Neuropathic pain is often assessed and studied through questionnaires designed by researchers. However, patients have told us that these assessments miss out on some important aspects of their experience of chronic pain. This research theme is about improving the assessment of neuropathic pain to reflect patients' priorities.
We focus on understanding the lived experience of neuropathic pain to ensure that the assessment of neuropathic pain and its outcomes aligns with patients' priorities. There is an increasing need for an improved assessment of sensory phenotype and stratification of participants in neuropathic pain research. Applying novel and technologically-driven methods will allow us to identify symptom patterns, co-varying symptoms, and their impact over time and across different contexts.
We are working closely with patient partners and study participants to explore and characterise their experience of neuropathic pain. We are exploring the assessment tools used in Work Package 1 to establish whether they adequately describe symptoms and all relevant outcomes in different neuropathic pain conditions. From this, we can establish whether there is an opportunity to build a novel, personalised measure of pain assessment that is both meaningful and measurable at an individual level.
To optimise the assessment of neuropathic pain, we are looking at validated instruments (that can be used in routine clinical care) and more specialised assessment methods from the patients' perspective. For instance, we aim to optimise the protocol for quantitative sensory testing (QST). QST is a technique that determines a person's sensory profile, for instance how slowly or quickly they detect temperature, pressure, and vibration compared to a reference group. We want to adapt the standard QST protocol to make it more acceptable to participants and easier to use in clinical practice, while maintaining its accuracy.
Finally, we are planning to use wearable technologies to try and find patterns in how the patients' experience of pain manifests over time. This work will be done with Work Package 3. We want to uncover what patients identify as the most appropriate symptoms, behaviours, and psychosocial components to consider. Working with people with neuropathic pain, we will explore which devices and what frequency of assessment are most acceptable, and whether the data captured may provide usable information to clinicians and help patients to better share how they monitor and manage their pain.
- We have conducted interviews with patients who have neuropathic pain from different conditions (for instance diabetes or HIV). These interviews focus on understanding their experience of living with chronic pain.
- Patient partners have helped design the recruitment materials and study protocols, analyse data, and identify main themes that emerge in the lived experience of neuropathic pain.
- Work Package 2 has been working in close collaboration with Work Package 3 to analyse questionnaires and tools currently used in pain research. See for instance this paper that clarifies what a common questionnaire, the Brief Pain Inventory - Pain Interference, actually measures: An analysis of the relevance of the Brief Pain Inventory interference items for measuring pain-related disability
- PAINSTORM members contributed to recommendations on meaningful and authentic engagement of patients in pain research. They emphasise the importance of "active, purposeful, and authentic" patient engagement that occurs "throughout the entire lifecycle of the research process". Read the full recommendations here: Patient engagement in designing, conducting, and disseminating clinical pain research: IMMPACT recommended considerations
- IASP Factsheet: Partnering with People with Lived Experience in Pain Research
- This study provides a summary of the lived experience of chronic (non-cancer) pain. It highlights the adverse nature, complications, and consequences of living with chronic pain in the UK. Understanding the lived experience of chronic pain: A systematic review and synthesis of qualitative evidence syntheses