IntroductionAdolescent 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.MethodsA 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.ResultsAYA 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.ConclusionThe 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.
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.
As cancer survivors live longer, fertility and reproductive health become important health concerns. Like other secondary effects of cancer treatment, these anticipated health risks should be addressed before the initiation of cancer treatment. While existing and emerging technologies may prevent or reduce risk of infertility (e.g., sperm, oocyte, embryo, or tissue banking), the lack of a trained workforce knowledgeable about oncology and reproductive health poses a barrier to care. The allied health professional (AHP) is a target of opportunity because of the direct and sustained patient relationships. Thus, developing tailored educational programs for nurses, social workers, psychologists, and physician assistants is an urgent unmet need toward field building. In this report, we outline results from a pilot study evaluating AHP perceptions of an oncology and reproductive health curriculum originally developed for nurses and adapted to meet the needs of several other AHP groups.
Background Little is known about 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 where 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 semi-structured guide. Following the interview, participants created a summary of responses to the questions. We examined responses to each question using qualitative content analysis. Results Seventy-seven participants (98% completion rate) across 15 states provided a summary. Responses were distributed across these 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 about the realities of adoption policies. The need for a letter stating the survivor was five years cancer-free was identified as a significant obstacle for survivors. Conclusion Nurses are charged with following practice guidelines that include recommendations for appropriate reproductive health referrals. Cancer survivors would benefit from a healthcare provider who can provide education and concrete information when patients are making a decision about fertility and adoption.
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