Research blog: Trialling an online tool to help women make decisions about antidepressants in pregnancy

Dr Emma Molyneaux and Dr Ruth Brauer are both researchers in the Institute of Psychiatry, Psychology & Neuroscience’s Section of Women’s Mental Health. Here, they tell us about their current work on the pilot study, partly funded by NIHR Maudsley BRC, of an online decision aid for women on antidepressant medication – including how they’ve tackled problems recruiting for the study, and what they’ve learned so far.

The huge potential and the possible pitfalls of technology in psychiatry have been the topic of much discussion in our office over the past year as we run a pilot of an online patient decision aid. This decision aid is designed for women who are pregnant or planning a pregnancy and have been reco

Women making this decision can fall into a gap in services – their antidepressants are usually prescribed by a GP who may not have specialist knowledge of the current evidence around depression and antidepressants in pregnancy. Some women receive advice from specialist obstetricians, but this is rare. Most women are not severe enough for referral into perinatal psychiatric services, particularly if they have been successfully managing their depression with antidepressants for several months or years prior to pregnancy. In addition, specialist services are also often overstretched and have substantial waiting lists. As a result, many women make the choice without ever seeking clinical guidance – often by looking online to find information on risks and benefits of antidepressant use in pregnancy.

The amount of information available after typing a few words in a search engine encapsulates both one of the main benefits and one of the major risks of the internet as a tool in psychiatry. We know that women find the ability to access information in their homes invaluable and empowering, and this is particularly the case for groups who may find it particularly difficult to access other services – such as women with small children, those who work long hours or those living far from relevant services. However, women in our study have also reported their difficulties finding reliable information among the huge amounts available.

As well as the trustworthiness of the information, the way it is provided is crucial. Online resources are often either very oversimplified or are complex academic papers or clinical guidelines, and neither is right for women without specialist knowledge wanting to make the best decisions for them and their families. Having the right level of detail and knowing that the information is evidence based are two of the main sets of positive feedback we have had to date from women taking part in the pilot trial of our online decision aid.

Decision aids also provide a structure for processing information and encourage thinking about what aspects are particularly important. In addition, providing decision aids online allows information to be accessed where it is needed and not replicated between services. Another benefit, although not one that is covered in our trial, is that online supportive communities can grow, as demonstrated by things like #pndchat on twitter, which provides a forum for discussing issues around mental health in pregnancy.

As well as the decision aid itself, we have learnt a lot about the practicalities of conducting trials of technology-based interventions. When our study started, we planned to recruit women by referrals from local care providers, such as GPs, midwives and mental health services. We arranged meetings, sent and put up circulars, and were supported by the extremely helpful NIHR Clinical Research Network facilitators for South London GPs. 

Months passed with almost no referrals.  All of the reasons why the online decision aid is helpful to women also explain why recruiting through services was difficult. For example, GPs have little time, women who would benefit from the study are rarely referred to perinatal psychiatry services, and providers often feel that women generally make medication decisions before coming to see them.

Online recruitment by advertising through websites and social media of organisations like NCT, Tommy’s, PANDAS and Mumsnet proved to be far more successful.  We have an online contact form and consent form (both securely encrypted) approved by King’s Ethics Committee, and conduct interviews over the phone. Before any woman takes part, we also make contact with their clinician (usually the GP) to inform them that their patient is interested in the study and make sure that the clinician is happy with their participation. This has also increased our use of the other end of the technology spectrum – the fax machine!

So, what has our experience taught us so far? There is definitely substantial potential in technology including online decisions aids, particularly to fill gaps between services and where more time and more specialist knowledge is required than is universally available in primary care. Online tools need to be user-friendly, optimised for smartphones and tablets as well as computers – and to provide evidence based information with the right level of detail. For testing feasibility of an online tool, online recruitment is more effective and provides opportunities for future recruitment strategies. However, relationships with gatekeepers to online groups (e.g. social media managers) are key, similar to clinician champions when recruiting from healthcare settings, perhaps proving that technology lends a helping hand to an investigative mind.

Acknowledgements: This research is coordinated by Dr Hind Khalifeh and Professor Louise Howard and funded by the NIHR Biomedical Research Centre at South London and Maudsley NHS Foundation Trust/King’s College London, UK, and a National Institute for Health Research Professorship for Louise Howard (NIHR-RP-R3-12-011).