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Missed clinical opportunities: provider recommendations for HPV vaccination for 11-12 year old girls are limited

Vadaparampil, Susan T; Kahn, Jessica A; Salmon, Daniel; Lee, Ji-Hyun; Quinn, Gwendolyn P; Roetzheim, Richard; Bruder, Karen; Malo, Teri L; Proveaux, Tina; Zhao, Xiuhua; Halsey, Neal; Giuliano, Anna R
OBJECTIVE: The purpose of this study was to determine the prevalence of physician recommendation of human papillomavirus (HPV) vaccination in early (ages 11-12), middle (13-17), and late adolescent/young adult (18-26) female patients by physician specialty, and to identify factors associated with recommendation in early adolescents. METHODS: A 38-item survey was conducted April 2009 through August 2009 among a nationally representative random sample of 1538 Family Physicians, Pediatricians, and Obstetricians and Gynecologists obtained from the American Medical Association Physician Masterfile. A multivariable model was used to assess factors associated with frequency of physician recommendation of HPV vaccination ("always"=76-100% of the time vs. other=0-75%) within the past 12 months. RESULTS: Completed surveys were received from 1013 physicians, including 500 Family Physicians, 287 Pediatricians, and 226 Obstetricians and Gynecologists (response rate=67.8%). Across the specialties, 34.6% of physicians reported they "always" recommend the HPV vaccine to early adolescents, 52.7% to middle adolescents, and 50.2% to late adolescents/young adults. The likelihood of "always" recommending the HPV vaccine was highest among Pediatricians for all age groups (P<0.001). Physician specialty, age, ethnicity, reported barriers, and Vaccines for Children provider status were significantly associated with "always" recommending HPV vaccination for early adolescents. CONCLUSIONS: Findings suggest missed clinical opportunities for HPV vaccination, and perceived barriers to vaccination may drive decisions about recommendation. Results suggest the need for age and specialty targeted practice and policy level interventions to increase HPV vaccination among US females.
PMCID:3200426
PMID: 21924315
ISSN: 1873-2518
CID: 2587962

Who decides? Decision making and fertility preservation in teens with cancer: a review of the literature

Quinn, Gwendolyn P; Murphy, Devin; Knapp, Caprice; Stearsman, Daniel K; Bradley-Klug, Kathy L; Sawczyn, Kelly; Clayman, Marla L
PURPOSE: The knowledge that cancer treatment may impair fertility in pediatric populations is an emerging aspect of quality of life in this population. However, decision making and use of fertility preservation (FP) among adolescent cancer patients and their families has not been well studied. This review summarizes the available published data on aspects of decision making and FP in adolescent cancer patients. METHODS: An electronic search was performed to identify peer-reviewed studies published between 1999 and 2009 using key Medical Subject Heading terms and inclusion criteria. Inclusion criteria limited eligible studies to those that focused on adolescent decision making in cancer treatment or FP, fertility concerns in pediatric oncology, capacity for decision making, and health decision making in pediatrics. Studies that did not meet at least one of these criteria were excluded. RESULTS: A total of 29 articles were reviewed and summarized. Three categories of results were seen: a focus on adolescent decision making in oncology, decision making in chronic illness, and decision making in cancer-related infertility and preservation. CONCLUSION: Most of the studies showed that adolescents have a strong desire to participate in decisions related to their cancer treatment and many have concerns regarding their future fertility, although barriers often prevented these discussions. More research is needed to explore the role of teenagers and parents in decisions about fertility in relation to cancer treatment.
PMCID:3179606
PMID: 21939862
ISSN: 1879-1972
CID: 2587942

Perceptions of colorectal cancer among three ethnic subgroups of US blacks: a qualitative study

Gwede, Clement K; Jean-Francois, Emmanuel; Quinn, Gwendolyn P; Wilson, Shaenelle; Tarver, Will L; Thomas, Kamilah B; Vadaparampil, Susan T; Meade, Cathy D
Colorectal cancer (CRC) is currently associated with one of the highest burdens of morbidity and mortality among American men and women. Racial/ethnic disparities are well documented and the subject of intense research and intervention. Our understanding of disparities related to awareness and perceptions about causes, risk factors, and screening for CRC among subgroups of blacks in the United States is limited. This may be in part because grouping US-born blacks and foreign-born blacks as one homogeneous group obscures possible within-group differences. This study aimed to explore the cultural perceptions of CRC among 3 ethnic subgroups of blacks: African Americans (US born), foreign-born blacks from English-speaking Caribbean countries, and Haitian-born blacks. The study was informed by a community-based participatory research approach, using a cross-sectional mixed qualitative and quantitative methods design. A total of 62 individuals from the 3 ethnic subgroups participated in semistructured, in-depth qualitative and structured quantitative interviews. Qualitative findings revealed no stark differences among the 3 ethnic subgroups in their overall perceptions of cancer as well as their attitudes related to barriers, motivation, and resources for CRC screening. However, there were subtle differences in perceptions of curability, preventive practices, and preferred sources of information among the three ethnic subgroups of US blacks. The study has important implications for the design of educational materials and targeted interventions for diverse groups of US blacks.
PMCID:3999593
PMID: 22046844
ISSN: 0027-9684
CID: 2587932

Developing a referral system for fertility preservation among patients with newly diagnosed cancer

Quinn, Gwendolyn P; Vadaparampil, Susan T; Gwede, Clement K; Reinecke, Joyce D; Mason, Tina M; Silva, Celso
The goal of this project was to develop a referral system to increase the likelihood that patients of childbearing age with newly diagnosed cancer receive timely information about fertility, and reduce the burden oncologists may feel when discussing and exploring fertility preservation options with their patients. The group developed and examined the effectiveness of a fertility preservation referral system through pilot-testing a developed patient education brochure. During the 12-month pilot-testing period, 776 patients of childbearing age (< 40 years) were seen at H. Lee Moffitt Cancer Center and 349 brochures were taken. The reproductive endocrinologist/infertility clinic experienced a 9-fold increase in the number of calls received during the 12-month study period, with 122 calls received compared with 13 the prior year. The large increase in calls illuminates the gap in patient interest and referral, and shows an effective method to transmit this information. Improving the communication of time-sensitive information about fertility and preservation options to patients with cancer is associated with an increased likelihood of improving quality of life, reducing patient distress, and increasing use of ancillary fertility-related health services. Through referring and providing patient information, this referral system allows oncologists to fulfill their obligation and make informed decisions about fertility preservation, thereby improving the full cancer care continuum.
PMID: 22056654
ISSN: 1540-1413
CID: 2587922

Challenges in recruiting Mexican women for cancer genetics research

Quinn, Gwendolyn P; McIntyre, Jessica Q; Vadaparampil, Susan T
Hispanic women often have low participation rates in cancer genetics research. Additionally, Hispanic sub-ethnicities may have varying accrual rates based on unique cultural factors. Hispanic women were recruited through flyers placed in the Tampa Bay Community to participate in an interview about knowledge of hereditary breast and ovarian cancer. The study goal was to recruit 20 women from each Hispanic sub-ethnicity: Puerto Rican, Mexican, and Cuban. This article reports on the difficulty in recruiting Mexican women. One hundred forty-three women called the study hotline to inquire about participation. Seventy-six callers were ineligible for the study. Thirty-four percent (n = 26) of ineligibles were Mexican women; within this group, 62% (n = 16) were unable to participate because they did not know the cancer site of their first degree relative. Inclusion criteria requiring knowledge of family history of cancer for behavioral research may be too stringent. The socio-cultural norms of Mexican families may not include discussions of cancer specifics. This study demonstrates Mexican women may have limited knowledge about their family history of cancer. Considerations of these knowledge limitations should be built into cancer genetics-related research. Referral criteria to assess the risk of hereditary breast and ovarian cancer by cancer genetics professionals are predicated on the patient providing details about cancer within multiple generations of family members, thus, posing a barrier for Mexican women who may have limited knowledge of their family history of cancer.
PMCID:3186020
PMID: 22109723
ISSN: 1868-6001
CID: 2587892

A pilot study of knowledge and interest of genetic counseling and testing for hereditary breast and ovarian cancer syndrome among Puerto Rican women

Vadaparampil, Susan T; Quinn, Gwendolyn P; Dutil, Julie; Puig, Marieva; Malo, Teri L; McIntyre, Jessica; Perales, Rossybelle; August, Euna M; Closser, Zuheily
This study explored baseline levels of knowledge and attitude toward genetic testing (GT) for hereditary breast and ovarian cancer among Puerto Rican women. A secondary aim was to evaluate whether these factors differed between respondents in Puerto Rico and Tampa. Puerto Rican women with a personal or family history of breast or ovarian cancer who live in Puerto Rico (n = 25) and Tampa (n = 20) were interviewed. Both groups were interested in obtaining GT; women living in Puerto Rico were more likely to report they would get GT within 6 months (p = 0.005). The most commonly cited barrier was cost; the most commonly cited facilitator was provider recommendation. There was no difference in overall knowledge between Tampa (M = 5.15, SD = 1.63) and Puerto Rico (M = 5.00, SD = 1.87) participants (p = 0.78). Involving health care providers in recruitment and highlighting that GT may be available at minimal or no cost in the USA and Puerto Rico may facilitate participation.
PMCID:3215781
PMID: 22109874
ISSN: 1868-6001
CID: 2587882

Folic acid promotion for Hispanic women in Florida: A vitamin diary study

Thomas, Kamilah B; Hauser, Kimberlea; Rodriguez, Nydia Y; Quinn, Gwendolyn P
Objective: To assess the barriers and benefits of taking multivitamins among Hispanic women exposed to a folic acid social marketing campaign in Florida, USA. Design and setting: Evaluation of non-pregnant women aged 18-35 from multiple Hispanic subgroups. Method: For 6 months, participants exposed to social marketing campaign educational materials were given a supply of vitamins and reported, on a daily basis, how often they took a multivitamin with folic acid and reasons why they may not have taken the multivitamin. Results: Forty-one women participated in the study and 65 per cent missed 10 days or less of taking the supplement. The most common reason for not taking the vitamin was forgetting. Conclusion: Compliance with multivitamin intake has numerous barriers. Therefore, continued educational efforts by public health practitioners are necessary in order to reach Hispanic/Latino populations known to have a high risk of neural tube defects.
ISI:000281677400012
ISSN: 0017-8969
CID: 2589032

Measuring quality of life in pediatric palliative care: challenges and potential solutions

Huang, I-Chan; Shenkman, Elizabeth A; Madden, Vanessa L; Vadaparampil, Susan; Quinn, Gwendolyn; Knapp, Caprice A
Annually, about 500,000 children are coping with life-limiting illnesses in the USA. Integrated pediatric palliative care program could benefit some of these children by improving their health-related quality of life (HRQOL). To measure the effect of pediatric palliative care programs on HRQOL, a valid and reliable tool must be identified. This study aimed to validate the psychometric properties of a generic HRQOL instrument, the Pediatric Quality of Life 4.0, for children with life-limiting illnesses. Analyses were conducted using telephone survey data collected from 266 parents whose Medicaid-enrolled children had life-limiting illnesses. Results of the analyses suggest the Pediatric Quality of Life 4.0 does not have valid psychometric properties for measuring HRQOL within this population. Our study documents several challenges in using the generic instrument to measure HRQOL in pediatric palliative care setting. We point out future directions to refine or develop HRQOL instruments for this population of vulnerable children.
PMCID:3810279
PMID: 20007819
ISSN: 1477-030x
CID: 2588812

Knowledge about hereditary colorectal cancer among colorectal cancer survivors

Vadaparampil, Susan T; Quinn, Gwendolyn; Malo, Teri L; Alvarez, Angelic; Miree, Cheryl A; Shibata, David
AIM: Little is known about colorectal cancer (CRC) patients' knowledge regarding hereditary CRC (HCRC). The primary aim of this study was to evaluate CRC survivors' level of knowledge about HCRC and determine if this knowledge varies by demographic or clinical characteristics. METHODS: Data were obtained using a cross-sectional survey of CRC patients at low, moderate, and high risk for HCRC seen at a comprehensive cancer center over a 5-year period (n = 93). Seven items (with potential responses of yes/no/don't know) assessed patients' knowledge. A t-test was conducted to compare composite knowledge among individuals at increased risk for CRC to those who were not at increased risk. RESULTS: For all but one of seven questions, most individuals reported that they did not know the answer to the question. Knowledge among participants at increased risk for HCRC (mean = 2.46, standard deviation = 1.93) was greater than those who were not at increased risk (mean = 1.51, standard deviation = 1.84). There was a statistically significant difference in knowledge between the groups, t(90) = 2.40, p = 0.018. CONCLUSIONS: Results suggest an overall deficit of knowledge among CRC patients. More efforts should focus on increasing knowledge about HCRC prevention among patients and family members. With a better understanding of knowledge gaps, researchers and health-care providers can reevaluate how to better inform CRC patients about HCRC risks.
PMID: 20722496
ISSN: 1945-0257
CID: 2588802

A pilot study of hereditary breast and ovarian knowledge among a multiethnic group of Hispanic women with a personal or family history of cancer

Vadaparampil, Susan T; Quinn, Gwendolyn P; Small, Brent J; McIntyre, Jessica; Loi, Claudia Aguado; Closser, Zuheily; Gwede, Clement K
PURPOSE: To examine knowledge about hereditary breast and ovarian cancer (HBOC) among Mexican, Puerto Rican, and Cuban women. METHODS: Women (age range, 18-65 years) with a personal or family history of breast or ovarian cancer were recruited to a mixed methods study using community-based approaches. Fifty-three women participated in the study: 16 Mexicans, 20 Puerto Ricans, and 17 Cubans. The majority of women (64.2%) were born outside the United States. All questions were interviewer administered in Spanish or English. HBOC knowledge was measured using an 11-item instrument developed by the National Center for Human Genome Research. We evaluated whether differences in knowledge varied as a function of Hispanic subethnicity, demographic characteristics, and medical and acculturation characteristics using a series of one-way analysis of variances. RESULTS: The percentage of correct responses on the knowledge instrument ranged from 9.4% to 73.6% (median number of correct responses = 45%). Knowledge did not significantly differ by Hispanic subethnicity (p = 0.51). Exploratory analysis revealed lower knowledge in women with a personal history of cancer (p = 0.03). CONCLUSION: Our study provides important information about characteristics associated with lower levels of knowledge and specific areas related to HBOC where additional education may be warranted in the Hispanic community.
PMCID:2935838
PMID: 19929403
ISSN: 1945-0257
CID: 2588192