This research theme ("Work package 3") is focusing on psychosocial factors and how these relate to neuropathic pain. We use the term “psychosocial” to refer to things like a person's thoughts and feelings about pain, their mood, social support, and lifestyle and activities. We want to understand which psychosocial factors increase a person's risk for adverse outcomes like disability and distress related to neuropathic pain. We also want to understand the flip side of this—what psychosocial factors protect people from having poorer pain outcomes.
We have two key objectives:
- We want to improve assessment of psychosocial factors and make assessment more precise and more person-centred. This means that we want to ensure that our questionnaires measure what they intend to and capture experiences that are relevant to people with neuropathic pain. It's also important that our approach to the variables we study is non-pathologizing. This means that we recognize that the thoughts, feelings, and actions that people have in response to neuropathic pain are normal and understandable given the difficulties that can come with this pain. We also want to better capture how symptoms and psychosocial factors vary over time for individuals.
- We want to think more carefully about how to test potential causes of outcomes like disability and distress related to neuropathic pain. This means that we want to develop guidance for how researchers can be more explicit about their assumptions and more rigorously plan studies and analyse data. We then want to apply these principles to data collected within PAINSTORM.
Work planned
We advised on the selection of questionnaires to assess psychosocial factors that have been implemented into the PAINSTORM protocol across several different cohorts. We have several other streams of work/studies planned. These include:
- Cognitive interviews with people with and without pain to understand how they interpret items on a key measure of pain-related worry.
- A study to investigate what is measured by a widely used questionnaire of pain-related disability. Participants with and without pain will categorize a range of questionnaire items based on the variable that they think is being measured.
- An ecological momentary assessment study to track symptoms of neuropathic pain, emotions, and behaviours over time. This will involve people with neuropathic pain completing several brief questions multiple times per day over a few days.
- A systematic review to see what is actually measured in previous studies using ecological momentary assessment in people experiencing chronic pain. This involves a careful analysis of how the brief questions were developed and validated.
- We have performed a scoping review on how to best provide guidance to researchers to be more explicit about their causal assumptions, and how to visualise these in a graph (‘Directed Acyclic Graph'). Such practices may lead to a better design of studies and a more appropriate analysis of data. Relatedly, we developed a workshop to help researchers on these aspects.
Throughout the project, we are working with our colleagues across the consortium to ensure that we can optimize integration of biological and psychosocial data.
Contributing to the PAINSTORM protocol
We took the lead in choosing the self-report measures of psychosocial risk and protective factors for PAINSTORM's shared assessment protocol, prioritising questionnaires that are theoretically sound, person-centred and feasible for interdisciplinary use.
We designed the PAINSTORM Ecological Momentary Assessment (EMA) study, a smartphone diary capturing pain, symptoms, and emotions up to six times a day, developed with a patient advisory group and informed by a review of how EMA measures are usually designed. Recruitment for this study is ongoing.
Improving tools to measure psychosocial factors
We ran a cognitive interview study of the widely used ‘Pain Catastrophizing Scale’, which measures what we refer to as ‘pain-related worry’. We recruited people with and without neuropathic pain for this study. The study was guided throughout by a patient partner and advisory group. Findings show the scale's recall period is unclear, some wording is not always understood as intended, and several items overlap with related concepts such as pain-related distress and disability. These insights will help refine how ‘pain-related worry’ is measured.
We reviewed 51 published EMA studies in the field of chronic pain and found that how researchers develop their questions is rarely documented, and that people with lived experience are almost never involved in checking whether items reflect their actual experience. We proposed a four-phase framework combining expert review and patient input to close this gap.
We examined the interpretation of the Brief Pain Inventory's Interference items with 94 participants and found its items capture a mix of pain-related disability, distress and severity rather than one specific concept. This is useful evidence for researchers choosing and interpreting outcome measures for future studies and trials.
We designed a procedure to develop precise construct definitions for key psychological constructs.
We are reviewing how the biopsychosocial model is used in chronic pain reviews to clarify whether it functions as genuine integration or not.
We are conducting a scoping review mapping the face-to-face methods used to determine whether a self-report instrument's items match the concept it claims to measure, and will provide recommendations for future research on the topic.
Building and sharing causal models
We conducted a scoping review on guidelines for constructing causal diagrams (Directed Acyclic Graphs, or DAGs). This led to a six-step approach for developing causal DAGs.
We applied this method, with researchers and people with lived experience of pain, to build a DAG for:
- the influence of executive functioning on the maintenance of high impact chronic pain
- the influence of sleep disturbances on the development of chronic neuropathic pain in people with diabetes
- the influence of depressive mood on the development of chronic pain in people having surgery for the treatment of breast cancer.
We wrote a commentary on the value of causal thinking for health researchers and a topical review of how psychological factors are studies in relation to pain outcomes.
We ran DAG workshops for researchers across PAINSTORM and partner consortia (CRIISP, CHIPP), and shared this work at conferences including EHPS, EFIC, IASP and the British Pain Society.
Patient and public involvement
A patient advisory group shaped the design of the EMA study and helped interpret the findings from the ‘Pain Catastrophizing Scale’ interviews.
People with lived experience of chronic pain and diabetes-related neuropathic pain worked alongside clinicians and researchers to build the causal diagrams (DAGs), ensuring they reflect real-world experience and not only the scientific literature or expert opinion.
Patient partners have contributed to the review protocols and will contribute to drafting the future-research recommendations in the review papers.
You can find our study protocols on the PAINSTORM Open Science Framework page.
- Crombez et al. (2023), Pain Reports – The effect of psychological factors on pain outcomes: lessons learned for the next generation of research (DOI: 10.1097/PR9.0000000000001112)
- Van Cauwenberg et al. (2023), International Journal of Behavioral Nutrition and Physical Activity. Commentary on the importance of causal thinking in applied health research. (DOI: 10.1186/s12966-023-01545-8)
- Crombez et al. (2024), Journal of Pain - Commentary on the importance of precise definitions applied to the case of pain catastrophizing. (DOI: 10.1016/j.jpain.2023.12.012)
- Poppe et al. (2025), Health Psychology Review – Scoping review of guidelines of DAG development (DOI: 10.1080/17437199.2024.2402809)
- De Paepe et al. (2025), PAIN – DAG development for executive functioning and chronic pain. (DOI: 10.1097/j.pain.0000000000003833)
- De Paepe et al. (2025), Pain Reports - Commentary on the importance of capturing individual experiences to advance core outcome sets in pain. (DOI: 10.1097/PR9.0000000000001348)
- De Paepe et al. (2026), Journal of Pain - Content validity of the Brief Pain Inventory (DOI: 10.1016/j.jpain.2025.105588)
Geert Crombez is a professor of Health Psychology at Ghent University (Belgium), where he is co-leading the research group of Health Psychology. Foundational to this work is the idea that patients with chronic disorders are best conceived of as ‘normal individuals in abnormal situations', e.g. experiencing daily pain. He investigates how and why psychosocial factors may have an impact on pain, distress and disability, but also how we can help patients to adopt a healthy and active lifestyle.
Dr Whitney Scott is a Senior Lecturer in Clinical Health Psychology and a registered Clinical Psychologist. Whitney's work looks at the ways in which psychosocial factors relate to the experience and impact of pain. She is also interested in behavioural treatments to support people to reduce the impact of pain on their lives.
Annick De Paepe is a cognitive psychologist and statistician by training. Her research focuses on unravelling the psychosocial factors that can contribute to the development and maintenance of chronic pain. She is also interested in eHealth and how the use of eHealth can be used to increase self-management of several lifestyle factors, such as physical activity. Finally, she has a strong interest in methodology with a particular focus on single case experimental designs, causality and measurement.
