Faculty Bibliography

Purpose: To examine the perspectives of adolescent survivors of childhood cancer during the transition to early survivorship. Methods: An exploratory, retrospective qualitative study using a multiple case study research design was conducted with eight adolescent survivors of childhood cancer between the ages of 14 and 17 years old. Adolescents who participated in the study were off treatment for a minimum of 6 months and a maximum of 5 years. Participants completed a demographic questionnaire, a semi-structured individual interview, and a follow-up meeting. Data were analyzed using a template organizing style, immersion/crystallization approach, and cross-case analysis strategies within the context of a pediatric oncology transition conceptual framework. Results: Adolescent survivors perceived that their lives changed after treatment completion, but they did not define this time as a "transition." They identified re-engagement in activities and improvement in or absence of negative residual effects of treatment as indicators of returning to normalcy. Presence of residual effects restricted adolescents' participation in desired activities and reminded them that the impact of cancer and treatment extended beyond treatment completion. Adolescents varied in their perceived need for transition care. Conclusion: Adolescents have a unique perspective regarding the transition to early survivorship, providing support for distinguishing them as a distinct subgroup of cancer survivors.

BACKGROUND: Young breast cancer survivors often need to deal with adverse effects of treatments on fertility and complex reproductive decisions. In this systematic review, we highlight what is known about childbearing and parenthood attitudes and decisions of young breast cancer survivors from their own perspective. METHODS: We conducted manual and electronic searches on Pubmed, PsychInf and CINAHL databases for articles, published in English between 1 January 1990 and 31 October 2012, that assessed childbearing, pregnancy and parenthood attitudes/decisions of female breast cancer survivors (premenopausal and/or <50 years old). Eligible articles were classified into quantitative studies, qualitative studies and mixed methods studies. Data from each study were individually extracted by all the authors, and standardized tables were created and discussed to ensure congruence of the information extracted. RESULTS: Of the 493 publications identified in PubMed (results are presented for PubMed searches as the other databases did not yield any new relevant papers), 8 met the inclusion criteria, in addition to 2 publications retrieved manually. A total of 10 studies provided information on pregnancy and parenthood attitudes and decisions, in addition to risks and benefits of childbearing after breast cancer. Survivors had mixed attitudes towards the issue. Fear associated with future pregnancy was reported, namely the risk of cancer recurrence. However, for many survivors, pregnancy and parenthood can represent normalcy, happiness and life fulfilment. CONCLUSIONS: Childbearing after breast cancer is an important issue for survivors. Future larger and prospective studies should be implemented to increase certainty of conclusions of current research. Clinicians may benefit from a deeper understanding of the importance of pregnancy and parenthood to survivors in order to provide the needed educational and psychosocial support services, overcome misinformation and better assist women with their fertility-related decisions.

Although screening reduces colorectal cancer (CRC) incidence and mortality, screening rates are low, particularly among CRC patients' first-degree relatives (FDRs). Little is known about discussion of family members' risk of CRC among patients and their health care providers or with their FDRs. The purpose of this research, guided by the Protection Motivation Theory, was to assess patients' patterns of disclosure of CRC diagnosis to adult siblings and/or children and discussion of familial risk by healthcare providers. A cross-sectional sample of patients who received care at a comprehensive cancer center was recruited to complete telephone-based interviews related to disclosure of CRC diagnosis to FDRs, recall of physician counseling about familial risk, and patients' perception of CRC risk to FDRs. Sixty-nine patients completed the interview. Most participants (n = 67, 97%) had informed their adult children or siblings of their CRC diagnosis to keep their family informed of their health status (n = 15, 22%) and to encourage FDRs to screen for CRC (n = 14, 20%). More than half of the participants' physicians (n = 38, 55%) discussed FDRs' risk of developing CRC with the patient. However, a substantial proportion of patients reported no physician discussion of this risk (n = 28, 41%). Data from this study may guide the development of interventions to facilitate physician discussion and counseling of CRC patients about their FDRs' risk for CRC. However, future studies should explore whether FDRs are likely to be screened after becoming aware of their family member's diagnosis of CRC.

Preimplantation genetic diagnosis (PGD), a form of assisted reproductive technology, is a new technology with limited awareness among health care professionals and hereditary cancer families. Nurses play a key role in the care of patients and are often in an ideal position to discuss and refer patients on sensitive quality of life issues, such as PGD. Two hundred and one nurses at Moffitt Cancer Center (MCC) responded to an online survey assessing knowledge and educational needs regarding PGD and families with hereditary cancer. The majority of respondents were female (n = 188), white (n = 175), had an RN/BSN degree (n = 83), and provided outpatient care at the cancer center (n = 102). More than half of respondents (78%) were unfamiliar with PGD prior to the survey and respondents who had heard of PGD had limited knowledge. More than half of the participants reported PGD was an acceptable option for families with hereditary cancer syndromes and thought individuals with a strong family or personal history should be provided with information about PGD. This study indicates that oncology nurses may benefit from and desire education about PGD. With advances in reproductive technology and options, further PGD education is needed among healthcare professionals. An examination of current oncology nursing curriculum and competencies regarding genetic education may identify need for future revisions and updates.

Significant cancer health disparities exist in the United States and Puerto Rico. While numerous initiatives have been implemented to reduce cancer disparities, regional coordination of these efforts between institutions is often limited. To address cancer health disparities nation-wide, a series of regional transdisciplinary networks through the Geographic Management Program (GMaP) and the Minority Biospecimen/Biobanking Geographic Management Program (BMaP) were established in six regions across the country. This paper describes the development of the Region 3 GMaP/BMaP network composed of over 100 investigators from nine institutions in five Southeastern states and Puerto Rico to develop a state-of-the-art network for cancer health disparities research and training. We describe a series of partnership activities that led to the formation of the infrastructure for this network, recount the participatory processes utilized to develop and implement a needs and assets assessment and implementation plan, and describe our approach to data collection. Completion, by all nine institutions, of the needs and assets assessment resulted in several beneficial outcomes for Region 3 GMaP/BMaP. This network entails ongoing commitment from the institutions and institutional leaders, continuous participatory and engagement activities, and effective coordination and communication centered on team science goals.

BACKGROUND: No validated multiscale instruments exist that measure community members' views on biobanking and biospecimen donation. This study describes the development and psychometric properties of the English-language BANKS (Biobanking Attitudes and Knowledge Survey). METHODS: The BANKS was created by item generation through review of scientific literature, focus groups with community members, and input from a community advisory board. Items were refined through cognitive interviews. Content validity was assessed through an expert panel review. Psychometric properties of the BANKS were assessed in a sample of 85 community members. RESULTS: The final BANKS includes three scales: attitudes, knowledge, and self-efficacy; as well as three single items, which evaluated receptivity and intention to donate a biospecimen for research. Cronbach alpha coefficients for two scales that use Likert response format indicated high internal consistency (attitudes: alpha, 0.88; self-efficacy: alpha, 0.95). Content validity indices were moderate, ranging from 0.69 to 0.89. Intention to donate blood and intention to donate urine were positively correlated with attitudes, knowledge, self-efficacy, and receptivity to learning more about biobanking (P values range from 0.029 to <0.001). CONCLUSIONS: The final BANKS shows evidence of satisfactory reliability and validity, is easy to administer, and is a promising tool to inform biospecimen research. Additional studies should be conducted with larger samples considering biospecimen donation to further assess the reliability and validity of the instrument. IMPACT: A valid and reliable instrument measuring community members' views about biobanking may help researchers evaluate relevant communication interventions to enhance understanding, intention, and actual biospecimen donation. A Spanish-language BANKS is under development.

BACKGROUND: Physician recommendation is a key predictor of human papillomavirus (HPV) vaccine uptake. Understanding factors associated with recommendation is important for efforts to increase current suboptimal vaccine uptake. PURPOSE: This study aimed to examine physician recommendations to vaccinate female patients aged 11-26 years, in 2009 and 2011, at 3 and 5 years postvaccine licensure, respectively. A second aim was to identify trends in factors associated with vaccine recommendation for ages 11 and 12 years. METHODS: Nationally representative samples of physicians practicing family medicine, pediatrics, and obstetrics and gynecology were randomly selected from the American Medical Association Physician Masterfile (n=1538 in 2009, n=1541 in 2011). A mailed survey asked physicians about patient and clinical practice characteristics; immunization support; and frequency of HPV vaccine recommendation ("always" >/=75% of the time vs other). Analyses were conducted in 2012. RESULTS: Completed surveys were received from 1013 eligible physicians (68% response rate) in 2009 and 928 (63%) in 2011. The proportion of physicians who reported always recommending HPV vaccine increased significantly from 2009 to 2011 for patients aged 11 or 12 years (35% vs 40%, respectively; p=0.03), but not for patients aged 13-17 years (53% vs 55%; p=0.28) or 18-26 years (50% vs 52%; p=0.52). Physician specialty, age, and perceived issues/barriers to vaccination were associated with vaccine recommendation for patients aged 11 or 12 in both years. CONCLUSIONS: Results suggest a modest increase in recommendations for HPV vaccination of girls aged 11 or 12 years over a 2-year period; however, recommendations remain suboptimal for all age groups despite national recommendations for universal immunization.