Unmet Reproductive Health Care Information Needs of Female Young Adult Survivors of Childhood Cancer: Oncology Providers’ Perspectives

Abstract

This study aimed to characterize unmet reproductive health needs of female young adult survivors of childhood cancer (YASCC), as understood by oncology providers (N = 10) caring for this patient population. Providers completed brief online questionnaires and a one-time semi-structured interview. Descriptive statistics characterized quantitative data, and rapid qualitative analysis identified themes in interview data. In survey data, providers rated fertility as a top concern among YASCC. Qualitative data identified specific under-addressed reproductive and sexual health information needs for patients and also for their providers. The results provide preliminary knowledge to inform the development of behavioral interventions to address patients’ unmet needs.

Introduction

Female (sex assigned at birth) young adult survivors of childhood cancer (YASCC) are a growing population who face deleterious long-term or late effects of their cancer treatments.¹ Reproductive health late effects, including impaired fertility, profoundly affect the lives of many YASCC^2,3 and are especially distressing for women.^4,5 About 40%–50%^5,6 of female YASCC report uncertainty about the impact of cancer treatments on fertility, and many endorse unmet fertility information needs^7–9 (e.g., understanding infertility risk/prognosis^6,7). This uncertainty and having unmet fertility information needs may lead to fertility-related distress^7,10 that affects survivors’ quality of life.⁴ For example, survivors with uncertain fertility status may experience fear and sadness about the possibility of not having biological children, the impact of their cancer history on their children’s health, or having pregnancy complications.⁷

Provision of risk-based fertility-related information and associated emotional support is a critical component of the long-term care of female YASCC. Unfortunately, cancer survivors describe poor communication about fertility and a lack of education and support from their medical team regarding infertility risk.^7,8 Female YASCC report receiving less fertility-related information than males^8,10 and desire both improved access to fertility-related information and communication with medical providers about fertility.¹⁰

As part of a larger ongoing study aimed at developing a behavioral intervention to address the reproductive health needs of female YASCC, the purpose of this study was to characterize oncology providers’ perceptions of unmet reproductive health information needs of female YASCC. We also aimed to characterize medical providers’ information needs to assist with better addressing survivors’ reproductive health concerns.

Methods

Setting and participants

Study procedures received Institutional Review Board approval (Pro00109631). Oncology providers (N = 10) were eligible to participate if they were involved in the care of female YASCC.

Purposive sampling was used to identify potential participants at a National Cancer Institute (NCI)-designated Comprehensive Cancer Center. Recruitment emails were sent to 34 providers, which included information about the study purpose and procedures. Ten providers (29.4%) completed written informed consent and participated in the study. Of the remaining 24 providers, 13 (54.2%) were unable to be reached; 10 were ineligible, indicating that they did not provide care to this patient population; and 1 declined, indicating that they were unavailable to participate. After 10 interviews, no new themes emerged from the data, which is consistent with other research suggesting that most themes can be generated after 6–12 qualitative interviews.^11,12

Procedures

Individual interviews were completed via Zoom by J.M.S., a female, PhD-level clinical psychologist with prior training and expertise in psycho-oncology and conducting qualitative interviews. No information was shared about the interviewer beyond her name and credentials. Interviews assessed (1) providers’ perceptions of unmet reproductive health information needs of female YASCC and (2) providers’ unmet information needs and resources needed to better address patients’ concerns, among other topics not presented in this study. Interviews were 27–52 (M = 36.1) minutes long and were audio-recorded. The interviewer took field notes during each interview.

A semi-structured interview guide was used to conduct interviews (see Supplementary Appendix SA1). The guide was developed based on a review of related literature and feedback from content area experts in oncofertility (K.A.), psycho-oncology (C.S.D., R.A.S.), and adult survivors of childhood cancer (K.O.). The guide was then refined in collaboration with a qualitative methods expert (J.S.). COREQ guidelines¹³ around the research team and reflexivity, study design, and analysis and findings were followed, as applicable.

Prior to the interview, providers also completed an online survey via REDCap, about their experiences caring for female YASCC. Providers were compensated $20 in appreciation for their time.

Survey measures

Sociodemographic and clinical practice items

Participants reported their age, race, ethnicity, and gender. They were also asked questions about their clinical practice: (1) highest degree, (2) years in practice, (3) specialty, (4) primary disease area/subspecialty, (5) age range of their patients, and (6) and prior reproductive health training(s).

Providers’ perceptions of YASCC top concerns and the importance of including reproductive and sexual health topics in YASCC programming initiatives

Providers were asked to rate their perceptions of how concerned YASCC are about potential long-term treatment effects (e.g., pain, fatigue, sexual problems, fertility). Providers also rated their perceptions about the importance of including specific reproductive and sexual health topics in educational and supportive programming initiatives for YASCC. These reproductive and sexual health topics were generated by content area experts on the study team. Items were rated on a 5-point Likert-type scale ranging from 1 to 5, with higher scores indicating the topic to be perceived to be of greater concern by YASCC or importance, respectively.

Data analysis

Descriptive statistics characterized providers’ sociodemographic and clinical practice characteristics. Interviews were transcribed using the Zoom transcription function, and transcriptions were compared with audio files to confirm accuracy. Qualitative data were analyzed using rapid qualitative analysis, a rigorous approach to analyzing qualitative data that are efficient and minimize research costs.^14–16 Qualitative data were entered into a template developed by two study team members (J.M.S. and S.D.). The template was organized by domains informed by the semi-structured qualitative interview guides.^14–16 J.M.S. and S.D. met regularly to discuss any discrepancies in the use of the template and incorporate data-driven domains that emerged throughout analysis. Data from the templates were entered into a summary matrix, which outlined interview domains by respondent. Direct quotes are used minimally in rapid qualitative analysis; paraphrasing of participants’ ideas is used to create a streamlined but thorough summary of the data¹⁵ that could be utilized to inform behavioral intervention development.

Results

Participant characteristics

Providers were aged 48.29 years on average (standard deviation [SD] = 13.72), and 60% identified as female. One hundred percent of the sample identified as White and non-Hispanic. The sample was comprised of medical doctors (n = 7), nurse practitioners (n = 2), and a registered nurse (n = 1). Participants had been in practice on an average of M = 16.5 years (SD = 13.25; see Table 1).

Table 1.

Provider Sociodemographic and Clinical Practice Characteristics (N = 10)

Characteristic	Mean (SD/n)/Percentage
Age	48.29 (13.72)
Race	100% White
Ethnicity	100% non-Hispanic
Gender	40% Male
Gender	60% Female
Education	70% MD
	20% NP
	10% RN
Years in practice	16.5 years (13.25)
Specialty	90% Oncology
Specialty	10% Primary care
Subspecialties	Breast (n = 2)
	Gynecological (n = 1)
	Gastrointestinal (n = 1)
	Sarcoma (n = 2)
	Brain and spinal cord (n = 2)
	Urologic (n = 1)
	Pediatric (n = 8)
	Pediatric bone marrow transplant (n = 1)
Age range of population served	0–17: 67.00%
	18–44: 25.90%
	45–64: 3.50%
	65+: 0%
Types of prior fertility-related trainings received	None: 0%
	Didactics: 30%
	Continuing education: 60%
	Lecture/Grand Rounds: 80%
	Conferences: 70%
	Workshops: 10%
	Self-instruction: 90%
	Research-related training: 10%
	Other: 0%
Types of prior sexual health-related trainings received	None: 30%
	Didactics: 0%
	Continuing education: 50%
	Lecture/grand rounds: 40%
	Conferences: 40%
	Workshops: 20%
	Self-instruction: 50%
	Research-related training: 0%
	Other: 0%

MD, medical doctor; NP, nurse practitioner; RN, registered nurse; SD, standard deviation.

Quantitative results

Providers’ perceptions of YASCC greatest concerns

Providers reported fertility as a top patient concern (3.7/5; see Table 2).

Table 2.

Provider Perceptions of Top Concerns for Adult Survivors of Childhood Cancer

Concern	Mean (SD)
Pain	3.00 (0.82)
Fatigue	3.20 (0.92)
Emotional stress/distress	3.60 (0.97)
Cognitive	3.70 (0.68)
Sleep	3.30 (1.06)
Fertility	3.70 (0.68)
Sexual health	3.50 (0.85)
Peer	3.50 (0.85)
Romantic	3.33 (0.87)
Family	3.11 (0.60)
Finances	3.30 (0.68)
Return to work school	3.60 (0.52)

Providers’ perceptions of the importance of reproductive and sexual health topics in YASCC programming initiatives

Providers’ perceptions of patients’ top fertility-related information needs were (1) how cancer or cancer treatment may have affected fertility (4.3/5) and (2) factors besides cancer that may affect fertility (e.g., weight; 4.1/5). Providers’ perceptions of patients’ top sexual health-related information needs were (1) sexual health changes due to cancer (4.5/5) and (2) resources for sexual health-related emotional support (4.4/5; see Table 3).

Table 3.

Reproductive and Sexual Health Topics of Greatest Importance in Supportive Programming for Adult Survivors of Childhood Cancer

Reproductive health topics	Mean (SD)
How cancer or cancer treatment may have affected fertility	4.30 (0.95)
Health factors besides cancer that may affect fertility (e.g., other health conditions, weight)	4.10 (1.00)
Basic information about reproductive function	3.90 (1.10)
Their personal ability to have biological children	3.80 (1.32)
The fertility evaluation process	3.90 (1.00)
Fertility preservation options following the completion of cancer treatment	3.70 (1.57)
Fertility treatment options (e.g., in vitro fertilization)	4.10 (1.10)
Adoption	3.60 (1.08)
Resource for fertility-related emotional support	4.00 (1.33)
Resources for fertility-related financial support	4.00 (1.16)
Understanding which providers care for patients with fertility concerns	3.90 (1.10)

Sexual health topics	Mean (SD)
Basic information about human sexual function	3.60 (0.97)
Sexual health changes that may occur due to cancer	4.50 (0.53)
Resources for sexual health-related emotional support	4.40 (0.70)
Understanding which providers care for patients with sexual health concerns	4.10 (0.88)
Sexually transmitted infections	3.70 (0.95)
Treatments for sexual dysfunction	4.30 (0.82)
Safe sex practices	3.70 (0.95)

Qualitative results

Area 1: Patients’ unmet reproductive health information needs

Providers acknowledged that female YASCC experienced significant unmet reproductive health information needs across four key domains. 1.

Foundational reproductive and sexual health information: Providers reported YASCC to have unmet information needs related to general reproductive and ovarian function, menstruation, and menopause, as well as factors outside of cancer that may affect family building (e.g., partner’s fertility). They described that patients may also benefit from sex education and information about contraception.

Potential impacts of cancer treatment on reproductive and sexual health and implications for family building. Providers endorsed YASCC to have a lack of understanding about their risks for impaired fertility resulting from their cancer treatments, their likelihood of natural conception, “red flags” that may indicate impaired fertility (e.g., period not returning after treatment), the impact of puberty status at the time of cancer treatment on fertility and the development of sex characteristics, and how cancer treatments can affect sexual function. Providers noted that patients would benefit from information about how long they should wait to attempt natural conception after treatment completion. Also, providers noted that patients needed to learn about how information highlighting medicine is an imperfect science, which leads to estimates of risks rather than guarantees about cancer treatment-related risks for impaired fertility.

Logistics of pursuing fertility evaluations and family building support: Providers described that patients had unmet information needs about the components of a fertility evaluation, the timeline for fertility evaluation, where to go and who to contact about fertility concerns, fertility treatment options and available supports (e.g., emotional, financial), and support for couples around fertility for partnered patients.

Cancer risk for both their offspring and themselves: Providers noted that patients experienced uncertainty about both their own risk for cancer recurrence during and resulting from pregnancy. In addition, providers believed patients have concerns about the cancer risks posed to their biological children.

Area 2: Information and supports needed for medical providers to better address patients’ concerns

Providers reflected on their own need for information and support to better address unmet reproductive and sexual health information needs of female YASCC. 1.

Unmet information needs: Providers wanted additional information about patients’ risks for reproductive health and sexual health late effects, how fertility risks are categorized, how and what to communicate with patients about fertility risks, fertility treatment options after cancer, fertility preservation, and available fertility support services.

Logistical support needs: Providers described unmet needs regarding how and where to refer patients who have reproductive health concerns, tools to learn about patients’ fertility concerns to help guide fertility-related discussions, and wanting a reminder in the electronic medical record to inquire about fertility concerns. Relatedly, one provider indicated that a mobile application may be useful in helping providers to remember the many late effects, including reproductive health late effects, patients may experience.

Discussion

This is among the first qualitative studies to capitalize on interviewing oncologists with expertise in the care of YASCC to characterize patients’ unmet reproductive health information needs and associated information needs of providers. Consistent with prior research conducted with patients from this population,⁹ providers echoed many areas in which patients have unmet reproductive health needs. Of note, providers highlighted unmet needs related to sexual health information and support in addition to reproductive health of YASCC. Approximately 52%–57%^17,18 of female YASCC report sexual dysfunction. Sexual and reproductive health concerns often occur in tandem and are critically important topics to address among young patients with cancer. Many YASCC are in a life stage in which sexual maturation, exploration of intimate relationships, and reproductive health decision making are key developmental milestones.¹⁹ Inclusion of sexual health topics may be an important consideration in educational and behavioral interventions designed to address unmet reproductive health concerns of YASCC.

Participants also highlighted that oncology providers require more information about reproductive health late effects as well as additional logistical supports (e.g., improved screening tools) to facilitate improved communication and patient care. This is consistent with a recent publication highlighting a lack of information about reproductive health after cancer among oncology providers in a self-described, modestly resourced cancer center.²⁰ Even among oncology providers in our NCI-designated Comprehensive Cancer Center, with dedicated Teen and Young Adult Oncology and Oncofertility Programs, there is still a need for greater information and support to help providers address YASCC reproductive health concerns. Results likely generalize to both high- and low-resourced cancer settings and suggest a need for enhanced education and support for medical providers to better equip them to address the reproductive health concerns of their patients.

Limitations

The modest sample of oncology providers was recruited from one large academic medical center and was a homogeneous group based on race and ethnicity, factors that may limit generalizability. In addition, the data presented in this study did not include patients’ perceptions of their unmet reproductive health information needs; this will be a critical next step that is needed prior to intervention development.

Future research and clinical directions

This study provided a foundation on which to build additional research aimed at understanding and addressing the unmet reproductive and sexual health information and support needs of female YASCC. An important next step, currently underway by the research team, is to interview YASCC to learn more about their unmet reproductive and sexual health information needs. The information gleaned from both providers and patients will help to inform the development of patient- and provider-level behavioral interventions to address unmet reproductive and sexual health care needs of YASCC and the medical providers who care for this patient population.

Conclusions

Medical providers who care for female YASCC highlighted specific under-addressed reproductive and sexual health information needs of the patient population. Results provide important information that will inform efforts to improve education and supportive programming to address these highly sensitive and value-laden long-term effects of cancer and cancer treatments.

Footnotes

Authors’ Contributions

J.M.S.: Conceptualization, formal analysis, funding acquisition, investigation, methodology, project administration, visualization, writing—original draft, and writing—reviewing and editing. C.S.D.: Conceptualization, and writing—reviewing and editing. S.D.: Formal analysis and writing—reviewing and editing. K.A.: Writing—supervision, reviewing, and editing. J.S.: Methodology and writing—reviewing and editing. J.T.W.: Conceptualization and writing—reviewing and editing. J.P.V.: Conceptualization and writing—reviewing and editing. C.C.: Conceptualization and writing—reviewing and editing. K.O.: Conceptualization, supervision, and writing—reviewing and editing. R.A.S.: Supervision, project administration, and writing—reviewing and editing.

Author Disclosure Statement

The authors have no conflicts of interest to disclose.

Funding Information

This work was funded by the National Institutes of Health [F32CA265054].

Supplementary Material

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Supplementary Material

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