PAINSTORM WP2

Neuropathic Pain (NeuP) affects 8% of the population and its prevalence is increasing due to the ageing population, diabetes epidemic and enhanced cancer survival. Pain is an unpleasant sensory and emotional experience that can have a significant impact on a person's quality of life, general health, psychological health, and social and economic wellbeing (NICE, 2017). Neuropathic Pain is a type of persistent (or chronic) pain caused by problems with the nervous system.

What is Neuropathic Pain?

NeuP has a major negative impact on quality of life and current management options are inadequate due to poor efficacy and tolerability.

The PAINSTORM project is part of the Advanced Pain Discovery Platform (APDP) funded by the Medical Research Council, supported by the Biotechnology and Biological Sciences Research Council and Economic and Social Research Council and partners with Versus Arthritis, Health Data Research UK (HDR UK) and Eli Lilly

• UKRI Advanced pain discovery platform (APDP)
• Versus Arthritis - How will our research help people living with chronic pain?

Understanding the lived experience of Neuropathic Pain and improving its assessment - Work Package 2 is part of the Partnership for Assessment and Investigation of Neuropathic Pain: Studies Tracking Outcomes, Risks and Mechanisms (PAINSTORM) project.

• explore the lived experiences of participants with NeuP
• gain an understanding of the nature of differing social/psychosocial factors that affect a patient's experience and ultimate outcomes.
• investigate the dynamic nature of relations between pain outcomes and psychosocial factors over time and context
• explore current assessment tools in order to gain an understanding from a participant's perspective if they adequately describe symptomology?
• explore the use and acceptability of (wearable) technology to record/measure pain)
  

The study design was developed in collaboration with our patient partners at various stages of grant development and post-funding refinement discussions.

Individuals who have indicated an interest in taking part in the research, are 18 years of age or older and who have completed a screening questionnaire indicating self-reported receipt of a diagnosis of neuropathic pain, as well as screen positive for probable neuropathic pain.

We will send you a short questionnaire that asks some basic questions about you and your condition. This will help the research team decide who we would like to invite to take part, based on your condition, age, gender, ethnicity and socioeconomic criteria. Using this information will ensure we speak to a wide variety of people.

If you are selected to participate you will be invited to take part in an interview which will last about one hour with our researcher.

The interview will focus on what it's like for you living with Neuropathic Pain. We would like to understand more about your experiences of living with Neuropathic Pain and how it impacts on your everyday activities.

After the interview we will let you know of the dates and times of the two focus groups. The two focus groups which will each last for approximately one hour, will discuss different topics, they are:

1. We want to understand your views and opinions on the ways and tools that are used to assess Neuropathic Pain. Do these describe your experience of living with Neuropathic Pain?
2. We would like to discuss devices that can be worn to measure Neuropathic Pain. Questions will include, would you use these devices?

Participants who have indicated they have recent experience of Quantitative Sensory Testing (QST) may be invited to take part in an additional focus group to discuss their experience of QST.

Download the Participant Information Sheet here