Abstract
There is a critical need to engage adolescents and young adults (AYAs) with cancer in conversations regarding “safer” sexual activity during treatment. Many providers, however, report lacking the knowledge and/or tools to engage in these discussions. This article describes the experience of one pediatric institution in assessing and addressing provider barriers to safer sexual activity discussions among AYAs with cancer. Feedback from patients and providers resulted in an educational handout detailing recommendations regarding safer sex practices for AYAs with cancer. Handout adoption, acceptability, appropriateness, and feasibility are described alongside barriers to assist other institutions seeking to develop similar interventions.
Introduction
Adolescents and young adults (AYAs) with cancer engage in sexual activity at rates similar to their healthy peers,1–3 but less than half consistently use condoms or birth control methods. 2 For AYAs undergoing active cancer treatment, unprotected sexual activity poses significant safety risks. 4 Due to their immunocompromised status, AYAs are more susceptible to sexually transmitted infections than their peers. When treatment regimens include chemotherapy, unprotected sexual activity may also expose partners to chemotherapy and result in teratogenic effects if pregnancy were to occur.
These known risks do not imply that AYAs should be entirely precluded from participating in sexual activity throughout treatment, but rather highlight the need for medical teams to provide AYAs with education on how to engage in these activities more safely. In the BRIGHTLIGHT workshop of AYAs with cancer in the United Kingdom, AYAs reported having unanswered questions about sex and intimacy, but felt embarrassed or uncomfortable bringing up questions without prompting from their providers. 5 Provider-initiated conversations, thus, are likely to be critical to reducing the risks associated with sexual activity among AYAs with cancer. There are no standardized guidelines for sexual health discussions, 6 however, and less than a third of pediatric oncology fellowship programs include education on safer sex practices. 7 As a result, many providers report lacking the knowledge and/or appropriate tools (e.g., patient-facing handouts) to engage in discussions regarding safer sex practices and provider-initiated discussions are rare. 8 Without efforts to address provider barriers, it is likely that many AYAs will make sexual activity decisions without appropriate medical guidance.
Cincinnati Children's Hospital Medical Center (CCHMC) is a nonprofit pediatric academic medical center affiliated with the University of Cincinnati (Cincinnati, OH) that provides care to AYAs (ages 15–39 years) with cancer as part of our Young Adult Cancer Program. Our team has recognized the critical need to regularly discuss safer sexual practices with our AYA patients and has spent the past 3 years using a stakeholder-engaged approach to address barriers to these discussions. The purpose of this article is to detail our efforts to implement a handout designed to facilitate safer sexual practice discussions and highlight key areas of improvement for other institutions seeking to address this critical topic as part of AYA oncology care.
Methods
Participants and procedures
As detailed in the handout development section below, we created a patient-facing handout to help guide safer sexual practice discussions between our medical providers and AYAs with cancer. Two months after the handouts were distributed to our providers, an email was sent to our Divisional list inviting providers to complete an online survey assessing handout implementation. Providers were eligible to participate if they were 18 years or older, fluent in English, and a(n) attending physician, hospitalist physician, fellow, nurse, nurse care manager, nurse practitioner, or physician's assistant currently involved in clinical care with AYAs with cancer. Survey data were collected and managed in REDCap, a secure and HIPAA-compliant web-based application for building and managing surveys and databases hosted at CCHMC. Procedures for the provider survey were approved by CCHMC's Institutional Review Board (2019–1246). As Young Adult Advisory Program feedback was obtained as part of clinical care/quality improvement efforts versus an IRB approved study, details on participation are not included.
Handout addressing barriers to safer sex discussions
Handout development
In early 2017, a survey of our web-based Young Adult Advisory Program 9 (patients with a current or previous cancer diagnosis who are currently ≥18 years and receiving care at our institution) identified discussions regarding sexual activity and sexual health as an unmet need. In the fall of 2017, a CCHMC AYA Grand Rounds was held with our treatment teams to share the survey results and didactic information regarding the current state of the literature on sexual health among AYAs with cancer. The AYA Grand Rounds was open to all multidisciplinary medical team members providing care for AYAs with cancer at CCHMC and is typically attended by attending oncologists, nurse care managers, nurse practitioners, psychologists, and social workers.
Consistent with Young Adult Advisory Program feedback, during the AYA Grand Rounds, few providers endorsed regularly discussing sexual health with their AYA patients. While providers indicated that there are numerous aspects of sexual health that should be discussed with AYAs with cancer, they were most concerned about increasing the frequency of discussions regarding safer sexual activity practices and noted that the primary barriers to these discussions were the lack of agreed-upon institutional guidelines regarding safer sexual activity practices (i.e., the degree of myelosuppression that places patients at increased risk of infection during sexual activity) and materials (e.g., handouts) to facilitate these discussions.
In response to these barriers, a multidisciplinary team comprised of pediatric oncologists, gynecologists, an infectious disease physician, nurse practitioners, nurses, and a psychologist was assembled to synthesize the current literature and develop agreed-upon recommendations regarding safer sex practices for our AYA patients (i.e., absolute neutrophil and platelet count requirements for kissing, nongenital touching, genital to genital touching, oral sex, vaginal penetration, and anal penetration). Another AYA Grand Rounds was conducted and recommendations were presented to the attendees for review.
Following provider approval of recommendations during the AYA Grand Rounds, a patient-facing handout was drafted. The handout includes the aforementioned recommendations; information regarding infections, chemotherapy exposure, birth control, and sexual arousal; and guidance on how to engage in conversations with partners. We partnered with our Young Adult Advisory Program 9 to obtain feedback on handout readability, applicability, formatting, and acceptability. After revising the handout according to Young Adult Advisory Program feedback, the handout was submitted for and received approval from our institution's Clinical Content Committee, which reviews patient-facing materials for aspects such as reading level and tone. A copy of the final handout is available from the authors upon request.
Handout distribution
Once the handout was finalized, one of two providers met with our clinical teams to review and distribute the handout and provide guidance regarding dissemination (e.g., sample language providers could use to introduce the handout to patients).
Measures
Acceptability was assessed using the 4-item Acceptability of Intervention Measure (AIM), 10 a tool designed to evaluate “the perception among implementation stakeholders that a given…innovation is agreeable, palatable, or satisfactory.” Appropriateness was assessed using the Intervention Appropriateness Measure (IAM), 10 a 4-item measure of “the perceived fit, relevance, or compatibility of the innovation…for a given practice setting, provider, or consumer; and/or perceived fit of the innovation to address a particular issue or problem.” Feasibility was assessed using the Feasibility of Intervention Measure (FIM). 10 This 4-item measure was designed to assess “the extent to which a new…innovation can be successfully used or carried out within a given agency or setting.”
All items on the AIM, IAM, and FIM are rated on a 5-point scale from “Completely Disagree” (1) to “Completely Agree” (5). Total scores on the AIM, IAM, and FIM are obtained by calculating an average score of completed items with higher scores representing greater acceptability, appropriateness, and feasibility (range = 1–5). The AIM, IAM, and FIM have demonstrated acceptable internal consistency (AIM α = 0.85; IAM α = 0.91; FIM α = 0.89) and test/retest reliability (AIM r = 0.80; IAM r = 0.73; FIM r = 0.88) 10 and demonstrated acceptable internal consistency in this sample (AIM α = 0.94; IAM α = 0.92; FIM α = 0.84).
Four questions were developed by the study team to assess adoption and barriers to adoption. These questions were similar to those commonly used in the larger implementation science literature. The first two items asked providers to indicate the percentage of AYAs with whom they (1) discussed sexual health and (2) reviewed the handout. Barriers to adoption were assessed via an item asking providers to select all relevant barriers from a list generated by the study team and an open-ended question querying other barriers.
Analysis
On the AIM, IAM, and FIM, item-level responses range from 1 to 5 (1-“Completely Disagree”; 2-“Disagree”; 3-“Neither Agree nor Disagree”; 4-“Agree”; 5-“Completely Agree”). Items are averaged to obtain an overall score with the same range. 10 For this study, we set a threshold for acceptability, appropriateness, and feasibility at a score of “4” on each measure (on average, providers “agree” or “completely agree” that the handout meets the characteristics associated with acceptability, appropriateness, and feasibility). Using a threshold of “4,” mean total AIM, IAM, and FIM scores were calculated to evaluate the hypothesis that providers would find the handout acceptable, appropriate, and feasible. Descriptive statistics were used to summarize patterns of and barriers to adoption.
Results
A total of 69 providers started the survey and 67 completed all items. The sample was comprised of nurses (n = 30, 45%), nurse care managers (n = 11, 16%), nurse practitioners (n = 9, 13%), attending physicians (n = 10, 15%), and fellows (n = 6, 9%). The modal time in practice was 1–4 years (n = 26, 39%; <1 year: n = 3, 4%; 5–10 years: n = 14, 21%; 11–15 years: n = 12, 18%; >15 years: n = 12, 18%).
Fourteen (21%) providers were familiar with the handout and rated it as acceptable [M (standard deviation) = 4.43 (0.63)], appropriate [4.38 (0.56)], and feasible [4.52 (0.43)] (Table 1). As detailed in the summary of sexual health discussion and handout distribution frequency in Table 1, the majority of providers reported discussing safer sex with more than 40% of their AYA patients, but only one provider gave the handout to more than 40% of their AYA patients. As detailed in Table 2, common barriers to adoption included the following: unclear allocation of responsibility, situational barriers, and provider discomfort. Of note, only 1 of the 14 providers familiar with the handout cited lack of knowledge as a barrier.
Safer Sex Handout Implementation
n = 1 missing.
SD, standard deviation.
Barriers to Safer Sexual Activity Discussion and Handout Dissemination
AYA, adolescent and young adult.
Discussion
Feedback from our Young Adult Advisory Program and clinical teams suggested that the lack of agreed-upon safer sexual activity recommendations served as a primary barrier to sexual health conversations between providers and AYAs with cancer at CCHMC. By engaging our clinical teams, other relevant experts, our institution's Clinical Content Committee, and our Young Adult Advisory Program, we were able to create a set of institutional agreed-upon safer sex recommendations for AYAs with cancer and a handout to facilitate recommendation delivery. This stakeholder-engaged approach resulted in a tool that was rated as acceptable, appropriate, and feasible.
While our clinical teams are in support of the recommendations and generally approve of the handout, dissemination remains low. Despite significant efforts to engage stakeholders, only 21% of our providers were aware of the handout (and associated recommendations) 2 months after roll out. These data suggest that our one-time meeting with clinical teams to introduce the handout was insufficient. Additional and repeated efforts are needed to ensure that all staff are aware of the resource and understand the importance of engaging in sexual health discussions with AYAs.
Even among providers who were aware of handouts, distribution was low. Provider feedback suggests that a major barrier to handout distribution is the unclear allocation of responsibility among members of our treatment teams, suggesting that efforts to define how, when, and by whom the handout will be provided could aid in dissemination. Multiple providers provided feedback that sex or sexual health was not a primary concern. While it is possible that medical/clinical circumstances (e.g., results indicating tumor progression) precluded conversations about sexual health, it is also possible that the provider made the decision to postpone these conversations without consulting the AYA. To provide developmentally appropriate care, we encourage providers to engage in shared decision-making with AYAs, allowing AYAs a voice in determining if/when safer sexual practices are discussed. The presence of barriers related to situational factors and provider discomfort also suggest that while creating recommendations and a handout was a necessary first step, training and education to address additional barriers (e.g., how to increase provider comfort in raising topic, how to create a space for a private conversation with an AYA when parents are present) are critical for increasing the frequency of these conversations within clinical care.
This article reports on a stakeholder-engaged approach to addressing an important topic in AYA oncology, but additional research is needed to determine the impact of these and similar efforts on patient outcomes. In summary, the authors hope this article guides teams developing safer sex practice recommendations at their institution and highlights barriers that should be considered to maximize the likelihood of changing clinical practice.
Footnotes
Acknowledgments
The authors extend their deepest thanks to the members of the Young Adult Advisory Program and the colleagues who participated in this project. They also gratefully acknowledge Gabriella A. Breen, BS, for her assistance with data collection and article formatting.
Author Disclosure Statement
No competing financial interests exist.
Funding Information
Access to REDCap was supported by the CCTST at the University of Cincinnati with funding from the National Institutes of Health (NIH) Clinical and Translational Science Award (CTSA) program, grant 2UL1TR001425–05A1. M.E.M. is supported by the National Cancer Institute of the National Institutes of Health under Award Number K07CA200668. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.