Fertility Preservation Decisional Turning Points for Adolescents and Young Adults With Cancer: Exploring Alignment and Divergence by Race and Ethnicity

PURPOSE

For adolescents and young adults (AYAs) with cancer, fertility preservation (FP) decision making is complex and distressing. Racial/ethnic minority (REM) AYAs experience disparities in FP awareness, uptake, and outcomes. A turning point (TP) is a point of reflection, change, or decisive moment(s) resulting in changes in perspectives or trajectories. To enhance understanding of AYAs' diverse experiences, this study examined alignment and/or divergence of FP decisional TPs among non-Hispanic White (NHW) AYAs and REM AYAs.

METHODS

Qualitative semistructured interviews were conducted in person, by video, or phone with 36 AYAs (20 NHW and 16 REM [nine Hispanic and seven Black/multiracial Black). The constant comparative method was used to identify and analyze themes illustrating participants' conceptualization and/or experience of FP decisional TPs.

RESULTS

Seven thematic TPs emerged: (1) emotional reaction to discovering FP procedures exist; (2) encountering unclear or dismissive communication during initial fertility conversations with health care providers; (3) encountering direct and supportive communication during initial fertility conversations with health care providers; (4) participating in critical family conversations about pursuing FP; (5) weighing personal desire for a child against other priorities/circumstances; (6) realizing FP is not feasible, and (7) experiencing unanticipated changes in cancer diagnosis or treatment plans/procedures. TP variations include REM participants reported dismissive communication and suggested cost was prohibitive. NHW participants emphasized more forcefully that biological children may become a future priority.

CONCLUSION

Understanding how clinical communication and priorities/resources may vary for NHW and REM AYAs can inform future interventions aimed at reducing health disparities and enhancing patient-centered care.

AYA cancer patient accounts of fertility preservation decisional turning points vary by race/ethnicity.

INTRODUCTION

Approximately 90,000 adolescents and young adults (AYAs; age 15-39 years) are diagnosed with cancer annually,¹ which can significantly affect multiple health-related quality-of-life domains, including fertility.² For AYAs with cancer, fertility preservation (FP) decision making can be complex and distressing. Numerous professional guidelines exist to enhance communication between patients and health care providers about cancer-related infertility and options for FP,^3,4 but care in this area is often insufficient or unclear.⁵

CONTEXT

• Key Objective

• What important fertility preservation (FP) decisional turning points (TPs) do adolescents and young adults (AYAs) with cancer experience and do these TPs align and vary for non-Hispanic White AYAs and racial/ethnic minority AYAs?

• Knowledge Generated

• AYAs in both groups shared many of the same TPs with three differences related to dismissive communication, cost, and future biological parenthood priorities.

• Relevance

• This preliminary work supports the utility of exploratory clinical communication practices to support health equity: (1) Assess current knowledge, knowledge source, and feelings about fertility threat and FP options, (2) Elicit AYAs' FP information needs and how they interpret FP information provided, (3) Convey compassionate messages that facilitate disclosure and shared decision-making, (4) Explore how family affects AYA FP thoughts, feelings, and decisions, (5) Examine how AYA priorities and feasibility assessments shape FP decisions, and (6) Explain cancer and/or FP treatment complications/changes that may occur and help patients process disruption to FP plans.

Although this negatively affects the AYA cancer community at large, racial/ethnic minority (REM) AYA patients face additional barriers. Previous work suggests REM adults, when compared with non-Hispanic White (NHW) adults, are less likely to be informed about cancer-related infertility, more likely to experience infertility and a lack of treatment, and more likely to experience disparities in FP access, which may compound differences in uptake.^6-9 When REM patients undergo FP, they suffer from infertility longer before receiving care compared with NHW patients.¹⁰ Poor communication may exacerbate these challenges. Research has found encounters with Black patients are shorter, and include less physician information-giving and fewer patient questions than with White patients, accentuating the key role of effective communication.^11-14

Cancer and related infertility disrupt normal developmental tasks and milestones associated with AYAs such as identity exploration and formation, transition, and building a foundation for the future.^15,16 For many AYAs, experiencing cancer-related infertility is often characterized by multiple challenging turning points (TPs). TPs are a conceptual lens used in developmental lifespan approach and are defined as a particular event, interaction, experience, moment, or awareness that results in changes in perspective, pathways, or trajectories over the long term.¹⁷ TPs can be affective, cognitive, and/or behavioral, and are often informed by socioecologic factors such as demographic, psychological, social, or economic conditions.^18,19 TP trajectories are not always linear: one can move forward and then return to earlier TPs, which may or may not be altered or recoverable.

TPs in cancer-related infertility and FP are currently understudied in clinical practice and merit further investigation, given their potential to serve as identifiable targets of clinical intervention.^17,20 The purpose of this qualitative study is to explore ways in which AYAs with cancer may experience TPs throughout FP decision making with a particular focus on TP similarities and differences between NHW and REM patients.

METHODS

Qualitative methods are uniquely suited to examine how participants experience, behave in, and interpret meaningful events.²¹ They have long been recognized as foundational approaches for eliciting the participant voice, particularly for groups like AYAs, those living with health conditions or disabilities, and REM groups for whom power dynamics and marginalization may restrict their representation.²²

Setting and Participants

After institutional review board approval (no. 00044525), AYAs with cancer were recruited from comprehensive cancer centers in the Southeastern and Midwestern United States. Most participants came from medically underserved (98%) and rural (60%) catchment areas. Eligible participants met the following criteria: (1) age 15-39 years, (2) able to read and understand English, and (3) currently receiving cancer treatment, or within 5 years of concluding treatment. Participants were identified through electronic medical records and provider referrals. Purposive sampling was used to recruit a racially/ethnically diverse sample. AYAs were provided $50 US dollars cards as compensation for participation.

Informed consent was obtained from all individual participants included in the study. This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the institutional review board (approval no. 00044525).

Data Collection

In-depth semistructured interviews lasted an average of 60 minutes. They were audio-recorded and conducted by researchers trained in qualitative methods in person (n = 29) or via video/phone conference (n = 7). The interview guide was organized using a funnel approach in which broad exploratory questions eliciting unique understanding of critical FP experiences were followed by focused inquiries allowing pursuit of emerging areas of insight. Follow-up questions expanded on notable areas of significance identified through previous research (eg, psychosocial impact, relationship concerns, and communication with providers).^23,24 Data analysis processes ran concurrently with data collection, which served as a verification strategy.²⁵ See the Data Supplement (online only) for interview script.

Data Analysis

Audio recordings were transcribed verbatim. The constant comparative method was used to identify thematic TPs that characterize AYA FP decision making (eg, participant identified important event, interaction, experience, moment, or awareness that shaped FP decision making). Analyses were stratified by participant group (NHW and REM). Codes were created and assigned to illustrate TPs. From these, thematic TPs and their dimensions were generated and refined until easily distinguishable and succinct. Data were systematically compared to identify where accounts merged and diverged by subgroup. Thematic saturation was determined using the criteria proposed by Lasch et al²⁶ and Owen's²⁷ seminal benchmarks of recurrence, repetition, and forcefulness. COREQ guidelines for qualitative research were followed at each stage of the research process.²⁸

RESULTS

The response rate for this study was 36/68 (53%). In total, 36 participants were interviewed (NHW n = 20; REM n = 16) with an average of 24.5 (range, 16-39) and relatively similar total representation of males and females (44% and 56%, respectively). Sixty-seven percent of AYAs discussed FP (NHW = 65%; REM = 69%) and 39% of AYAs attempted FP (NHW = 40%; REM = 38%). See Table 1 for full demographic and clinical information.

TABLE 1.

Patient Characteristics by Group (N = 36)

Seven thematic TPs emerged that characterize AYAs' FP experiences. Theme labels are italicized below. See Appendix Table A1 (online only) for thematic TPs, dimensions, exemplar quotes, and variation by racial/ethnic group and sex. Thematic TPs are ordered to convey the way they emerged temporally within the data.

Findings revealed that participants from both AYA racial/ethnic groups reported emotional reactions to discovering FP procedures exist. They described critical moments characterized by surprise at discovering procedures; uncertainty about FP decisions; gratitude that FP procedures may be options; and confusion regarding FP limitations.

Participants described encountering unclear or dismissive communication during initial fertility conversations with health care providers. During these conversations, many participants from both racial/ethnic groups described a lack of information, which was commonly interpreted to indicate that FP was not possible or required. Participants in both racial/ethnic groups also reported that they received mixed messages in conversations with providers about FP: one provider would advise them to pursue FP, while another would discourage FP or imply it was not needed. Only REM participants reported dismissive communication (eg, emphatically insisting they should not become pregnant, given their cancer status), which deterred them from eliciting additional FP information.

A critical TP for FP decision making was encountering direct, supportive communication during initial fertility conversations with health care providers. Both NHW and REM participants reported critical conversations in which providers discussed how cancer treatments can threaten fertility, coordinated appropriate referrals, and outlined steps in the FP process (eg, “If we do FP, these are the options, and this is what will happen”).

Another TP reported by both racial/ethnic groups was participating in critical family conversations about pursuing FP. Although some reported nonjudgmental family support during these conversations, others suggested their family's concerns trumped their personal FP preferences (eg, family feared for the person's life if treatment was delayed for FP). Participants also reported that, regardless of medical advice, parents sometimes suggested they did not need to worry (eg, “You're going to be able to have babies. Everything is okay”).

Many participants in both racial/ethnic groups described TPs related to weighing personal desires for children against other priorities/circumstances. Some NHW and REM participants reported a pre-existing lack of interest in having biological children or more children (eg, “Done having kids”). Others suggested their desire to have biological children or more children was a critical factor (eg, “I knew I wasn't putting anything [about my ability to have children] in jeopardy”). During these moments, several NHW and REM participants discussed undergoing FP if biological children became a priority or to be open-minded about the future. This idea appeared more regularly and forcefully in NHW interviews. Both racial/ethnic groups described TPs related to weighing priorities and making FP split-second decisions with unanswered questions. Finally, AYAs from both racial/ethnic groups reported difficulty weighing the decision because of cost. However, NHW participants consistently reported a tendency to pursue FP despite the high cost (eg, “It's expensive…but a no brainer”).

One TP that participants from both racial/ethnic groups reported was when they realized FP is not feasible. NHW and REM participants reported they were unable to pursue FP because of the pace of treatment. Only REM participants reported cost would ultimately be prohibitive for them. Cost was often a significant challenge in NHW participants but not reported as determinative factor except in one discrepant case.

A final TP that participants in both racial/ethnic groups reported was experiencing unanticipated changes in their cancer status or cancer/FP treatment plans that altered their FP options. Participants reported changes in their cancer diagnosis (eg, initially misdiagnosed with less aggressive cancer) that prevented them from pursuing FP after they made the decision to do so. Others described complications/changes during cancer surgery (eg, decision to remove only one ovary) or FP procedures (eg, decision to remove a larger portion of the uterus during a fertility sparing surgery) that altered their FP trajectories.

DISCUSSION

To our knowledge, this is the first study examining TPs in FP decision making for NHW and REM AYAs with cancer. All participants reported emotional reactions to discovering FP, supportive communication in health care provider interactions, critical family conversations, and changes in medical plans that affected FP. However, three sources of variation emerged among NHW and REM participants: (1) REM participants reported dismissive communication, (2) REM participants suggested FP cost was prohibitive, and (3) NHW participants emphasized more regularly and forcefully that biological children may become a future priority. In subsequent paragraphs, study themes are integrated into existing communication frameworks (patient-centered communication²⁹ and the AIDED approach³⁰) to place them into better context for improving quality of care and reducing health disparities.

The patient-centered communication approach to cancer care emphasizes honoring the individual, eliciting patient perspectives, and communicating to arrive at shared decisions aligned with a patient's values. Patient-centered communication functions include (1) exchanging information; (2) fostering healing relationships; (3) managing uncertainty, (4) recognizing and responding to emotions; (5) making decisions, and (6) enabling self-management²⁹ The AIDED approach to fertility conversations focuses on (1) assessing patient understanding; (2) introducing the topic; (3) describing fertility impact and options; (4) explaining the FP timeline, and (5) discussing information and support resources.³⁰

It is important to note this initial study is a preliminary exploration of TPs for diverse AYAs. As such, design limitations exist that emphasize the need to provide individualized care for every AYA. And although oncofertility care is nuanced due to numerous clinical and socioecologic patient factors, on the basis of our emergent findings, the following paragraphs offer insight grounded in the lived experiences of our participants. Proposals are offered as evidence-based ideas/propositions for future studies and resources for discussion and deliberation when providing individualized fertility care.

Consistent with prior studies, participants described TPs related to (1) evolving emotional reactions (eg, surprise, uncertainty) that may shift during clinical interactions.⁵ This study also highlights that (2) participating in clinical conversations in which they received no or mixed FP messages from one or more providers. These data suggest it is critical to avoid assumptions about what AYAs may feel or know about FP. The AIDED approach suggests it is important to first assess patients' current knowledge regarding diagnosis and its potential impact on fertility as well as their FP expectations.^30,31 Providers can assess the source or basis of this knowledge to uncover potential communication discrepancies among providers. Increased coordination of care efforts regarding FP decision making is warranted to ensure AYAs receive consistent messaging to fully participate in decisions about fertility.

Participants suggested that clinical conversations in which they received unclear/confusing information from a provider shifted their FP decisional trajectory. This led some to question the value of pursuing FP or arrive at the conclusion FP may not be necessary or available. Others proceeded with FP but reported lingering concerns about fertility potential and how/if FP worked. The AIDED approach suggests that effective conversations about fertility include explaining why the topic of fertility is being discussed, why it is relevant to that patient's case, and a description of available options to assess current fertility and future biological and nonbiological parenting options.³¹

Communication is not a one-way process. Providers need support and education to elicit AYA beliefs, values, and preferences surrounding fertility. Patient-centered communication suggests that patient-provider communication should focus on the exchange of information between patient and provider as opposed to viewing the patient primarily as an information recipient.²⁹ Providers can use targeted open-ended questions to capture AYA preferences for types of FP information (eg, risks, process, and outcomes) and delivery of information (eg, amount or depth of information and mode of delivery).³² Communication strategies such as the teach-back method can help providers communicate desired information in digestible portions and explore how information is being interpreted to confirm mutual understanding.³³

Although it may not be feasible or appropriate for a given provider to engage in all aspects of fertility care, providers can be prepared to have initial conversations about gonadotoxic effects, to outline strategies for FP, and to assess patient desire for further information. Doing so will allow them to make timely referrals to specialists for more detailed conversations. Explaining the rationale and process for referrals can support patient comprehension, self-efficacy, and health care system navigation.³² When fertility specialist care is not available at local cancer centers, patient navigators can be used to connect AYAs with potential fertility resources.^32,34

REM AYAs in this sample reported insensitive communication practices during a critical clinical conversation, in which they felt providers dismissed or dehumanized them. For example, recommendations to refrain from biological parenthood were communicated forcefully without explanatory information, individualized attention, or caring/supportive affect. This may lead to REM AYAs feeling singled out for judgment (eg, “There's a lot of people who've had breast cancer and have had babies.” REM, 1307, F). This is especially problematic when communicating with AYAs from REM groups who are more likely to have a history of medical mistrust, discrimination, and marginalization.^6,11,12 Providers may find it useful to explain why they are making specific recommendations and normalize fertility issues. These strategies have the potential to encourage sharing and validate REM perspectives amid a medical culture that has historically muted them.³⁵ Furthermore, to improve care for all AYAs, but particularly for REM AYAs, patient-centered communication is warranted. It suggests providers should propose questions that can be used to learn distinct, patient-specific meanings in clinical interactions such as “What do you think about…? What does this mean for you? What would happen if…?”^36,37

Patient-centered communication and family system approaches stress that patients do not experience health and illness in a vacuum. Rolland³⁸ describes the interaction of the provider, the patient, the illness, and the family as the therapeutic quadrangle. Participants identified critical family conversations (inside and outside of the clinic), which influenced their subsequent thoughts, feelings, and behavior. Patients bring loved ones/family caregivers to medical appointments up to 60% of the time (a percentage that is likely higher for AYAs).^39,40 Prior research suggests loved ones/family caregivers can support patient understanding of medical information, but they can also create conflict.^41,42 AYAs suggested family caregivers supported them during decisional TPs but left the ultimate decision to them. Our data reveal family members may also be affecting FP decisional trajectories in potentially harmful ways when they suggest there is no need to be concerned about fertility risk regardless of medical advice. Providers should incorporate family members in the conversation (when AYAs desire this) and explore factors that shape patient thoughts, feelings, and decisions since patient and family goals may not be aligned. Doing this may help providers clarify FP preferences and reconcile potentially conflicting goals.⁴³

Participants described a moment or series of moments in which they weighed their desire for biological children against other priorities (such as cancer treatment) and the difficulties of pursuing FP. When desire or lack of desire for biological children was clear, these moments were relatively straightforward. For those without a clear goal in mind, this was more complex. Some who reported they did not currently desire biological children opted to pursue FP in case it became a priority in the future. This was reported less frequently in our REM sample, but reasons for this are unclear. Exploring the reasoning behind AYAs' decision-making processes in an accepting and nonjudgmental way may be helpful, particularly with vulnerable populations. Doing so will allow providers to identify additional barriers (such as timing, access, or financial issues) that might prevent AYAs from making FP decisions in line with their goals.

Participants suggested that the urgent need to begin cancer treatment limited their ability to make value-based decisions. Concordant with previous research, time barriers were particularly salient for women, as FP procedures for women are more time-intensive.^24,44 Those who opted not to pursue FP discussed how they decided cancer treatment plans were moving too quickly for FP to be feasible. The AIDED framework emphasizes the provider role of explaining the timeline for assessing fertility and pursuing FP and providing informational and psychosocial support for all patients.²⁹

Cost was also reported as a factor that complicated AYA's decisions. The necessity of making quick decisions at the same time AYAs learn about costs of FP procedures weighed greatly on them. However, other than one discrepant case, REM participants were the only ones to suggest cost was the decisive factor in not pursuing FP. This underscores the importance of informing AYAs about FP-related financial assistance options and asking open-ended question to elicit information about the extent to which cost is determinative. Previous research suggests that stigma/shame because of financial status deters disclosure.⁴⁵ It should not be assumed AYAs are not pursing FP because of lack of interest.

Participants described unexpected complications or changes to medical plans such as unanticipated changes in cancer diagnosis or treatment plans/procedures that shift their FP trajectory. Although these events may prevent many from pursing their desired methods of FP, that does not mean clinical communication about fertility should cease. Patient-centered communication suggests that providers can support AYAs biopsychosocial health by talking openly, exploring concerns, validating feelings, coordinating therapeutic support, or connecting patients with resources to investigate other paths to parenthood.³⁰

This work is not without limitations. Although a diverse sample was recruited regarding demographic characteristics and medical history, a larger sample would allow for stratification by sex and racial and ethnic subgroups, providing further critical insights to inform more responsive approaches to care. Findings may also be shaped by an interaction between gender identity/biological sex and race/ethnicity (the NHW group slightly male-predominant, while the REM group was predominantly female).

Similarly, it was not possible to stratify findings by medical history. Although findings were not weighted to account for differential risks of infertility because of cancer type, stage, or treatment(s), clear and supportive communication from health care providers is essential regardless of a patient's risk of cancer-related infertility. The wide variation in intervals between diagnosis and interview may also have affected results. AYAs diagnosed closer to the interview time may have had better recall than those diagnosed in earlier years.

This study is cross-sectional. Future longitudinal evaluations of fertility decision-making experiences are needed to inform the creation of culturally and developmentally responsive interventions for a diverse array of AYAs with cancer (such as multidisciplinary physician communication trainings, and patient education and support trainings/resources such as digital tools to assist in fertility decision making).

In conclusion, quality FP decisions integrate clinical evidence and patient values and goals. This preliminary work highlights multiple TPs that shape AYAs FP decisional experiences. A comparison of NHW and REM AYA TPs suggests some differences related to interactions with providers, and AYA priorities/resources, which can be used to inform future research aimed at enhancing equitable, patient-centered care.

APPENDIX

TABLE A1.

AYA Thematic TPs That Shape the FP Decisional Trajectories

AUTHOR CONTRIBUTIONS

Conception and design: Mollie R. Canzona, David Victorson, Marla L. Clayman, Bonnie Patel, Denisha Little-Greene, John M. Salsman

Financial support: John M. Salsman

Administrative support: John M. Salsman

Collection and assembly of data: Mollie R. Canzona, Thomas W. McLean, Shannon L. Golden, Denisha Little-Greene, Siba Saker

Data analysis and interpretation: Mollie R. Canzona, Karly Murphy, David Victorson, Onengiya Harry, Marla L. Clayman, Shannon L. Golden, Carla Strom, John M. Salsman

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Fertility Preservation Decisional Turning Points for Adolescents and Young Adults With Cancer: Exploring Alignment and Divergence by Race and Ethnicity

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/op/authors/author-center.

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