Evaluating Maybe Later Baby,a Fertility Information Resource for Adolescents and Young Adults Diagnosed with Cancer: A Randomized,Controlled Pilot Study

Abstract

Purpose:

Fertility is a major concern for adolescents and young adults (AYAs, 15–30 years) diagnosed with cancer, yet they often report a lack of information and understanding about fertility impacts and preservation options. This study aimed to evaluate the acceptability and preliminary efficacy of Maybe Later Baby (MLB), an oncofertility information resource for AYAs diagnosed with cancer.

Methods:

In a randomized controlled trial, 13 participants received MLB alone and 10 received an augmented intervention involving an additional consultation with a health care professional (HCP). Pre- and postintervention surveys and interviews explored participants' well-being, fertility knowledge, health literacy, and experiences using the resource.

Results:

Participants indicated that the resource was accessible and understandable and provided valuable information without increasing distress. When averaged across conditions, functional health literacy (p = 0.006) and oncofertility knowledge (p = 0.002) increased, although there were no significant changes in fertility-related emotions (p > 0.05), and quality of life decreased (p = 0.014). While qualitative accounts suggested that HCP consultations were useful and validated participants' experiences and concerns, participants receiving the augmented intervention became more nervous/fearful about fertility treatment (p = 0.005). There were no other differences in outcomes between conditions.

Conclusions:

Young people diagnosed with cancer want and value information about oncofertility and resources such as MLB are acceptable and useful means of providing this information. This could be supplemented by clinical discussion to ensure that tailored situation-specific information is provided and understood and patient distress is appropriately managed.

Clinical Trial Registration number: 12615000624583.

Introduction

Both cancer and cancer treatments can impact fertility—for example, by interfering with the functioning or necessitating removal of reproductive organs, reducing egg-producing follicles or sperm count, damaging neuroendocrine pathways, or causing premature menopause.^1–4 Anywhere between 15%–20%⁵ and 70%–85%⁶ of all cancer survivors are estimated to have reduced fertility, which can significantly impact psychosocial well-being: fertility concerns are associated with increased depression, anxiety, and grief; can challenge gender identity; and may contribute to reduced relationship satisfaction and quality of life (QOL).^7–12

Fertility impacts are of particular concern to adolescents and young adults (AYAs, 15–30 years*) who have been diagnosed with cancer: early adolescents may be in the initial stages of exploring sexuality and relationships and have limited prior experiences around fertility, while older AYAs may be establishing more serious relationships and considering or planning to have children. Indeed, potential impacts on fertility are one of the most prominent concerns for this population, yet these risks and potential fertility preservation options are not always discussed with patients,^10,13–16 which can exacerbate psychosocial impacts.^3,13,17,18

Oncofertility information resources represent a promising avenue for people diagnosed with cancer to learn about cancer and fertility: they have been evidenced to reduce distress, improve QOL, and increase confidence to manage sexual changes, either alone or in conjunction with a professional consultation.^19–21 However, oncofertility resources are rarely empirically evaluated.²²

One exception is NSW Cancer Council's Fertility and Cancer educational resource,^† which was found to be highly acceptable and useful to adults diagnosed with cancer and significantly improved health literacy without causing additional distress.²² However, resources developed for adults with cancer may not be appropriate for AYAs, and it is recommended that resources are tailored to their developmental level and are age appropriate in both content and language.^23–25

This study aimed to assess the acceptability and preliminary efficacy of the AYA oncofertility information resource, Maybe Later Baby (MLB), regarding its impact on QOL, health literacy, and fertility-related knowledge and emotions of AYAs diagnosed with cancer. It additionally compared the impact of the resource alone with its use in conjunction with a health care professional (HCP) consultation to determine the optimal conditions of its use.

Methods

Study design and procedure

The MLB evaluation used a mixed method (surveys/interviews), randomized controlled design. AYAs were eligible to participate if they were aged 15–30 years, had been diagnosed with cancer, had completed a broader study of cancer and fertility,^7,9,26 and indicated interest in the evaluation of an oncofertility information resource. Participants were sent an initial online/paper survey assessing their baseline QOL, psychological distress, fertility-related distress, and fertility-related health literacy.

Respondents were then randomly allocated by coin toss to one of two conditions: (1) MLB alone (n = 13); or (2) an augmented intervention (n = 10), with MLB provided in conjunction with a consultation with an HCP. Participants completed a follow-up survey 6 weeks later, which repeated baseline measures and assessed experiences of the intervention and the acceptability and appropriateness of the resource. Finally, all participants who completed both surveys were invited to take part in a semistructured interview about their experiences of the resource/intervention.

Ethical approval for this study was obtained from the Western Sydney University Human Research Ethics Committee (H9360) and local health authorities, with secondary approval from Canteen. The RCT was registered with the Australian New Zealand Clinical Trials Registry.

Participants

Forty-four AYAs completed the baseline survey and 23 (52%) completed the follow-up. Participants were 17–30 years old and predominantly female, heterosexual, and post-treatment survivors. Thirteen were randomly allocated to the MLB-only condition, while 10 were allocated to the MLB+HCP consultation condition. Four participants, two from each condition, completed interviews (Fig. 1 and Table 1).

FIG. 1.

CONSORT flow diagram.

Table 1.

Participant Demographics and Clinical Characteristics

Characteristic	Survey participants			Interviewees
	MLB only (N = 13)	MLB+HCP discussion (N = 10)	Total (N = 23)	(N = 4)
	M (SD), range	M (SD), range	M (SD), range	M (SD), range
Age at participation (years)	21.5 (3.6), 17–30	23.6 (2.6), 19–27	22.4 (3.3), 17–30	23.0 (4.2), 17–29
	n (%)	n (%)	n (%)	n (%)
Gender
Female	10 (77)	7 (70)	17 (74)	3 (75)
Male	3 (23)	3 (30)	6 (26)	1 (25)
Sexuality
Heterosexual	13 (100)	9 (90)	22 (96)	4 (100)
Nonheterosexual	0	1 (10)	1 (4)	0
Cancer type
Hematological/blood	5 (39)	3 (30)	8 (35)	1 (25)
Neurological	2 (15)	30 (30)	5 (22)	2 (50)
Musculoskeletal	1 (8)	1 (10)	2 (9)	0
Gastrointestinal	0	2 (20)	2 (9)	0
Skin	1 (8)	0	1 (4)	0
Other	4 (31)	1 (10)	5 (22)	1 (25)
Treatment status
On active treatment	3 (23)	0	3 (13)	1 (25)
Maintenance treatment	1 (8)	1 (10)	2 (9)	0
Finished treatment	9 (70)	9 (90)	18 (78)	3 (75)
Experimental condition	—	—
MLB only			13 (57)	2 (50)
MLB+HCP discussion			10 (43)	2 (50)

HCP, health care professional; MLB, Maybe Later Baby.

Interventions

Maybe Later Baby

MLB is a 60-page resource designed to provide AYAs with age-appropriate information about oncofertility. It was developed by Canteen^‡ in partnership with medical and psychosocial professionals and AYAs diagnosed with cancer, published in 2009, and revised in 2014 as part of the Cancer and Fertility study.^7,9,26,27 The resource is comprehensive, covering the anatomy and definitions of fertility, information about how cancer and treatment can affect sexuality and fertility, potential fertility treatments and preservation options, psychological implications of fertility issues, and referrals for further reading. It is available in print and online through Canteen^§; in this study, participants received both the hard copy and a link to the e-book.

HCP consultation

Participants in the MLB+HCP consultation condition were contacted by a counselor (A.H.) with expertise in oncosexuality ∼2 weeks after receiving MLB for a 1-hour phone discussion. This consultation allowed participants the opportunity to ask about any questions or concerns that were raised while reading MLB and explore appropriate ways of addressing their fertility issues. Participants in the MLB-only condition had the option to undertake this consultation after the study ended.

Measures

Acceptability and appropriateness (follow-up survey)

Participants rated their agreement with six items assessing the accessibility, relevance, and design of MLB (Table 2) using a four-point Likert scale (strongly disagree–strongly agree). Closed- and open-ended questions asked participants if the information contained in the resource was sufficient for their needs, if it helped compare fertility options, if they felt upset after reading the resource (none/a little/some/a lot), and whether the HCP discussion was helpful (where applicable).

Table 2.

Acceptability of Maybe Later Baby

	Participants agreeing^a n (%)
The book:
Is easy to understand	23 (100)
Is easy to use	23 (100)
Has the information I need	20 (87)
Felt like it was written for someone my age	20 (87)
Gave me what I was looking for	17 (74)
Was well designed	23 (100)
	n (%)
The amount of information in the book was:
Much less than needed	0
A little less than needed	4 (17)
About the right amount of information	17 (74)
A little more information than was needed	2 (9)
A lot more information than was needed	0
Is there any further information you would have liked included?
Yes	13 (57)
No	10 (43)
Did the book address your questions about cancer and fertility?
Yes, completely	5 (22)
Yes, most	14 (61)
Yes, some	3 (13)
No	1 (4)
Did the book help you compare fertility options?
Helped a lot	7 (30)
Helped somewhat	11 (48)
Helped a little	3 (13)
Did not help at all	2 (9)
Did you find the session with the health professional helpful?^b
Helped a lot	3 (50)
Helped somewhat	2 (33)
Helped a little	1 (17)
Did not help at all	0

Collapsed across conditions.

Although 10 participants were in the MLB+HCP consultation condition, only 6 responded to questions about the consultation in the postintervention survey.

Finally, a series of open-ended prompts asked participants about the most and least useful parts of the book and if they had any further comments or suggestions for improvement of the resource.

Preliminary evaluation of efficacy (baseline/follow-up survey)

Quality of life

The single-item Ladder of Life,²⁸ widely used in epidemiological and population studies,²⁹ asked participants to rate their QOL on a 10-point Likert scale (1 = worst imaginable–10 = perfect).

Psychological distress

The single-item Distress Thermometer³⁰ asked participants to rate their level of distress over the last week, using an 11-point scale represented as a thermometer (0 = no distress–10 = extreme distress). This measure is used extensively in cancer care and research^31,32 and has been validated in AYAs with cancer.³³

Fertility-related distress

The single-item Distress Thermometer³⁰ was adapted to ask participants about distress related to fertility issues over the past week, using the same scale.

Fertility-related health literacy

The 14-item functional, communicative, and critical health literacy measure comprises three subscales, assessing the respondent's ability to read and understand (functional), derive meaning from and communicate about (communicative), and assess or analyze (critical) health information.³⁴ The measure was previously adapted and validated with AYAs diagnosed with cancer,³⁵ and this AYA adaptation was modified to ask specifically about oncofertility information.

The follow-up survey asked participants to report their experiences since receiving the MLB resource. Participants were asked to rate how often each item was true, using a four-point Likert scale (1 = never–4 = often).

Fertility-related knowledge

Twelve items were developed to ask participants about their level of knowledge about the oncofertility issues covered in MLB (which were themselves determined through consultation with medical and psychosocial professionals and AYAs diagnosed with cancer; for example, effects of cancer treatments on fertility). Participants responded using a four-point Likert scale (none/a little/some/a lot).

Fertility-related emotions

Finally, two items were developed to ask if participants felt nervous or fearful about fertility treatment and if they felt a sense of control over fertility concerns (none/a little/some/a lot).

Interview

The postintervention semistructured interview explored participants' experiences of cancer and fertility, including their experiences of the study and intervention. All interviews were conducted through phone and were audio-recorded and professionally transcribed for analysis.

Data handling and analyses

Survey data were analyzed using IBM's Statistical Package for the Social Sciences (SPSS). There were minimal missing data on the multi-item scales and so values were imputed using mean substitution where appropriate. Preliminary chi-square analyses and analyses of variance explored differences in sociodemographic, clinical, and baseline self-report variables between intervention conditions.

For baseline/follow-up survey measures, a general linear model was used to test for overall changes in outcomes over time and for potential differences in the effects of the two intervention conditions. Follow-up analyses tested for significant changes over time for each outcome as well as for interactions between time and intervention condition. Due to the small sample size, no adjustment for multiple comparisons was used.

Inductive thematic analysis³⁶ of open-ended survey responses and interview transcripts was conducted. Data were reviewed to identify recurring patterns, which were used to generate preliminary descriptive codes. The dataset was coded in NVivo, with codes then grouped into higher-order themes, which were developed and refined through discussion between authors.

Results

Acceptability and appropriateness

Surveys indicated high satisfaction with MLB: the resource was universally agreed to be well designed and easy to understand and use, with most respondents also reporting that it was age appropriate, had the information they needed, answered their questions about cancer and fertility, and helped them compare fertility options (Table 2).^**

However, 57% reported that they would have liked further information included. All participants who completed the HCP consultation and subsequent survey questions indicated that this had been helpful.

Preliminary evaluation of intervention efficacy

Preliminary analyses indicated that the MLB+HCP discussion group reported higher baseline functional health literacy (Ms 3.60 vs. 2.48, F = 16.124, p = 0.001) and felt less nervous/fearful (Ms 1.60 vs. 2.62, F = 5.698, p = 0.026) than the MLB-only group. No other differences in sociodemographic, clinical, or self-report variables were statistically significant.

The overall general linear model indicated significant effects of the interventions, averaged across conditions (F = 5.884, p = 0.005), but no significant differences between the two conditions, averaged over time (F = 1.452, p = 0.283). Subsequent analyses for each outcome measure indicated that there was a significant decrease in QOL, a significant increase in functional health literacy, and a significant increase in self-rated fertility knowledge from pre- to postintervention (Table 3).

Table 3.

Changes in Psychosocial Outcomes from Baseline to Follow-Up

Outcome	Main effect of time				Interaction with condition
Outcome	Pre	Post	F	p	F	p
Quality of life	6.67	6.14	7.257	0.014	1.753	0.201
General distress	3.88	3.86	0.006	0.938	0.758	0.395
Fertility-related distress	1.90	2.48	0.925	0.348	0.002	0.964
Health literacy
Functional	3.06	3.57	9.719	0.006	3.499	0.077
Communicative	2.77	2.80	0.032	0.860	1.155	0.296
Critical	2.90	3.17	1.875	0.187	2.197	0.155
Fertility knowledge	25.29	30.89	13.398	0.002	0.122	0.730
Fertility-related emotions
Nervous/fearful about fertility treatment	2.14	2.57	2.685	0.118	10.333	0.005
Sense of control over fertility issues	1.90	2.52	1.995	0.174	0.235	0.633

Significant changes indicated in bold.

There was also one significant interaction between intervention condition and time: those in the MLB+HCP discussion group reported being more nervous and fearful after the intervention, compared with before the intervention (pre: 1.60, and post: 3.00), while those in the MLB-only condition reported being less nervous and fearful after the intervention (pre: 2.63, and post: 2.18).

Qualitative analysis

Three themes were identified from the data (Table 4): (1) oncofertility information presented in MLB is valued and reassuring; (2) MLB balances variable oncofertility information needs well; and (3) benefits of HCP discussion depend on timing.

Table 4.

Themes and Illustrative Quotes from the Pilot Evaluation of Maybe Later Baby

Theme	Example quotes
Oncofertility information presented in MLB is valued and reassuring	“Well written and informative”“Perfect for what I was looking for”“I often worry about fertility, but the book gave me more information and helped ease some of my worries”“Knowing my anxieties are not unwarranted is comforting”“The [impacts on] sex drive, for example, is one of those things that I thought was just me”“It made me feel a bit more normal”
MLB balances variable oncofertility information needs well	“The difficulty is that there's a line with giving people too much information and scaring them, and I think [MLB] manages that line very well”Further information desired: cancer- and treatment-specific information, for example, “tailoring information in regards to type of cancer, but this may not always be possible”Least useful information: anatomy-specific sections, for example, “the men stuff”; “having sex while having chemo (I'm not on chemo)”; “this would have been very helpful at the start of my treatment”“Different people are going to have different questions, so you've got to be thorough”“The fact that I didn't get much value from the book is not a reflection on the book—a lot of it will be more valuable to others who have not done as much in-depth research”
Benefits of HCP discussion depend on timing	“It was good to discuss about the book and any issues, so it was good just to have a bit of follow-up”“Being able to talk to somebody and ask questions where perhaps it's something you still don't quite fully understand, or maybe the book raises questions that you haven't thought of previously […] would be helpful”

Oncofertility information presented in MLB is valued and reassuring

Qualitative data echoed quantitative findings about the acceptability and impact of MLB. The resource was seen as appropriately targeted for the AYA population and was described as “amazing for anyone who has/had cancer.” Feedback confirmed that the interventions improved understanding of fertility without causing additional distress, providing “a valuable amount of information without being daunting” and helping to legitimize, normalize, and ease fertility concerns.

MLB balances variable oncofertility information needs well

AYAs' experiences and preferences around fertility information were noted to be “completely different for everybody.” While several participants in this study described themselves as wanting to have “as much knowledge as possible,” they noted that “obviously not everyone does”; however, MLB was seen to balance the varying needs of different patients well. Likewise, a potential issue was noted around providing an appropriate amount of information in a timely manner, such as “you get given so much information at times […] you can just be overloaded with information.”

A similar tension was identified between participants' desire for specific cancer information and the need for resources such as MLB to be concise and broadly relevant. When prompted, participants identified that they would have liked MLB to include information tailored to their specific cancer and treatment (“rather than using the ‘see your doctor’ line”) as well as further details on existing material (e.g., potential sexual issues, menopause) and avenues for further help (e.g., other sources, IVF companies/prices).

Conversely, some participants reported that the resource contained information not relevant to their specific situation (e.g., anatomy, treatment). Notably, these participants considered it important to include this information as “it will still be relevant to others.”

Finally, several participants noted that they had already sought out information about fertility when this was relevant in their cancer experience; while having this reiterated in MLB could be useful as “reinforcement” and confirmation, other AYAs may have greater information needs and thus learn more from MLB.

Benefits of HCP discussion depend on timing

Participants in the MLB+HCP discussion condition indicated that the consultation had been a good opportunity to review content covered in the resource, ask any questions that may remain, request further information, and/or discuss specific results of fertility testing. However, the majority of these AYAs noted that they were not personally at a point in their cancer experience where this would be useful, and this may be more helpful “for somebody going through it initially” (i.e., diagnosis/treatment) or at the point of considering starting a family.

Conclusions

The unique psychosocial concerns of AYAs with cancer³⁷ necessitate the development of targeted resources to meet their information needs, particularly as they are still developing health literacy and may be less knowledgeable about cancer, fertility, and health care.^23–25 MLB was designed to provide information about oncofertility at a developmentally appropriate level, and its acceptability to AYAs was confirmed by evaluation findings.

All participants rated the resource as easy to use and understand, and almost all agreed that it was age appropriate. This is consistent with previous evaluations of AYA information resources³⁸ and adult oncofertility resources,²² perhaps reflecting previously evidenced unmet information needs in these areas.^3,10,39–41 Participants were similarly positive regarding the amount and relevance of information included in MLB; the resource was thought to balance the variable information needs of AYAs well, providing enough information to be useful without overwhelming readers.

This is particularly important given the amount of general cancer information that may be presented to AYAs newly diagnosed with cancer.²³ Providing a concise general resource such as MLB may help to confirm and consolidate young people's understanding of oncofertility and serve as a reference to aid later recall or prompt future questions.

The impacts evidenced in this evaluation of MLB are consistent with those from the evaluation of its adult counterpart, Fertility and Cancer: a significant increase in fertility-related knowledge and health literacy, no changes in general or fertility-related distress, and a slight decrease in QOL were observed from pre- to postintervention.²² The increase in knowledge is particularly notable as most AYA participants had completed treatment and many had received (or sought out) oncofertility information.

Together with qualitative responses, this suggests that MLB is a useful source of information regardless of AYAs' stage in the cancer trajectory and prior understanding of oncofertility. However, these participants noted that the resource may have benefitted them to a lesser degree because of their prior knowledge and experiences, suggesting that the positive impact of MLB may be more pronounced for AYAs who are newly learning about oncofertility (e.g., those who are recently diagnosed with cancer).

Contrary to previous evaluations of oncology information resources^19–21 and evidence linking fertility knowledge and discussion with reduced distress,^3,10,42 MLB was not associated with improved psychological well-being; instead AYAs' QOL decreased, mirroring the decline observed for adults in the Fertility and Cancer resource evaluation.²² This may be because the resources primarily aimed to improve knowledge, not well-being, or because consideration of fertility issues may have been distressing for some participants.

Qualitative reports indicated that participants appreciated the opportunity to discuss fertility with an HCP and considered this helpful, consistent with previous research suggesting that AYAs' health literacy is, in part, generated through their interactions with clinicians.^23,43

Participants also suggested that the consultation may still help to improve or consolidate an understanding of information contained in the resource and aid in decision-making at key points in the cancer trajectory (i.e., when fertility preservation is immediately relevant). However, the consultation did not seem to enhance the benefits of MLB. Instead, our findings show that this group reported being more nervous/fearful after the intervention, compared with before the intervention.

While this may reflect regression to the mean, as the MLB+HCP condition group reported feeling more nervous/fearful at baseline, it is possible that discussing oncofertility in relation to the AYA's specific situation (as opposed to MLB's general information) is more confronting, indicating that HCPs engaging in these discussions may need to monitor patients' emotional responses and address distress that may arise (either directly or through referral to psychosocial services).^3,44,45 Further longitudinal research would also help to clarify whether this distress resolves or persists over time.

This evaluation is limited by its small sample size, limiting the statistical power to detect significant effects, the information power⁴⁶ to obtain a comprehensive understanding of experiences and impacts of the interventions, and the generalizability of findings. Most participants had also already completed treatment and had previously received or sought oncofertility information, and the observed impacts of MLB and HCP discussions may not generalize to the broader population of AYAs diagnosed with cancer.

Additionally, LGBTQI+ and younger (15–16 years) AYAs, and those recently diagnosed with cancer, were underrepresented among study participants. Further work evaluating oncofertility resources with a larger and more representative sample of AYAs would help to clarify the impacts of oncofertility resources at these critical periods, the optimal conditions of their use, and their relevance and acceptability to different AYA subpopulations. Subsequent evaluations would also benefit from using validated scales to assess intervention outcomes, as the single-item indices used in this pilot evaluation may be susceptible to measurement error.

In a clinical landscape where oncofertility is not consistently discussed with patients^3,17,18 and where fertility information resources are scarce,^22,40,41 the development and pilot evaluation of MLB represents an important step in ensuring that AYAs with cancer have access to appropriate and impactful information about cancer and fertility. However, HCP discussion of oncofertility remains crucial in providing AYAs with information that is tailored to their cancer situation and in discussing specific preservation and treatment options where this is relevant to patients.^{3,12,16,42,44}

This situation-specific information was desired by participants in this study and may be more easily provided by clinical discussion and online resource pathways that can be individually tailored and regularly updated.

Footnotes

Acknowledgments

The authors thank the Cancer and Fertility Study stakeholder advisory group for their input into the study—in particular, Amanda Horden, who conducted the HCP consultations in the augmented intervention. The authors also thank all the young people who participated in this evaluation.

Author Disclosure Statement

K.R.A., P.P., and F.E.J.M. are affiliated with Canteen, which developed the Maybe Later Baby resource evaluated in this article. There are no other conflicts of interest to disclose.

Funding Information

This research was funded by an Australian Research Council Linkage Grant, LP110200153, to Western Sydney University, in partnership with Cancer Council NSW, the National Breast Cancer Foundation, Canteen, Family Planning NSW, Westmead Hospital, and Nepean Hospital.

Representatives from Cancer Council NSW, the National Breast Cancer Foundation, Canteen, and Family Planning NSW were part of a stakeholder advisory group consulted on study design; the funding bodies had no involvement in collection, analysis, and interpretation of data presented in this article; in writing the manuscript; or in deciding where to submit the article for publication.

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