To understand how adolescents and young adults (AYAs) with cancer experience family and partner involvement in fertility preservation (FP) decision-making.
Methods:
As part of a nationally representative Australian cross-sectional study of 15–25-year olds with cancer, 196 participants (mean age 19.9 [standard deviation 3.2] years at diagnosis; 51% male) were surveyed regarding FP decision-making.
Results:
One hundred sixty-one (83%) participants reported discussion of potential effects of cancer and its treatment on fertility, of whom 57 (35%) did not undertake FP (51% of females; 19% of males). Parental involvement (mothers 62%, fathers 45%) in decision-making was considered helpful, including for 73% of 20–25-year olds with partners. Sisters and brothers were involved less often, yet rated helpful in 48% and 41% of cases, respectively. Older participants were more likely than younger ones to have involved partners (47% vs. 22%, p = 0.001) and less likely to have involved mothers (56% vs. 71%, p = 0.04) or fathers (39% vs. 55%, p = 0.04).
Conclusion:
This is the first quantitative study to explore family and partner involvement in AYA FP decision-making in both females and males in a nationally representative sample. Parents are important resources who commonly assist AYAs with these complex decisions. Although many AYAs will be the main decision-makers when it comes to FP, particularly as AYAs mature, these data suggest that resources and support should be available for and inclusive of parents, partners, and siblings.
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References
1.
Australian Institute of Health and Welfare. Cancer in Adolescents and Young Adults in Australia. Canberra: AIHW; 2018.
2.
GeueK, RichterD, SchmidtR, et al.The desire for children and fertility issues among young German cancer survivors. J Adolesc Health, 2014; 54(5):527–535.
3.
LoganS, PerzJ, UssherJM, et al.Systematic review of fertility-related psychological distress in cancer patients: Informing on an improved model of care. Psychooncology, 2019; 28(1):22–30.
4.
CrawshawM. Psychosocial oncofertility issues faced by adolescents and young adults over their lifetime: A review of the research. Hum Fertil, 2013; 16(1):59–63.
5.
BastingsL, BeerendonkCCM, WestphalJR, et al.Autotransplantation of cryopreserved ovarian tissue in cancer survivors and the risk of reintroducing malignancy: A systematic review. Hum Reprod Update, 2013; 19(5):483–506.
6.
LiN, JayasingheY, KemertzisMA, et al.Fertility preservation in pediatric and adolescent oncology patients: The decision-making process of parents. J Adolesc Young Adult Oncol, 2017; 6(2):213–222.
7.
KwakM, ZebrackBJ, MeeskeKA, et al.Trajectories of psychological distress in adolescent and young adult patients with cancer: A 1-year longitudinal study. J Clin Oncol, 2013; 31(17):2160–2166.
8.
KosolaS, McCarthyMC, McNeilR, et al.Early education and employment outcomes after cancer in adolescents and young adults. J Adolesc Young Adult Oncol, 2018; 7(2):238–244.
9.
LehmannV, KeimMC, FerranteAC, et al.Psychosexual development and satisfaction with timing of developmental milestones among adult survivors of childhood cancer. Psychooncology, 2018; 27(8):1944–1949.
10.
DieluweitU, DebatinK-M, GrabowD, et al.Social outcomes of long-term survivors of adolescent cancer. Psychooncology, 2010; 19(12):1277–1284.
11.
DaviesJ, HanniganB, KellyD. The experience of partners supporting adolescents and young adults with cancer. J Adv Nurs, 2019; 75(11):2890–2898.
12.
SawyerSM, McCarthyMC, DuntD, et al.Fulfilling the vision of youth-friendly cancer care: A study protocol. J Adolesc Young Adult Oncol, 2016; 5(3):267–277.
13.
HarlanLC, LynchCF, KeeganTHM, et al.Recruitment and follow-up of adolescent and young adult cancer survivors: The AYA HOPE study. J Cancer Surviv, 2011; 5(3):305–314.
14.
KeeganTHM, LichtensztajnDY, KatoI, et al.Unmet adolescent and young adult cancer survivors information and service needs: A population-based cancer registry study. J Cancer Surviv, 2012; 6(3):239–250.
15.
BellizziKM, SmithA, SchmidtS, et al.Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult. Cancer, 2012; 118(20):5155–5162.
16.
CheungCK. Young cancer patients as future leaders in the global knowledge economy. Cancer Ther Oncol Int J, 2018; 10(4):68–71.
17.
FootG, R. S-F. Measuring the unmet needs of people living with cancer. Cancer Forum, 1995; 19:131–135.
18.
McCarthyMC, McNeilR, DrewS, et al.Information needs of adolescent and young adult cancer patients and their parent-carers. Support Care Cancer, 2018; 26(5):1655–1664.
19.
GesslerD, JuraskovaI, Sansom-DalyUM, et al.Clinician-patient-family decision-making and health literacy in adolescents and young adults with cancer and their families: A systematic review of qualitative studies. Psychooncology, 2019; 28(7):1408–1419.
20.
RobertsonEG, WakefieldCE, ShawJ, et al.Decision-making in childhood cancer: Parents' and adolescents' views and perceptions. Support Care Cancer, 2019; 27(11):4331–4340.
21.
SawyerSM, AzzopardiPS, WickremarathneD, et al.The age of adolescence. Lancet Child Adolesc Health, 2018; 2(3):223–228.
22.
PanjwaniAA, Marín-ChollomAM, PervilIZ, et al.Illness uncertainties tied to developmental tasks among young adult survivors of hematologic cancers. J Adolesc Young Adult Oncol, 2019; 8(2):149–156.
23.
NewtonK, HowardAF, ThorneS, et al.Facing the unknown: Uncertain fertility in young adult survivors of childhood cancer. J Cancer Surviv, 2021; 15(1):54–65.
24.
YoshidaK, MatsuiY. The impact of cancer on romantic relationships and marriage postdiagnosis among young adult cancer survivors in Japan: A qualitative study. J Adolesc Young Adult Oncol, 2022; 11(2):146–155.
25.
DaviesJ, KellyD, HanniganB. ‘Life then’, ‘life interrupted,’ ‘life reclaimed’: The fluctuation of agency in teenagers and young adults with cancer. Eur J Oncol Nurs, 2018; 36:48–55.
26.
CrawshawMA, SloperP. ‘Swimming against the tide’—The influence of fertility matters on the transition to adulthood or survivorship following adolescent cancer. Eur J Cancer Care (Engl), 2010; 19(5):610–620.
27.
KorteE, SchillingR, BalcerekM, et al.Fertility-related wishes and concerns of adolescent cancer patients and their parents. J Adolesc Young Adult Oncol, 2020; 9(1):55–62.
28.
BenedictC, ShukE, FordJS. Fertility issues in adolescent and young adult cancer survivors. J Adolesc Young Adult Oncol, 2016; 5(1):48–57.
29.
BarlevyD, WangmoT, ElgerBS, et al.Attitudes, beliefs, and trends regarding adolescent oncofertility discussions: A systematic literature review. J Adolesc Young Adult Oncol, 2016; 5(2):119–134.
30.
EllisSJ, WakefieldCE, McLooneJK, et al.Fertility concerns among child and adolescent cancer survivors and their parents: A qualitative analysis. J Psychosocial Oncol, 2016; 34(5):347–362.
31.
PerezGK, SalsmanJM, FladeboeK, et al.Taboo topics in adolescent and young adult oncology: Strategies for managing challenging but important conversations central to adolescent and young adult cancer survivorship. Am Soc Clin Oncol Educ Book, 2020; 40:1–15.
32.
QuinnGP, MurphyD, KnappC, et al.Who decides? Decision making and fertility preservation in teens with cancer: A review of the literature. J Adolesc Health, 2011; 49(4):337–346.
33.
Grootens-WiegersP, HeinIM, van den BroekJM, et al.Medical decision-making in children and adolescents: Developmental and neuroscientific aspects. BMC Pediatr, 2017; 17(1):120.
34.
WakefieldCE, McLooneJK, FlemingCAK, et al.Adolescent cancer and health-related decision-making: An Australian multi-perspective family analysis of appointment attendance and involvement in medical and lifestyle choices. J Adolesc Young Adult Oncol, 2011; 1(4):173–180.
35.
PennantS, LeeSc, HolmS, et al.The role of social support in adolescent/young adults coping with cancer treatment. Children, 2020; 7(1):2.
36.
GinsbergJP, OgleSK, TuchmanLK, et al.Sperm banking for adolescent and young adult cancer patients: Sperm quality, patient, and parent perspectives. Pediatr Blood Cancer, 2008; 50(3):594–598.
37.
CrawshawMA, GlaserAW, HaleJP, et al.Male and female experiences of having fertility matters raised alongside a cancer diagnosis during the teenage and young adult years. Eur J Cancer Care, 2009; 18(4):381–390.
38.
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.
39.
GlackinA, MarinoJL, PeateM, et al.Experiences of oncofertility decision-making and care in a national sample of adolescent and young adult (AYA) cancer patients and parents. J Adolesc Young Adult Oncol, 2023. DOI: 10.1089/JAYAO.2023.0036
40.
MackJW, FascianoKM, BlockSD. Adolescent and young adult cancer patients' experiences with treatment decision-making. Pediatrics, 2019; 143(5):e20182800.
41.
YiJ, KimMA, AnS. The experiences of korean young adult survivors of childhood cancer: A photovoice study. Qual Health Res, 2016; 26(8):1044–1054.
42.
ShnorhavorianM, HarlanLC, SmithAW, et al.Fertility preservation knowledge, counseling, and actions among adolescent and young adult patients with cancer: A population-based study. Cancer, 2015; 121(19):3499–3506.
43.
ArmuandGM, Rodriguez-WallbergKA, WettergrenL, et al.Sex differences in fertility-related information received by young adult cancer survivors. J Clin Oncol, 2012; 30(17):2147–2153.
44.
YeomansonDJ, MorganS, PaceyAA. Discussing fertility preservation at the time of cancer diagnosis: Dissatisfaction of young females. Pediatr Blood Cancer, 2013; 60(12):1996–2000.
45.
McQuillanS, MalenfantD, JayasingheYL, et al.Audit of current fertility preservation strategies used by individual pediatric oncologists throughout Australia and New Zealand. J Pediatr Oncol, 2013; 1:112–118.
46.
VadaparampilST, ClaytonH, QuinnGP, et al.Pediatric oncology nurses' attitudes related to discussing fertility preservation with pediatric cancer patients and their families. J Pediatr Oncol Nurs, 2007; 24(5):255–263.
47.
Australian Institute of Health and Welfare. Australia's Mothers and Babies. Canberra: AIHW; 2021.
48.
Australian Bureau of Statistics. Births, Australia, 2020. Canberra: ABS; 2021.
49.
Clinton-McHargT, CareyM, Sanson-FisherR, et al.Recruitment of representative samples for low incidence cancer populations: Do registries deliver?. BMC Med Res Methodol, 2011; 11(1):5.
50.
Jackson LevinN, ZhangA, KattariS, et al.“Queer Insights”: Considerations and challenges for assessing sex, gender identity, and sexual orientation in oncofertility research. Annals LGBTQ Public Popul Health, 2022; 3(2):111–128.
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