Healthcare Professional Communication on Sexual Health: A Report from the Italian Working Group on Adolescents and Young Adults with Cancer

Abstract Background Sexual function is an important concern for adolescent and young adult (AYA) with cancer. The aim of this study was to explore the attitude of Italian health care professionals who deal with AYA patients with cancer toward sexual health communication. Materials and Methods A 11-question survey was developed by the AIOM (Associazione Italiana di Oncologia Medica) and AIEOP (Associazione Italiana Ematologia Oncologia Pediatrica) AYA workgroup and sent to AIOM and AIEOP members. Results The sample comprised 360 respondents, 54.2% AIEOP and 45.8% AIOM members. Eighty percent were physicians, 14.5% nurses, 4.7% psychologists, and 0.8% other professionals. Medical oncologists are more used to investigate about AYA sexual health than pediatric oncologists (58.2% vs. 46.2%), even if pediatrics more frequently refer patients to specific and shared protocol (40% vs. 26.1%). Both AIOM and AIEOP participants mostly talk about sexual health only on request or occasionally (78.8% and 79%, respectively). Clinician-reported barriers to communication identified in this study are lack of preparation and embarrassment for both the categories, plus the presence/interference of parents for pediatrics and lack of time for medical oncologists. Overall, less than 5% of clinicians in our survey received specific training on potential sexual health issues in AYA patients with cancer and only 2% felt adequately prepared to speak about it. Conclusion Sexual health is a key component of comprehensive care for AYA with cancer during treatments. This study highlighted the need of Italian providers for specific training and guidelines on sex-related health issues encountered by AYA patients.


Implications for Practice
The identification of sexual concerns and the ability to provide effective interventions may lead to improved clinician and patient comfort talking and facing sexual issues.A multidisciplinary approach between medical and pediatric professionals is key to develop shared recommendations and answer to the need for education and training of health care providers.

Introduction
Sexual function is a key aspect of quality of life among adolescent and young adult (AYA) patients with cancer. 1,2Indeed, a cancer diagnosis and the associated oncological treatments may impact on sexual health at physical, psychosocial, and developmental level.4][5] Particularly, women may face early onset of menopause, dyspareunia, lubrication problems, and vaginal stenosis, whereas men may complain erectile and ejaculatory dysfunction.Overall, both sexes may be affected by reduction of libido, loss of desire and satisfaction, orgasmic problems, loss of desire and libido, fatigue, and infertility. 6n AYA patients, body image, romantic affection, and sexual function are connected in a complex relationship, and challenges in one area may affect another. 7As these issues can negatively impact quality of life, there is an urgent need to help healthcare providers discussing these themes early and provide supportive interventions to address these challenges. 8,9 evertheless, despite the prevalence of sexual dysfunction in this population, clinicians often underestimate the relevance of psychosexual issues among AYA and do not discuss sexual and reproductive health through disease treatment and survivorship. 10Moreover, they report a lack of experience discussing sexual issues and recognize the need for further education regarding sexual health communication. 11Lack of knowledge and resources, low priority, parents/family, patient and clinician discomfort, limited time, and lack of rapport have been identified as barriers to communication. 11n April 2021, the Italian adult and pediatric oncology societies-AIOM (Associazione Italiana di Oncologia Medica) and AIEOP (Associazione Italiana Ematologia Oncologia Pediatrica)-joined in a Working Group dedicated to AYA, with the aims of increasing awareness among the scientific community, exchanging knowledge, and foreseeing integrated programs to improve the standard of care for AYA with cancer in Italy. 8,12One of the first research initiatives of this group focuses on sexual issues that affect AYA patients during and after cancer treatments.Particularly, the present study aimed to explore the attitude of Italian health care professionals who deal with AYA patients with cancer toward sexual health communication, identifying barriers to these conversations and evaluating the need for additional education for providers and resources or referrals for patients.

Materials and Methods
Study participants were adult and pediatric professionals who are members of AIOM and AIEOP.
Members of the AIEOP-AIOM AYA working group developed the survey content that was reviewed by one adult and one pediatric psychologist prior to administration.The survey included 11 questions regarding participants' demographics (3), current practices in sexual issue communication (4), barriers to communication (2), and education in addressing sexual issue (2).
The survey was administrated via Google Surveys.Through the official newsletters, survey links were sent to all AIEOP and AIOM members (1176 and 2473 members, respectively).Question format included multiple choice and Likert scale.
The survey remained open for four months.Participant personal information was confidential and was not associated with survey response.Request for ethical committee approval was not sought and consent for this survey not applied considering the minimal risk for individuals for the following reasons: no data through intervention or interaction with the individuals or identifiable private information were obtained.Furthermore, it was a sample survey conducted within the AIEOP and AIOM community with the goal of identifying areas for improvement within the community.
Continuous variables were expressed as the mean ± standard deviation (SD) or median and interquartile range (IQR) when appropriate, while categorical variables were reported as frequency and percentage.The Mann-Whitney or Student's t test, Chi-square and Fisher's exact tests were used to compare continuous and categorical variables, as appropriate.The significance level was set at P < .05.Statistical analysis was performed using R version 4.1.2.
For 69.4% (250/360) of respondents there is no defined management or standard referral pathway if sexual problems occur during treatment or follow-up.
AIEOP respondents were more like to report the presence of a defined management protocol in case of sexual problems in comparison to AIOM respondents (40% vs 26.1%, respectively; P = .007)(Table 2).About 44.7% (161/360) of responders reported that a multidisciplinary team should take care primary responsibility for addressing sexual issues in AYAs.

Communication Barriers
Most of AIEOP and AIOM respondents (78.9%; 284/360) discuss sexual health with AYAs patients only occasionally or after a specific request.6.7% (24/360) reported that they never discuss sexual health with their patients.AIOM professionals and responders over the age of 40 years discuss more frequently sexual health in comparison to AIEOP and participants under the age of 40 years (Table 3).
Prevalent barriers reported in discussing sexual health included concern over embarrassing patients (28.3%), lack of preparation (26%), and presence/interference of parents (19.4%).The lack of time or discomfort was reported as minor constrains (12.6% and 11.1%, respectively).

Education
A total of 66.1% (238/360) of respondents reported that they were either a little or completely unprepared to talk about sexual health.Only 31.9% (115/360) of respondents referred to be quite well prepared.
No differences were found between AIEOP and AIOM professionals, as well as between male and female respondents.Professionals over the age of 40 reported to be better prepared than those under 40 (Table 4).
The majority of respondents (95.3%; 343/360) reported that they did not received a specific training on sexual health in AYA patients.No differences related to age, gender of pediatric, or adult professionals were reported.

Discussion
The present study evaluates attitudes and experiences of pediatric and medical oncology providers toward sexual health communication with AYA patients with cancer.The survey Participant response rate is lower than desired in this survey (6.6% of AIOM members and 16.5% of AIEOP members), and only for pediatric oncology providers it falls within the range of physician response rates observed in previous survey studies (12%-50%). 13verall, medical oncologists are more used to investigate about AYA sexual health than pediatric oncologists (58.2% vs. 46.2%),even if pediatrics more frequently refer patients to specific and shared protocol (40% vs. 26.1%).Interestingly, whereas AIOM participants allocated the responsibility for discussing sexual health to a multidisciplinary team, pediatrics preferred that psychologists and clinicians should play the central role.A previous qualitative study showed that a complementary team approach, with clearly defined roles for different team members, is required to improve communication about sexual health in patients with cancer. 14Identifying team members, such as nurses, social workers, psychologists, sexologists, physician assistants, and physical therapists who have the proper experience and skills to communicate about sexual health with AYAs, may improve the likelihood of counselling is offered, and reduce the burden of time from the oncologist. 6oth AIOM and AIEOP participants mostly talked about sexual health only on request or occasionally (78.8% and 79%, respectively), whereas 19.4% of medical oncologists always talk about these issues compared to 10.8% of pediatrics.This means that patient-clinician conversations on sexual issues take place infrequently, although AYA patients consistently identify the need for improved communication on these subjects 15,16 and despite the recommendations of the American Academy of Pediatrics (AAP), the National Comprehensive Cancer Network (NCCN), and the American Society of Clinical Oncology (ASCO). 9,17,18linician-reported barriers to communication identified in this study are lack of preparation and embarrassment for both the categories, plus the presence/interference of parents for pediatrics and lack of time for medical oncologists.In particular, lack of preparation is more commonly reported by female clinicians and young colleagues; young clinicians also more frequently report professional discomfort and concern over embarrassing patients.These barriers are similar to those reported by clinicians in previous experiences in both pediatric and adult cancer populations. 11,19o facilitate discussing sexual health, clearly defined responsibilities within the team and sufficient knowledge are important. 20Prior studies indicate that allowing time for AYAs to speak to their health providers alone and in a protected environment would offer more opportunities to develop relationships and ask questions, especially around more sensitive topics areas such as sexual health.Moreover, in a previous survey, 50% of pediatric oncologists expressed   the need for further education on sexual function and gender identity/sexual orientation, and more than 30% reported a need for more education on body image, sexual activity/safe sex practices, and contraception. 6][23][24] Improving clinician knowledge on gender identities and sexual orientation and how sexual health needs may differ is an important step in ensuring all conversations are inclusive and may reduce professional discomfort during sexual health communication.
Overall, less than 5% of clinicians in our survey received specific training on potential sexual health issues in AYA patients with cancer and only 2% felt adequately prepared to speak about it.Interestingly, this do not significantly differ between pediatrics and oncologists.Most of participants in the survey declared to be inadequately prepared to discuss sexual health with AYA patients, and this was particularly felt by women and younger colleagues.Previous research identified some facilitating strategies to improve sexual health communication, including self-reported questionnaire for the patients, material to hand out, a checklist for healthcare providers, use of a notification to prepare patients prior to conversations, screening tools, and establishing a relationship prior to the conversations. 20,25Furthermore, several evidence-based strategies have been developed to guide clinicians through sexual health conversations, such as the 5 As (Ask, Advise, Assess, Assist, and Arrange) communication model and the extended PLISSIT or 5 Ps models. 17,26,27hese models start by guiding the clinician to introduce the topic and ask the patient for permission to proceed with the conversation.They proceed providing patients with a brief overview on a specific sexual health topic and then, the clinician asks the AYA additional questions to understand his or her education and support needs.This is followed by provision of brief counseling and/or making specialistic referrals (urology, gynecology, reproductive endocrinology, adolescent medicine, psychology, etc.).Finally, the clinician schedules follow-up visits to ensure that the problems have been addressed. 6o conclude, sexual health is a key component of comprehensive care for AYA with cancer during treatments.Providers caring for these patients should understand how cancer treatment may negatively impact on sexual health and learn the skills to discuss and address sexual health issues.The results of our survey highlights the need of Italian providers for specific training and guidelines on sex-related health issues encountered by AYA patients, including effective communication strategies to facilitate conversation, fertility risk and preservation strategies, safe sex practices during therapy, gender identities and sexual orientation, contraception, and risk for sexually transmitted diseases.A clear understanding of how to initiate sexual health conversations, the identification of sexual concerns and the ability to provide effective interventions may lead to improved clinician and patient comfort talking and facing sexual issues.
The Italian Working Group on AYA is now working on a survey for patients, together with the main Italian associations involved in sexual health.The multidisciplinary approach is key to develop shared recommendations and answer to the need for education and training of healthcare providers..356 .0002 Well prepared How frequently do you talk to your patients about their sexual health?
How prepared do you feel to discuss sexual health with an AYA patient?.101

1 .
Demographic characteristics and clinical variables of the health care providers.
Abbreviation: AYA, adolescent and young adult.