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People struggling with infertility have very different views on the medical evidence about treatment and need personalized support from doctors to make informed choices, according to research from Queen Mary University of London, recently published in a peer-reviewed journal Sociology of Health and Illness.
Image credit: Queen Mary University of London
Over 50,000 people undergo infertility treatment each year in the UK and around 70% of them use controversial ‘supplements’ which promise to increase their chances of having a baby but are not backed by solid evidence. Most infertility treatments in the UK are paid for privately at prices ranging from £3-5,000 for a standard IVF cycle to more than £20,000 with certain add-ons, so it is vital that patients are able to make decisions based on medical evidence rather than healthcare marketing.
Private fertility care providers are often accused of manipulating vulnerable patients for financial gain, following a BBC Panorama film about IVF clinics selling unproven or risky supplements. However, research led by Queen Mary’s School of Business and Management tells a different story: while some patients prefer to delegate decisions to their doctors, others actively evaluate supplements and decide to take risks, especially when infertility treatments have failed in the past .
The researchers conducted in-depth interviews with 51 infertility treatment patients across England aged 29 to 47, including those undergoing IVF themselves as well as their partners. They found that patients share a common understanding of what counts as medical evidence, but take different views on what is “good” or “enough” depending on their personal experiences of infertility and IVF.
The survey found that patients are expected to choose what supplements to take for themselves – and while some wanted to critically assess the available evidence, around half preferred to leave the decision-making to healthcare professionals and simply follow their advice. The interviews also revealed that patients consider the evidence in relation to their own experiences, calculate the risks and make choices based on what they have been through in the past or how likely they think they will be to try for a baby in the future.
With the UK Fertility Regulator (HFEA) currently considering whether to fine suppliers for supplement mis-selling, and the Competition and Markets Authority currently reviewing fertility clinics’ compliance with consumer protection law guidelines, this new research provides timely evidence to inform these important discussions about healthcare privatization and how patients can be supported to make informed choices in the resulting marketplace.
In light of the study, the researchers are urging health professionals to rethink what “informed choice” means in a privatized system. Patients need quality information in an accessible format to make their own treatment choices, but alternative strategies should also be explored to protect those who take calculated risks or obey their doctors.
Study author Dr Manuela Perrotta, Reader in Technology and Organization at Queen Mary University of London, explained: “The debate around IVF supplements often tells a story of predatory private clinics selling useless infertility treatments to gullible patients, which is just one side of a complex story that our research works to uncover. Patients should be given an unbiased view of high-quality evidence in a simple way so they can make informed choices about their personal treatment – but some would prefer to trust healthcare professionals to make these decisions, so it is important to acknowledge and respect that as a choice in itself.
Our research challenges the view of IVF patients as willing to uncritically accept or request unproven and expensive treatment as an act of desperation to increase their chances of having a baby; on the contrary, we found them actively making complex decisions in the tense and uncertain world of reproductive medicine. Patients’ choice to pay for private treatment and pursue controversial supplements is not due to a lack of information or understanding, but a personal weighing of the scientific evidence against their own unique fertility journey.
Dr Josie Hamper, Co-author and Postdoctoral Fellow, Queen Mary School of Business and Management
source:
Queen Mary University of London
Journal reference:
Perotta, M. et al. (2022) Informed patient choice in the era of evidence-based medicine: IVF patients’ approaches to biomedical evidence and adjuncts to infertility treatment. Sociology of Health and Illness. doi.org/10.1111/1467-9566.13581.
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