European citizens affected by infertility need your support in developing regulations that ensure easy, publicly funded, and timely access to evidence-based psychosocial care at any stage of their infertility journey.
Background
Infertility, defined as the inability to achieve a pregnancy after 12 months of regular unprotected sexual intercourse, affects 17% of people worldwide1 and was ranked as fifth in the list of moderate to severe disabilities within the global population under the age of 60 by the World Health Organization2. In Europe, infertility affects 1 in 6 couples of reproductive age, and in some countries, it is as high as 20%. This translates to 25 million EU citizens in need of diagnosis and treatment for infertility3. Furthermore, many other people are unable to reproduce either as an individual (e.g., single women) or with his/her partner (e.g., gay people, people with genetic conditions). For instance, in the United Kingdom and other European countries, around 1 in 5 women reach 45 without a child, with only 3% of these being childless by choice4.
At a time when the total fertility rate in Europe is the lowest of all continents1 and has stayed under replacement rate since the 70s, there is strong public support for European citizens to have access to publicly funded medically assisted reproduction (MAR). MAR contributes to increase fertility rates in European countries and helps involuntary childless pople realise parenthood5, 6, thereby supporting Europe’s economy and ageing population. However, the efficacy of MAR in dependent on people’s ability to undergo multiple cycles. For instance, in vitro fertilisation (IVF) has a 33% success rate per cycle but can go up to 60% if patients do three cycles7.
Why is psychosocial care crucial to successful infertility management?
The European Commission’s ‘Comprehensive approach to mental health’ communication, published in June 20238, states mental health is a precondition for a productive economy and inclusive society and urges all Member States to adopt an approach that promotes mental health across all policies.
Psychosocial care is defined as care that enables patients, their families, and their healthcare providers to optimize fertility care and manage the psychological and social implications of infertility and its treatment9. There are 5 key reasons why easy and timely access to publicly-funded and evidence-based psychosocial care for people affected by infertility is required:
- Infertility has significant societal and health consequences for most affected people, including social stigma, poor physical and mental wellbeing, and even economic hardship10. People with infertility have poorer mental health and quality of life than the general population11, 12 and report equal levels of distress to people with life-threatening conditions such as cancer and HIV13.
- Medically assisted reproduction assists patients in achieving parenthood. Therefore, most people may have to manage the psychosocial consequences of infertility throughout their full lives, for instance, if they decide to have more children.
- Most patients find it difficult to manage the typically lengthy, technically demanding, physically intrusive, and disruptive fertility treatment, as well as the high uncertainty of success. Most patients experience some degree of emotional distress during treatment14, and around 30% of women and 10% of men are diagnosed with a mental-health disorder15.
- Two in every 10 patients who start MAR stop it before doing three cycles or achieving pregnancy because they are unable to cope with the emotional challenges of treatment16, 17.
- Three to four in every 10 patients who start MAR end it without children7. This loss triggers a prolonged and intense grief period lasting on average 2-years, during which people experience lower mental health and wellbeing than those who have children with treatment18. The psychosocial sequels of infertility can also persist into pregnancy, as patients using assisted reproduction report higher anxiety about foetal viability and health19.
Overall, the impacts of infertility are comparable to that of mental health issues during pregnancy or the post-partum period, for instance post-partum depression, but are much less acknowledged and not yet properly addressed.
The best available evidence show that the provision of routine evidence-based psychosocial care for infertility and assisted reproduction successfully reduces the distress of infertility and its treatment, as well as concerns about medical procedures20. It can improve lifestyle outcomes21, knowledge22, and patient optimism and wellbeing during stressful moments of treatment, for instance when waiting to know its outcome23, 24. Empathic care is also associated with better experiences of and satisfaction with care25-27.
Overall, provision of psychosocial care mean people affected by infertility will be empowered to manage their fertility and treatment journey in a healthier way, avoiding deterioration of mental health and associated spillover effects such as loss of work productivity28,29 or additional use of medication and mental health services30. It can also foster resilience during childbirth and the postpartum period, during which the risk of mental illness and use of residential parenting services is high in people who conceive with fertility treatment31,32.
Importantly, multiple systematic reviews show psychosocial care interventions increase pregnancy rates for patients undergoing MAR33-35. This is most likely because these interventions impart patients with education and skills that help them cope with the challenges of treatment, enabling them to do multiple cycles of treatment. Finally, psychosocial interventions can also ease grief reactions and facilitate adjustment when treatment doesn’t work36.
Why is regulation needed?
Despite the strong evidence in support of the provision of psychosocial care for infertility and assisted reproduction, there are clear indications that this is not the reality observed across Europe.
- Our recent patient European Survey showed that 8 in 10 patients reported needing psychosocial care during fertility treatment, but only 2 in 10 were offered it, and only 12% reported the costs were included with treatment (Fertility Europe SURVEY findings).
- Mental health professionals are not routinely employed nor integrated within a multidisciplinary team at fertility clinics37.
- Evidence-based guidelines38 to implement psychosocial care in infertility and MAR exist and professionals perceive their patients benefit from them implementing these, but only 30% actually feel able to do it39
- Field research shows that around 10-20% of patients are at risk for experiencing significant distress during MAR, but that these patients are not identified nor prioritised for support40.
- There an imbalance in the provision of psychosocial care in MAR: most existing interventions and initiatives focus on supporting patients through treatment, reflecting a neglect of the duty of care towards those for whom treatment does not work 41.
Stronger regulation of psychosocial care for infertility and assisted reproduction is needed to ensure it is an integral part of infertility management in Europe and that it meets minimum quality standards:
Accessibility: Everyone in Europe affected by infertility must have easy, public-funded, and timely access to evidence-based psychosocial care throughout their infertility journey.
- Existing legal restrictions and disparities in access to MAR, as well as its low success rates, highlight the duty of care towards people for whom treatment does not offer a pathway to parenthood.
- The specific, significant, protracted, and cumulative impacts of infertility and its treatment can only be addressed if support is available and tailored for the different stages of people’s fertility journey.
- Infertility impacts not only people diagnosed with the condition, but also other stakeholders (e.g., partners, donors, children born with assisted reproduction, professionals, etc.) who also need and benefit from support.
Integrated care: Mental health professionals must be embedded within a multidisciplinary fertility team and psychosocial care practices must be articulated with medical treatment to ensure a comprehensive approach to patient care.
- Integrated care is proved to increase the use of mental health services, decrease psychological distress, improve patient satisfaction, adherence to medical treatment, and reduce disparities in access to mental health care42, 43.
- Integrated care ensures timely referrals and early intervention for more distressed or vulnerable patients, who are less able to self-refer for support44 and less likely to start fertility treatment 45.
- Integrated care ensures immediate activation of support during patient crisis (e.g., panic attacks, scans revealing pregnancy losses) to ensure effective communication (e.g., bad news delivery) and support37.
- Integrated care should ensure that the 4 in every 10 patients7 who go through the loss of ending treatment without children18 are referred to access timely and efficient support36.
Evidence-based practice: Psychological care must be based on the best available research evidence.
- Mental-health professionals working at fertility clinics must be trained to know how to use the best available research evidence when making clinical decisions about patient care46.
- Public funding should prioritise the provision of psychosocial care interventions for which there is high-quality evidence of efficacy. Evidence synthesis indicate that group-format interventions and interventions that impart knowledge or coping skills or are based on cognitive-behavioural principles33, 47 tend to be effective.
- Public funding must invest in the development and evaluation of interventions co-produced with patients, to ensure these target patients’ expressed needs across the whole of their infertility journey and promote their valued outcomes.
Continuous Professional Development (CPD): Fertility care providers must offer a comprehensive CPD portfolio focusing on evidence-based psychological care to all their healthcare professionals and ensure up-to-date qualifications.
- As per the ESHRE sponsored Guidelines for routine psychosocial care in infertility and assisted reproduction38, psychosocial care must be a multi-disciplinary enterprise whereby all professionals who have direct contact with patients play a role.
- All members of staff must be trained in basic psychosocial care competences, including patient-centred-care, psychosocial education, communication skills, culturally sensitive, and trauma-informed care.
Empowering Infertility Patients with Psychosocial Care
Integrated psychosocial care promotes healthier adjustment to infertility, ensures better experiences of treatment, and contributes to higher success rates in MAR, which has the potential to offset population aging in Europe6 and support the economy and an ageing population. Nonetheless, it is systematically under prioritised across Europe. We urge policy makers, public health authorities, regulator bodies, and scientific societies in EU Member States, to reinforce regulation that ensures the implementation of psychosocial care standards in public and private healthcare practice.
Thank you to Dr. Sofia Gameiro – Cardiff University, for supporting us in creating the recommendations!
References
1. Cox, C., et al., Infertility prevalence and the methods of estimation from 1990 to 2021: a systematic review and meta-analysis. Human Reproduction Open, 2022.
2. World Health Organization, et al., World Report on Disability. 2011, World Health Organization: Geneva.
3. ESHRE, Facsheet on infertility – prevalence, treatment and fertility decline in Europe. 2021.
4. Präg, P., et al., Childlessness and Assisted Reproduction in Europe. in Families and Societies Working Paper Series. 2017.
5. Fauser, B.C., et al., Beliefs, attitudes and funding of assisted reproductive technology: Public perception of over 6,000 respondents from 6 European countries. PLoS One, 2019.
6. Hoorens, S., et al., Can assisted reproductive technologies help to offset population ageing? An assessment of the demographic and economic impact of ART in Denmark and UK. Human Reproduction, 2007.
7. McLernon, D.J., et al., Predicting the chances of a live birth after one or more complete cycles of in vitro fertilization: population based study of linked data from 113873 women. BMJ, 2016.
8. European Commission, Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions on a Comprehensive Approach to Mental Health. 2023: Brussels.
9. Page, A.E., et al., Cancer care for the whole patient: Meeting psychosocial health needs. 2008.
10. Thoma, M., et al., Biological and social aspects of human infertility: a global perspective, in Oxford research encyclopedia of global public health. 2021.
11. Luk, B.H.-K., et al., The impact of infertility on the psychological well-being, marital relationships, sexual relationships, and quality of life of couples: A systematic review. Journal of sex & marital therapy, 2015.
12. Chachamovich, J.R., et al., What variables predict generic and health-related quality of life in a sample of Brazilian women experiencing infertility? Human Reproduction, 2007.
13. Domar, A.D., et al., The psychological impact of infertility: a comparison with patients with other medical conditions. Journal of psychosomatic obstetrics and gynaecology, 1993.
14. Verhaak, C.M., et al., Women’s emotional adjustment to IVF: A systematic review of 25 years of research. Human Reproduction Update, 2007.
15. Yli-Kuha, A.-N., et al., Psychiatric disorders leading to hospitalization before and after infertility treatments. Human Reproduction, 2010.
16. Gameiro, S., et al., Why do patients discontinue fertility treatment? A systematic review of reasons and predictors of discontinuation in fertility treatment. Human Reproduction Update, 2012.
17. Gameiro, S., et al., Why we should talk about compliance with Assisted Reproductive Technologies (ART): a Systematic Review and Meta-Analysis of ART compliance rates. Human Reproduction Update, 2013.
18. Gameiro, S., et al., Long-term djustment to unmet parenthood goals following ART: a systematic review and meta-analysis. Human Reproduction Update, 2017.
19. Hammarberg, K., et al., Psychological and social aspects of pregnancy, childbirth and early parenting after assisted conception: A systematic review. Human Reproduction Update, 2008.
20. Gameiro, S., et al., Optimal IVF for 2020 should reduce treatment burden and enhance care delivery for patients and staff. Fertility and Sterility, 2013.
21. Oostingh, E.C., et al., First effective mHealth nutrition and lifestyle coaching program for subfertile couples undergoing in vitro fertilization treatment: a single-blinded multicenter randomized controlled trial. Fertility and sterility, 2020.
22. Hope, N., Can an educational DVD improve the acceptability of elective single embryo transfer? A randomized controlled study. Fertility and Sterility, 2010.
23. Shah, J.S., et al., Impact of empathic physician contact on patient anxiety and distress during the waiting period after embryo transfer: a randomized controlled trial. Reproductive BioMedicine Online, 2022.
24. Ockhuijsen, H.D.L., et al., Clarifying the benefits of the Positive Reappraisal Coping intervention for the women waiting for the outcome of IVF. Human Reproduction, 2014.
25. Aarts, J.W.M., et al., How patient-centred care relates to patients’ quality of life and distress: A study in 427 women experiencing infertility. Human Reproduction, 2012.
26. Pedro, J., et al., Postive experiences of patient-centred care are associated with intentions to comply with fertility treatment: Findings from the validation of the Portuguese version of the PCQ-Infertility. Human Reproduction, 2013.
27. Shandley, L.M., et al., Patient-centered care: factors associated with reporting a positive experience at United States fertility clinics. Fertility and sterility, 2020.
28. Gremillet, L., et al., Endometriosis, infertility and occupational life: women’s plea for recognition. BMC Women’s Health, 2023.
29. Hanna, E., et al., The impact of infertility on men’s work and finances: Findings from a qualitative questionnaire study. Gender, Work & Organization, 2020.
30. Johansson, M., et al., Quality of life for couples 4-5.5 years after unsuccessful IVF treatment. Acta Obstericia et Gynecologica Scandinavica, 2009.
31. Meltzer-Brody, S., et al., Postpartum psychiatric disorders. Nature Reviews Disease Primers, 2018.
32. Hammarberg, K., et al., Early post-partum adjustment and admission to parenting services in Victoria, Australia after assisted conception. Human Reproduction, 2009.
33. Frederiksen, Y., et al., Efficacy of psychosocial interventions for psychological and pregnancy outcomes in infertile women and men: a systematic review and meta-analysis. BMJ Open, 2015.
34. Katyal, N., et al., The association between psychosocial interventions and fertility treatment outcome: A systematic review and meta-analysis. European Journal of Obstetrics & Gynecology and Reproductive Biology, 2021.
35. Hämmerli, K., et al., The efficacy of psychological interventions for infertile patients: a meta-analysis examining mental health and pregnancy rate. Human Reproduction Update, 2009.
36. Rowbottom, B., et al., Feasibility randomized controlled trial of a self-guided online intervention to promote psychosocial adjustment to unmet parenthood goals. Human Reproduction, 2022.
37. Sax, M.R., et al., Emotional support for infertility patients: Integrating mental health professionals in the fertility care team. Women, 2022.
38. Gameiro, S., et al., ESHRE guideline: routine psychosocial care in infertility and medically assisted reproduction-a guide for fertility staff. Human Reproduction, 2015.
39. Gameiro, S., et al., Dissemination, implementation and impact of the ESHRE evidence-based guidelines. Human Reproduction Open, 2019.
40. Pasch, L.A., et al., Addressing the needs of fertility treatment patients and their partners: are they informed of and do they receive mental health services? Fertility and sterility, 2016.
41. Sousa Leite, M., et al., Discussing the possibility of fertility treatment being unsuccessful as part of routine care offered at clinics: patients’ experiences, willingness, and preferences. Human Reproduction, 2023.
42. Funk, M., et al., Integrating mental health into primary healthcare. Mental health in family medicine, 2008.
43. Prom, M.C., et al., Implementation of integrated behavioral health care in a large medical center: Benefits, challenges, and recommendations. The journal of behavioral health services & research, 2021.
44. Boivin, J., et al., Why are infertile patients not using psychosocial counselling? Human Reproduction, 1999.
45. Crawford, N.M., et al., Infertile women who screen positive for depression are less likely to initiate fertility treatments. Human Reproduction, 2017.
46. Sackett, D., et al., Evidence-based medicine: How to practice and teach EBM. 2000, Edinburgh: Churchill Livingstone.
47. Boivin, J., A review of psychosocial interventions in infertility. Social Science & Medicine, 2003.