Implementing a User-Centered Design to Develop a Web-Based Sperm Banking Decision Tool for Adolescent Males with Cancer

Abstract

Purpose:

Approximately half of male childhood cancer survivors experience treatment-related fertility impairment. Regrets about missed sperm banking opportunities have been reported, yet few decision tools for male adolescents with cancer exist. This study aims to report the development, testing, and adaptation of the Family-centered Adolescent Sperm banking values clarification Tool (FAST) using an iterative, user-centered design with male adolescents with cancer and their caregivers and to obtain feedback from clinicians and community partners.

Methods:

Males (12–25 years, diagnosed with cancer in the past year, received a routine fertility consult where sperm banking was offered) and caregivers completed the FAST on a screen-recorded device, a semi-structured interview, the System Usability Scale (SUS), and a sociodemographic questionnaire. Feedback informed FAST adaptations and was documented using the Framework for Reporting Adaptations and Modifications–Expanded. Descriptive statistics and thematic analysis characterized FAST completion information.

Results:

Ten families (16 caregivers, 9 adolescents) enrolled. Themes included: ease of navigation, perceived usefulness of the FAST, and perspectives on tool adaptations. Forty-three FAST adaptations were made in response to participant feedback. Median FAST completion time was 5 minutes and 37 seconds. The mean FAST SUS score was high at 84.60 (minimum = 57.50, maximum = 100, standard deviation = 11.08).

Conclusions:

Applying an iterative, user-centered approach, the FAST was developed, usability-tested, and adapted to a web-based format that families found easy to navigate and useful. Web-based tools, such as the FAST, could improve the sperm banking decision-making process for adolescent males and their caregivers by addressing unmet needs and ultimately improving satisfaction with fertility counseling outcomes.

Keywords

user-centered design digital health sperm banking adolescent cancer usability testing

Introduction

There are nearly 500,000 childhood cancer survivors in the United States, and approximately half of all male survivors experience fertility impairment from cancer treatment.^1–3 Among survivors and their caregivers, studies indicate that infertility contributes to psychosocial distress, with both survivors and caregivers expressing regret about missed fertility preservation opportunities prior to treatment initiation.^4–6 Sperm banking is an established and effective method of fertility preservation, yet it remains inconsistently utilized.⁷ Clinicians and researchers have attributed underutilization to a variety of factors including lack of resources, urgency to begin treatment, and cost.^4,8–10 Caregivers play an important role in the sperm banking decision-making process; however, several studies have reported that caregivers are often unaware of their son’s fertility goals and face challenges navigating discussions on this topic.^11–14 Despite the need for decision tools for this population,¹⁵ tools that have been developed to date have primarily targeted adult cancer populations.^16,17 A recent study among clinicians highlighted a need for family-centered tools designed for younger populations to facilitate these challenging decisions.¹⁵

Digital health platforms are preferred by adolescents, particularly when addressing sensitive health topics.^18–21 Yet, to our knowledge, no family-centered sperm banking decision tool has been developed and implemented for male adolescents with cancer. To address this gap, our team developed the Family-centered Adolescent Sperm banking values clarification Tool (FAST; ^© 2020, Nationwide Children’s Hospital), based on the Health Belief Model (e.g., perceived benefits/barriers to sperm banking).²² Previous studies have established the utility of the Health Belief Model in predicting fertility preservation decisions in individuals with cancer.^23,24

Pilot testing of the FAST as a paper-and-pencil tool demonstrated that it was feasible to administer, highly acceptable, and improved institutional sperm banking rates.²² The tool was then integrated into a larger Fertility Preservation Discussion and Decision (FP-DAD) intervention, which was tested in a pilot randomized controlled trial.²⁵ While acceptability was high among those who completed the intervention, overall feasibility of FP-DAD was low; it was not practical to engage all family members in an interventionist-led discussion in the short time frame between the fertility consult and pre-treatment sperm banking decision.²⁶ Therefore, the FAST was translated to a web-based and self-guided platform to ensure broader accessibility and implementation across a variety of institutions (i.e., those with and without dedicated oncofertility programs) and clinical settings (e.g., inpatient, outpatient, and remote). In this article, we report the development, testing, and adaptation of the FAST to a web-based format using iterative, user-centered design with male adolescents with cancer and their caregivers, in addition to obtaining feedback from clinicians and community partners.

Methods

Participant recruitment

Participants were primarily recruited in-person, at the main study site (large pediatric academic medical center in Ohio). The study was also advertised at two additional sites, where potential participants completed an interest form via QR code and were later contacted regarding study participation. Our goal was to enroll 10 families. Research staff approached eligible families in the inpatient and outpatient settings. Eligibility criteria were as follows: age 12–25, male, diagnosed with cancer in the past year, received routine oncofertility counseling (i.e., where a provider reviewed risk of future fertility impairment and offered sperm banking), and proficient in English. Caregivers of adolescents who met the eligibility criteria were also eligible to participate.

Participants reviewed and completed a consent form, and participants under the age of 18 provided written assent prior to beginning study activities. This study met Institutional Review Board approval (STUDY00003625) at Nationwide Children’s Hospital.

FAST description

The web-based Family-centered Adolescent Sperm banking decision Tool (FAST^© 2023, Nationwide Children’s Hospital) was designed to supplement oncofertility counseling. In the FAST, adolescents use a four-point Likert scale (strongly agree—agree—disagree—strongly disagree) to complete 25 items about their fertility-related perspectives and perceived benefits/barriers to sperm banking. Caregivers complete a different version of the FAST wherein they use a four-point Likert scale (strongly agree—agree—disagree—strongly disagree) to complete 21 items regarding their own fertility-related perspectives and a five-point Likert scale (strongly agree—agree—unsure–disagree—strongly disagree) to complete 13 items regarding their perceptions of their son’s fertility-related perspectives.

The FAST uses a rule-based algorithm to propose predefined discussion points, tailored to user responses, to prompt pre-treatment discussions about sperm banking among male adolescents and participating caregivers (Fig. 1). Following completion of the FAST, all participating family members can view a summary report of their family’s responses. Participants also receive an email with links to their discussion prompts and the summary report, allowing them to continue their conversation.

FIG. 1.

Sample FAST screenshots. (A–C) Screenshots of highlighted web-based FAST tool features. (A) The decision tool (adolescent version). (B) Explanation of the discussion portion of the tool. (C) Example discussion prompts. FAST, Family-centered Adolescent Sperm banking values clarification Tool.

Clinician and community partner testing

Concurrent with usability testing sessions, clinicians and local community partners (founders of an oncofertility patient advocacy organization) participated in virtual small group meetings during which they tested and provided feedback on the content and delivery of the FAST.

Usability testing

Usability testing sessions were conducted by research staff, a usability testing expert, and the principal investigator during a clinic appointment. During the usability testing sessions, all participants completed a prototype of the FAST on a screen-recorded iPad. Screen recordings were used to identify technological glitches and functionality issues. Next, research staff conducted a semi-structured interview. Questions in this interview were based on constructs from the technology and acceptance model,²⁷ focusing on the perceived usefulness of the FAST along with areas to improve the user experience. Interviews were audio recorded and transcribed verbatim. Finally, participants completed two REDCap surveys including a brief sociodemographic questionnaire (to collect information such as age, gender, race, education, and primary language) and the System Usability Scale (SUS).²⁸ The SUS is a 10-item survey used to assess the perceived usability of a tool. Scores range from 0 to 100, with higher scores indicating higher perceived usability.²⁸ All participants were compensated with a $30 gift card.

Tool adaptation

Changes to the FAST were made iteratively between usability testing sessions (Fig. 2). After each set of two to three usability testing sessions, participant feedback was reviewed by the research team. Research team members, in collaboration with an interdisciplinary team, made decisions about content and format changes. All adaptations to the FAST were documented using the Framework for Reporting Adaptations and Modifications–Expanded (FRAME).²⁹

FIG. 2.

FAST adaptation and usability testing process. ¹The research team includes the principal investigator, digital health expert, and research staff. ²The design team includes a graphic designer, a project manager, and software developers.

FRAME is a systematic framework for documenting adaptations to existing interventions.³⁰ It is comprised of the following eight components: (1) when during the implementation process the adaptation was made, (2) whether the adaptation was planned or unplanned, (3) who decided that the adaptation should be made, (4) what was adapted, (5) the nature of the content or context adaptation, (6) the level of delivery at which the adaptation was made, (7) the alignment of the adaptation with intervention fidelity, and (8) the rationale for the adaptation.²⁹

Analysis

Three independent coders used thematic analysis³¹ to analyze the interviews in NVivo (κ = 0.81). Both deductive and inductive approaches were used to identify and categorize themes. Subsequently, coders met to review and refine themes, resolve discrepancies, and reach consensus. The SUS was scored according to the established guidelines.³² Descriptive statistics were used to analyze sociodemographic data and SUS scores. Screen recordings were analyzed to measure the number of extra taps/swipes, attention (>5 seconds spent on the discussion instruction page), time to complete the FAST, response changes, and discussion prompts populated.

Results

Participants

Of the 17 eligible families who were approached, 10 (59%) were enrolled in this study, including 16 caregivers and 9 adolescents (25 participants in total). Four families completed the interest form at the two advertising sites; however, attempts to contact them for recruitment were unsuccessful. As such, all study participants were recruited and enrolled at the main site. Families were recruited a median of 40 days after diagnosis (range = 28–146 days), and five (50%) had completed sperm banking. At least one member of each family completed a usability testing session, with six (60%) families having three participating members. Three families (30%) had two participating members, and one family (10%) had one participating member. The median age of enrolled caregivers was 48 years (interquartile range [IQR] = 43–53), and the median age of enrolled adolescents was 16 years (IQR = 14–17). Thirty-six percent of participants were Black, 8% were Asian American, and 56% were White. Fifty-six percent of caregivers reported attaining a bachelor’s degree or higher.

Screen recording analysis and SUS

The median length of time taken to complete the FAST (excluding the discussion portion) was 5 minutes and 37 seconds (ranging from 2 minutes and 26 seconds to 15 minutes and 1 second). Participants changed their responses a median of two times and had a median of four extra taps and swipes while completing the FAST. Twelve participants (71%) spent >5 seconds reading the discussion instruction page. Errors in the rule-based algorithm and functionality glitches of the FAST were identified during analysis and fixed prior to the next scheduled usability testing session. The average SUS score for the FAST was 84.60 (minimum = 57.50, maximum = 100, standard deviation = 11.08). Using the curved grading scale approach, the FAST was found to be highly acceptable.³³

FRAME documentation

In total, 43 adaptations were made to the FAST, one of which was a context adaptation (i.e., changes to the delivery of the FAST), which was suggested by clinicians to facilitate future implementation and improve feasibility. Of the 42 content adaptations (i.e., changes to the themes and content of the FAST), seven (17%) involved adding elements or modules to the FAST (e.g., guided discussion instruction page, testimonial video page), one (2%) lengthened/extended the FAST by making some sections mandatory, and 34 (81%) involved tailoring/tweaking/refining elements of the FAST. The goals of making the content adaptations included increasing user satisfaction (n = 30, 71%), improving the fit of the FAST with recipients (n = 6, 14%), increasing retention (n = 4, 10%), increasing the reach and/or engagement of the FAST (n = 5, 12%), and improving feasibility (n = 5, 12%).

Semi-structured interviews

Ease of navigation

The majority of participants reported that the FAST was straightforward and easy to navigate (Table 1). They reported that they were happy with the way the FAST was designed, noting that the information was well organized. Additionally, two participants, who initially expressed challenges with technology use, noted that the FAST was understandable and simple to use. Finally, we received mixed feedback on the length of the FAST with a small subset of participants noting that they would like it to be shorter, while the majority of participants indicated that the length was appropriate.

Table 1.

Patient and Caregiver Feedback on the Usability of the Family-Centered Adolescent Sperm Banking Values Clarification Tool

Theme	Frequency (%)	Quote
Ease of navigation	25 (100%)	“I thought it was very straight forward…Very well organized. I think it was very intuitive to use.”—Family 2 Caregiver
		“[the FAST] was clear and concise. It was easy to use but a little long.”—Family 4 Caregiver
		“In general, it was good. I could get through it and I’m not a computer person.”—Family 7 Caregiver
Perceived usefulness of the FAST	25 (100%)	“[the FAST] would have been a good tool to have. We got through it just fine, but I just thought about other families going through this and how I felt about just how we learned about [sperm banking]. That is such a big thing to think about and it’s so awkward with a teenage boy.”—Family 9 Caregiver
		“I think [the FAST] would have given us more of a chance to talk about [sperm banking] versus just like a couple times in the hospital and then like just a follow up phone call. [The FAST] would have given us time to engage with the decision a little more.”—Family 2 Caregiver
		“I’d say [the FAST] was a good way of discussing with each other. When you try to discuss fertility, it can be kind of embarrassing, or just hard to discuss about, so I really think it was a great tool to discuss. It made you think about questions I hadn’t thought about before, especially about fertility.”—Family 10 adolescent
Perspectives on tool adaptations Video Testimonial Answer Choices	16 (64%)	“It was helpful for [my son] to see how somebody would feel closer to their age range.” Family 5 Caregiver
		“I think putting [the video] at the very beginning, like a primer to get them thinking about it.”—Family 6 Caregiver
		“I think it [the video] was short and sweet.”—Family 7 Caregiver
		“I feel like there should be another option where you can type in your answer. Writing it would be easier.”—Family 8 adolescent
		“I’m sure I wouldn’t pick ‘I don’t know’ but in the questions that are like ‘my future partner would want a child’, you could just press ‘I don’t know.’ I think I see both sides. It could be a way to discuss and be honest and say ‘I don’t know’, or someone could say ‘agree’ when they don’t necessarily agree, but they don’t disagree.”—Family 5 adolescent

FAST, Family-centered Adolescent Sperm banking values clarification Tool.

Perceived usefulness of the FAST

All participants reported that the FAST would have helped initiate conversations about sperm banking and would have aided their sperm banking decision-making. Several participants discussed the value of the fertility consult, sharing their appreciation for the information and the opportunity to have conversations about the sperm banking process. They noted that the FAST would provide opportunities for families to have discussions following the fertility consult and that the discussion prompts would help bring awareness about each family member’s perspectives. Caregivers mentioned that being able to understand the adolescent’s feelings about sperm banking was a particularly meaningful aspect of the FAST. Furthermore, adolescents expressed that items in the FAST prompted them to acknowledge considerations for the future that had not been considered prior to completing the tool.

Perspectives on tool adaptations

Video

One suggestion from participants was to add a video testimonial highlighting the importance of sperm banking in the form of a personal experience narrative, particularly to relate to adolescents. Participants suggested that the video testimonial be placed at the beginning of the FAST as a primer. As such, the research team collaborated with community partners to film a video testimonial presenting the experiences of a male cancer survivor. Once the video testimonial was added to the FAST, all remaining participants (n = 16) reported approval, finding the length appropriate and engaging. They also noted that the video testimonial helped to explain the importance of making an informed sperm banking decision.

Answer choices

Adolescents were asked if it would be beneficial to have an “unsure” or “I don’t know” option on their surveys. Opinions on this item were mixed with some adolescents reporting a desire for an “unsure” option and others noting that an “unsure” option might result in adolescents only selecting that option. One adolescent suggested the addition of an extended response section for adolescents to explain their answers to survey items. However, some adolescents mentioned that they felt that the discussion portion of the tool was a sufficient opportunity for them to express their thoughts/hesitation.

Discussion

The present study focuses on the development, usability testing, and adaptation of the FAST, a novel web-based tool to facilitate pre-treatment sperm banking communication and decision making among adolescent males newly diagnosed with cancer and their caregivers. Applying principles of user-centered design to obtain feedback from participants, clinicians, and community members has allowed us to create a tool tailored to the specific needs of this patient population that can be integrated into clinical care. Overall, families found the FAST to be easy to navigate and useful in the context of a new cancer diagnosis.

In the process of receiving a new cancer diagnosis, time constraints are a significant stressor surrounding pre-treatment sperm banking decision making.³⁴ As such, one key objective of the FAST is to enhance sperm banking communication and decision making within these time constraints. In this study, participants completed the FAST in <6 minutes and reported that the FAST would have been easy to use when making a sperm banking decision, indicating its practicality and appropriateness for this time point. Furthermore, the high SUS score of the FAST exceeds the average SUS score for digital health tools, indicating high perceived usability³⁵ and therefore increasing the likelihood of tool adoption.³⁶ Beyond usability, families highlighted the utility of the FAST in facilitating reflections and conversations about future parenthood goals when making a decision in a short time frame.

Key aspects of FAST content were modified in alignment with feedback obtained from usability testing sessions and semi-structured interviews with families, as well as input from community partners. This was a crucial step to align the tool with the needs of the target population.³⁷ For example, participants suggested the addition of a video testimonial, which was created in collaboration with community partners. This testimonial may encourage adolescents to use the FAST and consider their future parenthood goals,³⁸ a key component of sperm banking decision making for adolescents who often struggle with future-oriented thinking.³⁹ Additionally, participants suggested the addition of an extended response section for adolescents to explain their answers to survey items. The adaptation and addition of these FAST features were well received upon usability testing with many participants commenting on their utility in the decision-making process.

In addition to perspectives on the content of the FAST, we received input on context and delivery. Adolescents and caregivers emphasized the value of receiving an in-person oncofertility consult from a health care provider prior to receiving the FAST. From the clinician’s perspective, pediatric oncology providers have reported that a family-centered sperm banking decision tool to enhance their counseling would be beneficial in practice.¹⁵ As such, clinician perspectives were obtained regarding format and delivery of the FAST to optimize future integration into clinical workflows. Future research will include clinicians from a wider variety of high- and low- oncofertility resource settings to examine perspectives regarding the implementation of the FAST.

These findings should be considered in the context of a few limitations. We had a small sample of families who participated in this study, and all were recruited from a single pediatric academic medical center with an established oncofertility program. However, small sample sizes are common in the development and usability testing phases of web-based tools, and several cycles of feedback and revision are routine before large-scale testing.^40,41 Furthermore, the feedback collected in this study will be used to continue to refine the FAST for larger-scale testing and implementation.

Despite these limitations, our findings contribute to the literature on the development of fertility preservation support tools designed for individuals with cancer. To date, fertility preservation decision tools have primarily focused on individual perspectives, female patients, and adults and parents of children and adolescents with cancer.^16,42–46 Moreover, these resources have primarily been delivered through brochures and informational websites.^47–49 The FAST utilizes an interactive, digital format to better engage adolescents in the discussion of a sensitive subject area.^19–21,50 Furthermore, the family-centered nature of the tool provides opportunities for all participating family members to reflect on each other’s perspectives. In the cancer setting, adolescents often collaboratively make medical decisions with parents, and parental recommendation to bank sperm is a strong predictor of utilizing this service.^{12,14,24,51–53} Thus, it is important that adolescents and their parents discuss sperm banking decisions prior to initiating treatment.

Conclusions

Using an iterative, user-centered approach, we have developed, usability-tested, and adapted the FAST, a web-based tool to support adolescent males newly diagnosed with cancer and their caregivers in making an informed sperm banking decision prior to the initiation of treatment. Additionally, clinicians’ and community partners’ input were used to optimize engagement and delivery of the FAST. Families found the FAST to be easy to navigate and useful in the context of a new cancer diagnosis. Future goals include garnering additional clinician feedback to guide the implementation of the FAST into a variety of clinical settings and multisite testing to assess effectiveness and implementation. Web-based tools, such as the FAST, have the potential to improve the fertility preservation decision-making process for adolescent males newly diagnosed with cancer and their caregivers, meeting the needs of patients and families to ultimately improve reproductive and psychosocial outcomes.

Authors’ Contributions

M.M.G.: Project administration, investigation, formal analysis, visualization, and writing—original draft. E.S.: Conceptualization, investigation, methodology, and writing—review and editing. T.K., J.E., Michael S., and Megan S.: Investigation and writing—review and editing. C.I.R.: Visualization and writing—review and editing. A.A.: Writing—review and editing. K.E.M., A.J.S., G.P.Q., and A.J.H.: Conceptualization, investigation, and writing—review and editing. L.N.: Conceptualization, investigation, methodology, funding acquisition, writing—review and editing, and supervision.

Footnotes

Acknowledgments

The authors thank Brannon Oiler, Brendan Abbott, Sylvio Fernandes, John Luna, Dan Digby, and Jenny Xu at Nationwide Children’s Hospital for their contributions to the development and design of the FAST.

Author Disclosure Statement

The authors have no conflicts of interest to disclose.

Funding Information

This work was funded by the National Cancer Institute at the National Institutes of Health (R01CA284073).

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