Understanding the lived experience of Neuropathic Pain and improving its assessment – Work Package 2 of the Partnership for Assessment and Investigation of Neuropathic Pain: Studies Tracking Outcomes, Risks and Mechanisms (PAINSTORM) project.
Duration: 06/06/2022 to 06/07/2025
Funder: Medical Research Council (MRC), Economic and Social Research Council (ESRC), Biotechnology and Biological Sciences Research Council (BBSRC), Versus Arthritis, Eli Lilly, Medical Research Foundation
Chief investigator: Dr Kathryn Martin
Other co-investigators: Dr Kevin Stelfox
Project Summary
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.
Work Package 2 (Improving assessment of NeuP and its impact on daily life) within the PAINSTORM project specifically aims to explore the lived experience of people living with NeuP, as well as assessment measures and technologies to ensure they are meaningful to people with NeuP and contribute to informing clinical practice.
The results from the current study will feed into further developments of more person-centred assessments that will be implemented later on for some subsets of the PAINSTORM cohorts.
We are currently recruiting participants to take part in understanding the lived experience of Neuropathic Pain and improving its assessment.
- Do you live with Neuropathic Pain?
We would be particularly interested in hearing from you if you live with Neuropathic Pain and:
• Diabetic polyneuropathy,
• Chemotherapy-induced neuropathy
• HIV-induced neuropathy
We want to understand what it’s like for you living with Neuropathic Pain. We also want to know if the healthcare professionals looking after you ask about or measure your pain, and how they do this.
- Would you be willing to take part in a telephone interview and two focus groups that last around one hour each?
These conversations will help us to understand what it’s like to live with Neuropathic Pain.
You can get further information about the study below and you can contact us by email to register your interest in participating. We’ll then get in touch with a brief questionnaire which will help us to identify participants for interviews and focus groups.
Further information
- Background
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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.
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.
- Aims and Objectives of Understanding the lived experience of Neuropathic pain and improving its assessment research
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- 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)
- Study design
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The study design was developed in collaboration with our patient partners at various stages of grant development and post-funding refinement discussions.
- Who can take part?
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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.
- What does taking part involve?
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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:
- 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?
- 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.
- Participant Information Sheet