Development of The Determinants of Metabolic Side Effects Questionnaire (DMS-Q)

Sion Scott, University of Leicester

The issue 

4 in 1000 people will get a severe mental illness in their lifetime. Antipsychotic medicine are good at treating severe mental illness but can cause weight gain, high cholesterol and high blood sugars. These are called ‘metabolic side effects’ and happen in half of the people taking antipsychotic medicines. They can be so bad that the person stops taking the medicine and their mental illness gets worse. 

People who get metabolic side effects are at high risk of getting type 2 diabetes and heart disease. The better the medicine works at treating the mental illness the worse the metabolic side effects tend to be. 

Antipsychotic medicines can cause people’s behaviour to change in ways that can cause metabolic side effects for example eating more calories and/or doing less physical activity. These are two different changes in behaviour and so need different support to prevent them. We need a way of spotting when people’s behaviour changes and what the change is so that they can be given tailored support. 

Aim 

Develop a questionnaire for people who start taking an antipsychotic medicine to spot changes in behaviour that will lead to them getting metabolic side effects. 

Plan 

Before we can develop the questionnaire, we need to find out exactly what the changes in behaviour caused by antipsychotic medicines are. 20 people starting an antipsychotic medicine will keep a diary of their experiences over four weeks We will ask them to bring the diary to an interview once a week to talk about any changes in behaviour they might have had. Each person can also invite a family member, friend, or carer to be interviewed.  

We will then develop a questionnaire with our Patient and Public Involvement group that will ask people filling it out whether they have experienced any of the changes in behaviour caused by antipsychotic medicines that we find out about in the Phase 1 interviews.   

We will then test this questionnaire with around 750 people who have experienced metabolic side effects to check that it is understandable and that it works at spotting changes in behaviour that lead to metabolic side effects. We will use the findings from our testing to make improvements to the questionnaire. 

Patient and Public Involvement 

To guide the research, we have set-up a Patient and Public Involvement (PPI) group of people who have experienced metabolic side effects,  their family, friends, and carers. The PPI group have said that this is an important piece of research that is needed to help people like them. They will help design research processes and materials so that they are acceptable to our participants. 

Sharing findings and impact 

We will ensure findings are heard by the right people, including commissioners and politicians. With advisory groups, we will design activities to share messages, such as a newsletter, website and social media. After the project is completed, we will hold workshops, webinars and discussion forums to discuss whether the questionnaire could be effective in improving people’s quality of life. 

The final report is available to view here and the abstract is available to view here.