Developing a Reproductive Health Survivorship Care Plan (SCP-R) for Female Adolescent and Young Adult Leukemia and Lymphoma Survivors

Abstract

In the United States nearly 250,000 female adolescent and young adult survivors of leukemia and lymphoma (AYA survivors) face increased reproductive health risks that vary by cancer treatment exposure. Adverse reproductive health late effects include infertility, spontaneous abortion, preterm birth, and, more rarely, cardiopulmonary risks impacting pregnancy. AYA survivors have significant concerns, misperception of reproductive risks and unmet information needs about their reproductive health. Reproductive concerns range from worry about infertility to pregnancy and offspring health concerns and are associated with depression and poorer quality of life. These concerns can be mitigated through improving health literacy and implementation of screening and management strategies. However, there is a gap in knowledge on how to deliver reproductive risk information and management strategies effectively and efficiently, to a diverse patient population. The overarching objective of this project was to develop a Reproductive Health Survivorship Care Plan (SCP-R) for female AYA survivors of leukemia and lymphoma as a potential strategy to improve reproductive health knowledge and care. Our team of researchers and healthcare providers in AYA oncology, obstetrics and gynecology, and childhood cancer survivorship completed systematic reviews of infertility risks, contraception practices, pregnancy-related complications and offspring health in AYA female cancer survivors. We then categorized the impact of treatment exposures on infertility and pregnancy/offspring health outcomes as “no increase in risk”, “low risk”, “moderate risk” or “high risk” and developed a SCP-R prototype describing an individual's infertility, pregnancy and offspring risks including clinical guidelines on screening and managing infertility, contraception and pregnancy health. In addition to communicating an individual's reproductive health risk, the SCP-R included guides for survivors towards the next steps in improving their reproductive knowledge and care and supported these steps with best evidence-based guidelines. The SCP-R content was reviewed in 4 focus groups by 18 young adult female leukemia and lymphoma survivors, who advised on graphical representation and endorsed relevance, appropriateness, and acceptability. Relevant feedback provided during focus group sessions was incorporated into the current version of the SCP-R. All focus group participants reported a need for reproductive health information and felt that prior resources provided to them regarding reproductive-health related information was not sufficient. Reproductive health care (i.e. fertility, family planning and preconception counseling) deploys appropriate screening and management strategies; evidence-based practices recommended by clinical oncology and reproductive medicine societies. Despite longstanding guidelines supporting reproductive health care in AYA survivors, many fail to receive this type of care. The SCP-R may reduce reproductive risk misperception among AYA survivors and serve as an essential first step towards appropriate reproductive health care, and eventually lead to improved survivor's quality of life. The SCP-R impact on reproductive health knowledge and reproductive health seeking behavior among AYA leukemia and lymphoma survivors warrants further evaluation.