Decision regret among couples experiencing infertility: a mixed methods longitudinal cohort study

Springer Science and Business Media LLC - 2023
Rachel Cusatis1, Colin Johnson2, Katherine D. Schoyer3, Shirng-Wern Tsaih3, Joanna Balza4, Jay Sandlow3,5, Kathryn E. Flynn1
1Department of Medicine, Medical College of Wisconsin, Milwaukee, USA
2Department of Obstetrics and Gynecology, University of Iowa Hospitals and Clinics, Iowa City, USA
3Department of Obstetrics and Gynecology, Medical College of Wisconsin, Milwaukee USA.
4Institute for Health and Equity, Medical College of Wisconsin, Milwaukee, USA
5Department of Urology, Medical College of Wisconsin, Milwaukee, USA

Tóm tắt

Decisions for how to resolve infertility are complex and may lead to regret. We examined whether couples and individuals who sought a consultation from a reproductive specialist for infertility later expressed decisional regret about their family-building choices and whether regret was associated with parental role, family-building paths, or outcomes. This longitudinal mixed methods study included women and their partners who completed a questionnaire prior to their initial consultation with a reproductive specialist and 6 years later. The six-year questionnaire included the Ottawa Decision Regret Scale referencing “the decisions you made about how to add a child to your family.” A score of 25+ indicates moderate-to-severe regret. Additional items invited reflections on family-building decisions, treatments, and costs. A systematic content analysis assessed qualitative themes. Forty-five couples and 34 individuals participated in the six-year questionnaire (76% retention rate), Half (n = 61) of participants expressed no regret, which was similar by role (median 0 for women and supporting partners, F = .08; p = .77). One in 5 women and 1 in 7 partners expressed moderate-to-severe regret. Women who did not pursue any treatment had significantly higher regret (median 15; F = 5.6, p < 0.01) compared to those who pursued IVF (median 0) or other treatments (median 0). Women who did not add a child to their family had significantly higher regret (median 35; F = 10.1, p < 0.001) than those who added a child through treatment (median 0), through fostering/adoption (median 0), or naturally (median 5). Among partners, regret scores were not associated with family-building paths or outcomes. More than one-quarter of participants wished they had spent less money trying to add a child to their family. Qualitative themes included gratitude for parenthood despite the burdensome process of family-building as well as dissatisfaction or regret about the process. Results should be confirmed in other settings to increase generalizability. This longitudinal study provides new insight into the burden of infertility. For women seeking parenthood, any of the multiple paths to parenthood may prevent future decision regret. Greater psychosocial, financial, and decision support is needed to help patients and their partners navigate family-building with minimal regret. When people experience infertility, there are many decisions that can be challenging, such as whether to seek fertility treatments, to pursue fostering/adoption, and how to manage costs. With each decision, there is an opportunity for regret. The goal of this study was to look at whether people who were experiencing infertility and made an appointment with a doctor who specializes in infertility felt any regret about their decisions 6 years later. We also looked at whether different roles (that is, women seeking pregnancy or their supporting partners), different family-building paths (that is, medical treatments or not), or different outcomes (that is, adding a child to their family or not) were associated with different levels of regret. Results showed that half of the 120 people in the study did not have any regret 6 years after meeting with a specialty doctor. However, some patients did have regret, including 20% of women and 14% of partners who expressed moderate-to-severe regret. Women who did not add a child to their family in the six years during the study reported higher regret compared to women who did add a child to their family. There were no such differences among partners. About 25% of participants wished they had tried more, fewer, or different treatments. More than 25% wished they spent less money to try to add a child to their family. For people who want to add a child to their family, there are multiple ways to become a parent, any of which may be linked to lower decision regret. Decision regret is experienced differently between women seeking to add a child to their family and their partners. Would-be parents need more emotional, financial, and decision making support to help them navigate family-building with minimal regret.

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Tài liệu tham khảo

Zegers-Hochschild F, Adamson GD, De Mouzon J, Ishihara O, Mansour R, Nygren K, et al. The International Committee for Monitoring Assisted Reproductive Technology (ICMART) and the World Health Organization (WHO) revised glossary on ART terminology, 2009. Hum Reprod. 2009;24(11):2683–7.

Chachamovich JR, Chachamovich E, Ezer H, Fleck MP, Knauth D, Passos EP. Investigating quality of life and health-related quality of life in infertility: a systematic review. J Psychosom Obstet Gynaecol. 2010;31(2):101–10.

Ramezanzadeh F, Aghssa MM, Abedinia N, Zayeri F, Khanafshar N, Shariat M, et al. A survey of relationship between anxiety, depression and duration of infertility. BMC Womens Health [Internet]. 2004;4(1):9. https://doi.org/10.1186/1472-6874-4-9.

Rashidi B, Montazeri A, Ramezanzadeh F, Shariat M, Abedinia N, Ashrafi M. Health-related quality of life in infertile couples receiving IVF or ICSI treatment. BMC Health Serv Res. 2008;8:186. https://doi.org/10.1186/1472-6963-8-186.

Karabulut A, Özkan S, Oğuz N. Predictors of fertility quality of life (FertiQoL) in infertile women: analysis of confounding factors. Eur J Obstet Gynecol Reprod Biol. 2013;170(1):193–7. https://doi.org/10.1016/j.ejogrb.2013.06.029.

Greil AL, Slauson-Blevins K, McQuillan J. The experience of infertility: a review of recent literature. Sociol Health Illn. 2010;32(1):140–62.

Abbey A, Halman LJ, Andrews FM. Psychosocial, treatment, and demographic predictors of the stress associated with infertility. Fertil Steril. 1992;57(1):122–8.

Mousavi SA, Masoumi SZ, Keramat A, Pooralajal J, Shobeiri F. Assessment of questionnaires measuring quality of life in infertile couples: a systematic review. J Reprod Infertil. 2013;14(3):110–9.

Cusatis R, Fergestrom N, Cooper A, Schoyer KD, Kruper A, Sandlow J, et al. Too much time? Time use and fertility-specific quality of life among men and women seeking specialty care for infertility. BMC Psychol. 2019;7(1):45.

Whiteford LM, Gonzalez L. Stigma: the hidden burden of infertility. Soc Sci Med. 1995;40(1):27–36.

Geneva: World Health Organization. Infertility prevalence estimates, 1990–2021. 2023.

Boivin J, Bunting L, Collins JA, Nygren KG. International estimates of infertility prevalence and treatment-seeking: potential need and demand for infertility medical care. Hum Reprod [Internet]. 2007;22(6):1506–12. https://doi.org/10.1093/humrep/dem046.

NSFG - Listing I - Key Statistics from the National Survey of Family Growth. https://www.cdc.gov/nchs/nsfg/key_statistics/i.htm. Accessed 13 Aug 2023.

Cusatis R, Fergestrom N, Cooper A, Schoyer KD, Kruper A, Sandlow J, et al. Too much time? Time use and fertility-specific quality of life among men and women seeking specialty care for infertility. BMC Psychol. 2019;7(1):1–9. https://doi.org/10.1186/s40359-019-0312-1.

Verhaak CM, Smeenk JMJ, van Minnen A, Kremer JAM, Kraaimaat FW. A longitudinal, prospective study on emotional adjustment before, during and after consecutive fertility treatment cycles. Hum Reprod. 2005;20(8):2253–60.

Olshansky EF. Infertility and its influence on women’s career identities. Health Care Women Int. 1987;8(2–3):185–96. https://doi.org/10.1080/07399338709515781.

Greil AL. Infertility and psychological distress: a critical review of the literature. Soc Sci Med. 1997;45(11):1679–704.

Duthie EA, Cooper A, Davis JB, Sandlow J, Schoyer KD, Strawn E, et al. Priorities for family building among patients and partners seeking treatment for infertility. Reprod Health. 2017;14(1):52.

Anguzu Cusatis, R., Fergestrom N., Cooper A., Sandlow J., Schoyer K., Flynn K.E. R. Decision-making and decisional conflict among couples seeking treatment for infertility. Hum Reprod

Mesquita da Silva S, Place JM, Boivin J, Gameiro S. Failure after fertility treatment: regulation strategies when facing a blocked parenthood goal. Hum Fertil (Camb). 2020;23(3):179–85.

Johnson KM, Johnson DR. Partnered Decisions? U.S. Couples and Medical Help-seeking for Infertility. Fam Relat. 2009;58(4):431.

Peddie VL, van Teijlingen E, Bhattacharya S. A qualitative study of women’s decision-making at the end of IVF treatment. Hum Reprod. 2005;20(7):1944–51.

Rajkhowa M, McConnell A, Thomas GE. Reasons for discontinuation of IVF treatment: a questionnaire study. Hum Reprod. 2005;21(2):358–63.

Verberg MFG, Eijkemans MJC, Heijnen E, Broekmans FJ, de Klerk C, Fauser B, et al. Why do couples drop-out from IVF treatment? A prospective cohort study. Hum Reprod. 2008;23(9):2050–5.

Copp T, Kvesic D, Lieberman D, Bateson D, McCaffery KJ. ‘Your hopes can run away with your realistic expectations’: a qualitative study of women and men’s decision-making when undergoing multiple cycles of IVF. Hum Reprod Open. 2020;2020(4):1–8. https://doi.org/10.1093/hropen/hoaa059.

Lyerly AD, Nakagawa S, Kuppermann M. Decisional conflict and the disposition of frozen embryos: implications for informed consent. Hum Reprod. 2011;26(3):646–54.

Lyerly AD, Steinhauser K, Namey E, Tulsky JA, Cook-Deegan R, Sugarman J, et al. Factors that affect infertility patients’ decisions about disposition of frozen embryos. Fertil Steril. 2006;85(6):1623–30.

Svanberg AS, Boivin J, Bergh T. Factors influencing the decision to use or discard cryopreserved embryos. Acta Obstet Gynecol Scand. 2001;80(9):849–55.

Lyerly AD, Faden RR. Willingness to donate frozen embryos for stem cell research. Science. 2007;317(5834):46–7. https://doi.org/10.1126/science.1145067.

Insurance Coverage by State | RESOLVE: The National Infertility Association. https://resolve.org/learn/financial-resources-for-family-building/insurance-coverage/insurance-coverage-by-state/. Accessed 16 Aug 2023.

Becerra Pérez MM, Menear M, Brehaut JC, Légaré F. Extent and predictors of decision regret about health care decisions: a systematic review. Med Decis Making. 2016;36(6):777–90.

Gilovich A, Husted V, Bickford T, Blau K, Charlton A, Buckley T, et al. Psychological Review The Experience of Regret: What When, and Why Regrets of Action and Inaction What People Regret Most in Their Lives The Temporal Aspects of Regret Intuitions About the Short-Term and Long-Term Regrets of Others Recent and Life-Long Regrets Why Regrets Shift Systematically With Time Factors That Reduce the Pain of Regrettable Actions Factors That Bolster the Pain of Regrettable Inactions. Psychol Rev. 1995;102(2):379–95.

Connolly T, Reb J. Regret in cancer-related decisions. Health Psychol. 2005;24(4S):S29-34.

Greil AL, Lowry MH, Burch AR, Slauson-Blevins K, Park N, McQuillan J. Reproductive regrets among a population-based sample of U.S. women. Socius. 2022. https://doi.org/10.1177/23780231221142969.

Hassan AH, Zalata AA, Christophe A, Comhaire F, Mostafa T, Chan WS, et al. Patient satisfaction is best predicted by low decisional regret among women with cancer seeking fertility preservation counseling (FPC). Fertil Steril. 2014;102(3): e162.

Jayasuriya S, Peate M, Allingham C, Li N, Gillam L, Zacharin M, et al. Satisfaction, disappointment and regret surrounding fertility preservation decisions in the paediatric and adolescent cancer population. J Assist Reprod Genet. 2019;36(9):1805–22.

Chan CHY, Lau HPB, Tam MYJ, Ng EHY. A longitudinal study investigating the role of decisional conflicts and regret and short-term psychological adjustment after IVF treatment failure. Hum Reprod. 2016;31(12):2772–80.

Duthie EA, Cooper A, Davis JB, Schoyer KD, Sandlow J, Strawn EY, et al. A conceptual framework for patient-centered fertility treatment. Reprod Health. 2017;14(1):114.

Harris PA, Taylor R, Minor BL, Elliott V, Fernandez M, O’Neal L, et al. The REDCap consortium: building an international community of software platform partners. J Biomed Inform. 2019;95: 103208.

Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377–81.

Brehaut JC, O’Connor AM, Wood TJ, Hack TF, Siminoff L, Gordon E, et al. Validation of a decision regret scale. Med Decis Making. 2003;23(4):281–92. https://doi.org/10.1177/0272989X03256005.

O’connor AM. Validation of a decisional conflict Scale. Med Decis Making. 1995;15(1):25–30.

StataCorp. Stata Statistical Software. 2015;

Marshall C, Rossman GB. Designing qualitative research. Thousand Oaks: SAGE Publications; 2014.

Crabtree BF, Miller WL. Doing Qualitative Research [Internet]. SAGE Publications; 1999. Available from: https://market.android.com/details?id=book-fmHWCQAAQBAJ

Gibbs G. Analyzing qualitative data. The Sage qualitative research kit. 2007;160. https://psycnet.apa.org/fulltext/2007-16737-000.pdf

QSR International Pty Ltd. Nvivo. 2020;

Chan WS, Niemasik EE, Kao C-N, Katz A, Belkora J, Rosen MP, et al. Decisional regret in women diagnosed with cancer who undergo reproductive health counseling (RHC). Fertil Steril. 2013;100(3):S26.

Sundaram V, Morris MPHJR, Anderson MBAJ, Noel M. The cost of infertility (coin) study: modeling decision regret. Fertil Steril. 2020;114(3): e111.

United States Census Bureau - Quick Facts Wisconsin. https://www.census.gov/quickfacts/WI. Accessed 6 Jun 2022.

Chen T-H, Chang S-P, Tsai C-F, Juang K-D. Prevalence of depressive and anxiety disorders in an assisted reproductive technique clinic. Hum Reprod. 2004;19(10):2313–8.

Crawford NM, Hoff HS, Mersereau JE. Infertile women who screen positive for depression are less likely to initiate fertility treatments. Hum Reprod. 2017;32(3):582–7.

Zurlo MC, Cattaneo Della Volta MF, Vallone F. Predictors of quality of life and psychological health in infertile couples: the moderating role of duration of infertility. Qual Life Res. 2018;27(4):945–54. https://doi.org/10.1007/s11136-017-1781-4.

Huppelschoten AG, van Dongen AJCM, Verhaak CM, Smeenk JMJ, Kremer JAM, Nelen WLDM. Differences in quality of life and emotional status between infertile women and their partners. Hum Reprod. 2013;28(8):2168–76. https://doi.org/10.1093/humrep/det239.

Sousa-Leite M, Costa R, Figueiredo B, Gameiro S. Discussing the possibility of fertility treatment being unsuccessful as part of routine care offered at clinics: patients’ experiences, willingness, and preferences. Hum Reprod. 2023;38(7):1332.

Hennink M, Kaiser BN. Sample sizes for saturation in qualitative research: a systematic review of empirical tests. Soc Sci Med. 2022;292: 114523.

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