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.
PhillipsSM, PadgettLS, LeisenringWM, et al.Survivors of childhood cancer in the United States: Prevalence and burden of morbidity. Cancer Epidemiol Biomarkers Prev, 2015; 24(4):653–663; doi: 10.1158/1055-9965.EPI-14-1418
2.
GreenDM, KawashimaT, StovallM, et al.Fertility of male survivors of childhood cancer: A report from the childhood cancer survivor study. J Clin Oncol, 2010; 28(2):332–339; doi: 10.1200/JCO.2009.24.9037
LehmannV, KeimMC, NahataL, et al.Fertility-related knowledge and reproductive goals in childhood cancer survivors: Short communication. Hum Reprod, 2017; 32(11):2250–2253; doi: 10.1093/humrep/dex297
5.
NilssonJ, JervaeusA, LampicC, et al.‘Will I be able to have a baby?’ Results from online focus group discussions with childhood cancer survivors in Sweden. Hum Reprod, 2014; 29(12):2704–2711; doi: 10.1093/humrep/deu280
6.
SteinDM, VictorsonDE, ChoyJT, et al.Fertility preservation preferences and perspectives among adult male survivors of pediatric cancer and their parents. J Adolesc Young Adult Oncol, 2014; 3(2):75–82; doi: 10.1089/jayao.2014.0007
7.
SarafAJ, StanekJ, AudinoA, et al.Examining predictors and outcomes of fertility consults among children, adolescents, and young adults with cancer. Pediatr Blood Cancer, 2018; 65(12):e27409; doi: 10.1002/pbc.27409
8.
QuinnGP, VadaparampilST, Bell-EllisonBA, et al.Patient-physician communication barriers regarding fertility preservation among newly diagnosed cancer patients. Soc Sci Med, 2008; 66(3):784–789; doi: 10.1016/j.socscimed.2007.09.013
9.
KingL, QuinnGP, VadaparampilST, et al.Oncology nurses’ perceptions of barriers to discussion of fertility preservation with patients with cancer. Clin J Oncol Nurs, 2008; 12(3):467–476; doi: 10.1188/08.CJON.467-476
10.
HalpernJA, DasA, FawCA, BranniganRE. Oncofertility in adult and pediatric populations: Options and barriers. Transl Androl Urol, 2020; 9(Suppl 2):S227–S238; doi: 10.21037/tau.2019.09.27
11.
KloskyJL, SimmonsJL, RussellKM, et al.Fertility as a priority among at-risk adolescent males newly diagnosed with cancer and their parents. Support Care Cancer, 2015; 23(2):333–341; doi: 10.1007/s00520-014-2366-1
12.
KloskyJL, FlynnJS, LehmannV, et al.Parental influences on sperm banking attempts among adolescent males newly diagnosed with cancer. Fertil Steril, 2017; 108(6):1043–1049; doi: 10.1016/j.fertnstert.2017.08.039
13.
EllisSJ, WakefieldCE, McLooneJK, et al.Fertility concerns among child and adolescent cancer survivors and their parents: A qualitative analysis. J Psychosoc Oncol, 2016; 34(5):347–362; doi: 10.1080/07347332.2016.1196806
14.
NahataL, OlsavskyA, DattiloTM, et al.Parent-adolescent concordance regarding fertility perspectives and sperm banking attempts in adolescent males with cancer. J Pediatr Psychol, 2021; 46(10):1149–1158; doi: 10.1093/jpepsy/jsab069
15.
NahataL, LilesSM, GerhardtCA, et al.Clinicians’ perspectives on barriers and facilitators to sperm banking in adolescent males with cancer: A mixed-methods study. J Assist Reprod Genet, 2023; 40(12):2809–2817; doi: 10.1007/s10815-023-02944-3
16.
JonesGL, MossRH, DarbyF, et al.Cancer, fertility and me: Developing and testing a novel fertility preservation patient decision aid to support women at risk of losing their fertility because of cancer treatment. Front Oncol, 2022; 12:896939; doi: 10.3389/fonc.2022.896939
17.
TsengLM, LienPJ, HuangCY, et al.Developing a web-based shared decision-making tool for fertility preservation among reproductive-age women with breast cancer: An action research approach. J Med Internet Res, 2021; 23(3):e24926; doi: 10.2196/24926
18.
d’HalluinA, CostaM, MorgieveM, SebbaneD. Attitudes of children, adolescents, and their parents toward digital health interventions: Scoping review. J Med Internet Res, 2023; 25:e43102; doi: 10.2196/43102
19.
WongCA, MadanayF, OzerEM, et al.Digital health technology to enhance adolescent and young adult clinical preventive services: Affordances and challenges. J Adolesc Health, 2020; 67(2S):S24–S33; doi: 10.1016/j.jadohealth.2019.10.018
20.
AartsJW, van den HaakP, NelenWL, et al.Patient-focused internet interventions in reproductive medicine: A scoping review. Hum Reprod Update, 2012; 18(2):211–227; doi: 10.1093/humupd/dmr045
21.
WiklanderM, StrandquistJ, ObolCM, et al.Feasibility of a self-help web-based intervention targeting young cancer patients with sexual problems and fertility distress. Support Care Cancer, 2017; 25(12):3675–3682; doi: 10.1007/s00520-017-3793-6
22.
NahataL, DattiloTM, OlsavskyAL, et al.Impact of a novel family-centered values clarification tool on adolescent sperm banking attempts at the time of a new cancer diagnosis. J Assist Reprod Genet, 2021; 38(6):1561–1569; doi: 10.1007/s10815-021-02092-6
23.
Ter KeurstA, BoivinJ, GameiroS. Women’s intentions to use fertility preservation to prevent age-related fertility decline. Reprod Biomed Online, 2016; 32(1):121–131; doi: 10.1016/j.rbmo.2015.10.007
24.
KloskyJL, LehmannV, FlynnJS, et al.Patient factors associated with sperm cryopreservation among at-risk adolescents newly diagnosed with cancer. Cancer, 2018; 124(17):3567–3575; doi: 10.1002/cncr.31596
25.
StanekC, TherouxCI, OlsavskyAL, et al.Study protocol for fertility preservation discussions and decisions: A family-centered psychoeducational intervention for male adolescents and emerging adults newly diagnosed with cancer and their families. PLoS One, 2022; 17(2):e0263886; doi: 10.1371/journal.pone.0263886
26.
NahataL, RocheCI, GriffithMM, et al.Fertility preservation discussions and decisions: Results from a pilot randomized controlled trial among adolescent males with cancer. Pediatric Blood & Cancer, 2025; 72(8):e31795; doi: 10.1002/pbc.31795
27.
RahimiB, NadriH, Lotfnezhad AfsharH, TimpkaT. A systematic review of the technology acceptance model in health informatics. Appl Clin Inform, 2018; 9(3):604–634; doi: 10.1055/s-0038-1668091
28.
BrookeJ. SUS: A quick and dirty usability scale. Usability Evaluation in Industry, 1996.
29.
Wiltsey StirmanS, BaumannAA, MillerCJ. The FRAME: An expanded framework for reporting adaptations and modifications to evidence-based interventions. Implement Sci, 2019; 14(1):58; doi: 10.1186/s13012-019-0898-y
30.
MadrigalC, MillsWL, KeleherVC, et al.A spotlight on adaptation: Preimplementation of montessori-based activity programming in long-term care using the Framework for Reporting Adaptations and Modifications-Enhanced (FRAME). Gerontologist, 2023; 63(3):589–603; doi: 10.1093/geront/gnac133
31.
BraunV, ClarkeV. Using thematic analysis in psychology. Qual Res Psychol, 2006; 3(2):77–101.
32.
BangorA, KortumP, MillerJ. Determining what individual SUS scores mean: Adding an adjective rating scale. J Usability Stud, 2009; 4(3):114–123.
33.
SauroJ, LewisJR. Quantifying the User Experience: Practical Statistics for User Research. Morgan Kaufmann; 2016.
34.
FlynnJS, RussellKM, LehmannV, et al.Parent recommendation to bank sperm among at-risk adolescent and young adult males with cancer. Pediatr Blood Cancer, 2020; 67(10):e28217; doi: 10.1002/pbc.28217
35.
HyzyM, BondR, MulvennaM, et al.System usability scale benchmarking for digital health apps: Meta-analysis. JMIR Mhealth Uhealth, 2022; 10(8):e37290; doi: 10.2196/37290
36.
LotlikarA. Usability contributing to reduced uptake of videolaryngoscopy. Anaesthesia, 2024; 79(8):882–883; doi: 10.1111/anae.16361
37.
NissenER, BregnballeV, MehlsenMY, et al.Patient involvement in the development of a psychosocial cancer rehabilitation intervention: Evaluation of a shared working group with patients and researchers. Res Involv Engagem, 2018; 4:24; doi: 10.1186/s40900-018-0106-2
38.
DillardAJ, MainJL. Using a health message with a testimonial to motivate colon cancer screening: Associations with perceived identification and vividness. Health Educ Behav, 2013; 40(6):673–682; doi: 10.1177/1090198112473111
39.
NurmiJ-E, PooleME, KalakoskiV. Age differences in adolescent future-oriented goals, concerns, and related temporal extension in different sociocultural contexts. J Youth Adolescence, 1994; 23(4):471–487; doi: 10.1007/BF01538040
40.
ReyesJ, WashioY, StringerM, TeitelmanAM. Usability and acceptability of everhealthier women, a mobile application to enhance informed health choices. J Obstet Gynecol Neonatal Nurs, 2018; 47(6):853–861; doi: 10.1016/j.jogn.2018.04.139
41.
VerdaguerS, MateoKF, WykaK, et al.A web-based interactive tool to reduce childhood obesity risk in urban minority youth: Usability testing study. JMIR Form Res, 2018; 2(2):e21; doi: 10.2196/formative.9747
42.
AllinghamC, GillamL, McCarthyM, et al.Fertility preservation in children and adolescents with cancer: Pilot of a decision aid for parents of children and adolescents with cancer. JMIR Pediatr Parent, 2018; 1(2):e10463; doi: 10.2196/10463
43.
KoizumiT, SugishitaY, Suzuki-TakahashiY, et al.Oncofertility-related psycho-educational therapy for young adult patients with breast cancer and their partners: Randomized controlled trial. Cancer, 2023; 129(16):2568–2580; doi: 10.1002/cncr.34796
44.
EhrbarV, UrechC, RochlitzC, et al.Randomized controlled trial on the effect of an online decision aid for young female cancer patients regarding fertility preservation. Hum Reprod, 2019; 34(9):1726–1734; doi: 10.1093/humrep/dez136
45.
SpellerB, MetcalfeK, KennedyED, et al.The “Begin Exploring Fertility Options, Risks and Expectations” (BEFORE) decision aid: Development and alpha testing of a fertility tool for premenopausal breast cancer patients. BMC Med Inform Decis Mak, 2019; 19(1):203; doi: 10.1186/s12911-019-0912-y
46.
SandhuS, HickeyM, KoyeDN, et al.; Eggsurance Collaborative Group. Eggsurance? A randomized controlled trial of a decision aid for elective egg freezing. Hum Reprod, 2024; 39(8):1724–1734; doi: 10.1093/humrep/deae121
47.
MurphyD, SawczynKK, QuinnGP. Using a patient-centered approach to develop a fertility preservation brochure for pediatric oncology patients: A pilot study. J Pediatr Adolesc Gynecol, 2012; 25(2):114–121; doi: 10.1016/j.jpag.2011.10.007
48.
PeateM, MeiserB, CheahBC, et al.Making hard choices easier: A prospective, multicentre study to assess the efficacy of a fertility-related decision aid in young women with early-stage breast cancer. Br J Cancer, 2012; 106(6):1053–1061; doi: 10.1038/bjc.2012.61
49.
QuinnGP, VadaparampilST, Sehovic-NeffI, ClaymanML. Patient and Family Tools to Aid in Education and Decision-Making About Oncofertility. In: (WoodruffTK, ShahDK, VitekWS, eds). Textbook of Oncofertility Research and Practice: A Multidisciplinary Approach. Springer International Publishing; 2019:305–316.
50.
QuayleE, LarkinA, SchwannauerM, et al.Experiences of a digital health intervention for young people exposed to technology assisted sexual abuse: A qualitative study. BMC Psychiatry, 2024; 24(1):237; doi: 10.1186/s12888-024-05605-6
51.
MackJW, FascianoKM, BlockSD. Adolescent and young adult cancer patients’ experiences with treatment decision-making. Pediatrics, 2019; 143(5):e20182800; doi: 10.1542/peds.2018-2800
52.
RobertsonEG, MitchellR, WakefieldCE, et al.Enrolment in paediatric oncology early-phase clinical trials: The health-care professionals’ perspective. J Paediatr Child Health May 2019; 55(5):561–566; doi: 10.1111/jpc.14248
53.
KloskyJL, WangF, RussellKM, et al.Prevalence and predictors of sperm banking in adolescents newly diagnosed with cancer: Examination of adolescent, parent, and provider factors influencing fertility preservation outcomes. J Clin Oncol, 2017; 35(34):3830–3836; doi: 10.1200/JCO.2016.70.4767
