While the physical side effects of fertility treatments like IVF and egg freezing are well documented, the impact it can have on mental and emotional health is too seldom being addressed.
This month marks the launch of ELANZA Wellness’s Whole Patient Care Initiative, in which we are drawing together a combination of clinician commitments to build patient-centric experiences with patients’ personal stories that shed light on some of the big questions about how to improve fertility care.
As part of this initiative, ELANZA is looking at five key topics that relate to the strengths and weaknesses of existing fertility services, the state of access and inclusion, patient’s expectations of care and the potential of technology to change things for the better in future:
1. Mental and emotional health
2. Diversity, equity & inclusion
3. Lifestyle factors
4. Patient-centric operations
5. How clinics can improve patient care
This initiative and the reports we will produce are intended to inform the global conversation about the past, present and future of fertility care.
1. 90% of people with fertility problems report feeling depressed
That's according to a recent survey, which also found that 50% of the people with fertility problems said they felt out of control, frustrated, helpless, sad, fearful and worried nearly all of the time. Of most concern, 42% said they experienced suicidal thoughts.
Other research has shown that up to half of fertility patients report severe depression (Domar, Demyttenaere; Lukse; Chen) and a third report clinically significant anxiety (Anderson; Chen).
Overall, data shows that fertility problems have been associated with higher rates of:
Anger
Depression
Anxiety
Social isolation
Marital and relationship problems (Tao)
Sexual dysfunction
Low self esteem
Women, in particular, are at risk (Wright), though men also experience high levels of emotional distress when male factor infertility is involved (Nachtigall).
The journey of trying and struggling to conceive is itself stressful, but what is interesting is that the literature reveals that the process of seeking assisted reproductive treatment itself has a psychological impact. The process of undergoing treatment is itself linked to stress, depression and anxiety (Leiblum), particularly for those people who undergo multiple treatment cycles (Thiering).
2. Mental & emotional distress can lead to treatment dropout
What you may not be aware of is that across the board fertility treatments have surprisingly high rates of attrition.
Recent research suggests that a significant number of fertility treatment dropouts are down to psychological factors (Domar; Hammarberg; Olivius) leading to devastated and disappointed patients, empty waiting rooms and appointment no-shows.
"On average, psychological burden appears to be most frequently named as the number one reason to discontinue infertility treatment, whereas financial burden had the lowest impact. Longer duration of infertility is associated with more externalizing reasons to discontinue treatment." (U Van den Broeck)
Whilst financial and clinical factors are at play in some cases of patients being unable to continue with treatment, better addressing mental and emotional health may prevent around a third of treatment drop-outs - which is better news for patients and for clinics.
3. Chronic stress could lead to worse fertility treatment outcomes
Even the outcomes of fertility treatments can be influenced by social and psychological factors. A variety of studies have looked at stress and mood as predictors of success in assisted reproduction. The majority have found that distress is associated with lower pregnancy rates in fertility treatments like IVF.
"The impact of distress on treatment outcome is difficult to investigate for a number of factors, including inaccurate self-report measures and feelings of increased optimism at treatment onset. However, the most recent research has documented the efficacy of psychological interventions in lowering psychological distress as well as being associated with significant increases in pregnancy rates." (Rooney)
There are various physiological mechanisms that may lead depression and stress to impact fertility, such as disruption of the hypothalamic-pituitary-adrenal axis, leading to hormone imbalances e.g. elevated prolactin levels, abnormal luteinizing hormone regulation (Meller), as well as via the immune system (Haimovici).
Chronic stress has also been linked to biological mechanisms that "switch off" normal reproductive functioning, via neurons in the brain that can have a knock-on, disrupting effect on melatonin, leptin and other fertility-sensitive hormones.
While further studies are needed to identify the precise mechanisms at play, the connection between stress and fertility is now widely accepted.
4. Infertility-related depression can impact women decades after treatment
One study that sought to assess the mental health in women that underwent in vitro fertilization (IVF) 20 years later found that women who had undergone IVF treatment were at increased risk of symptoms of depression, obsessive-compulsion, and somatisation. This was even more pronounced for women that remained childless and/or without a partner after unsuccessful infertility treatment.
By helping fertility patients manage stress and anxiety earlier on in the process, there is potential for better coping mechanisms at all stages of fertility care. This is especially true when the patient has not received the outcome they were hoping for.
5. Offering emotional support resources can improve the overall patient experience
Therapeutic counseling can comprise supportive, coping-orientated and problem solving strategies (Strauss), all of which can be incredibly effective in translating devastation over an unsuccessful outcome into a more positive future outlook, and help patients better manage stress and anxieties during the treatment process.
It can support a more open and positive relationship between the clinical staff and the patient, allowing for healthy, open interactions and more productive time spent during consultations.
In summary:
Psychological symptoms may interfere with fertility, the outcome of infertility treatment, the ability to tolerate ongoing treatment and patient satisfaction.
For these reasons, the European Society for Reproductive Medicine says access to emotional support services should be made available to "everybody, independent of the type of treatment and potential or presenting psychological complaint." It also points out that medical personnel may sometimes need to play "a more active role" in directing patients towards counseling as a useful adjunct to the patient’s medical treatment.
It describes patient-centered care as "psychosocial care provided as part of routine services in the clinic" to "ensure that the people being treated are understood as individuals and not only as biological entities."
Fertility doctors are working with ELANZA to improve mental health measures
Several clinical studies have assessed the efficacy of interventions designed to alleviate the symptoms of stress, depression and anxiety in infertile women and men:
Cognitive behavioral therapy and support groups have been shown to decrease stress and mood symptoms and increase pregnancy rates (Domar 1992; Domar 2000).
Further education and counseling added to routine medical care has been shown to lower anxiety and depression, as well as increasing pregnancy rates (Terzioglu 2001).
ELANZA's digital coaching platform blends a proprietary combination of behavioral coaching, cognitive behavioral therapy tools and support groups that aim to benefit patients in similar ways. It helps patients with problem-solving strategies in a supportive environment, presents coping skills and helps patients communicate with others more clearly.
As an independent source of support – working in respectful parallel with clinical teams, but also separate from them – ELANZA makes it easier to see counseling and community as a separate entity to turn to with non-clinical questions in their journey of coping with infertility and makes it easier to convey confidentiality to patients.
Additionally, our exclusive Clinic Directory listings provide patients with an easy and reliable way to connect with clinics that have committed to a Whole Patient Care philosophy.
Fertility clinic? Learn more about getting listed on the directory here.
More Resources on Mental and Emotional Health
Key researchers and leaders in this area:
Dr. Lauren Berman, PH.D., Fertility Psychology Center of Atlanta, Chair ASRM Mental Health Professional Group (MHPG)
Dr. Alice Domar, Ph.D., Director Mind/Body Services at Boston IVF
Professor Jacky Boivin, BA MA PhD, Cardiff University
Media on the Patient Experience of Fertility Care:
Watch this TEDx talk "This is what infertility really looks like" on how to support those dealing with infertility and pregnancy loss, by Shara Hutchinson who faced an 8 year battle with both.
Read this study on the The Male Perspective on Fertility Treatment
Listen to ELANZA's Everything Egg Freezing podcast about a patient's experience
The New York Times article on "Does Stress Actually Affect Fertility?"
Have you signed the Whole Patient Care Pledge?
Celebrate your commitment to patient wellbeing - take five minutes today to join the free ELANZA Wellness Whole Patient Care Initiative. Sign the pledge to unlock your certificate and opportunities to list your services on the ELANZA directory.
