Patient Stories
Tina
Hi, my name is Tina, I am an academic working in the field of psychology at Cardiff University. Currently my research is focused around exploring and measuring the broader impact of hip dysplasia on patients’ lives. I was diagnosed with Hip Dysplasia when I was aged 20, the diagnosis came as a real shock as I had always been very active, I was involved in competitive Gymnastics from an early age.
I was studying at University when I received my diagnosis, I had been suffering niggling pains in my hip which gradually became a constant dull aching pain and eventually stopped me doing impact sports. I was diagnosed quickly (within 6 months) and I underwent a PAO and femoral osteotomy. The surgery and recovery were very tough and life changing, I had 7 months off work and I eventually decided to change my career and I registered for a PhD in Psychology. Eventually I was able to return to sports and I also trained to be a fitness Instructor.
My PAO lasted 18 years, but as my health began to decline, I became very anxious and worried about going through surgery again. I spent a lot of time researching treatments and surgeons and in 2009 I had resurfacing surgery; the recovery was much easier than I had experienced with the PAO, and I was able to return to walking and sports quite quickly. Ten years later everything is still good, and I could not have wished for a better outcome from this surgery. I am back teaching group exercise and working full time.
My experience has led me to focus my research around Hip Dysplasia as there is very little work conducted in this field which encompasses the socio-psychological and economic aspects of the condition, particularly within the adult population. I work with a group of very committed people and our research spans several areas from measuring outcomes of treatments, supporting decision making in surgery, improving diagnosis and supporting rehabilitation. I hope that this long-term programme of work will support patients with hip dysplasia through what can be a daunting and difficult period in their lives.
To help us, we would very much value your support us in one core part of our work: to tell us your own story of the impact of Hip Dysplasia on your everyday life and wider family; and, to validate an outcome measure that we have developed, The ‘Quality of Life, Concerns and Impact Measure’ (QoLC&I),
- What is the outcome measure?
We have developed a patient-centred, outcome measure which assesses the impact of the DDH, the ‘Quality of Life, Concerns and Impact Measure’ (QoLC&I). The measure is intended to be used by both patients and clinicians in discussions over treatment options and in the evaluation of treatment and post-operative rehabilitation. The measure explores a wide range of patient-significant domains, including pain, impact on exercise and sport, education, family life, social relationships, self-esteem, body image and quality of life.
- What are you hoping to accomplish?
Measuring these concepts will help us to understand more about how DDH impacts patients over a lifespan. This project involves testing and improving the measure so that it is robust enough to use in clinical trials. We also intend to implement the measure in clinical practice to enhance the consultations with surgeons and others so that they are better able to understand the impact of your hip condition on your life and to help you to decide on treatments.
- How much time will it take for me to complete it?
The measure will take 10-15 minutes to complete- it is mainly tick box answers.
- How will my information be used
Gathering the responses from the measure will enable us to understand more clearly about how DDH affects you over the life course. Your responses will be read by members of the research team. We will also use these responses to help us test and further develop the measure. All material will be anonymized to protect your identity.
Thank you for your interest. To participate in this survey please visit: https://cardiff.onlinesurveys.ac.uk/pis-hip-consent
I’d also like to thank the International Hip Dysplasia Institute for supporting this endeavor.
