Interview with Verity Pacey,
Physiotherapist & researcher, Sydney, Australia

My name is Verity Pacey and I’m a physiotherapist from Sydney, Australia. I began working with children with OI around 20 years ago now. I had the privilege to work in a specialist multidisciplinary clinic for children with OI – the only one in Australia at the time. I worked clinically in this service as the physiotherapist initially, then as the service coordinator for the children with bone and mineral disorders. During this time, I was doing my PhD focused on management of joint hypermobility in children. I moved to a full-time academic position in 2018 with my research then expanding out to have a focus on initially children, but now people of all ages, with OI and other skeletal dysplasias as well as hypermobility disorders. I collaborate with people both nationally and internationally and work closely with patient advocacy groups when planning and conducting research studies, and supporting education initiatives for patients and health professionals.

Tell us about your current project!

The current project was developed with Dr Penny Ireland, a physiotherapist in Queensland, another state of Australia. We’re also working closely with key Australian clinicians in both New South Wales and Queensland (Australian states) including an endocrinologist, rehabilitation physician and physiotherapist. We have also worked closely with individuals with skeletal dysplasias, including the Short Statured Peoples of Australia (SSPA) while planning and running the project. For the first 12 months we had no funding. We ran the project with the support of 5 final year Doctor of Physiotherapy students (DPT) at Macquarie University (where I teach) as part of their research studies. We now have another 4 DPT students involved and were lucky enough to receive a small grant from the Connected Foundation, a patient charity group associated with the multidisciplinary clinic where I used to work. That grant is paying for two of last years students to remain working on the project as research assistants.

The project focuses on the functional performance of individuals in their everyday activities. This includes, mobility, self-care activities, using public transport, leisure activities and communication.

There is a survey first which captures current challenges with functional activities at home, work/school and out in the community, including symptoms such as pain and fatigue, and the strategies people successfully use to overcome these challenges. Following the survey, we perform a standardised functional assessment over the phone or zoom. This assessment is performed via interview and covers self-care, mobility and cognition. We then provide a report combining the survey responses and the assessment scores back to each participant. But, surveys and standardised assessments only give us so much information. So, we are then undertaking interviews in key topic areas.

The first one we focused on was the barriers, facilitators and experience of accessing and using the National Disability Insurance Scheme (NDIS), our government support for people with disabilities here in Australia. It hasn’t been running for a very long time and still has some teething issues, so it was so important to hear the voices of participants to establish what was and wasn’t going well. Next up we are focusing on challenges and strategies for self-care activities, and barriers and facilitators to school participation with the plan to be providing individuals and healthcare professionals with top tips on strategies and equipment to make everyday tasks easier.

The project is for anyone with a skeletal dysplasia, any age. We have almost 100 people who have taken part so far, many of whom have OI! We would always love to have more people with OI involved, so if you are interested you can access the information sheet and the survey here .

What were your most interesting findings?

The project is still running so we don’t have final conclusions yet, but we are finding that a high proportion of people have pain and/or fatigue (up to half) during daily tasks such as self-care or mobilising. Many people report useful strategies to overcome these challenges, and the interviews we have coming up will delve into this detail a bit more, particularly in understanding the impact of pain on daily activities and the ways in which people currently manage this.

The interviews that we have completed about the NDIS access were really interesting. We referred to it as “consistently inconsistent” for people to access and use our Australian disability funding system. The role of advocates, whether parents, partners, professional advocates or friends, seemed to be one of the most successful strategies to help work through these inconsistencies with the system.

What is the most important take home message for clinical work?

I’m sure that we will be able to say more when the study is complete, but for now the main message to clinicians is to ask about pain and fatigue and to explore this in depth. This isn’t just asking your patient to rate their pain from 0 to 10, but having a conversation about the impact of pain and fatigue on daily activities, and the impact of daily activities on pain and fatigue.

We need to consider different environments (home, work/school and the community) as experiences can vary in each. If we don’t know what’s happening, we have no way to try and assist our patients – so make sure that you ask!

Were patients/patient organizations involved in your research (patient involvement)?

Yes, in lots of different parts of the project – the initial design of the questionnaire, appropriate recruitment strategies, and educating the DPT students about living with a skeletal dysplasia. We have been lucky enough to be able to present our project plans and our findings so far at patient conferences here in Australia, and have recruited through these conferences as well.

Please tell us a little bit about the other project with pain diaries!

I am working with an amazing PhD student from Belgium, Marie Coussens, who has almost completed her PhD now. We have recruited adults with OI from Australia and Belgium, and part of her study includes measuring pain with daily diaries. There are such little amounts of research on adults with OI compared to children. Part of this study will help with understanding adults pain experiences better.

Any messages for the readers of OIFE Magazine?

Don’t wait for your healthcare team to ask you about pain and fatigue – tell them if you have these symptoms and ask for a referral to see someone to try and help. Every time you do this you will help your healthcare team learn more about managing daily activities when you have OI. Some of the best tips and strategies to make daily tasks easier are likely to come from your peers. Keep on supporting one another and advocating for your needs through organisations like OIFE.