Contraception: the Need for Expansion of Counsel in Adolescent and Young Adult (AYA) Cancer Care.

Little is known about oncology provider recommendations regarding best practices in contraception use during cancer treatment and through survivorship for adolescent and young adult (AYA) cancer patients. This review examined the literature to identify related studies on contraception recommendations, counseling discussions, and methods of contraception in the AYA oncology population. A literature review was conducted using PubMed, including all peer-reviewed journals with no publication date exclusions. A systematic review of the literature was conducted using combinations of the following phrases or keywords: "oncology OR cancer" AND "contraception, family planning, contraceptive devices, contraceptive agents, intrauterine devices OR IUD, vaccines, spermatocidal agents, postcoital, immunologic, family planning, vasectomy, tubal ligation, sterilization" AND "young adult OR adolescent" AND "young adult AND adolescent". Reviewers assessed articles using the "Quality Assessment Tool for Quantitative Studies" which considers: (1) selection bias; (2) study design; (3) confounders; (4) blinding; (5) data collection methods; and (6) withdrawals and dropouts. A total of five articles were included and all studies were quantitative. Results showed no consistent recommendations among providers, references to guidelines, or methods of contraceptive types. Provider guidelines for discussions with AYA patients should be expanded to provide comprehensive, consistent, and quality cancer care in the AYA population.

Nurse Perspectives on Referrals for Oncology Patients to Reproductive Endocrinologists: Results of a Learning Activity.

BACKGROUND: Although concern about future fertility for adolescents and young adults (AYAs) with cancer is high, referrals to reproductive endocrinologists (REI) are low. Oncology nurses are well positioned to facilitate these referrals but may lack the knowledge and training. This report describes a learning activity in the Educating Nurses about Reproductive Issues in Cancer Healthcare (ENRICH) program whereby oncology nurses interviewed REIs. METHOD: Participants were instructed to conduct an interview with an REI using a semistructured guide and provided a written report of the discussion. We examined responses to each question using qualitative content analysis. RESULTS: Seventy-seven participants across 15 states provided a summary. Learner summaries highlighted four themes related to FP, including Cost, Time, Lack of Information or Referrals, and Learning About Available Options. CONCLUSION: Oncology nurses have an opportunity for a partnership to ensure that concerns about fertility among AYA patients are addressed. J Contin Educ Nurs. 2016;47(8):376-384.

ENRICH: A promising oncology nurse training program to implement ASCO clinical practice guidelines on fertility for AYA cancer patients.

OBJECTIVE: We describe the impact of ENRICH (Educating Nurses about Reproductive Issues in Cancer Healthcare), a web-based communication-skill-building curriculum for oncology nurses regarding AYA fertility and other reproductive health issues. METHODS: Participants completed an 8-week course that incorporated didactic content, case studies, and interactive learning. Each learner completed a pre- and post-test assessing knowledge and a 6-month follow-up survey assessing learner behaviors and institutional changes. RESULTS: Out of 77 participants, the majority (72%) scored higher on the post-test. Fifty-four participants completed the follow-up survey: 41% reviewed current institutional practices, 20% formed a committee, and 37% gathered patient materials or financial resources (22%). Participants also reported new policies (30%), in-service education (37%), new patient education materials (26%), a patient navigator role (28%), and workplace collaborations with reproductive specialists (46%). CONCLUSION: ENRICH improved nurses' knowledge and involvement in activities addressing fertility needs of oncology patients. Our study provides a readily accessible model to prepare oncology nurses to integrate American Society of Clinical Oncology guidelines and improve Quality Oncology Practice Initiative measures related to fertility. PRACTICE IMPLICATIONS: Nurses will be better prepared to discuss important survivorship issues related to fertility and reproductive health, leading to improved quality of life outcomes for AYAs.

A Web-Based Platform for Educating Researchers About Bioethics and Biobanking.

Participation in biobanking among individuals with familial risk for hereditary cancer (IFRs) and underserved/minority populations is vital for biobanking research. To address gaps in researcher knowledge regarding ethical concerns of these populations, we developed a web-based curriculum. Based on formative research and expert panel assessments, a curriculum and website was developed in an integrative, systematic manner. Researchers were recruited to evaluate the curriculum. Public health graduate students were recruited to pilot test the curriculum. All 14 researchers agreed the curriculum was easy to understand, adequately addressed the domains, and contained appropriate post-test questions. The majority evaluated the dialgoue animations as interesting and valuable. Twenty-two graduate students completed the curriculum, and 77 % improved their overall test score. A web-based curriculum is an acceptable and effective way to provide information to researchers about vulnerable populations' biobanking concerns. Future goals are to incorporate the curriculum with larger organizations.

Adoption and cancer survivors: Findings from a learning activity for oncology nurses.

BACKGROUND: To the authors' knowledge, little is known regarding the rate at which cancer survivors successfully adopt a child or about their experiences negotiating a costly, and perhaps discriminatory, process regarding the prospective parent's health history. The current study describes the results of a learning activity in which nurses contacted an adoption agency to learn more about the process for survivors with the goal of helping nurses provide patients with accurate information for making a well-informed decision regarding adoption. METHODS: Training program participants identified an adoption agency (local, state, or international) and conducted an interview using a semistructured guide. After the interview, participants created a summary of responses to the questions. The authors examined responses to each question using qualitative content analysis. RESULTS: A total of 77 participants (98% completion rate) across 15 states provided a summary. Responses were distributed across the following categories: adoption costs, steps required for survivors seeking adoption, challenges for survivors seeking adoption, birth parents' reservations, and planned institutional changes to increase adoption awareness. The majority of respondents reported improving their knowledge of adoption and cancer, increased challenges for survivors, and the need to educate patients concerning the realities of adoption policies. The need for a letter stating the survivor was 5 years cancer free was identified as a significant obstacle for survivors. CONCLUSIONS: Nurses are charged with following practice guidelines that include recommendations for appropriate reproductive health referrals. Cancer survivors would benefit from a health care provider who can provide education and concrete information when patients are making a decision about fertility and adoption.

Quality of life in adolescent and young adult cancer patients: a systematic review of the literature.

INTRODUCTION: Adolescent and young adult (AYA) cancer survivors experience many unique challenges and quality of life (QoL) effects that persist beyond cancer diagnosis and treatment. Due to continuous improvements in technology and cancer treatments resulting in improved survival rates, the identification of late effects, survivorship issues, and QoL is moving to the forefront of cancer research. The goal of this systematic review was to identify key psychosocial factors impacting QoL in AYA oncology populations. METHODS: A systematic review of the literature was conducted using combinations of these phrases or keywords: "adolescent and young adult or AYA" AND "health outcomes OR quality of life OR psychology" AND "neoplasm OR cancer OR oncology". A total of 35 articles were included in this review. Studies were classified into two categories: AYA perceptions and stakeholder perceptions. RESULTS: AYA cancer survivors were more likely to have "worse" or impaired QoL compared with the general population, regardless of other demographic factors. AYAs described both positive and negatives experiences with their medical care, the educational information received, and the supportive care services. Although health care professionals were likely to underestimate or misjudge the health preferences and support needs of AYAs, these perceptions varied across disciplines and levels of experience. CONCLUSION: The literature is lacking in sufficient evidence-based interventions to improve QoL in AYA cancer populations. Further, the tools to adequately measure QoL in this population are also unsatisfactory. The literature, however, consistently shows agreement regarding the unique needs of this population, indicating a trend toward health care standardization within age ranges or life stages. We suggest the need for AYA-specific programs in health care institutions that comprise a multidisciplinary team that addresses all the unique medical and QoL needs of AYAs.

If you did not document it, it did not happen: rates of documentation of discussion of infertility risk in adolescent and young adult oncology patients' medical records.

PURPOSE: The adolescent and young adult (AYA) population is underserved because of unique late-effect issues, particularly future fertility. This study sought to establish rates of documentation of discussion of risk of infertility, fertility preservation (FP) options, and referrals to fertility specialists in AYA patients' medical records at four cancer centers. METHODS: All centers reviewed randomized records within the top four AYA disease sites (breast, leukemia/lymphoma, sarcoma, and testicular). Eligible records included those of patients: diagnosed in 2011, with no prior receipt of gonadotoxic therapy; age 18 to 45 years; with no multiple primary cancers; and for whom record was not second opinion. Quality Oncology Practice Initiative methods were used to evaluate documentation of discussion of risk of infertility, discussion of FP options, and referral to a fertility specialist. RESULTS: Of 231 records, 26% documented infertility risk discussion, 24% documented FP option discussion, and 13% documented referral to a fertility specialist. Records were less likely to contain evidence of infertility risk and FP option discussions for female patients (P = .030 and .004, respectively) and those with breast cancer (P = .021 and < .001, respectively). Records for Hispanic/Latino patients were less likely to contain evidence of infertility risk discussion (P = .037). Records were less likely to document infertility risk discussion, FP option discussion, and fertility specialist referral for patients age ≥ 40 years (P < .001, < .001, and .002, respectively) and those who already had children (all P < .001). CONCLUSION: The overall rate of documentation of discussion of FP is low, and results show disparities among specific groups. Although greater numbers of discussions may be occurring, there is a need to create interventions to improve documentation.

Lesbian, Gay, Bisexual, Transgender, Queer/Questioning (LGBTQ) Perceptions and Health Care Experiences.

BACKGROUND: The goal study of this was to explore attitudes, health knowledge, and experiences with healthcare setting and providers among gay, lesbian, bisexual, transgender, queer/questioning (GLBTQ) individuals and to identify areas for improvement. METHODS: Members of Equality Florida™ residing in the five counties of the Tampa Bay region were recruited through email invitation to complete a 60-item questionnaire assessing demographics, attitudes, and experiences with healthcare providers (HCPs). Additional open-ended questions focused on experiences with HCPs and suggestions for ways to improve HCPs' cultural competency. RESULTS: 632 respondents completed the survey of which 41% were gay men and 29% were lesbian. The majority of participants was White, non-Hispanic (93%), married/partnered (78%), and had health insurance (88%). The majority (67%) reported they always or often disclosed their sexual orientation/identity to an HCP and few had negative reactions in the healthcare setting (<10%). Healthcare settings with equality signs and gender-neutral language were perceived as safer. Participants' responses suggested need for policy changes and improved cultural competence among HCPs. CONCLUSION: Results show high rates of sexual orientation disclosure, greater acceptance from providers of GLBTQ status, and the need for examination of hospital policies and improved cultural competency.

Contrasting the ethical perspectives of biospecimen research among individuals with familial risk for hereditary cancer and biomedical researchers: implications for researcher training.

While ethical concerns about participating in biospecimen research have been previously identified, few studies have reported the concerns among individuals with familial risk for hereditary cancer (IFRs). At the same time, biomedical researchers often lack training in discussing such concerns to potential donors. This study explores IFRs' and biomedical researchers' perceptions of ethical concerns about participating in biobanking research. In separate focus groups, IFRs and biomedical researchers participated in 90-min telephone focus groups. Focus group questions centered on knowledge about laws that protect the confidentiality of biospecimen donors, understanding of informed consent and study procedures, and preferences for being recontacted about potential incidental discovery and also study results. A total of 40 IFRs and 32 biomedical researchers participated in the focus groups. Results demonstrated discrepancies between the perceptions of IFRs and researchers. IFRs' concerns centered on health information protection; potential discrimination by insurers and employers; and preferences for being recontacted upon discovery of gene mutations or to communicate study results. Researchers perceived that participants understood laws protecting donors' privacy and (detailed study information outlined in the informed consent process), study outcomes were used to create a training tool kit to increase researchers' understanding of IFRs' concerns about biobanking.

Knowledge and Educational Needs about Pre-Implantation Genetic Diagnosis (PGD) among Oncology Nurses.

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.

Childbearing attitudes and decisions of young breast cancer survivors: a systematic review.

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.

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

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.