Improving the quality of life of people with joint pain

About the research

Joint pain can affect quality of life – it can cause depression, anxiety and sleep loss. This study is exploring a possible new treatment to tackle this type of co-morbidity. It uses mice to see whether and how these co-morbidities can be addressed.

This research is being conducted by Sara Hestehave Kristense, with funding of £350,000 provided by the charity Versus Arthritis.

Preparing for PPI

To prepare for PPI in this research, Sandrine attended training about PPI that was run by University College London Hospital Biomedical Research Centre (BRC). She was also given a bursary of £500 by the BRC.

Planning for PPI

Sandrine planned to involve people living with arthritis throughout her research. Initially she wanted patients to help her to identify the most important symptoms to explore in her research (e.g. depression, sleep loss, anxiety).

Sandrine found that recruiting via an advert and via a clinician didn’t work. So the charity Versus Arthritis gave her a list of support groups and she got permission to visit a support group near where she lives. Sandrine visited the support group and gave an explanation of the project.

“Asking people face-to-face made a huge difference, as I seemed human. I took my kids along with me. It was the Xmas party so I just talked for about 5 or 10 minutes about my plans and invited involvement. People were really interested and wanted to help.”

Sandrine left her contact details with everyone and six women agreed to get involved.

Sandrine has set up a discussion group (consisting of the six women who have agreed to take part), which will meet throughout the life of the project.

Sandrine wanted PPI activities to feel informal and welcoming, so she decided not to send any written information in advance as she didn’t want to put people off.

The PPI activity

The first meeting of the discussion group was held at a Pizza Express restaurant which was local to the support group, in a private room.

Sandrine found it easy to create a welcoming atmosphere. “Having met them once before, when it was more informal, meant that when they arrived they knew who they were looking for.”

The meeting lasted for two hours and five women attended. “Five was a good number. There was never any silence. We stuck to the two hours. It was a good duration and everybody had a chance to talk. Less time and more people would have been difficult, because not everybody would have had a chance to say what they wanted to say.”

Sandrine co-facilitated the meeting with her post-doctoral researcher. This worked well. “With two of us, one can take the notes while the other one is listening and making eye contact.”

She gave people a handout, then explained what they wanted to get out of the meeting. She and her post-doc then worked through the list of questions they had prepared.

“I also offered for them to come and visit the lab and they were really excited about that. At the end we gave them a voucher, which they really appreciated, and didn’t expect. By the time I got home I had an email from one participant to say thank you so much for having them all and that they had learned a lot.”

The meeting went really well. “It worked because it was informal, in a very friendly environment. The challenge was to find somewhere near where they lived that would give us privacy and this venue worked out really well - it was very convenient. The staff were very nice too - they understood it was a professional meeting, so they didn’t bother us too much. And the environment was very friendly. Probably the reason why it worked was that all of the participants already knew each other. And probably because they know each other, they didn’t feel vulnerable. Having my post-doc as a co-facilitator also helped the meeting to work well.”

Impact

The meeting had an impact on Sandrine’s research: “I hadn’t really discussed living with arthritis with someone with my research in mind, so for me it was a real eye opener. I was happy to see that the parameters I was going to look at in the animals are the right ones. But from the conversations I had, it’s even more certain that we need to be really careful, in particular about the emotional side of living with persistent pain. I had thought that living with persistent pain would make people anxious. But what we heard was that what makes people anxious is not the pain in itself, it’s more about living with a long term disease and taking long term medication. People were worried about the side effects - an animal is never going to be worried about side effects.”

Follow-up

“I would like to meet the women again in six months or a year. We’re going to look at two different animal models and we want to decide which one of them seems to be the most relevant for the condition we’re studying.”

You can find a handout that Sandrine used for the meeting here.