E011 What information should we provide to inform and empower our patients to participate in shared decision making? The patient perspective
Authors: Mathews Nidhimol , Ferris Felicity , Bayliss Alison , McCormack Elaine , Summerhayes Kreshma , De Vere Hope , Rose-Parfitt Emily 
Published: April 2023

Background/Aims

With an increasing number of biologic and targeted synthetic disease-modifying anti-rheumatic drugs and their biosimilar agents coming to the market, there is an increased choice of treatments available to patients. It is paramount to understand what information patients require to weigh up risks and benefits of each treatment to empower them to take part in shared decision making. This study aims to explore which factors (in addition to their clinical history) are deemed most important by patients when choosing a treatment and if they believe cost of treatment should be considered.

Methods

74 randomly selected patients, who had been referred to the biologic or targeted synthetic treatment pathway, were invited to complete an anonymous online survey. Paper responses were also offered to patients who were unable to participate electronically, to avoid digital exclusivity. The survey consisted of 10 questions looking at patient perspectives questioning if they wanted to be involved in decisions about biologic and targeted synthetic treatment, which patient factors were important to them, if they considered cost as an important factor, if they would find a decision aid such as graphic/diagrams useful and if they would like a written record of how a shared decision was made.

Results

A total of 50 patients responded to the survey (40/50 online vs. 10/50 paper survey). 94% of patients stated that they would like to be involved in decisions about choice of biologic/ targeted synthetic medication. 58% said they think it is important to consider the cost of treatment. Based on the responses from the patients, the top patient factors (chosen by more than 60% of respondents) which were considered important are: how treatment is given, where treatment is given, how often it needs to be taken, how frequently monitoring is required, likelihood and severity of possible side effects. 66% of respondents said they would like to be shown a graphic/diagram to support their shared decision making and 80% of respondents said they would like a written record to explain how a shared decision was made about the best treatment for them.

Conclusion

The majority of patients included in our study would like to be actively involved in the shared decision-making process and would like to be given information such as route, frequency and location of administration, frequency of monitoring and severity and likelihood of side effects. The majority felt they would benefit from having a graphic/ diagram with all the relevant information summarised to help understand information easily. Providing a written record of the shared decision making will also make the process more transparent. Feedback from the survey has informed our service redesign, specifically our approach to shared decision making, to improve our patients’ experience.

Disclosure

N. Mathews: None. F. Ferris: None. A. Bayliss: None. E. McCormack: None. K. Summerhayes: None. H. De Vere: None. E. Rose-Parfitt: None.