Behavioral and psychosocial responses to genomic testing for colorectal cancer risk

Graves, Kristi D.; Leventhal, Kara-Grace; Nusbaum, Rachel; Salehizadeh, Yasmin; Hooker, Gillian W.; Peshkin, Beth N.; Butrick, Morgan; Tuong, William; Mathew, Jeena; Goerlitz, David; Fishman, Mary; Shields, Peter G.; Schwartz, Marc D.

doi:10.1016/j.ygeno.2013.04.002

Cited by 33 publications

(52 citation statements)

References 38 publications

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“…Next steps could also include the development and testing of print or interactive decision tools to facilitate telephone counseling at pre- and post-test disclosure using the extant literature as a guide. 28,30 Our finding that pre-disclosure confidence in coping with genetic test results was related to result disclosure to family members points to specific intervention targets. Findings from this study suggest that telephone counseling to return MMR test results is feasible within a research context, that many participants choose to disclose MMR results to family members and that those at greatest risk report sharing results with a healthcare professional.…”

Section: Discussionmentioning

confidence: 86%

“…28 Tailored telephone approaches have been successful in increasing other health behaviors, including screening mammography and colorectal cancer screening; more recently, to return genetic test findings in clinical settings. 29,30 The often slow translation of research findings into clinical practice underscores the need to make relevant and clinically actionable research results available to interested research participants—and if appropriate, their families and healthcare providers.…”

Section: Discussionmentioning

confidence: 99%

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Communication of genetic test results to family and health-care providers following disclosure of research results

Graves

Sinicrope

Esplen

et al. 2014

Genetics in Medicine

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Purpose Few studies have examined methods to promote communication following the return of DNA mismatch repair (MMR) genetic test results obtained during research. The purpose of the present study was to evaluate a telephone protocol for returning research results of MMR gene testing to identify Lynch Syndrome. Methods We invited individuals with known MMR mutations in their family who were enrolled in the Colon Cancer Family Registry at the Mayo Clinic to participate. Participants completed surveys before and 6-months after MMR test result disclosure. Results Among 107 participants, 79% opted to learn their MMR test results; of these, 44 (41%) carried MMR mutations. Post-disclosure, 54% reported screening for any type of cancer. Among carriers, >74% reported communicating results to family; communication was predicted by baseline confidence in coping with the genetic test result (Z=1.97, P=.04). Result disclosure to a physician was predicted by greater perceived cancer risk (Z=2.08, P=.03) and greater intention to share results with family (Z=3.07, P=.002). Conclusions Research vs. clinically-based gene disclosure presents challenges. A telephone disclosure process for the return of research-based results among Lynch syndrome families led to high rates of result uptake and participant communication of results to providers and family members.

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Section: Discussionmentioning

confidence: 86%

Section: Discussionmentioning

confidence: 99%

Communication of genetic test results to family and health-care providers following disclosure of research results

Graves

Sinicrope

Esplen

et al. 2014

Genetics in Medicine

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“…8,13,17,20 Previous research suggests theoretical models such as the HBM, 24 as used in this study, can explain the relationship between participants' perceptions and testing intentions. 14,16,21,28 Specifically, those who view genetic testing positively, and perceive that potential benefits can be accrued, are more likely to undergo testing.…”

Section: Willingness-to-paymentioning

confidence: 99%

“…11 The potential psychological impacts, along with concerns regarding family planning, fertility, lifestyle choices and health management, 5,12 indicate individualized management and genetic counseling should remain a priority. 3,10 A large body of research has investigated public [13][14][15][16][17] and patient 1,3,[18][19][20][21][22] perceptions of genetic testing, and reported that despite low levels of understanding, perceived benefits outweigh the risks. Patients' most highly-rated benefits include increased knowledge, better outcomes, and more effective prevention strategies.…”

Section: Introductionmentioning

confidence: 99%

Genetic testing for the risk of developing late effects among survivors of childhood cancer: Consumer understanding, acceptance, and willingness to pay

Georgiou

Wakefield

McGill

et al. 2016

Cancer

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BACKGROUND Genetic testing to determine cancer survivors' risk of developing late effects from their cancer treatment will be increasingly used in survivorship care. This 2‐stage study with 64 survivors of childhood cancer and their parents investigated the preferences and acceptability of testing among those who may be at risk of developing late effects. METHODS The first stage (Stage 1) identified the most commonly perceived benefits and concerns regarding genetic testing for the risk of late effects among 24 participants. In Stage 2, during interviews, 20 survivors (55% of whom were female; mean age, 26.0 years [range, 18‐39 years]; standard deviation [SD], 0.80) and 20 parents (55% of whom were male; mean age of child survivor, 14.2 years [range, 10‐19 years]; SD, 0.79) rated the 7 most common benefits and concerns from those identified in Stage 1. Interviews were transcribed verbatim and analyzed. Decisional balance ratios were calculated by dividing the participants' average concerns scores with the average benefits scores. RESULTS Genetic testing for late effects was highly acceptable: 95% of participants leaned toward testing, and the majority (65.9%) would pay up to Australian $5000. The majority (97.2%) reported it was acceptable to wait for up to 6 months to receive results, and to be offered testing immediately after treatment or when the survivor reached adulthood (62.9%). Survivors and parents had a highly positive decisional balance (Mean (M), 0.5 [SD, 0.38] and M, 0.5 [SD, 0.39], respectively), indicating that perceived benefits outweighed concerns. CONCLUSIONS Although to our knowledge clinical efficacy has yet to be clearly demonstrated, survivors and parents described positive interest in genetic testing for the risk of developing late effects. Perceived benefits outweighed harms, and the majority of participants would be willing to pay, and wait, for testing. Cancer 2016. © 2016 American Cancer Society. Cancer 2016;122:2876–2885. © 2016 American Cancer Society

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“…A few studies, mostly in the field of colorectal cancer, [33][34][35] focused on reducing multiple cancer risk factors, including smoking. The latest technical developments in the field of genomic testing suggest that genomic test procedures will have to include the provision of multiple-risk information 36 and that the issue of consultees' subsequent behavior is certainly a highly challenging one. 37 Three of the main limitations of this study need to be discussed.…”

Section: Original Research Articlementioning

confidence: 99%

Cigarette smoking in women after BRCA1/2 genetic test disclosure: a 5-year follow-up study of the GENEPSO PS cohort

Julian‐Reynier

Resseguier

Bouhnik

et al. 2015

Genetics in Medicine

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Original research article introductionThe benefits of giving up smoking have been constantly stressed, especially in the case of women, among whom smoking rates have been increasing.1 Two-thirds of all deaths of women smokers in the United Kingdom are caused by smoking in their 50s, 60s, and 70s, 1 and the figures are likely to be similar in other industrialized countries.2 Breast cancer was recently included among the 30 most common specific causes of death among smokers, 1 and it is emerging that smoking before first childbirth may also be one of the specific risk factors involved.3 Breast cancer is by far the most frequent form of cancer occurring among women-it accounts for 23% of all cases of cancer in womenand ranks second overall (10.9% of all cases of cancer in both sexes combined).2 In female BRCA1/2 carriers, smoking may increase the risk of breast cancer, especially when the mutations are located in specific sites. [4][5][6] Several authors have studied the effects of the disclosure of BRCA1/2 genetic test results on specific strategies for preventing breast/ovarian cancer, such as breast cancer screening and prophylactic surgery. 7-9 Although women's screening practices have been found to correlate with their families' history of breast cancer, the lifestyle risk factors seem to be similar to those of women with no family history of cancer.10,11 Little information is available about the lifestyle habits of BRCA1/2 carriers after the disclosure of genetic test results. Preliminary findings have shown that women applying for genetic testing may have better health-related practices than members of the general population. 12The aim of this prospective study was to measure the smoking habits of cancer-free women who applied for genetic testing because a BRCA1/2 mutation had been identified in their family and to identify the potential determinants of any changes in their smoking rates over time, such as their medical, genetic, sociodemographic, and psychological characteristics. To our knowledge, no previous studies have focused on this issue. MAtEriALS And MEtHodS Study population and study sampleIn the framework of the ongoing French national Gene Etude Prospective Sein Ovaire (GENEPSO) project, managed by the French Cancer Genetic Network, cancer-free BRCA1/2 mutation carriers were recruited in a routine consultation context at Purpose: This study aimed to measure patients' smoking patterns for 5 years after BRCA1/2 test result disclosure. Methods:A national cohort consisting of 621 French cancer-free women from families with BRCA1/2 mutations (mean age (SD): 40.5 years (11.5 years)) were included from December 1999 to January 2006, before disclosure of genetic test results, and followed for 5 years. They completed self-administered questionnaires about their cigarette smoking behaviors before receiving their test results (baseline) and 6, 12, 24, and 60 months after disclosure. Multivariate statistical analyses of the changes in participants' smoking behaviors were performed using a zero-inflated Pois...

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Behavioral and psychosocial responses to genomic testing for colorectal cancer risk

Cited by 33 publications

References 38 publications

Communication of genetic test results to family and health-care providers following disclosure of research results

Communication of genetic test results to family and health-care providers following disclosure of research results

Genetic testing for the risk of developing late effects among survivors of childhood cancer: Consumer understanding, acceptance, and willingness to pay

Cigarette smoking in women after BRCA1/2 genetic test disclosure: a 5-year follow-up study of the GENEPSO PS cohort

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