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Altruism in terminal cancer patients and rapid tissue donation program: does the theory apply?

Quinn, Gwendolyn P; Murphy, Devin; Pratt, Christie; Munoz-Antonia, Teresita; Guerra, Lucy; Schabath, Matthew B; Leon, Marino E; Haura, Eric
Rapid tissue donation (RTD) is an advancing oncology research procedure for collecting tumors, metastases, and unaffected tissue 2-6 h after death. Researchers can better determine rates of progression, response to treatment, and polymorphic differences among patients. Cancer patients may inquire about posthumous body donation for research to offer a personal contribution to research; however, there are barriers to recruiting for an RTD program. Physicians must reassure the patient that their treatment options and quality of care will not be compromised due to participating in RTD. In this commentary we discuss how theories of altruism may explain cancer patients' desire to participate in an RTD program, the ethical concerns of health care professionals and patients and the use of altruism as a recruitment strategy. We offer recommendations for examining the cultural and ethical climate of the institution prior to initiating such a program such as examining the relationship of healthcare professionals and patients, identifying ethical concerns, and examining ways to promote acceptance and buy-in across professionals, patients, and families.
PMCID:3735793
PMID: 23539332
ISSN: 1572-8633
CID: 2587572

Physician perceptions and practice patterns regarding fertility preservation in hematopoietic cell transplant recipients

Loren, A W; Brazauskas, R; Chow, E J; Gilleece, M; Halter, J; Jacobsohn, D A; Joshi, S; Pidala, J; Quinn, G P; Wang, Z; Apperley, J F; Burns, L J; Hale, G A; Hayes-Lattin, B M; Kamble, R; Lazarus, H; McCarthy, P L; Reddy, V; Warwick, A B; Bolwell, B J; Duncan, C; Socie, G; Sorror, M L; Wingard, J R; Majhail, N S
Physician practice variation may be a barrier to informing hematopoietic cell transplant (HCT) recipients about fertility preservation (FP) options. We surveyed HCT physicians in the United States to evaluate FP knowledge, practices, perceptions and barriers. Of the 1035 physicians invited, 185 completed a 29-item web-survey. Most respondents demonstrated knowledge of FP issues and discussed and felt comfortable discussing FP. However, only 55% referred patients to an infertility specialist. Most did not provide educational materials to patients and only 35% felt that available materials were relevant for HCT. Notable barriers to discussing FP included perception that patients were too ill to delay transplant (63%), patients were already infertile from prior therapy (92%) and time constraints (41%). Pediatric HCT physicians and physicians with access to an infertility specialist were more likely to discuss FP and to discuss FP even when prognosis was poor. On analyses that considered physician demographics, knowledge and perceptions as predictors of referral for FP, access to an infertility specialist and belief that patients were interested in FP were observed to be significant. We highlight variation in HCT physician perceptions and practices regarding FP. Physicians are generally interested in discussing fertility issues with their patients but lack educational materials.
PMCID:3914209
PMID: 23419436
ISSN: 1476-5365
CID: 2587602

More research, more responsibility: the expansion of duty to warn in cancer patients considering fertility preservation

Quinn, Gwendolyn P; Vadaparampil, Susan T
Reproductive technology is advancing at a steadfast pace. Researchers are successfully refining options for fertility preservation, to the benefit of the cancer community. Research has consistently shown cancer patients and survivors desire to have risks to fertility and preservation options disclosed, and major campaigns have been undertaken to refer these patients to fertility specialists. However, the decision to pursue fertility preservation is not an isolated judgment. A variety of future decisions may arise for the individual or couple, choices that may not have been relayed during the initial decision-making process. Future decisions include the length of time to continue to store frozen gametes, donating banked gametes to infertile couples, and whether embryos created with one partner would be accepted by a new partner. It is important to continue the advancement of fertility preservation not only in the scientific milieu, but also in addressing a patient's preparedness for long-term decision making.
PMID: 23439324
ISSN: 1097-6868
CID: 2587592

Qualitative responses to a national physician survey on HPV vaccination

Vadaparampil, Susan T; Murphy, Devin; Rodriguez, Maria; Malo, Teri L; Quinn, Gwendolyn P
BACKGROUND: Independently offered comments on a physician survey may reveal new insight into physician recommendations for human papillomavirus (HPV) vaccination to their patients. The current study is a follow-up to a previous report of free-response comments and describes remarks from the second of two surveys regarding physicians' HPV vaccine recommendation practices. A secondary objective was to investigate comments specific to male HPV vaccination, which was FDA approved after the first survey was completed. METHODS: In 2011, a mailed survey assessing physicians' HPV-related knowledge, attitudes, and vaccination practices was conducted among a national sample of U.S. primary care physicians, including Family Physicians, Pediatricians, and Obstetricians/Gynecologists. Comments were analyzed using grounded theory and content analysis. FINDINGS: Of 928 completed surveys received, 134 participants provided comments, which were coded into four overall categories: 1) the survey process, 2) personal strategy for discussing HPV vaccine, 3) clinical practice guidelines preference, and 4) barriers to vaccine administration. Twenty-six comments were specific to males, with 17 physicians stating they did not recommend HPV vaccine to males. Physicians also cited the need for more information about HPV vaccine safety and efficacy for males. INTERPRETATION: Respondents used the open-ended portion of the survey to reemphasize issues that were most important to them and to offer insight about the vaccine and survey process. FUNDING: This study was funded by a grant from the National Institutes of Health (R01AI076440-01).
PMCID:3828557
PMID: 23499608
ISSN: 1873-2518
CID: 2587582

Why Healthcare Providers Should Focus on the Fertility of AYA Cancer Survivors: It's Not Too Late!

Murphy, Devin; Orgel, Etan; Termuhlen, Amanda; Shannon, Susan; Warren, Krista; Quinn, Gwendolyn P
Reproductive health among cancer survivors is an important quality of life issue. Certain cancer therapies have known fertility risks. There is an existing cohort of adolescents and young adults (AYA) cancer survivors that, seen less frequently in clinical care settings than active patients, are likely not having discussions of fertility and other reproductive health issues. A survivor or healthcare provider can easily assume that the window of opportunity for fertility preservation has passed, however emerging research has shown this may not be the case. Recent data demonstrates a close relationship between fertility and other late effects to conclude that ongoing assessment during survivorship is warranted. Some fertility preservation procedures have also been shown to mitigate common late effects. This review explores the link between late effects from treatment and common comorbidities from infertility, which may exacerbate these late effects. This review also highlights the relevance of fertility discussions in the AYA survivorship population.
PMCID:3791875
PMID: 24109589
ISSN: 2234-943x
CID: 2587452

Coping Styles of Female Adolescent Cancer Patients with Potential Fertility Loss

Quinn, Gwendolyn P; Murphy, Devin; Knapp, Caprice A; Christie, Juliette; Phares, Vicky; Wells, Kristen J
PURPOSE: The purpose of this qualitative study was to assess the coping styles of female adolescent cancer patients regarding potential loss of fertility. Expectations and desires for the future, coping styles in typical adolescence, and coping styles when faced with potential loss of fertility due to cancer treatment are discussed. METHODS: Female adolescents diagnosed with cancer aged 12-18 years at study (N=14) were administered a 10-item values clarification tool to pilot test the readability and relevance of the items on reproductive concerns, followed by a cognitive debriefing interview asking participants how they would respond to each item. These qualitative responses were assessed for coping style type using the constant comparative approach. RESULTS: All adolescent participants reported having a strong desire for biological children in the future. Reactions to questions regarding the loss of fertility fell into two categories of coping styles: emotion-focused coping or problem-focused (engagement) coping. Within emotion-focused coping, there were three distinct styles: externalizing attribution style, internalizing attribution style, and repressive adaptation. Problem-focused coping adolescents displayed optimism. CONCLUSION: Successful interventions aimed at promoting adaptive coping styles should seek to uncover adolescents' values about future parenthood and reproduction. Development of an age-appropriate assessment to stimulate dialogue regarding fertility and initiate an adolescent's cognitive processing of potential fertility loss is warranted.
PMCID:3684136
PMID: 23781403
ISSN: 2156-535x
CID: 2587522

Making it work: health care provider perspectives on strategies to increase colorectal cancer screening in federally qualified health centers

Gwede, Clement K; Davis, Stacy N; Quinn, Gwendolyn P; Koskan, Alexis M; Ealey, Jamila; Abdulla, Rania; Vadaparampil, Susan T; Elliott, Gloria; Lopez, Diana; Shibata, David; Roetzheim, Richard G; Meade, Cathy D
Colorectal cancer screening (CRCS) rates are low among men and women who seek health care at federally qualified health centers (FQHCs). This study explores health care providers' perspectives about their patient's motivators and impediments to CRCS and receptivity to preparatory education. A mixed methods design consisting of in-depth interviews, focus groups, and a short survey is used in this study. The participants of this study are 17 health care providers practicing in FQHCs in the Tampa Bay area. Test-specific patient impediments and motivations were identified including fear of abnormal findings, importance of offering less invasive fecal occult blood tests, and need for patient-centered test-specific educational materials in clinics. Opportunities to improve provider practices were identified including providers' reliance on patients' report of symptoms as a cue to recommend CRCS and overemphasis of clinic-based guaiac stool tests. This study adds to the literature on CRCS test-specific motivators and impediments. Providers offered unique approaches for motivating patients to follow through with recommended CRCS and were receptive to in-clinic patient education. Findings readily inform the design of educational materials and interventions to increase CRCS in FQHCs.
PMCID:3864594
PMID: 23943277
ISSN: 1543-0154
CID: 2587482

The bottleneck effect in lung cancer clinical trials

Gonzalez, Luis E; Sutton, Steven K; Pratt, Christie; Gilbertson, Matthew; Antonia, Scott; Quinn, Gwendolyn P
Clinical trials provide the most promising way to improve treatment outcomes in cancer. This study examined the rate at which eligible patients with lung cancer, at a National Cancer Institute-designated cancer center in the South, were offered a clinical trial and explored for reasons for ineligibility. We retrospectively reviewed 300 randomly selected lung cancer patients' medical records seen in 2010, to assess clinical trial offers to eligible patients, reasons for not offering an eligible patient a trial, demographic factors associated with eligibility, and reasons for refusal among those offered a trial. Of the 300 patient charts, seven were excluded for lack of confirmed lung cancer diagnosis. Forty-six of the remaining 293 (15.7%) patients were eligible for a clinical trial. Forty-five of the 46 (97.8%) were considered for a trial by their oncologist. Thirty-five of the 45 (77.8%) were offered a trial: 15 agreed (42.9% of those offered, 5.1% of patients reviewed), 11 declined, and 9 were undecided at the end of the review window. Patients with poor Eastern Cooperative Oncology Group (ECOG) performance status levels and small cell (SC) diagnoses were significantly less likely to be eligible for a trial. Results suggest that oncologists at the cancer center are effectively presenting all eligible patients with the option of a clinical trial; however, there is a need to increase the number of approved clinical trials for patients with SC or ECOG score greater than 2.
PMCID:4501775
PMID: 23733149
ISSN: 1543-0154
CID: 2587532

Improving awareness of cancer clinical trials among Hispanic patients and families: audience segmentation decisions for a media intervention

Quinn, Gwendolyn P; McIntyre, Jessica; Gonzalez, Luis E; Antonia, Teresita Munoz; Antolino, Prado; Wells, Kristen J
Clinical trials hold great promise for cancer treatment; yet, Hispanic cancer patients have low rates of clinical trial participation. Lack of awareness and knowledge of clinical trials and language barriers may account for low participation rates. Patient education through audiovisual materials can improve knowledge of and attitudes toward clinical trials among Hispanic populations. In this study, 36 Hispanic cancer patients/survivors and caregivers in Florida and Puerto Rico participated in focus groups to aid in developing a Spanish-language DVD and booklet intervention designed to increase knowledge about clinical trials. Focus group results showed (a) low levels of knowledge about clinical trials, (b) uncertainty about why a physician would expect a patient to make a choice about treatment, and (c) desire for family participation in decision making. Respondents expressed various preferences for aspects of the DVD such as showing extended family in the DVD and physician explanations about key terms. On the basis of these preferences, the authors developed a creative brief for a DVD. The content of the DVD was reviewed by Hispanic community leaders and key stakeholders. A final DVD was created, in Spanish, using Hispanic patients and physicians, which contained the information deemed important from the focus groups and stakeholder interviews. The DVD is complete with companion booklet and currently undergoing a randomized control trial.
PMCID:4818950
PMID: 23639101
ISSN: 1087-0415
CID: 2587542

A systematic review of the factors influencing African Americans' participation in cancer clinical trials

Rivers, Desiree; August, Euna M; Sehovic, Ivana; Lee Green, B; Quinn, Gwendolyn P
OBJECTIVE: This systematic review was conducted to synthesize the existing evidence regarding key considerations influencing African Americans' participation in cancer clinical trials (CCTs). METHODS: The PubMed and PsycINFO databases were searched to identify peer-reviewed publications during the last decade (2002-2011) that met our inclusionary criteria. Our search utilized Boolean combinations of the following terms: "clinical trial"; "cancer"; "neoplasm"; "African American"; "Black"; "caregiver"; "decision making"; "recruitment"; "companion"; "family"; "significant other"; and "social support". RESULTS: A total of 267 articles were identified in the database searches. Of these articles, a total of 31 were determined to meet the inclusion criteria and were retained for review. Key issues that emerged as impediments to a successful recruitment of African Americans to CCTs included negative attitudes towards clinical trials, low levels of knowledge and awareness regarding CCTs, religious beliefs, and structural barriers, such as transportation, childcare, and access to health care. Recommendations from physicians, family members, and friends may promote CCT participation. Multimedia, and culturally-appropriate recruitment approaches may also be effective in soliciting participation among African Americans. CONCLUSION: Existing research underscores the importance of social support from family and friends, cultural appropriateness and sensitivity from physicians and in the design of the CCT, and enhanced education among African Americans in decision-making processes. As African Americans are underrepresented in CCTs, targeted strategies to enhance recruitment efforts and improve cancer treatment outcomes are essential.
PMID: 23557729
ISSN: 1559-2030
CID: 2587562