What are the key psychosocial support strategies recommended by HFEA, ESHRE, and NICE guidelines for patients facing the end of unsuccessful fertility treatments?
During this event, Dr Mariana Sousa-Leite (MSc, PhD), ESRC Postdoctoral Research Associate at the School of Psychology, Cardiff University discussed the psychosocial support options for patients moving forward after unsuccessful fertility treatment and presented research on how psychological resilience and tailored support can help patients navigate the emotional challenges of unsuccessful fertility treatments.
Dr Sousa-Leite has been focusing her work on developing and evaluating support for fertility patients to prepare and better cope if and when treatment does not work. According to the latest data from the HFEA, more and more people in the UK are currently using fertility treatments, particularly IVF, to have children. These data show that most patients do 1 or 2 treatment cycles, with only around 15% undergoing 3 or more cycles. However, even undergoing a single cycle of IVF can be physically, emotionally, and relationally challenging.
The data indicates that almost half of the patients end treatment without the children they desired. The end of treatment means when the patients end the last treatment cycle and this cycle does not work, and no new cycles will be attempted. Therefore, it is the end of treatment, the end of all cycles.
Data from interviews and focus groups with patients show that this outcome can trigger feelings of loss, grief, anger, emptiness, or isolation.
Some patients describe this as one of the worst experiences they’ve ever had in their life. With time, most patients find peace and healthily adjust to this outcome.
However, although treatments that do not work are a common outcome in fertility care, research shows patients often feel ill-informed and ill-prepared during treatment for this outcome. Patients report feeling abandoned by their clinics and left to cope with this undesired outcome on their own.
With this evidence, the challenge of undergoing treatments is obvious, as well as the burden that ending it without a child or the desired number of children can be. Patients describe their experience and how they cope with the treatment outcome can be affected by the routine care provided by the clinic.
Research on patients’ evaluation of clinic care shows that more positive experiences can be reported with more patient-centred care. Therefore, care that meets patients’ values, expectations, and needs. However, fertility guidelines and regulators show that there is a lack of clinic recommendations and evidence-based support for patients when treatment does not work.
A lot of things exist and support exists before and during treatment, but there is a lack of resources and support for when treatment does not work.
A systematic review and meta-analysis of what patients say showed what they can experience when treatment ends and does not work.
For example, they felt abandoned by their clinic and perceived a lack of support in deciding if and when to end treatment, and once the decision was made, they expressed a need for psychosocial care or counselling to help them cope with the intense grief.
Therefore, a bilingual online survey on patients’ experiences, willingness, and preferences for being counselled in advance, before the treatment ends, about the possibility that treatment may not work has been released.
Results showed that 9 in 10 patients would be willing to receive this preventive care support. However, only one-third reported receiving it, and most said that these discussions did not target all the topics they would like to. What did patients say? This survey showed that most patients want to have this conversation about the possibility that treatment may not work before initiating their first IVF cycle. Most would like this to be multidisciplinary, mainly from a mental health professional and a consultant. Patients would like to discuss coping strategies if treatment does not work and receive help managing their expectations and fostering a hopeful outlook towards the future. They would also like to receive an overview of the treatment plan and all possible treatment outcomes, be offered available support, and discuss other routes for parenthood and alternative life goals.
After that, a team from Cardiff University conducted focus groups with patients, patient advocates, and healthcare professionals from Europe and Latin America to better understand this preventive support for the end of treatment. Results showed that all stakeholders consider this support to be essential, nonetheless, both identified possible barriers and benefits. For example, on the one hand, both patients and professionals mentioned that this support could help patients better cope with treatment not working, make more informed and timely decisions, and better manage expectations regarding treatment and parenthood.
On the other hand, talking in advance about the possibility that treatment may not work, both, but more so the professionals, indicated that this support might trigger emotional distress or reduce patients’ optimism and commitment to treatments, and pointed out a lack of know-how and resources to provide the support to patients.
Here are some quotes to illustrate this:
If I would have been braced for the reality, I would have done things differently.
For example, a nurse said, “The reason why many clinics don’t have that conversation early enough is because they don’t have anything to offer.
In these focus groups, the team co-developed online educational resources to promote this preventive care, these preventive practices as a routine in fertility clinics. It resulted in 2 online pages freely accessible for public use on these websites or QR codes. These pages are translated into 4 languages.
The first page was developed for patients to help them navigate the possibility of treatment not working called My Journey for patients and another for healthcare professionals to help them provide this support.
The web page starts with a video animation introducing the topic that treatment may not work. Then it starts to show how to continue your journey if fertility treatment does not work. This page is split into 3 sub-pages:
The first page about the end of unsuccessful fertility treatment starts with why it is important to plan about what might happen. Then there are about 10 facts about ending unsuccessful fertility treatments that might be important for patients to know. There are other routes to having children, and different types of support available, for example, in different countries, associations can be contacted to support fertility patients. Then you’ll find some common questions that patients might have, for example, how do I know when treatment ends? How may I be affected if treatment does not work? Can I reach closure from my fertility treatment? There are some answers to support fertility patients.
The other website mentioned above is dedicated to healthcare professionals for clinics. This page aims to support healthcare professionals to help their patients cope if treatment does not work. It starts by explaining why it is important to mention this possibility and prepare patients for this possibility, when to do it according to patients’ preferences, based on research, how before treatment ends and if they are with a patient that has already faced the end of treatment. This also includes other routes to have children, what patients might experience, what might be a plan B, and then again, how to answer some questions and concerns that patients might have. For example, what should I advise patients who are undergoing treatment to help them cope if treatment does not work? How can I support my patients? How to sign both my patients for available support?
What available support do patients have when treatment does not work? Dr Sousa-Leite presented an evaluated intervention accessible for public use to support patients after treatment. It’s from Rowbottom and her colleagues, and it aims to support all people who have an unfulfilled wish for children. This intervention proved to improve the well-being of those who use it. It can be accessed on the website or QR code. This is a self-guided intervention, it has not been tested specifically on the population of fertility patients and does not support a specific transition when treatment ends.
In response to these needs, we developed Beyond Fertility. Beyond Fertility is a brief face-to-face psychosocial intervention offered online or in person, aimed at promoting patients’ adjustment to the end of treatment when it does not work. The development and evaluation follow evidence-based recommendations.
Its protocol is available on this website, and it is to be offered by a mental health professional. It has a component of preventive support via one individual couple session before patients start their last treatment cycle to prepare them for the possibility that treatment may not work. Then a component of intervention support via one individual couple and 5 group sessions to support other patients, to support them if and when treatment does not work. This part is only for those who face the end of treatment, and it does not work. It is an individual couple session, and then 5 group sessions.
Beyond Fertility is tailored to target 4 psychosocial processes that research has shown to be the ones that promote patients’ adjustment to the end of treatment. These are acceptance of the treatment process the inability to achieve one’s desired children by the means patients wished for, and perceived social and relational support. Meaning-making, which is the construction of positive meanings about one’s efforts to have children, and the reevaluation of personal values. Finally, the implementation of new life goals is congruent with these values. These can be beyond, towards, and beyond parenthood.
We conducted a small pilot study of Beyond Fertility, and here are some quotes from our qualitative analysis of the patient’s evaluations of it. These results align with these four processes as the mechanisms of change for better adjustment.
For example, after Beyond Fertility, patients said, “May this think we are not different, that the fears and anxieties we feel are common.
It shows us through the dynamics, that there is a whole world beyond the pain.” They valued the availability of tools for relaxation and guidance, the tools for self-compassion. “And then through these emotions, we can set goals for a fulfilling and happy life beyond motherhood.”
What the team did was split patients from four fertility clinics into 2 groups. The control group received the usual clinic care, and the intervention group received the Beyond Fertility intervention. Results show that when preventive support was offered via one individual couple session, remember, the preventive care was one individual couple session face to face, in person or online before the last planned cycle, it was moderately accepted and feasible to implement.
However, results show that the last treatment cycle can have a multitude of trajectories, and it’s difficult to predict in advance. Only one-third of the participants in both groups ended treatments when their last cycle did not work as planned. The others here had the cycle postponed or cancelled or were offered an additional cycle due to health complications, had cryopreserved embryos, or went to the private sector. Some achieved pregnancy. Only one-third ended treatments and it does not work.
Results also suggest that this preventive support during treatment may promote uptake of support after treatment because most patients in the intervention group, those who are receiving Beyond Fertility, accepted the second session in an individual couple format after the treatment ends. However, although most patients accepted this second session, a considerable proportion rejected the group sessions due to not feeling comfortable. With an individual couple format being preferred in the immediate aftermath of the treatment ends.
We tested Beyond Fertility, and it showed a difference in quality of life between the control and intervention groups. Those who received and those who did not receive Beyond Fertility at 2 weeks and 6 weeks after the cycle ended. This suggested that benefits with preventive and intervention support may be achieved. However, I would like to note that this difference did not reach statistical significance due to the low number of participants. The trial had low power to detect effect sizes, from small to large effect sizes.t For future high-quality testing and future development and evaluation of Beyond Fertility, we need to consider the unacceptance of group formats and also the multitude of trajectories at the treatment end.
In summary, it is very important to support patients at the end of treatment, emphasizing that even though treatment ends, clinical care doesn’t have to end. It can indeed be said that providing this support after the end of treatment is a clinical duty. This presentation showed that all professionals should be involved in routine psychosocial care for the end of treatment. This should address the multitude of treatment options and trajectories, alternative paths to and beyond parenthood when to end treatment, and support sources. This care should be offered to all patients, women, and men, and should be adapted to patients’ values, expectations, and preferences. Patient care should be offered to all but adapted to their values, expectations, and preferences.
I’m not a practitioner, so I’m not in the clinic. I just do research with them now. What research shows is that the end of unsuccessful treatment, the possibility that treatment may not work, tends to be avoided even in research. The guidelines show that most recommendations are during or before treatments. However, research also shows that people start to be more concerned about this even during other events. Professionals are concerned about that. Focus groups with healthcare professionals show that they want to address this, but they are concerned about what will be patients’ reactions. They don’t have guidelines, evidence-based resources, or recommendations to tell their patients. I think the concern starts to be bigger now, but I think this is a bit new, I would say, and much more needs to be done about this topic.
It’s a very sensitive topic, we are talking about sadness and grief. We are talking about very difficult emotions not only for patients but also for professionals because they are not giving what they are trying. Some research with healthcare professionals shows that it’s difficult for them also to say that treatment does not end in pregnancy. And maybe we need to start also. But this is another thing about this end of treatment, right? It’s not about the healthcare professionals or the patients. It is what it is. I think it needs to be told very carefully, and there needs to be a balance between optimism. It’s not just saying the treatment may not work. It’s about balancing what we can do in this case and trying to help patients think about other options. But at the same time, trying to balance their optimism, because treatment also can work. So, of course, it’s very difficult.
To my knowledge, when we are speaking about patients who face the end of treatments and are not doing treatment anymore, I don’t know any evidence-based, so evaluated resources that can put you in contact with others. However, there are online pages and online groups, even from fertility charities, that have launched some groups. You can look for them even on these pages or look for these associations. This would be more informal support, I would say. There is a lot of support online regarding it. As for evidence-based support, meaning support that was tested and evaluated, I don’t know any for now.
It’s very difficult when treatment does not work and when people don’t know the reason why. There is some research showing that at least saying that we don’t know or there is no reason, it’s already a reason for some patients, at least saying we don’t know why or there. But sometimes patients are left without answers, and sometimes it’s because there is no known reason. It’s very difficult to accept when there is no reason or no reason. This is a tough one, for sure. But unfortunately, sometimes it’s just impossible to simply have that reason.
I don’t have the right answer, I would say, because I think it depends from person to person. Research shows that it is indeed very difficult to cope with depression and expectations from others. It is important to, I would say, for some patients, to disclose with those people who can give us the support we need. Some other patients decide not to share with everyone because then it is difficult, also, always receiving messages. Although people care about us, it is difficult to always disclose or need to answer when patients are not prepared to answer at that moment when they are asked.
I think counselling would help to understand what type of answers would be good for patients to respond in these situations. There is some work on that, and some types of responses work better for some patients, while for other patients, another type of answer works. It is important to understand what works for us when we are dealing with those who know. Even, for example, in social events where everyone has children, and we do not, especially as Christmas is coming, it can be a very difficult time for many people.
