On Wednesday july 6th this year’s conference of the European Society of Human Reproduction and Embriology (ESHRE) closed successfully its 2016 edition in Helsinki. As a medical congress, it is natural that most of the over 300 lectures dealt with medical, surgical, embryology and genetic issues. Yet the total amount of lectures dealing with patient issues was disappointing: 7, of which 5 were about the psychological stress related typically to fertility patients; a traditional field in human reproduction.
Not much research on patient experience in fertility
Although literature on patient experience is abundant, in the case of fertility it is true that not much attention has been devoted to the question. Between 2004 and 2014, the number
of medical publications on patient experience has doubled, reaching a 6% growth yearly sin the field of human reproduction the growth curve has been very irregular, although the number of articles also doubles since 2004, but in a far more sudden way than in medicine in general. This indicates that the question appears possibly because it is “in fashion” in medicine, but then drops radically, to regain interest again. In any case, proportionally 70 articles a year compared to the total amount of articles in fertility (4.256 in 2014) is a very low number (2%) compared to the proportion of PX articles compared to 18.000 compared to 276.000 articles in medicine in 2014 (7%).
As already stated, a significant part of literature deals with the psychological stress of IVF patients, a question that is very specific to the sector. There are also many interesting studies around the experience with ethically controversial questions of assisted reproduction, like surrogacy, egg or embryo donation, as well as donor anonymity.
Daily needs of patients require strong PX approaches
Yet if I think on my daily work as quality and patient experience manager at IVF-SPAIN there is no single day where the importance on working on patient experience is not highlighted: patients that have may be six or seven failure cycles behind them, parents that have lost a child, couples that suffer from social stigma due to the lack of children. People that need more than protocols, process or more than a patient journey. People that need that we invent every day clinical, procedural, design and human responses to such a wide range of needs, that they cannot be driven form an algorithm. They rather need an engaged staff able to create every day new solutions for them. And to the contrary, we meet a very few, but very loud, number of patients, that try to abuse or take advantage and that need also ways to bring them down to an ordered flow.
This is why I wonder that literature about patient experience in fertility is comparatively seldom. For instance, at many clinics patients walk into the medical consultation, they go through a series of medical tests, they are given a treatment plan and walk out; without understanding very well what is happening or the effects of the medication they are taking in their daily life. If they are recommended an egg donation cycle, many break down, but not in front of the doctor, but when they leave consultation. The fact that the child will not be genetically theirs is a shock and they have no opportunity to have a meaningful conversation where somebody explains them that there is no difference in love and development with genetical offspring.
Four meaningful points
An article by Wilkes, Hall et al researched at primary care shows already at 2009 a map
with the meaningful points for IVF patients that are patient autonomy, personal relationships, professional relationships and access to services. Autonomy is important for sense of control for decision making processes. Personal relationships have to do with social isolation, guilt and the image of the couple in front of family and friends. Professional relationships have to do with something as important as trust and access to service with a good delivery of service, which is the only of all four points that most satisfaction surveys value. How many procedures and protocols deal with autonomy, personal relationships or professional relationships? If you are not aware of it, surely not many.
Context and meanings matter
Surveys do not always reflect the full complexity and the psychological as well social meanings of patient experience. An example is the excellent study by Lavery, Barri et al at Hammersmith Hospital London and Dexeus Clinic in Barcelona about the experience of preimplantation genetic diagnosis (PGD). The study is based on 36 answered questionnaires (from 67 sent), representing 36 couples that underwent 79 PGD cycles. The study divided the couples in those that had already an affected child or family member, a diagnosis or a pregnancy termination due to a genetic disorder. The study focuses on the perceived advantages and disadvantages of PGD as well, as well as comparing PGD with other diagnosis methods.
Obviously studies must focus on very specific questions, but in the literature I find almost all studies focus on statistical points of patient experience in PGD, but I miss what a genetic disorder means for a family in terms of suffering, logistics, stigma, burden, etc. as well as, the fears about genetics hat raise often among patients, like this excellent article by Ruth Fitzgerald show. Although done in 2002, analysing newer patient experience in PGD literature (Derks-Smeets et al 2014 or Hens et al 2013) study patterns have not changed.
In other words, context and meanings are key to patient experience and pure statistical approaches leave a lot of important points out that could improve patient experience, as the work done at IVF-SPAIN in the case of Recombine preconceptional genetic screening shows (see post). To what extent this part of the experience is misunderstood is showed by this study by Van Empel et al (2011) that shows that often fertility patients are ready to trade clinical results for a better patient experience. In this study, the context is taken into account and of course this is not in conflict with a good quantitative approach.
A good example of introducing insights gained by analysing context is this work by Marcia Inhorn, where she is able to define reproductive tourism as reproductive exile thanks to a good context understanding.
Possibly the best approach to patient experience in human reproduction is undertaken by Jan Kremer, who has dedicated 29 of his 85 publications to questions of patient experience, not as as a researcher, but as an innovator in the fields of patient empowerment, with the use of patient e-communities and wikis or the development of indicators for patient centeredness in fertility.
I like professor Kremer’s approach for the practical orientation of his work: research about patient experience? Yes, but to improve patient experience and make the lives of people seeking a child better.
How can we apply all this learnings about patient experience in practice? The next post will deal with practical examples of clinical practice. Until then the master in human fertility at the University Alicante –developed together with IVF-SPAIN- offers a subject in patient experience in its second edition that is already open for inscription.