New tool aims to improve family planning for people with inflammatory arthritis

Researchers funded by Health and Care Research Wales have developed a new tool to support people with inflammatory arthritis (IA) in planning for pregnancy. 

The FAMILIAR (FActors Influencing faMIly pLanning with an Inflammatory ARthritis) study conversation planner was created to improve shared decision-making between patients and healthcare professionals.

It helps to address a gap in pre-conception health support, as future parents living with an IA diagnosis often have to carefully consider their choices to start a family due to their symptoms and potentially being reliant on medications which could interfere with a safe pregnancy.  These are important considerations whether the patient is hoping to safely plan, or prevent, pregnancy. 

The PhD, funded by our Health PhD Studentship Scheme, was led by Dr Denitza Williams and undertaken by  Zoë Abbott at Cardiff University. 

Zoë has worked in health research since 2008, focusing on trial management, data management, and research delivery and pursued her PhD after being diagnosed with Rheumatoid Arthritis herself at the age of  27.

The project included focus groups, and interviews with NHS patients and healthcare professionals. Initial recruitment was through University Hospitals Bristol NHS Foundation Trust, Cardiff and Vale UHB, and Swansea Bay UHB rheumatology staff, and then extended across the UK, through charities, collegiate networks, and social media.  The charities who provided extensive support included Yoga for AS, National Axial Spondyloarthritis Society (NASS), and Cymru Versus Arthritis, and Versus Arthritis.

Findings revealed that family planning conversations were often delayed or avoided, with both patients and doctors expecting the other to raise the topic. When conversations were had, the details were often forgotten, leaving women open to making uninformed choices. 

The tool helps guide discussions between women and their healthcare providers, and their partners, raising key aspects of pre-conception health, discussing topics such as medication safety, disease control, and fertility concerns, to support shared decision making.

Patients and healthcare staff who reviewed the tool reported that it will make conversations easier and more structured, improving communication and supporting informed decision-making. Both groups agreed the tool should be available in clinics and online to maximise accessibility.

Zoë said: “A key aim of this project was to empower patients with the knowledge they need to make informed choices during family planning. 

“Throughout the process, the importance of effective, guided, communication became clear. We hope that the tool will soon be available in clinics and online to make women and those assigned female at birth feel supported in their family planning.”

The next stage for study is to test the efficacy of design in real world settings, and the team are currently working on designing and obtaining funding for this work.

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