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Psychosocial issues related to sexual functioning among African-American prostate cancer survivors and their spouses
Rivers, Brian M; August, Euna M; Gwede, Clement K; Hart, Alton Jr; Donovan, Kristine A; Pow-Sang, Julio M; Quinn, Gwendolyn P
OBJECTIVE: Focus on cancer survivorship and quality of life (QOL) is a growing priority. The aim of this study was to identify and describe the most salient psychosocial concerns related to sexual functioning among African-American (AA) prostate cancer survivors and their spouses. METHODS: Twelve AA prostate cancer survivors and their spouses participated in semi-structured individual interviews. The interviews assessed couples' experiences with psychosocial adjustment and sexual functioning posttreatment for localized prostate cancer. The data were analyzed using the constant comparison method and content analysis. RESULTS: In this qualitative study of couples surviving prostate cancer, there were divergent views between the male prostate cancer survivors and their female partners, particularly regarding sexual functioning. For the males, QOL issues emerged as the primary area of concern, whereas survival of their husbands was considered most important among the female spouses. The male respondents expressed unease with the sexual side effects of their cancer treatment, such as erectile dysfunction and decreased sexual desire and satisfaction. Female spouses recognized decreased sexual desire in their partners following treatment, but this was not considered a primary concern. CONCLUSIONS: Patients and their spouses may have differing perceptions regarding QOL and the impact of sexual functioning on survivorship. This study points to the need for further research and intervention development to address these domains with a goal to improve QOL.
PMCID:4509592
PMID: 20187071
ISSN: 1099-1611
CID: 2588162
State laws and regulations addressing third-party reimbursement for infertility treatment: implications for cancer survivors
Quinn, Gwendolyn P; Vadaparampil, Susan T; McGowan Lowrey, Kerri; Eidson, Shelby; Knapp, Caprice; Bukulmez, Orhan
OBJECTIVE: To examine codified state policies related to infertility and assess their implications for cancer patients. Lack of insurance is often identified as a barrier to use of fertility preservation (FP) services. DESIGN: None. SETTING: A keyword search was developed to identify statutes and administrative regulations of insurance coverage for FP in the United States. PATIENT(S): N/A. INTERVENTION(S): N/A. MAIN OUTCOME MEASURE(S): Laws addressing the general population but pertaining to FP were compiled using Lexis-Nexis. Data were analyzed by reviewing the "plain meaning" of the text, legislative/administrative history, and annotated case law. Legal reasoning and common rules of statutory construction and legislative interpretation were used. RESULT(S): Fifteen states (29.4%) had laws relating to insurance coverage for infertility or in vitro fertilization (IVF) procedures and two states (CA and IL) specifically excluded IVF from a mandatory offer of coverage. No state laws or regulations addressed insurance coverage for FP methods specific to cancer patients. CONCLUSION(S): There is an argument for policies that require coverage for FP for cancer survivors before treatment.
PMID: 20576264
ISSN: 1556-5653
CID: 2588132
Lung cancer patients' decisions about clinical trials and the theory of planned behavior
Quinn, Gwendolyn P; Pratt, Christie L; Bryant-George, Kathy; Caraway, Vicki D; Paternoster, Bonnie; Roldan, Tere; Shaffer, Andrea; Shimizu, Cynthia O; Vaughn, Elizabeth J; Williams, Charles; Bepler, Gerold
The theory of planned behavior explores the relationship between behavior, beliefs, attitudes, and intentions presupposing that behavioral intention is influenced by a person's attitude about the behavior and beliefs about whether individuals, who are important to them, approve or disapprove of the behavior (subjective norm). An added dimension to the theory is the idea of perceived behavioral control, or the belief that one has control over performing the behavior. The theory of planned behavior suggests that people may make greater efforts to perform a behavior if they feel they have a high level of control over it. In this examination of data, we explored the application of the theory of planned behavior to patient's decisions about participating in a clinic trial. Twelve respondents in this study had previously participated in a clinical trial for lung cancer and nine respondents had declined a clinical trial for lung cancer. The data were analyzed with regard to the four constructs associated with the theory of planned behavior: behavioral intention, attitude, subjective norm, and perceived behavioral control. Results indicate that the theory of planned behavior may be a useful tool to examine psychosocial needs in relation to behavioral intention of clinical trial participation.
PMCID:4504015
PMID: 20949381
ISSN: 1543-0154
CID: 2588072
Translation and adaptation of smoking relapse-prevention materials for pregnant and postpartum Hispanic women
Simmons, Vani Nath; Cruz, Ligia M; Brandon, Thomas H; Quinn, Gwendolyn P
Quitting smoking is one of the most important behavior changes a pregnant woman can make, with health benefits extending beyond pregnancy for the woman and her child. Increasing numbers of pregnant women are quitting smoking; however, the majority resume smoking later in their pregnancy or shortly after giving birth. Previous research has demonstrated the efficacy of self-help smoking relapse-prevention booklets; however, there is a dearth of materials available in Spanish for Hispanic smokers. The goal of the present study was to translate and adapt existing, theoretically based, smoking relapse-prevention materials for pregnant and postpartum Hispanic women. This article describes the transcreation approach used to ensure the Forever Free for Baby and Me booklets were linguistically and culturally relevant for the heterogeneous populations of Hispanic women. The authors conducted multistage formative research to adapt the booklets and modify vignettes and graphics. Compared with previous research conducted with pregnant non-Hispanic women, results revealed the following: (a) a lack of association or concern about smoking and weight gain, (b) the importance of family approval of behavior, and (c) stress related to difficulties surrounding the immigration experience. The authors' qualitative findings confirm and extend past research that has suggested ways to enhance the cultural relevance and acceptability of a health intervention.
PMID: 21120739
ISSN: 1087-0415
CID: 2588052
Satisfaction with physician recommendation for and information about genetic counseling among breast cancer patients
Vadaparampil, Susan T; Quinn, Gwendolyn P; Lee, Ji-Hyun; Malo, Teri; Zhao, Xiuhua; Miree, Cheryl; Brzosowicz, Jennifer
To evaluate satisfaction with (a) the timing and strength of provider recommendation for and (b) information received prior to and during genetic counseling (GC) among breast cancer patients who attended GC before definitive surgery (BDS) or after definitive surgery (ADS). Satisfaction with provider recommendation for and information received about GC was evaluated among breast cancer patients who attended GC as part of their clinical care (n=51). There were no significant differences among breast cancer patients who attended GC BDS or ADS in satisfaction with when the physician referred them for GC, the strength of recommendation for GC, the amount of information provided about the GC, and the information received in GC. From a clinical perspective, the optimal time for attending GC may be BDS. Nevertheless, breast cancer patients appear satisfied with physician recommendation of and information related to GC, regardless of when they attend.
PMCID:4603559
PMID: 21129092
ISSN: 1524-4741
CID: 2588042
Development of a brochure for increasing awareness of inherited breast cancer in black women
Vadaparampil, Susan T; Quinn, Gwendolyn P; Gjyshi, Anxhela; Pal, Tuya
Low levels of awareness about hereditary breast cancer and ovarian cancer and underutilization of genetic services combined with the high incidence of early onset breast cancer in the black community underscore the urgent need to provide information about hereditary breast and ovarian cancer to black women. The primary goal of the present study was to develop a culturally targeted brochure designed to increase awareness about inherited breast cancer among black women using the principles of Learner Verification. Three focus groups were conducted with black women, including those with or without a history of breast cancer (n = 46), to evaluate the brochure. Data were analyzed through hand coding using a simple classification system placing participants' responses in the predetermined Learner Verification categories. On the basis of the feedback obtained, the brochure has been modified to improve cultural-targeting, relevance, and clarity and has been made available for dissemination. Our study illustrates the importance of obtaining feedback from the target audience when developing a culturally targeted informational brochure for black women. Further, the complexity of our subject matter (i.e., inherited breast and ovarian cancer) underscores the importance of using inviting visuals and personal vignettes, while maintaining a simple and clear message.
PMCID:4590212
PMID: 21275654
ISSN: 1945-0257
CID: 2588032
Assessing the Reproductive Concerns of Children and Adolescents with Cancer: Challenges and Potential Solutions
Knapp, Caprice A; Quinn, Gwendolyn P; Murphy, Devin
Infertility is often an expected side effect of cancer treatment, although the idea of fertility and sterility may be difficult for the child or adolescent patient to comprehend. Several established fertility preservation options exist for males and females, such as cryopreservation of sperm or embryos. Experimental therapies, which require institutional review board approval, are also being tested. While the science of fertility preservation for adolescents with cancer is advancing, the social science research in this area is lacking. Specifically, there are only a small number of studies about the psychological reproductive concerns in the pediatric oncology population. These studies have provided groundbreaking information for future research, but also illustrate the challenges in conducting research in this area. This article comments on those challenges and, when possible, presents solutions for confronting them.
PMCID:3621347
PMID: 23610730
ISSN: 2156-535x
CID: 2588022
Initial efforts in community engagement with health care providers: perceptions of barriers to care for cancer patients in Puerto Rico
Simmons, Vani N; Jimenez, Julio C; Castro, Eida; Litvin, Erika B; Gwede, Clement K; Vadaparampil, Susan T; Mclntyre, Jessica; Meade, Cathy D; Brandon, Thomas H; Quinn, Gwendolyn P
OBJECTIVE: Cancer health disparities are evident among Puerto Rican Hispanics, both for those on the island and in the mainland United States. Less is known about cancer care services available on the island. Through the Ponce School of Medicine and Moffitt Cancer Center partnership, focus groups with health care providers (HCP) were conducted to explore needs and barriers related to cancer care services with an ultimate goal of developing a cancer control and prevention program for the southern area of Puerto Rico. METHODS: To engage the community in outreach efforts to identify barriers to cancer care in Ponce, Puerto Rico, we conducted two focus groups with HCPs from a variety of settings, including general hospitals, private clinics, pharmacies, and government agencies. These 90-minute focus groups were conducted in Spanish and moderated using a semi-structured interview guide that explored the needs and barriers related to cancer control and prevention services. RESULTS: We analyzed content using the emergent material for identifying patterns, themes, and perceptions. Our qualitative analysis indicated that providers had significant concerns about unmet patient needs and system factors, which served as barriers to quality cancer care delivery. Key barriers included unmet practical needs, such as transportation, treatment affordability, lack of resources, and unmet needs for social support and education services. CONCLUSION: Future research will examine other key informants' (e.g., patients, caregivers) perspectives and identify which issues can be addressed by the partnership grant and which must be addressed by policymakers.
PMCID:3685431
PMID: 21449495
ISSN: 0738-0658
CID: 2588012
Enhancing oncology health care provider's sensitivity to cultural communication to reduce cancer disparities: a pilot study
Quinn, Gwendolyn P; Jimenez, Julio; Meade, Cathy D; Munoz-Antonia, Teresita; Gwede, Clement K; Castro, Eida; Vadaparampil, Susan T; Simmons, Vani Nath; McIntyre, Jessica; Crocker, Theresa T; Brandon, Thomas H
Under the auspices of a partnership grant to reduce cancer health disparities, Moffitt Cancer Center (MCC) partnered with the Ponce School of Medicine to identify the perceived cultural communication needs of MCC healthcare providers regarding Hispanic patients with limited or no English skills. Oncologists (N = 72) at MCC were surveyed to identify the specific areas of cultural communication techniques for which they desired to receive additional training. The majority of participants (66%) endorsed an interest in obtaining training to communicate difficult issues (terminal illness, controversial diagnosis) in a manner respectful to Hispanic culture. A workshop was conducted with providers (N = 55) to improve cultural communication between Hispanic patients and families focusing on culture, terminal illness, and communication strategies. Findings from a pre-post test indicate an overall positive response to the workshop. Results from this study can help inform future efforts to enhance cultural competency among health providers.
PMCID:3673723
PMID: 21479572
ISSN: 1543-0154
CID: 2588002
Health-Related Quality of Life of Young Adult Survivors of Childhood Cancer: A Review of Qualitative Studies
Nightingale, Chandylen L; Quinn, Gwendolyn P; Shenkman, Elizabeth A; Curbow, Barbara A; Zebrack, Bradley J; Krull, Kevin R; Huang, I-Chan
Purpose: The occurrence of late effects, combined with traditional growth and developmental issues, can significantly affect the health-related quality of life (HRQOL) of young adult survivors of childhood cancer (YASCC). Limited HRQOL measurement tools have been developed or validated for YASCC. The purpose of this study was to identify the domains of HRQOL that are unique to YASCC by conducting a systematic review of qualitative studies. Specifically, we compared the findings to the classical framework of HRQOL that was developed for survivors of adult-onset cancer and identified specific domains not being assessed in existing HRQOL instruments for YASCC. Methods: We searched qualitative studies published in peer-reviewed journals from 2000 to 2010 in the PsychINFO, PubMed, and EBSCOhost databases. A set of keywords and inclusion/exclusion criteria were utilized to identify eligible studies with a focus on survivorship and HRQOL issues of YASCC. Results: Sixteen studies met the inclusion/exclusion criteria and were investigated in this study. Six important domains of HRQOL were identified (physical, social, psychological, spiritual, fertility/sexual, resilience, and body appearance) with several sub-domains. Conclusion: Use of the classical HRQOL framework and existing instruments is not comprehensive enough for YASCC. Adding unique domains to the classical framework and existing instruments will make them valuable tools for measuring the HRQOL of YASCC and increase health professionals' ability to identify if and when psychosocial services are needed for this unique population.
PMCID:3621306
PMID: 23610733
ISSN: 2156-535x
CID: 2587972