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Development of educational materials about inherited breast cancer in black women [Meeting Abstract]

Pal, T; Gjyshi, A; Rivers, D; Rocchio, E; Garcia, A; Quinn, GP; Vadaparampil, S
ISI:000276606602131
ISSN: 0732-183x
CID: 2589012

Oncology Social Workers' Perceptions of Barriers to Discussing Fertility Preservation With Cancer Patients Editorial Comment [Editorial]

King, L; Quinn, GP; Vadaparampil, ST; Miree, CA; Wilson, C; Clayton, H; Zebrack, B
ISI:000268899300110
ISSN: 0022-5347
CID: 2589002

Responses to flooding and drying in seedlings of a common Australian desert floodplain shrub: Muehlenbeckia florulenta Meisn. (tangled lignum)

Capon, SJ; James, CS; Williams, L; Quinn, GP
We investigated the effects of flooding and drying over 6 months on growth and biomass allocation in seedlings of Muehlenbeckia florulenta Meisn. (tangled lignum), a common and widely distributed shrub of Australia's desert floodplains. We sought to determine if lignum seedlings respond to flooding or drying by altering traits or allocation patterns or instead display fixed patterns of development. Since desert floodplains are highly unpredictable and heterogeneous environments, we hypothesised that adaptive phenotypic plasticity is unlikely to have developed or be advantageous in seedlings of this species as environmental state changes are highly variable in their timing and duration and plants risk being caught out of kilter with environmental conditions. To test this, we conducted a glasshouse experiment in which lignum seedlings. grown in both clay and sandy sediments, were subjected to a range of hydrological conditions over a period of 6 months. Lignum seedlings exhibited considerable tolerance of both flooding and drying in our experiment and no mortality was observed. Growth was significantly reduced by flooding, however, and seedlings displayed extremely delayed development rather than plasticity in overall biomass allocation or any of the specific morphological variables we measured. Lignum seedlings were considerably more tolerant of drying than flooding and responded plastically by reducing leaf area ratios through reductions in specific leaf areas and leaf production and expansion. Sediment type had little effect on seedling development. Our results indicate that surface water hydrology is likely to be a major determinant of recruitment patterns in this ecologically significant species. (c) 2009 Elsevier B.V. All rights reserved.
ISI:000267622800005
ISSN: 0098-8472
CID: 2588992

Attitudes of high-risk women toward preimplantation genetic diagnosis

Quinn, Gwendolyn; Vadaparampil, Susan; Wilson, Crystal; King, Lindsey; Choi, Jimin; Miree, Cheryl; Friedman, Sue
OBJECTIVE: To explore the knowledge and attitudes toward preimplantation genetic diagnosis (PGD) of women who have been personally affected by hereditary breast and ovarian cancer. DESIGN: A 33-item quantitative survey covering five domains, including demographics, knowledge and attitudes about PGD, usage of PGD, and informational needs. SETTING: Attendees of a national conference for individuals and families affected by hereditary breast and ovarian cancer participated in the survey. PATIENT(S): Not applicable. INTERVENTION(S): Not applicable. MAIN OUTCOME MEASURE(S): Frequencies and proportions were summarized for all variables, and Fisher's exact tests were conducted to test association between two discrete variables. RESULT(S): Of the women surveyed, only 32% had ever heard of PGD before taking the survey. None of the women surveyed had actually used PGD, and 44% believed they would not use it in the future. However, 57% of attendees believed that PGD was an acceptable option for high-risk individuals, and 74% believed that high-risk individuals should be given information about PGD. CONCLUSION(S): Health care professionals who serve cancer patients should consider incorporating information about PGD into patient education. Further research is needed to survey physicians and genetic counselors about their knowledge and opinions of PGD.
PMID: 18440521
ISSN: 1556-5653
CID: 2588832

Evaluation of educational materials from a social marketing campaign to promote folic acid use among Hispanic women: insight from Cuban and Puerto Rican ethnic subgroups

Quinn, Gwendolyn P; Thomas, Kamilah B; Hauser, Kimberlea; Rodriguez, Nydia Y; Rodriguez-Snapp, Nazach
Current data indicate significant disparities in awareness and use of folic acid between Hispanic and non-Hispanic women. Hispanic women are less likely to have heard about folic acid, to know that folic acid can prevent birth defects, to take folic acid daily, and to take folic acid before pregnancy. "Three Sisters/Las Tres Hermanos" is a folic acid social marketing campaign designed for Mexican-American women. To determine the effectiveness of the materials on other Hispanic sub groups, women of childbearing age from Cuba and Puerto Rico were recruited to evaluate the materials. Participants were asked five pre-test questions about folic acid knowledge and were then provided with the folic acid educational materials that included either a photo-novella and a low literacy brochure, or a video-novella in English or Spanish. Once the participants reviewed the materials, they were asked 10 post-test questions about the materials. The results of the evaluation are discussed.
PMID: 18561023
ISSN: 1557-1920
CID: 2588342

Fertility preservation and adolescent/young adult cancer patients: physician communication challenges

Quinn, Gwendolyn P; Vadaparampil, Susan T
PURPOSE: The doctor-parent-adolescent triad is a unique communication challenge, particularly in the area of fertility preservation for adolescents with cancer. This paper provides a preliminary exploration into the barriers experienced by physicians in discussing cancer related fertility issues with patients aged 12-18. METHODS: This study used a subset of the data from qualitative interviews with pediatric oncologists. RESULTS: The majority of physicians agreed that fertility preservation conversations were awkward because of limited options and resources for the technology as well as the existence of a fine line between establishing a sense of trust between doctor and patient, while not excluding parents. CONCLUSIONS: Healthcare providers need training on how and when to broach fertility issues with patients, emphasizing open communication and early disclosure.
PMID: 19306799
ISSN: 1879-1972
CID: 2588282

Recall of and reactions to a surgeon referral letter for BRCA genetic counseling among high-risk breast cancer patients

Vadaparampil, Susan T; Quinn, Gwendolyn P; Miree, Cheryl A; Brzosowicz, Jennifer; Carter, Bradford; Laronga, Christine
BACKGROUND: The oncology care setting represents an important opportunity to identify and refer women at increased risk for hereditary breast and ovarian cancer. However, little is known about the effectiveness of provider approaches to inform patients of hereditary cancer risk or patient uptake of genetic counseling (GC). This qualitative study examined the impact of a surgeon referral letter on recently diagnosed breast cancer patients' uptake of BRCA GC. METHODS: Qualitative open-ended, in-depth interviews were conducted with 26 high-risk breast cancer patients sent a referral letter for BRCA GC by their surgeon. Data were analyzed by a grounded theory approach. RESULTS: Most women (approximately 80%) recalled receiving the letter, and 62% of all (n = 16) women pursued GC. Recall of the letter did not seem to be associated with uptake of GC (P = .49, Fisher's exact test). The results highlight key areas for improvement that may help increase the impact of the letter. Half of the women in this sample believed that the letter was sent to all breast cancer patients, rather than those with specific risk factors. Few women mentioned any implications for the information obtained during GC or testing regarding their current breast cancer diagnosis or treatment. Of the women who did not attend, many perceived that dealing with the GC and testing process in the midst of a cancer diagnosis and treatment was overwhelming. Among the women who had chosen not to attend GC, most stated they would reconsider after completing their treatment. CONCLUSIONS: Patient recall of a surgeon referral letter does not seem to increase the number of high-risk women who attend GC after a breast cancer diagnosis. The letter approach in its current format does not seem to be a wholly effective means of communicating with some patients who may be overwhelmed by their cancer diagnosis or unaware that GC and testing may have implications for their current treatment decisions, possibly resulting in a missed opportunity to engage in informed decision making.
PMID: 19408048
ISSN: 1534-4681
CID: 2588272

High risk community--men's perceptions of black infant mortality: a qualitative inquiry

Quinn, Gwendolyn P; August, Euna M; Austin, Deborah; Keefe, Candace; Bernadotte, Christina; Scarborough, Kenneth; Jeffers, Delores
Infant mortality has been identified as a key public health concern in the United States. Although infant mortality rates (IMRs) in the United States have declined during the past 10 years, the rates among Blacks are more than two times higher as compared with other racial and ethnic groups. This study used focus groups to explore Black men's awareness and perceptions of the rising IMR in their community. Twenty-five men participated in an initial and follow-up focus group, which revealed that men had limited awareness of infant mortality, reduced sense of personal responsibility for pregnancy outcomes, and perceptions that stress, the age of the mother, and the health care system were responsible for poor birth outcomes. The role of the community and possible interventions to involve and educate men were also explored.
PMID: 19477746
ISSN: 1557-9891
CID: 2588262

Conflict between values and technology: perceptions of preimplantation genetic diagnosis among women at increased risk for hereditary breast and ovarian cancer

Quinn, Gwendolyn P; Vadaparampil, Susan T; King, Lindsey M; Miree, Cheryl A; Friedman, Sue
Members of families affected by hereditary cancer are often concerned about passing on risk to offspring. Preimplantation genetic diagnosis is a procedure performed to identify embryos that inherit mutations placing them at risk for hereditary conditions. Little is known about attitudes toward the use of this technology among individuals at risk for hereditary breast and ovarian cancer. We sought to determine high risk women's attitudes. This study is a qualitative examination of comments from women who participated in an online survey regarding knowledge and attitudes of preimplantation genetic diagnosis among individuals affected by hereditary breast and ovarian cancer. More than half the respondents held less favorable attitudes about the use of preimplantation genetic diagnosis for hereditary breast and ovarian cancer for both themselves and others. However, among the women who felt favorable about its usage, the majority said it became a new option for them to pursue parenthood whereas previously they had opted to not have a biological child. The high percentage of respondents who have never heard of preimplantation genetic diagnosis and who were in favor of this technology for hereditary breast and ovarian cancer indicates the need for educational campaigns to increase awareness and provide information about the procedure, access and affordability. Further research is needed to determine how this population would like this information presented to them and how best to instruct health care professionals to present this topic to women who do not know to ask about it.
PMID: 19554475
ISSN: 1573-7292
CID: 2588252

Factors associated with preimplantation genetic diagnosis acceptance among women concerned about hereditary breast and ovarian cancer

Vadaparampil, Susan T; Quinn, Gwendolyn P; Knapp, Caprice; Malo, Teri L; Friedman, Susan
PURPOSE: To assess sociodemographic, clinical, awareness, and attitudinal factors associated with acceptance of preimplantation genetic diagnosis among women concerned about hereditary breast and ovarian cancer. METHODS: Participants (n = 962) were members of a national advocacy organization dedicated to empowering women at high risk for developing breast or ovarian cancer. Participants completed a web-based survey assessing factors associated with preimplantation genetic diagnosis acceptance. Factors significantly associated with acceptance in the bivariate analyses were used to build a logistic regression model. RESULTS: Among the 962 respondents, 318 (33.1%) selected the option that they would consider preimplantation genetic diagnosis, 367 (38.2%) would not consider preimplantation genetic diagnosis, and 277 (28.8%) selected "don't know." Significant predictors of preimplantation genetic diagnosis acceptance were the desire to have more children, having had a prenatal genetic test, preimplantation genetic diagnosis awareness, belief that preimplantation genetic diagnosis is acceptable for individuals at risk for hereditary breast and ovarian cancer, belief that preimplantation genetic diagnosis information should be given to individuals at risk for hereditary breast and ovarian cancer, concerns about preimplantation genetic diagnosis, perceived benefits of preimplantation genetic diagnosis, and how preimplantation genetic diagnosis is considered. CONCLUSION: Women at increased risk for hereditary cancer may consider preimplantation genetic diagnosis as part of their reproductive decision making. Therefore, it is important to understand existing levels of awareness and attitudes toward this technology to provide optimal counseling and support.
PMID: 19710615
ISSN: 1530-0366
CID: 2588242