1.3 Informing patients

Sources of information accessed by patients before seeking fertility care

Even before visiting a fertility clinic, patients have often researched extensively about reproduction and their inability to conceive. Given the prevalence and ease of access to electronic media including search engines that can access all types of information, and in more recent years, social media such as Facebook, LinkedIn and Twitter, people are often overwhelmed with information. Patients report reading posts and bulletin boards as well as joining online support groups which are not moderated by a health professional. These sources of information are not always trustworthy and the information they provide may not be accurate or scientific. On the basis of information patients have gathered from potentially unreliable sources, physicians report feeling questioned and challenged by patients about the processes and medication regimes they suggest. To counter misinformation, it is important that clinic websites provide comprehensive, user-friendly and evidence-based information. Patients who visit the website should be able to access information about the credentials of the people who work at the clinic, the available treatment options and what they entail, evidence about the risks and benefits of the treatment options offered, age-specific success rates, cost of treatments, and what patients can do to improve their chance of success. We will explore this topic in greater detail in chapter 4.

The psychological impact of infertility

The infertility journey leaves patients feeling helpless and with no control. The figure shows the stages couples may have already been through by the time they present for the first visit.

Studies have reported that 40% of patients visiting a fertility clinic for the first time have clinically significant symptoms of anxiety and/or depression (16). Once receiving treatment, even more women and men experience depression and anxiety. This speaks volumes about the psychological impact of unsuccessful attempts to conceive, and how distressed people may be even before they seek medical treatment (17).

In light of this, it is essential that the fertility specialist and the multidisciplinary team display empathy, kindness and support throughout the treatment process. If patients are to make informed decisions, they also need accessible, accurate information about treatment options, the risks and benefits of those options, and their personal chance of success based on their individual circumstances.

What patients want to know before starting treatment

Patients prefer a stepped approach to treatment with the least invasive options explored first. They want a clear roadmap of the scheduled treatment so that they are aware of the overall plan, and what options they have if the treatment is unsuccessful. Patients also want detailed information about the administration of medication, possible side-effects, and who to contact if they have questions. Financial stress can add to the emotional strain experienced by patients. It is therefore imperative to give them detailed and transparent information about anticipated treatment costs to help them manage the financial planning.

Patients report feeling overwhelmed with information when they first attend clinics and appreciate information being broken down and communicated in different ways. Allowing enough time in consultations and making educational materials readily available in a wide range of formats such as brochures, illustrated guides, diagrams, flowcharts, and audio and video tools will help patients to absorb the complexities of ART. Both written and verbal information is needed to help patients manage treatment and make the best possible decisions for themselves.

The information provided should at least include:

• the available treatment options
• the likely prospects of success, considering the patient’s individual circumstances
• the likelihood that multiple cycles may be needed to achieve a pregnancy
• comprehensive information about the full cost of treatment
• the evidence supporting any add-ons available
• possible risks associated with treatment procedures
• point of contact for any questions during treatment
• how to provide feedback or make a complaint; and
• how to access support.

It is also important to give patients the opportunity to clarify information following their consultation without incurring additional costs, for example, if a staff member makes a follow-up call to resolve any questions which may arise.

Information and support after a treatment cycle

Patients report that the most difficult part of ART treatment is the wait after embryo transfer to find out whether the treatment has worked. It is vital to ensure that patients know who to contact if they have any questions or concerns during this time. Clinics should also offer patients emotional support at key  stages of the treatment cycle and proactively check- in after adverse outcomes or when ending treatment.  If the treatment is unsuccessful, patients should be offered the opportunity to discuss the outcome and ask any questions they may have. They should also be informed about available counselling services and how to access these if required. If a pregnancy has  been achieved, patients should be offered pregnancy- related health information and a referral for pregnancy  care.

Using technology to enhance access to information and support

New technologies can be used to complement verbal and written information. This topic will be explored in greater detail in chapters 4 and 5. Here is a typical example to start the ball rolling. If clinics offer patients the opportunity to access and communicate with clinic staff online, this may help those who have questions about their treatment. In their analysis of the exchanges that occurred in one such forum, Aarts et al. reported that the most frequently asked questions related to medication, factors associated with treatment success, and practical matters. The most common reason for asking questions online was that the patient had forgotten to ask these questions during their face-to-face visit. Almost all patients reported that the health professional had understood their question and had provided complete and reassuring responses (18). Electronic communication can also facilitate patient-provider 17 / Chapter 1 The value of care communication and information sharing. A survey among fertility patients in the US showed that almost all were comfortable communicating electronically with the clinic and very few had privacy concerns that prevented them from communicating electronically with their physician (19).

Technology can also be used to enhance emotional support. An evaluation of a cognitive behaviour coaching programme for women and men undergoing fertility treatment found that it significantly reduced levels of depression in clinically distressed and depressed patients (20). Another study of the impact of a brief online education and support programme for female infertility patients reported that women in the intervention group felt significantly more informed about the medical decisions they made and had fewer infertility-related social concerns than women in the control group (21).

The Covid-19 pandemic has accelerated the need for and use of technology to provide medical information and psychological support and to help patients navigate treatment. Information packs and virtual resources can be made available which allow patients to maintain anonymity yet receive support and relevant information from a variety of sources.

Catering for individual needs

Developments in ART mean that individuals or couples can contemplate or undergo ART procedures for a wide range of reasons. People from the following groups should be offered information tailored to their specific needs and circumstances:

• donors and surrogates
• people with diverse sexualities and genders
• single women
• same-sex couples
• people from a diversity of cultural, religious, ethnic and linguistic backgrounds
• women freezing their eggs for subsequent use
• people preserving fertility before cancer treatment
• partners and carers.

Conclusion

In the context of assisted reproductive technology , person-centred care is care which, regardless of treatment outcome, leaves everyone feeling that they were given the best chance. Person-centred care is essential to ensure that the emotional and physical needs of fertility patients are identified and satisfied. Person-centred care must be delivered in a measurable way to ensure that both positive and negative aspects of care are identified. The information acquired should be used to modify or improve the service provided to patients. Patient-reported experience measures (PREMs) can be used to monitor quality of care from the patient’s perspective. They can be administered online and completed anonymously, and help clinics monitor the standard of care delivered and to take steps to improve care where needed.

There is strong evidence that patient-centred care has direct benefits on patients’ wellbeing and that continuity of care reduces treatment concerns and improves treatment tolerability. Decreasing treatment–related stress not only has a positive impact on patients but is also likely to improve staff wellbeing, job satisfaction, engagement and retention. Drop-out rates decrease if patients are well supported which means that they have more cycles. This improves their chance of having a baby and the clinic’s bottom-line and cumulative success rate.

Patients want a clear roadmap of the scheduled treatment, so that they are aware of the overall plan, and what options they have if the treatment is unsuccessful. Patients also want detailed, transparent information about anticipated costs, the likely prospects of success considering their circumstances,  administration of medication, possible side- effects, point of contact if they have questions,  and how to access psychological support. Information and support should be tailored to the specific needs of individuals or couples including infertile heterosexual couples, same-sex couples, donors and surrogates, people with diverse sexualities and genders, single women, people from different cultural, religious, ethnic, and linguistic backgrounds, women freezing their eggs for subsequent use, people preserving fertility before cancer treatment, and partners and carers. 

Recommendations

• ART clinics should implement person- centred care and embed it in all their systems as evidence shows that it benefits patients, staff and the financial success of the clinic in question.
• Clinics should assess patients’ experiences of care on a regular basis and use the information to monitor the standard of care and improve care where needed.
• Clinics should ensure that patients have access to transparent, evidence-based information on all aspects of treatment at every stage of the process and in a range of formats.
• Information should be tailored to the specific needs and circumstances of the wide range of people who access ART.

Resources

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