Understanding risk and help-seeking in the context of female fertility

Lead Research Organisation: Cardiff University
Department Name: Sch of Psychology

Abstract

This fellowship scheme will consolidate doctoral work and conduct limited research to extend present findings. The doctoral studies aimed to better understand individual help seeking behaviour in the context of fertility problems, establish risk factors associated with fertility potential, and identify person-relevant targets for public health campaigns to improve fertility health behaviour. This work led to the development of a fertility status awareness tool (FertiSTAT) designed to assist individual fertility decision making by providing personalised guidance on how to protect and optimise fertility.



During the fellowship, validation of the research findings will be conducted through the completion and publication of follow-up studies on (1) the prospective validation of the FertiSTAT and (2) the assessment of lifestyle factors and parenting decision-making to consider how particular habits (eg, smoking) may or may not change when deciding to become parents and how such habits and other behaviours may influence seeking medical attention (if needed).



Further, dissemination activities of the results of this research to both the scientific and general community will be conducted to better establish ways to implement the findings of this research into effective interventions and practice with the overarching aim of promoting fertility health issues and awareness.



 

 
Description The aims of this fellowship were to consolidate my research (publications and extended data-collection) and conduct dissemination activities to address practical application of the FertiSTAT, expand my researcher skills set and develop opportunities for follow-on funding for this body of work.

Consolidation of previous work:
I was able to complete my work on the International Fertility Decision Making Study with the publication of a paper assessing fertility knowledge and beliefs about fertility treatment in a sample of 10,045 women and men trying to get pregnant from 79 countries. Completion of this project provided me with experience of managing a large-scale multi-country research project and dataset. I developed collaborations with two European research groups (Belgium, Greece) working on replication studies of a tool I developed during my PhD (Factors Affecting Fertility Scale: Bunting and Boivin, 2008). This work has resulted (so far) in the preparation of two publications (van Asseldonk, D'Hooghe, Bunting, Mol, Repping, Boivin, Dancet; Papaharitou and Bunting).

Evaluation and dissemination of the FertiSTAT:
During my PhD I developed a free self-administered tool to raise awareness about the factors that affect female fertility. The Fertility Status Awareness Tool (FertiSTAT) provides women with personalised risk information and guidance about their fertility. To develop the FertiSTAT I conducted a comprehensive review of the literature and a mini-delphi round with reproductive experts to select the 21 evidence-based risk factors used in the tool and published a preliminary cross-sectional validation of the FertiSTAT in a pregnant and infertile sample (Bunting and Boivin, 2010).
The fellowship funding has provided me with the opportunity to continue the development of the FertiSTAT in the following ways:
- FertiSTAT collaborations. The World Health Organisation (WHO) has adopted the FertiSTAT to use in low-resource countries as a primary assessment tool. The tool is currently being adapted for low-literacy and cross-country use (using pictures to replace text) to be used as a front-line medical provider assessment tool. Validation studies are to be conducted in a selection of low-resource countries. Meeting with the WHO and observing the processes involved in adapting the tool for use in low-resource countries (e.g. assess levels of health literacy, finding pictorial images to replace text) has provided me with a wealth of knowledge about collaborations and implementation of tools to practice. In addition to collaborating with the WHO I met with Professor D'Hooge and his colleagues from Leuven University to discuss and set-up an evaluation study of the FertiSTAT in primary and secondary medical systems within Belgium. This project is under development and will continue to run with Professor Boivin and Professor D'Hooge. Finally, the FertiSTAT has also been used and adapted by industry (Merck Serono) integrating the risk factors into a 'fertility compass' on their www.fertility.com patient advice website.
- Evaluating the acceptability and feasibility of the FertiSTAT. I conducted a series of interviews with 14 women (ten women with no prior experience of parenting or any attempts to get pregnant, four women trying to get pregnant). Participants were asked to complete a Think-aloud task using the FertiSTAT, verbalising their thoughts and opinions of the look, structure and content of the tool. After completion of the task I interviewed each participant. The semi-structured interview contained a framework of four sections (practicality; acceptability; perception of effects and impact; endorsement) to assess the acceptability and feasibility of the FertiSTAT. An additional section contained questions to assess beliefs and attitudes towards preparing for pregnancy. As well as forming the basis of a publication (under development) this work has resulted in an updates to the FertiSTAT layout and design based on the feedback interviewees provided during the Think-aloud task. It was pleasing to see that these changes were minimal and focused on better presentation of the male FertiSTAT items and clearer instructions on how to calculate the FertiSTAT score.
- Dissemination encounters with medical professionals and media interest. I conducted a series of dissemination encounters with seven medical practitioners, a representative from a UK based sexual health charity, a representative from a UK based charity that provides advice, information and support for people experiencing infertility and a representative from an Inter-governmental organisation that provides guidance on international health issues. These one-to-one interviews enhanced my understanding about how these different groups can use the FertiSTAT and how best to disseminate the tool (e.g. self administered versus primary care assessment tool). I was invited to speak at the European society for Human Reproduction and Embryology to address clinicians on the ways FertiSAT can be used in clinics to empower patients to change their negative lifestyle habits and seek timely medical care. In addition, I presented the FertiSTAT at two general medical conferences (International Shared Decision Making Conference. June 2011. Maastricht; Society for Academic Primary Care (South West Region: SAPC-SWR) Annual Research Meeting. March 2011. Cardiff). My presentation at the SAPC-SWR meeting was highly commended in the closing ceremony. The development of www.fertistat.com and the translation of the FertiSTAT have enabled the tool to be featured in a number of media articles in the UK, Portugal and Japan. Finally, I published a paper with colleagues from the Cardiff Fertility Studies Research Group highlighting the importance of promoting informed decision making about fertility health issues which featured the FertiSTAT (Boivin, Bunting and Gameiro, 2013).
- Understanding the application of research into practice. The work conducted with the WHO will use the FertiSTAT as a primary assessment tool for low-resource countries. I also wanted to explore the potential implementation of the FertiSTAT within the NHS. I have attended three training courses concerning communicating research to policy and practice and formulating policy recommendations and have also spent time shadowing clinical staff at a fertility clinic to better understand the processes involved in caring for people presenting with fertility difficulties and to see ways in which the FertiSTAT can be implemented into practice. In addition, the dissemination encounters with the general medical practitioners have provided insight into how and where best the FertiSTAT could be used in practice. Many of the medical practitioners felt that using the FertiSTAT could reduce potential conflict within consultations when discussing issues of lifestyle change (e.g. reducing weight, smoking, alcohol consumption) as the FertiSTAT could provide a means of eliciting a discussion about the risk factors for fertility without the medical practitioner being seen as making a personal judgement on lifestyle concerning the patient. All the general medical practitioners were keen to use the FertiSTAT within their practice and one has commented since completed the interview via email that she has "used some of the stuff in my consultations already!" General medical practitioners were very vocal in suggesting where to place the FertiSTAT into the NHS. Smear tests and routine contraceptive checks (e.g. regular blood pressure check for women using the oral contraceptive pill) with nurses was believed to be the most effective place to implement the tool into routine discussions about family planning.
- Creation of www.fertistat.com. Through free support provided by the School of Psychology, Cardiff University I learnt how to programme and design web pages and online questionnaire forms. This enabled me to set-up a free FertiSTAT website that went live in October 2011. The website allows women to complete the FertiSTAT and gain personalised feedback about factors that can affect their fertility. The website records all the data of visitors completing the tool (e.g. risk factors, country of residence, age with their consent).
- Translation of FertiSTAT to reach wider communities. I organised the translation of FertiSTAT into the following languages with collaboration of the Cardiff University Translation Service: Chinese, Danish, Dutch, Italian, French, German, Spanish, Portuguese (European and Brazilian), Japanese, Russian, Swedish. These languages will be available via a free paper version of the FertiSTAT and on the www.fertistat.com website (online language functionality is under development).
Exploitation Route The research conducted during the fellowship has provided research collaborations with the World Health Organisation (WHO) which has resulted in a PhD Studentship between the WHO and Cardiff University (Supervisor: Professor J Boivin) that aims to investigate the development and implementation of the FertiSTAT provider tool in low resource countries (start date January 2014).

A collaboration was established with Professor T D'Hooghe and Dr E Dancet at Leuven University to conduct a series of evaluations on the FertiSTAT in primary and secondary care medical settings within Belgium.

Development of a free FertiSTAT website (www.fertistat.com: live from October 2011) that allows women to complete the FertiSTAT and gain personalised feedback about factors that can affect their fertility. The website records all the data of visitors completing the tool (e.g. risk factors, country of residence, age).
Sectors Healthcare,Other

 
Description FertiSTAT: To empower patients to change their lifestyles 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Health professionals
Results and Impact Invited speaker for the 'Bringing evidence based innovations to your clinic' workshop. Organised by the European Society of Human and Embryology

Following on from discussions held at this meeting a collaboration was established with Professor T D'Hooghe and Dr E Dancet at Leuven University to conduct a series of evaluations on the FertiSTAT in primary and secondary care medical settings within Belgium. This work will continue in my absence with Professor J Boivin.
Year(s) Of Engagement Activity 2013
 
Description Informed decision-making about fertility health issues 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Health professionals
Results and Impact Conference presenation at the International Shared Decision-Making annual conference.

None
Year(s) Of Engagement Activity 2011,2013
 
Description Informed decision-making about fertility health issues. The validation of the Fertility Status Awareness Tool (FertiSTAT) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Health professionals
Results and Impact Conference presentation at the South West Society for Academic Primary Care annual meeting in 2011.

The work presented was mentioned by the organisers in the conference summary talk as highly commendable.
Year(s) Of Engagement Activity 2011
 
Description Red Magazine: How healthy are you? 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Magazine article selecting the FertiSTAT.com website to be used a the best online health tool to assess fertility.

Section not completed
Year(s) Of Engagement Activity 2011
 
Description The impact of personalising fertility risk information: double blind randomised control trial measuring attentional allocation and physiological reactions to presenting risk information to young women. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Health professionals
Results and Impact Sparked discussions and questions regarding the content of the talk.

None
Year(s) Of Engagement Activity 2013
 
Description Want to be a Parent Show, Cardiff 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact I arranged and managed the Cardiff Fertility Studies Research Group's stand at the first public fertility/parenting event held in Cardiff. We distributed free copies of the FertiSTAT and other research materials, engaged with attendees to discuss our research and distributed sign-up forms for a School of Psychology participant community panel as potential participants in future Cardiff Fertility Studies Research Group projects.

The stand attracted a lot of interest from the public attending the show.
Year(s) Of Engagement Activity 2013