Hematology and Oncology Fellow Education About Sexual and Reproductive Health: A Survey of Program Directors in the United States.

PURPOSE: Clinical oncology guidelines recommend addressing sexual and reproductive health (SRH) concerns in routine cancer care. However, limited training often hinders clinicians' ability to do so effectively. The objective of this study was to understand the state of current fellowship education on SRH (ie, sexual health, safe sex practices, and fertility) through conducting a national survey of US hematology/oncology fellowship program directors (PDs). METHODS: A survey was sent to all PDs of adult hematology/oncology fellowship programs in the United States via online link. PDs who did not complete the survey were sent up to four follow-up emails and a paper mailing. Descriptive statistics and McNemar tests were conducted. RESULTS: One hundred-fourteen PDs responded (65%). Fewer programs offered formal instruction on sexual health (49%) and safe sex practices (37%) compared with fertility (75%). Informal training in SRH relied heavily on direct clinical experience (73%-78% of programs), with other methods (eg, case-based approaches, webinars, and journal clubs) being less common. Lack of experts to provide instruction was the most commonly cited barrier to offering training in SRH, endorsed by 74% for sexual health, 68% for safe sex practices, and 54% for fertility; difficulty finding space within the curriculum (50%; 54%; and 43%, respectively) and a lack of training requirements were also commonly endorsed (57%; 60%; and 35%, respectively). Barriers were endorsed more commonly for sexual health topics than fertility. CONCLUSION: The results highlight the scarcity of training in SRH, particularly in sexual health, within hematology/oncology fellowship programs. The heavy reliance on informal instruction methods may lead to inconsistent and inadequate education. Efforts to integrate comprehensive training in SRH into fellowship programs are crucial to ensuring that such concerns are included in routine cancer care.

Sexual Health in Adolescents and Young Adults With Cancer.

Sexual health (SH), an integral aspect of overall health and quality of life, can be negatively affected by cancer and cancer treatment. SH is influenced by biological, psychological, social, and cultural factors, and, for adolescents and young adults (AYAs), developmental factors. The AYA population (age 15-39 years) is diverse in terms of psychosexual development, interpersonal relationships, and varying levels of independence, resulting in unique SH needs for this population. AYAs with cancer are particularly vulnerable to unmet SH needs related to contraception and infection prevention, sexual function, body image, and romantic/sexual relationships. Sexual dysfunction during and after cancer treatment is reported by 30%-100% of AYA cancer survivors. Clinical guidelines recommend discussing SH and screening for dysfunction but currently lack specifics regarding psychosexual interventions and strategies for incorporating screening into clinical care. Research and clinical priorities include improved provider-AYA communication regarding SH, standardization of SH measures and screening tools, infrastructure to support the SH needs of AYAs across pediatric and adult clinical environments, and engagement of sexual and gender minority AYAs in research. As the field of SH in cancer evolves, interventions need to be tailored to the developmental needs that are unique to AYAs and address the multidimensional aspects of SH.

Psychosexual functioning in cancer survivorship: What the pediatric oncologist needs to know.

Sexual health may be disrupted in adolescents and young adults (AYAs) both during and after cancer treatment, irrespective of whether they are diagnosed in childhood, adolescence, or young adulthood. Unfortunately, oncology providers often underestimate the relevance of psychosexual issues for AYAs and underprioritize sexual health throughout treatment and survivorship. The purpose of this narrative review is to provide information on (a) the etiology of psychosexual dysfunction in childhood, adolescent, and young adult cancer patients and young adult survivors of childhood cancer; (b) strategies for communicating and evaluating potential sexual health issues of AYA patients/survivors; and (c) guidance for the practicing pediatric oncologist on how to address sexual health concerns with patients.

Fertility Preservation Practices at Pediatric Oncology Institutions in the United States: A Report From the Children's Oncology Group.

PURPOSE: Fertility discussions are an integral part of comprehensive care for pediatric, adolescent, and young adult patients newly diagnosed with cancer and are supported by national guidelines. Current institutional practices are poorly understood. METHODS: A cross-sectional survey was distributed to 220 Children's Oncology Group member institutions regarding fertility discussion practices. Descriptive statistics were calculated for all variables. The association between specific practices and selected outcomes on the basis of sex was examined via multivariable logistic regression. RESULTS: One hundred forty-four programs (65.5%) returned surveys. Of these, 65 (45.1%) reported routine discussions of fertility with all female patients and 55 (38.5%) all male patients (P = .25). Ninety-two (63.8%) reported no specific criteria for offering females fertility preservation (FP), compared with 40 (27.7%) for males (P < .001). Program characteristics associated with fertility discussions included reproductive endocrinology and infertility on site (females odds ratio [OR], 2.1; 95% CI, 1.0 to 4.3), discussion documentation mandate (females OR, 2.3; 95% CI, 1.0 to 5.5; males OR, 3.5; 95% CI, 1.4 to 8.7), and cumulative institution-based FP infrastructure (which included [1] routine practice of documentation, [2] template for documentation, [3] mandate for documentation, and [4] availability of FP navigation; females OR, 1.6; 95% CI, 1.1 to 2.3; males OR, 2.3; 95% CI, 1.6 to 3.4). Utilization of practices unsupported by guidelines included offering sperm banking after treatment initiation (39/135 programs; 28.9%), gonadotropin-releasing hormone analogs for ovarian suppression/FP (75/144 programs; 52.1%), ovarian tissue cryopreservation at diagnosis for patients with leukemia (19/64 programs; 29.7%), and testicular tissue cryopreservation (23/138 programs; 16.7%) not part of a clinical trial. CONCLUSION: Despite recommended guidelines, fertility discussions with patients/families before treatment initiation are not routine at Children's Oncology Group institutions. Standard criteria to determine which options should be offered to patients are more common for males than females.

Pediatric, adolescent, and young adult breast and reproductive tumors.

Tumors of the breast and reproductive organs that occur in children, adolescents, and young adults (AYA) have different biological features and can present special challenges. Although prognosis for these tumors is generally favorable, the long-term effects of treatment can be debilitating. Treatments are often multimodal and may include surgery as well as chemotherapy and/or radiation, which can cause considerable distress and anxiety related to loss of femininity or masculinity, concern over future fertility, or sexual dysfunction. Thus, tumors of the reproductive organs in pediatric/AYA patients require special consideration of the treatment effects beyond the intended oncologic outcome. Multidisciplinary teams should be involved in their care and address issues of fertility, sexual dysfunction, and psychosexual concerns before treatment begins. This review addresses histology, risk factors, prognosis, staging and treatment of gynecologic, breast and testicular cancers in pediatric and AYA patients.

Psychosexual functioning in cancer survivorship: What the pediatric oncologist needs to know.

Sexual health may be disrupted in adolescents and young adults (AYAs) both during and after cancer treatment, irrespective of whether they are diagnosed in childhood, adolescence, or young adulthood. Unfortunately, oncology providers often underestimate the relevance of psychosexual issues for AYAs and underprioritize sexual health throughout treatment and survivorship. The purpose of this narrative review is to provide information on (a) the etiology of psychosexual dysfunction in childhood, adolescent, and young adult cancer patients and young adult survivors of childhood cancer; (b) strategies for communicating and evaluating potential sexual health issues of AYA patients/survivors; and (c) guidance for the practicing pediatric oncologist on how to address sexual health concerns with patients.

Randomized Waitlist-Control Trial of a Web-Based Stress-Management and Resiliency Program for Adolescent and Young Adult Cancer Survivors: Protocol for the Bounce Back Study.

BACKGROUND: The emotional health of adolescent and young adult (AYA) cancer survivors is compromised both during and after cancer treatment. Targeted programs designed to support AYAs' ability to cope with stress in the years following treatment completion are lacking. Mind-body programs may ameliorate the negative psychological and emotional effects of stress and assist AYAs with managing the psychosocial challenges of early survivorship. OBJECTIVE: Our randomized waitlist-control trial aims to assess the feasibility, acceptability, and preliminary efficacy of a virtual group program (Bounce Back) to promote stress management and resiliency among posttreatment AYAs. METHODS: Bounce Back is a stress management and resiliency program delivered via videoconference by a trained mental health clinician. Sessions were adapted from an evidence-based mind-body program (Stress Management and Resiliency Training - Relaxation Response Resiliency Program [SMART-3RP]) grounded in relaxation response elicitation, mindfulness, cognitive behavioral therapy, and positive psychology. Seventy-two AYAs (diagnosed with cancer between ages 14 years and 29 years and had completed cancer treatment within the last 5 years) were randomly assigned to the Bounce Back program or waitlist-control group and completed assessments at baseline, 3 months postbaseline, and 6 months postbaseline. The primary aim of the study is to determine the feasibility and acceptability of the Bounce Back program. Descriptive statistics, including means, frequencies, and ranges supplemented by qualitative exit interview feedback will be used to characterize the sample and to summarize feasibility and acceptability. The exploratory aims are to evaluate the preliminary effects of the program on stress coping and psychosocial outcome measures (ie, anxiety, depression) collected across the 3 time points. RESULTS: This study was funded by the National Cancer Institute in July 2017. Study procedures were approved by the Dana-Farber Harvard Cancer Center Institutional Review Board in October 2018 (Protocol 18-428). The randomized trial was conducted from July 2019 to March 2021. Quantitative data collection is complete, and qualitative exit interview data collection is ongoing. Results are expected to be published in peer-reviewed journals and presented at local, national, or international meetings in the coming years. CONCLUSIONS: Few evidence-based programs exist that tackle the key transitional issues faced by AYA cancer survivors. Future analyses will help us determine the feasibility and acceptability of the Bounce Back program and its impact on AYA stress coping and psychological well-being. TRIAL REGISTRATION: ClinicalTrials.gov NCT03768336; https://clinicaltrials.gov/ct2/show/NCT03768336. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/34033.

Infrastructure of Fertility Preservation Services for Pediatric Cancer Patients: A Report From the Children's Oncology Group.

PURPOSE: Fertility preservation (FP) services are part of comprehensive care for those newly diagnosed with cancer. The capacity to offer these services to children and adolescents with cancer is unknown. METHODS: A cross-sectional survey was sent to 220 Children's Oncology Group member institutions regarding institutional characteristics, structure and organization of FP services, and barriers to FP. Standard descriptive statistics were computed for all variables. The association between site-specific factors and selected outcomes was examined using multivariable logistic regression. RESULTS: One hundred forty-four programs (65.5%) returned surveys. Fifty-three (36.8%) reported a designated FP individual or team. Sperm banking was offered at 135 (97.8%) institutions, and testicular tissue cryopreservation at 37 (27.0%). Oocyte and embryo cryopreservation were offered at 91 (67.9%) and 62 (46.6%) institutions, respectively; ovarian tissue cryopreservation was offered at 64 (47.8%) institutions. The presence of dedicated FP personnel was independently associated with the ability to offer oocyte or embryo cryopreservation (odds ratio [OR], 4.7; 95% CI, 1.7 to 13.5), ovarian tissue cryopreservation (OR, 2.7; 95% CI, 1.2 to 6.0), and testicular tissue cryopreservation (OR, 3.3; 95% CI, 1.4 to 97.8). Only 26 (18.1%) participating institutions offered all current nonexperimental FP interventions. Barriers included cost (70.9%), inadequate knowledge or training (60.7%), difficulty characterizing fertility risk (50.4%), inadequate staffing (45.5%), and logistics with reproductive specialties (38%-39%). CONCLUSION: This study provides the most comprehensive view of the current landscape of FP infrastructure for children and adolescents with cancer and demonstrates that existing infrastructure is inadequate to offer comprehensive services to patients. We discuss modifiable factors to improve patient access to FP.

Adolescent and young adult childhood cancer survivors' preferences for screening and education of sexual function.

BACKGROUND: Sexual dysfunction (SD) is a common yet underrecognized concern among childhood cancer survivors (CCS). CCS who are now adolescent and young adult (AYA-CCS) identify SD as an unmet need. This study sought to explore AYA-CCS preferences on how, when, where, and by whom SD-focused communication should occur. PROCEDURE: This qualitative study utilized semi-structured interviews to explore AYA-CCS (now aged 15-24 years) experiences with, and preferences for, SD conversations. Thematic analysis methodology guided interpretation; themes were clustered into categories of who, how, when, and where SD conversations should occur. RESULTS: AYA-CCS highlighted the importance of patient-provider rapport to facilitate SD conversations, but did not have consistent preferences regarding provider type or specialty. Providers should reduce discomfort by normalizing ongoing, personalized conversations. Some AYA-CCS mentioned that notification that such a conversation is going to occur would be appreciated, and most were in favor of a screening tool to facilitate conversations. Preferences for when and where SD conversations should occur were centered on maximizing privacy. CONCLUSIONS: SD is an inadequately addressed concern in AYA-CCS, and providers must familiarize themselves with AYA-CCS preferences for discussing SD to reduce communication barriers and address this unmet need. In addition to corroborating prior studies' findings such as normalizing ongoing SD conversations, this study demonstrated novel ideas for reducing barriers, including use of a notification to prepare them prior to SD conversations, favoring the use of a screening tool, and the importance of establishing rapport prior to the SD conversations.

Pediatric oncology clinician communication about sexual health with adolescents and young adults: A report from the children's oncology group.

BACKGROUND: Sexual health (SH) is an important concern for adolescents and young adults (AYAs). This study determined current SH communication practices, barriers, and additional resources needed among pediatric oncology clinicians who treat AYAs. METHODS: A cross-sectional survey was developed by the Children's Oncology Group (COG) AYA Committee and sent to pediatric oncologists (n = 1,987; 85.9%) and advanced practice providers (APPs, n = 326; 14.1%) at 226 COG institutions. Responses were tabulated and compared using tests of proportion and trend. RESULTS: The sample comprised 602 respondents from 168 institutions and was proportionally representative (468 oncologists [77.7%], 76 APPs [12.6%], 58 unidentified [9.6%]; institutional and provider response rates 74.3% and 26.2%, respectively). Almost half of respondents (41.7%) reported no/small role in SH care. Medical topics were discussed most often, including contraception (67.2%), puberty (43.5%), and sexual activity (37.5%). Topics never/rarely discussed included gender identity (64.5%), sexual orientation (53.7%), and sexual function (50.3%). Frequently cited communication barriers included lack of time, low priority, perceived patient discomfort, and the presence of a parent/guardian. Respondents endorsed the need for further education/resources on sexual function (66.1%), gender identity/sexual orientation (59.5%), and body image (46.6%). Preferred education modalities included dissemination of published guidelines (64.7%), skills training modules (62.9%), and webinars (45.3%). By provider type, responses were similar overall but differed for perception of role, barriers identified, and resources desired. CONCLUSIONS: Many pediatric oncology clinicians play minimal roles in SH care of AYAs and most SH topics are rarely discussed. Provider-directed education/training interventions have potential for improving SH care of AYA cancer patients.

Sexual health among adolescent and young adult cancer survivors: A scoping review from the Children's Oncology Group Adolescent and Young Adult Oncology Discipline Committee.

Sexual function is a vital aspect of quality of life among adolescent and young adult (AYA) (ages 15-39 years) cancer survivors. Sexual function encompasses physical, psychosocial, and developmental factors that contribute to sexual health, all of which may be negatively impacted by cancer and treatment. However, limited information is available to inform the care of AYA cancer survivors in this regard. This scoping review, conducted by the Children's Oncology Group AYA Oncology Discipline Committee, summarizes available literature regarding sexual function among AYA cancer survivors, including relevant psychosexual aspects of romantic relationships and body image. Results suggest that, overall, AYA cancer survivors experience a substantial burden of sexual dysfunction. Both physical and psychosocial sequelae influence survivors' sexual health. Interventions to support sexual health and psychosexual adjustment after cancer treatment are needed. Collaborations between the Children's Oncology Group and adult-focused cooperative groups within the National Cancer Institute's National Clinical Trials Network are warranted to advance prospective assessment of sexual dysfunction and test interventions to improve sexual health among AYA cancer survivors.

Pediatric hematology and oncology fellow education in sexual and reproductive health: A survey of fellowship program directors in the United States.

PURPOSE: Pediatric oncology clinicians identify a need for increased sexual and reproductive health (SRH) education with adolescent and young adult (AYA) cancer patients. By surveying pediatric oncology fellowship directors, this study clarifies the state of current fellowship education about SRH for the AYA patient. METHODS: A survey was sent to all pediatric oncology fellowship program directors (PDs) in the United States consisting of 13 questions pertaining to three primary SRH domains: sexual health, fertility, and safe sex practices. Descriptive statistics and χ2 were used in data analyses. RESULTS: Sixty-three PDs responded to the survey (91% response rate). Of these, 88% reported having formal instruction regarding fertility, 41% reported curriculum regarding contraception and 30% reported some education regarding sexual health. The curriculum "being too full" was identified as a barrier to education on fertility (29%), sexual health (40%), and safe sex practices (38%). Not being a required or expected part of the program was more likely to be endorsed as a barrier for sexual health (26%) and safe sex practices (30%) compared with fertility (8%) (P < 0.005). Lack of experts to teach was a more frequently endorsed barrier to education on sexual health (47%) compared with either fertility (23%) or safe sex practices (25%) (P < 0.005). CONCLUSIONS: This study identifies important gaps in oncology fellow education about SRH. Future research must explore optimal education strategies that are feasible and acceptable by PDs and fellow learners, and effective in optimizing AYA SRH care.

Experiences with Menses and Menstrual Suppression of Young Women with a History of Cancer.

Background: Adolescent and young adult (AYA) women undergoing multiagent chemotherapy are at risk for heavy menstrual bleeding (HMB). There is a paucity of data on the experiences with menses of AYA women with cancer, their risk for HMB, and how they perceive menstrual suppression. Objective: This study aimed to (1) describe the attitudes and experiences of AYA women with a history of cancer regarding their menses and menstrual suppression and to (2) investigate facilitators and barriers to improve this aspect of oncologic care. Design/Methods: AYA women with a history of cancer completed individual semistructured interviews regarding their experiences, attitudes, and preferences around menstrual health. Two independent reviewers conducted a thematic analysis of transcribed interviews to elicit major themes. Results: We interviewed 20 young women with a history of cancer (mean age 19.9 years) who were treated with chemotherapy within the past 5 years. Themes included the following: (1) negative feelings and worry about menstrual bleeding; (2) positive attitudes toward menstrual suppression; (3) misconceptions about menstrual health; and (4) desire for tailored discussions about menstrual suppression. Conclusions: AYA women with a cancer history elucidate clear opinions regarding menstruation during chemotherapy, and many hold misconceptions regarding menses and menstrual suppression. Enhanced patient-provider communication and patient educational resources around menstrual health and menstrual suppression are needed to improve comprehensive oncologic care during chemotherapy.

A qualitative study of sexual and reproductive health communication with adolescent and young adult oncology patients.

BACKGROUND: Adolescent and young adult patients with cancer (AYAs) identify sexual and reproductive health (SRH) as an important but often neglected aspect of their comprehensive cancer care. The purpose of this study was to explore AYA perceptions and experiences of SRH communication with oncology clinicians. METHODS: Twenty-three AYA patients and survivors ages 15-25 years from a large academic oncology center participated in semistructured qualitative interviews investigating their experiences discussing SRH issues, including specific topics discussed, conversation barriers and facilitators, suggestions for clinicians on how to improve conversations, and education and resource needs. Interviews were audio recorded, transcribed, and coded using a thematic analysis approach. RESULTS: Interviews with AYAs revealed two primary themes-a need for oncology clinicians to discuss SRH and critical gaps in current SRH communication practices. AYAs reported a need for improved SRH communication for the purposes of general education, addressing specific SRH issues experienced, and understanding the long-term impact of cancer and treatment on SRH. The current communication gaps are exacerbated by patient discomfort initiating conversations and the presence of family members. AYAs shared six key recommendations for clinicians on how to improve SRH communication. CONCLUSIONS: AYAs identify a role for oncology clinicians in discussing SRH as a primary aspect of comprehensive health care during cancer treatment and in survivorship; however, multiple gaps and barriers interfere with such discussions. Future efforts must focus on clinician education and training in SRH as well as education and intervention opportunities for AYAs to optimize the care provided.

Barriers and facilitators to sexual and reproductive health communication between pediatric oncology clinicians and adolescent and young adult patients: The clinician perspective.

BACKGROUND: Sexual and reproductive health (SRH) is identified by adolescent and young adult (AYA) patients with cancer as an important but often neglected aspect of their comprehensive cancer care. The purpose of this study was to investigate the attitudes and perceptions of pediatric oncology clinicians towards discussing SRH with AYAs, and to understand perceived barriers to effective communication in current practice. PROCEDURE: Pediatric oncology clinicians (physicians, certified nurse practitioners, and physician assistants) participated in semi-structured qualitative interviews investigating attitudes about SRH communication with AYAs and barriers to such conversations. Twenty-two clinicians participated from seven institutions in the Northeastern United States. Interviews were audio-recorded, transcribed, and coded using a thematic analysis approach. RESULTS: Interviews with pediatric oncology clinicians revealed the following five primary themes: the role for pediatric oncology clinicians to discuss SRH, the focus of current SRH conversations on fertility, the meaning of "sexual health" as safe sex and contraception only, clinician-reported barriers to SRH conversations, and the need for education and support. Communication barriers included lack of knowledge/experience, lack of resources/referrals, low priority, parents/family, patient discomfort, clinician discomfort, time, and lack of rapport. Clinicians identified resource and support needs, including formal education and SRH education materials for patients and families. CONCLUSIONS: Although the study participants identified a role for pediatric oncology clinicians in SRH care for AYA patients with cancer, multiple barriers interfere with such discussions taking place on a regular basis. Future efforts must focus on resource development and provider education and training in SRH to optimize the care provided to this unique patient population.

Adolescent patient involvement in discussions about relapsed or refractory cancer with oncology clinicians.

BACKGROUND: Adolescents with cancer report a strong desire to be actively involved in personal healthcare decision making. The purpose of this study was to examine adolescent cancer patients' involvement in conversations about relapsed and refractory disease, to characterize the content of patient-clinician communication, and to identify opportunities for improved patient-clinician communication. DESIGN/METHOD: We analyzed audiotaped conversations between clinicians, parents, and adolescents with relapsed or refractory cancer. Of 36 conversations audiotaped for a larger study, 11 included adolescents ages 12 through 17 years. RESULTS: Adolescents were responsible for a mean 3.5% of total words spoken (range 0.6-10.0) in each discussion about relapsed or refractory cancer, whereas clinicians were responsible for 66.9% of total words spoken (range 39.5-87.1) and parents were responsible for 30.4% of total words spoken (range 10.9-59.1). Most clinician communication directed at the adolescent involved giving information (27.5%), engaging in social/personal conversation (21.2%), asking about medical history questioning (15.6%), and performing a clinical examination (15.4%). Adolescent communication directed at the clinician was predominantly classified as giving information in response to physician questioning (61.9%). In four of the 11 cases, clinicians sought adolescent opinions or preferences regarding next steps of care; adolescents only shared their preferences when asked directly. CONCLUSIONS: Adolescent patient involvement in conversations about relapsed or refractory cancer is limited and often focused on responding to questions and participating in the history questioning and physical examination. Adolescents play a more active role in conversations about their cancer care when clinicians direct communication toward them. This study highlights opportunities for clinicians to actively engage adolescents in discussions about their medical care.

Hormonal Changes and Sexual Dysfunction.

Sexual dysfunction is a common concern for many patients with cancer after treatment. Hormonal changes as a result of cancer-directed therapy can affect both male and female sexual health. This has the potential to significantly impact patients' quality of life, but is underreported and undertreated in the oncology setting. This review discusses commonly reported sexual issues and the role that hormonal changes play in this dysfunction. Although medical and psychosocial intervention strategies exist, there is a clear need for further research to formally develop programming that can assist people whose sexual health has been impacted by cancer treatment.