characteristics and Psychological Adjustment to Cancer Susceptibility Genetic Testing: A Prospective Study. Clin. Genet. 2007, 71, 35–42. [Google Scholar] [CrossRef]
- van Oostrom, I.; Meijers-Heijboer, H.; Duivenvoorden, H.J.; Bröcker-Vriends, A.H.J.T.; van Asperen, C.J.; Sijmons, R.H.; Seynaeve, C.; van Gool, A.R.; Klijn, J.G.M.; Riedijk, S.R.; et al. A Prospective Study of the Impact of Genetic Susceptibility Testing for BRCA 1/2 or HNPCC on Family Relationships. Psycho-Oncology 2007, 16, 320–328. [Google Scholar] [CrossRef]
- Metcalfe, K.A.; Liede, A.; Trinkaus, M.; Hanna, D.; Narod, S.A. Evaluation of the Needs of Spouses of Female Carriers of Mutations in BRCA1 and BRCA2. Clin. Genet. 2002, 62, 464–469. [Google Scholar] [CrossRef] [PubMed]
- Mireskandari, S.; Sherman, K.A.; Meiser, B.; Taylor, A.J.; Gleeson, M.; Andrews, L.; Tucker, K.M. Psychological Adjustment among Partners of Women at High Risk of Developing Breast/Ovarian Cancer. Genet. Med. 2007, 9, 311–320. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Watts, K.J.; Sherman, K.A.; Mireskandari, S.; Meiser, B.; Taylor, A.; Tucker, K. Predictors of Relationship Adjustment among Couples Coping with a High Risk of Developing Breast/Ovarian Cancer. Psychol. Health 2011, 26, 21–39. [Google Scholar] [CrossRef]
- Ashida, S.; Hadley, D.W.; Vaughn, B.K.; Kuhn, N.R.; Jenkins, J.F.; Koehly, L.M. The Impact of Familial Environment on Depression Scores after Genetic Testing for Cancer Susceptibility. Clin. Genet. 2009, 75, 43–49. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Douma, K.F.L.; Bleiker, E.M.A.; Vasen, H.F.A.; Gundy, C.M.; Gerritsma, M.A.; Aaronson, N.K. Psychological Distress and Quality of Life of Partners of Individuals with Familial Adenomatous Polyposis. Psycho-Oncology 2011, 20, 146–154. [Google Scholar] [CrossRef] [PubMed]
- Wylie, J.E.; Smith, K.R.; Botkin, J.R. Effects of Spouses on Distress Experienced ByBRCA1 Mutation Carriers over Time. Am. J. Med. Genet. 2003, 119C, 35–44. [Google Scholar] [CrossRef] [PubMed]
- Koehly, L.M.; Peters, J.A.; Kuhn, N.R.; Hoskins, L.; Letocha, A.; Kenen, R.; Loud, J.; Greene, M.H. Sisters in Hereditary Breast and Ovarian Cancer Families: Communal Coping, Social Integration, and Psychological Well-Being. Psycho-Oncology 2008, 17, 812–821. [Google Scholar] [CrossRef] [Green Version]
- Hamann, H.A.; Smith, T.W.; Smith, K.R.; Croyle, R.T.; Ruiz, J.M.; Kircher, J.C.; Botkin, J.R. Interpersonal Responses Among Sibling Dyads Tested for BRCA1/BRCA2 Gene Mutations. Health Psychol. 2008, 27, 100–109. [Google Scholar] [CrossRef] [Green Version]
- Smith, K.R.; West, J.A.; Croyle, R.T.; Botkin, J.R. 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 1. Cancer Epidemiol. Biomark. Prev. 1999, 8, 385–392. [Google Scholar]
- Mays, D.; Demarco, T.A.; Luta, G.; Peshkin, B.N.; Patenaude, A.F.; Schneider, K.A.; Garber, J.E.; Tercyak, K.P. Distress and the Parenting Dynamic among BRCA1/2 Tested Mothers and Their Partners. Health Psychol. 2014, 33, 765–773. [Google Scholar] [CrossRef] [Green Version]
- Patenaude, A.F.; Tung, N.; Ryan, P.D.; Ellisen, L.W.; Hewitt, L.; Schneider, K.A.; Tercyak, K.P.; Aldridge, J.; Garber, J.E. Young Adult Daughters of BRCA1/2 Positive Mothers: What Do They Know about Hereditary Cancer and How Much Do They Worry? Psycho-Oncology 2013, 22, 2024–2031. [Google Scholar] [CrossRef] [PubMed]
- Lodder, L.; Frets, P.G.; Willem Trijsburg, R.; Johanna Meijers-Heijboer, E.; Klijn, J.G.M.; Duivenvoorden, H.J.; Tibben, A.; Wagner, A.; van der Meer, C.A.; van den Ouweland, A.M.W.; et al. Psychological Impact of Receiving a BRCA1/BRCA2 Test Result. Am. J. Med. Genet. 2001, 98, 15–24. [Google Scholar] [CrossRef]
- di Prospero, L.S.; Seminsky, M.; Honeyford, J.; Doan, B.; Franssen, E.; Meschino, W.; Chart, P.; Warner, E. Psychosocial Issues Following a Positive Result of Genetic Testing for BRCA1 and BRCA2 Mutations: Findings from a Focus Group and a Needs-Assessment Survey. Cmaj 2001, 164, 1005–1009. [Google Scholar] [PubMed]
- Eliezer, D.; Hadley, D.W.; Koehly, L.M. Exploring Psychological Responses to Genetic Testing for Lynch Syndrome within the Family Context. Psycho-Oncology 2014, 23, 1292–1299. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Bartle-Haring, S.; Gregory, P. Relationship between Differentiation of Self and the Stress and Distress Associated with Predictive Cancer Genetic Counseling and Testing: Preliminary Evidence. Fam. Syst. Health 2003, 21, 357–381. [Google Scholar] [CrossRef]
- Manne, S.; Audrain, J.; Schwartz, M.; Main, D.; Finch, C.; Lerman, C. Associations between Relationship Support and Psychological Reactions of Participants and Partners to BRCA1 and BRCA2 Testing in a Clinic-Based Sample. Ann. Behav. Med. 2004, 28, 211–225. [Google Scholar] [CrossRef]
- Mauer, C.; Spencer, S.; Dungan, J.; Hurley, K. Exploration of Male Attitudes on Partnerships and Sexuality with Female BRCA1/2 Mutation Carriers. J. Genet. Couns. 2016, 25, 290–297. [Google Scholar] [CrossRef]
- McInerney-Leo, A.; Biesecker, B.B.; Hadley, D.W.; Kase, R.G.; Giambarresi, T.R.; Johnson, E.; Lerman, C.; Struewing, J.P. BRCA1/2 Testing in Hereditary Breast and Ovarian Cancer Families II: Impact on Relationships. Am. J. Med. Genet. 2005, 133A, 165–169. [Google Scholar] [CrossRef]
- Juni, S. Survivor Guilt. Int. Rev. Vict. 2016, 22, 321–337. [Google Scholar] [CrossRef]
- Glaser, S.; Knowles, K.; Damaskos, P. Survivor Guilt in Cancer Survivorship. Soc. Work. Health Care 2019, 58, 764–775. [Google Scholar] [CrossRef]
- Douglas, H.A.; Hamilton, R.J.; Grubs, R.E. The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews. J. Genet. Couns. 2009, 18, 418–435. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Werner-Lin, A.; Merrill, S.L.; Brandt, A.C. Talking with Children About Adult-Onset Hereditary Cancer Risk: A Developmental Approach for Parents. J. Genet. Couns. 2018, 27, 533–548. [Google Scholar] [CrossRef] [PubMed]
- Hagedoorn, M.; Sanderman, R.; Bolks, H.N.; Tuinstra, J.; Coyne, J.C. Distress in Couples Coping with Cancer: A Meta-Analysis and Critical Review of Role and Gender Effects. Psychol. Bull. 2008, 134, 1–30. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Ersig, A.L.; Williams, J.K.; Hadley, D.W.; Koehly, L.M. Communication, Encouragement, and Cancer Screening in Families with and without Mutations for Hereditary Nonpolyposis Colorectal Cancer: A Pilot Study. Genet. Med. 2009, 11, 728–734. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Lyons, R.F.; Mickelson, K.D.; Sullivan, M.J.L.; Coyne, J.C. Coping as a Communal Process. J. Soc. Pers. Relatsh. 1998, 15, 579–605. [Google Scholar] [CrossRef]
- Helgeson, V.S.; Jakubiak, B.; van Vleet, M.; Zajdel, M. Communal Coping and Adjustment to Chronic Illness: Theory Update and Evidence. Personal. Soc. Psychol. Rev. 2017, 22, 170–195. [Google Scholar] [CrossRef]
- Baroutsou, V.; Underhill-Blazey, M.L.; Appenzeller-Herzog, C.; Katapodi, M.C. Interventions Facilitating Family Communication of Genetic Testing Results and Cascade Screening in Hereditary Breast/Ovarian Cancer or Lynch Syndrome: A Systematic Review and Meta-Analysis. Cancers 2021, 13, 925. [Google Scholar] [CrossRef]
Author, Year | Design | GT | Sample Size (n) | Gender|MALE-n(%):FEMALE-n(%) | Main Outcomes |
---|---|---|---|---|---|
Ashida et al., 2009 [70] | Longitudinal cohort study | HBOC | 178 | 75(42.1%):103(57.9%) | Lower perceived family cohesion associated with higher depression scores; Increase in family conflict associated with lower depression scores in families with higher levels of cancer worry. |
Bartle-Haring et al., 2003 [81] | Longitudinal observational (pilot) study | HBOC or HNPCC | 50:MC = 25; FM = 25 | MC = 5(20%):19(76%); FM = 9(36%):14(56%) | Higher levels of differentiation of self are associated with less distress in mutation carriers and family members. |
den Heijer et al., 2011 [62] | Longitudinal observational | HBOC | 222 | F = 100% | Open communication within families is associated with less breast cancer-specific distress and plays a mediating role between social support and distress. |
Di Prospero et al., 2001 [79] | Exploratory study | HBOC | 24 | 2(8.3%):22(91.7%) | Most participants felt a little or moderately worried about cancer risk, and nine subjects considered they would benefit from a support group. |
Douma et al., 2011 [71] | Cross-sectional | FAP | FM = 129 | 63(49%):65(51%) | 30% of partners reported moderate to severe levels of distress; Partners ‘distres significantly associated with carriers’. |
Eliezer et al., 2014 [80] | Longitudinal observational | HNPCC | 179 (26 families) | 75(42%):104(58%) | A higher proportion of carriers in the family predicted a higher probability of participants presenting clinical levels of depression |
Hamann et al., 2008 [74] | Experimental | HBOC | 98 (49 dyads: 16 positive, 13 negative, 20 mixed results) | 23(23.5%):75(76.5%) | Dyads with mixed results (one positive, one negative) reported less friendly support behavior and a higher increase in anger than dyads with positive or negative results. |
Katapodi et al., 2011 [55] | Descriptive, Cross-sectional | HBOC | 372 (MC = 200; FM = 172) | F = 100% | Probands showed higher risk perception and more distress than their relatives; Relatives showed a higher perception of severity and controllability. |
Koehly et al., 2008 [73] | Cross-sectional | HBOC | 65 (31 families) | F = 100% | Significant within family correlation of perceived risk, cancer worry, anxiety, and somatization irrespective of mutation status. |
Lodder et al., 2001 [78] | Longitudinal observational | HBOC | 154 (MC = 78 FM = 56) | F = 100% | Higher anxiety levels were found in 20% of carriers and 35% of partners. Levels of anxiety best predicted by pre-test level of anxiety. |
Manne et al., 2004 [82] | Longitudinal observational | HBOC | 464 (MC = 212; FM = 252) | MC_F = 100%; FM = 117(99.2%):1(0.8%) | Less partner support and more protective buffering from partner before the test predicted more distress from carriers 6 months after results; Partners who felt understood by applicants at baseline reported less distress 6 months after. |
Mauer et al., 2015 [83] | Cross-sectional | HBOC | FM = 25 | Participants reported negative changes in intimacy levels, attraction, and communication with their partners and more frequent discussions about the future. | |
Mays et al., 2014 [76] | Prospective study | HBOC | 109 dyads | FM_Mothers: F = 100%; FM_Partners: M = 100% | Decisional conflicts before genetic testing from one member of the couple predicted higher distress in the other member of the dyad one month after the test. |
McInerney-Leo et al., 2005 [84] | Prospective study | HBOC | 262 | Total = 92(35%):170(65%) | Perceptions of family cohesion increased both when participants underwent testing and when they did not; Conflict decreased from baseline for those who underwent testing. |
Mendes & Sousa, 2012 [56] | Exploratory, qualitative study | HNPCC or HBOC or HDGC | 50 (9 families) | F = 58% | Cancer related events within the family impact how carriers assess their risk; Families consider genetic counseling an emotionally taxing process. |
Metcalfe et al., 2002 [67] | Cross-sectional | HBOC | FM = 59 | M = 100% | Twenty percent of partners considered their carrier spouse received inadequate support. Most partners felt that the syndrome brought them closer to their spouse |
Milhabet et al., 2013 [57] | Cross-sectional | HBOC | FM = 77 | F = 100% | Overscreening behaviors by non-carriers were associated with feelings of self-vulnerability and pessimism related to cancer risk |
Mireskandari et al., 2006 [61] | Exploratory study | HBOC | FM = 15 | M = 100% | Better adjustment and coping for partners of women with HBOC were associated with dealing with the stressor as a team, involvement in the decision-making, satisfaction with supportive role, and optimism. |
Mireskandari et al., 2007 [68] | Single-assessment study design | HBOC | 190 (MC = 95; FM = 95 | 95(50%):95(50%) | Clinical levels of distress were reported by 10% of partners of women at high risk of HBOC; Open communication within the couple associated with less partner distress. |
Murakami et al., 2004 [63] | Prospective qualitative study | HNPCC | 47 (MC = 31; FM = 16) | Total = 20(47.6%):22(52.4%) | Some carriers reported feelings of guilt either towards their children or family members affected by cancer. |
Norris et al., 2009 [60] | Descriptive qualitative study | HBOC | 17 (5 families) | 6(35.3%):11(64.7%) | Families often need more professional support than what they are getting with genetic counseling. Parents are unsure about how to share genetic information with their offspring. |
Patenaude et al., 2013 [77] | Observational mixed-methods study | HBOC | MC = 40 | F = 100% | Daughters presented worries about their own risk and their mothers’, and 32% percent of participants showed clinical levels of cancer-risk distress. |
Peterson et al., 2003 [59] | Retrospective qualitative study | HNPCC | 39 (5 families) | 15(38.5%):24(61.5%) | Spouses of carriers considered the news about the mutation as less personally relevant even when they had children at risk. Members of families with the most uptake of genetic testing worried for others that opted not to be tested |
Puski et al., 2018 [14] | Qualitative descriptive | HBOC | 20 | F = 100% | Most often, family members are involved in the decision-making process by providing emotional and social support; Some family members may put too much pressure on carriers to make a decision, causing them discomfort. |
Shapira et al., 2017 [64] | Observational | HBOC | 229 (MC = 168; FM = 61) | NR | Partner’s perception of risk similar to carriers’. Dyadic coping scores not related to carriers’ or partners’ adaptation scores |
Smith et al., 1999 [75] | Longitudinal observational | HBOC | 212 | 87(41%):125(59%) | Non-carrier men whose siblings tested positive reported more distress than when siblings tested negative; Carrier women whose siblings either tested negative or had not yet been tested presented greater psychological distress. |
Van Oostrom et al., 2007a [65] | Prospective study | HNPCC and HBOC | MC = 271 | 32(12%):239(88%) | Participants perceiving family functioning as maladaptive reported more hereditary cancer-related distress than participants who perceived their family as adaptive. |
Van Oostrom et al., 2007b [66] | Prospective study | HNPCC and HBOC | MC = 272 | 32(12%):239(88%) | Perceiving their family as enmeshed-chaotic or disengaged and feeling less free to talk about cancer-risk related issues predicted relationship problems with their family. |
Watts et al., 2011 [69] | Observational | HBOC | 188 (MC = 94; FM = 94) | F = 100% (FM_M = 100%) | Higher perceived support associated with greater dyadic consensus and satisfaction; Dyadic cohesion and satisfaction were associated with the use of a team approach when dealing with stressors |
Wylie et al., 2003 [72] | Longitudinal observational | HBOC | 203 | M = 100% | Higher anxiety from the partner predicts higher distress for the tested person, while higher support from the partner predicts lower distress for the applicant. |
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Gomes, P.; Pietrabissa, G.; Silva, E.R.; Silva, J.; Matos, P.M.; Costa, M.E.; Bertuzzi, V.; Silva, E.; Neves, M.C.; Sales, C.M.D. Family Adjustment to Hereditary Cancer Syndromes: A Systematic Review. Int. J. Environ. Res. Public Health 2022, 19, 1603. https://doi.org/10.3390/ijerph19031603
Gomes P, Pietrabissa G, Silva ER, Silva J, Matos PM, Costa ME, Bertuzzi V, Silva E, Neves MC, Sales CMD. Family Adjustment to Hereditary Cancer Syndromes: A Systematic Review. International Journal of Environmental Research and Public Health. 2022; 19(3):1603. https://doi.org/10.3390/ijerph19031603
Chicago/Turabian StyleGomes, Pedro, Giada Pietrabissa, Eunice R. Silva, João Silva, Paula Mena Matos, Maria Emília Costa, Vanessa Bertuzzi, Eliana Silva, Maria Carolina Neves, and Célia M. D. Sales. 2022. "Family Adjustment to Hereditary Cancer Syndromes: A Systematic Review" International Journal of Environmental Research and Public Health 19, no. 3: 1603. https://doi.org/10.3390/ijerph19031603