Elaine Wainwright

Trustworthy pain research is essential for developing a deeper understanding of the phenomena, how it is experienced, its many impacts and how it might be reduced, prevented or managed to improve the lives of those who live with pain. Recognising multiple critical challenges that undermine trust in health research, an international, interdisciplinary network was convened to create an integrated framework for enhancing the trustworthiness of research in pain. The ENTRUST-PE framework was launched in 2024 with a call to action, proposing that trustworthiness in pain research is multidimensional and underpinned by 7 Core Values: Integrity and Governance; Equity, Diversity and Inclusivity; Patient and Public Involvement and Engagement; Methodological Rigour; Openness and Transparency; Balanced Communication and Data Authenticity. The framework includes specific recommendations for a range of interest holders and resources to support those recommendations. In this paper, we summarise the framework, reflect on the response to the framework from the pain research community, consider challenges and opportunities in the evolving research landscape and suggest how we might move towards deeper implementation to enhance the trustworthiness of pain research.

Background: A variety of health and work support (H&WS) services are available in the UK, yet little is known about patients’ preferences for such support. Aims: To develop an understanding of patients’ preferences for H&WS, including the type of support desired, optimal setting, timing and mode of delivery, appropriate providers, integration with existing services and views on employers’ receptiveness to H&WS information. Methods: We conducted a qualitative study using semi-structured interviews. Participants were recruited through existing research networks and professional societies following informed consent. Interview questions were developed in collaboration with the University of Aberdeen Epidemiology Patient and Public Involvement and Engagement group. Interview responses were analysed using inductive and deductive reflexive thematic analysis. Results: Fifteen interviews were conducted with participants (11 females, 4 males; mean age 48.9 years), generating six overarching themes. Three themes related to ‘health and work issues’: disability discrimination, lack of H&WS awareness and trust concerns. Three themes identified key ‘H&WS factors’ for employment: flexible working, accessibility to support, and the importance of feeling valued and supported. Participants desired simplified yet holistic and flexible H&WS delivery. Key policy and practice considerations based on insights from this study include improving H&WS publicity through NHS websites and medical waiting areas, integration of work discussions into medical consultations and employer provision of evidence-based health promotion programmes and manager training. Conclusions: This study provides valuable insights into patients’ preferences about H&WS delivery, highlighting crucial factors for employers and national policymakers to consider, aligned with the recently published Mayfield report.

BACKGROUND Chronic or persistent pain can limit an individual’s ability to work or be productive at work, creating substantial societal and economic burden. Despite this, evidence-based work‑related advice and support for people with chronic pain is inconsistent. The Pain‑at‑Work Toolkit was co‑created with people living with pain, health care professionals, and employers to increase knowledge of employee rights, improve access to workplace support, and provide guidance on lifestyle behaviors that facilitate pain self‑management. OBJECTIVE This study aimed to establish the feasibility of conducting a definitive cluster randomized controlled trial comparing access to the Pain‑at‑Work Toolkit plus optional occupational therapist telephone support (intervention) with support-as-usual (SAU) from the employer (control). Primary outcomes were feasibility, acceptability, usability, and safety of the digital intervention. We also assessed the feasibility of candidate primary and secondary outcomes and tested research processes required for a definitive trial. METHODS We conducted an open‑label, parallel, two‑arm pragmatic feasibility cluster randomized controlled trial with exploratory health‑economics analysis and a nested qualitative study. Eligible organizations were based in England, had ≥10 employees, and were recruited through professional networks and direct approach. Individual participants were working adults aged ≥18 years, with internet access and self‑reported chronic pain interfering with their ability to undertake or enjoy productive work. A restricted 1:1 cluster‑level randomization allocated organizations to the intervention or control arms. After organizational and individual consent, participants completed a web‑based baseline survey (T0) assessing work capacity, health and wellbeing, and health‑care resource use. Follow‑up occurred at 3 months (T1) and 6 months (T2). Feasibility outcomes included recruitment, intervention fidelity (delivery, reach, uptake, engagement), retention, and follow‑up completion. Qualitative interviews with employees and stakeholders at T2 explored acceptability and contextual factors influencing delivery and uptake. RESULTS A total of 380 employees from 18 organizations participated. Recruitment exceeded targets at both organizational and individual levels, demonstrating strong feasibility and engagement. Follow‑up completion met predefined feasibility criteria but showed variability, largely due to employee turnover, providing realistic attrition estimates for a future trial. Outcome measures showed acceptable completion rates and variability, supporting their suitability for use in a future definitive trial. Employees and stakeholders reported high acceptability of the Pain‑at‑Work Toolkit, and qualitative findings highlighted improved knowledge, confidence, and self‑management among employees. Stakeholders endorsed the Toolkit’s relevance and practicality within workplace settings. CONCLUSIONS The feasibility trial demonstrated that the Pain‑at‑Work Toolkit and trial procedures are acceptable, scalable, and deliverable across diverse workplaces. Findings identify responsive outcome measures, emphasize the need for strengthened retention strategies, and support the Toolkit’s use as a standalone intervention. Overall, the study provides a strong foundation for progressing to a fully powered definitive trial. CLINICALTRIAL ClinicalTrials.gov NCT05838677; https://clinicaltrials.gov/study/NCT05838677 International Registered Report Identifier (IRRID): DERR1-10.2196/51474 INTERNATIONAL REGISTERED REPORT RR2-10.2196/51474

Supporting people with health conditions to remain in work is a UK Government priority. Rheumatic and musculoskeletal conditions greatly impact people’s working lives, including conditions such as inflammatory arthritis (e.g., rheumatoid arthritis, psoriatic arthritis and axial spondyloarthritis), rare autoimmune conditions such as lupus and vasculitis, and other painful conditions such as osteoarthritis and fibromyalgia. They are one of the most common causes of days lost from work in the UK and people deciding to stop work earlier than intended. Several resources and interventions are available to enable healthcare professionals to better support their patients to work well. However, people living with rheumatic and musculoskeletal conditions report that consultations with healthcare professionals are mainly focused on medical aspects of their condition and medications, and that work issues are rarely discussed. Support for work-related challenges often remains an unmet need for people with living with these conditions. This report explores the awareness and use of work-related support services amongst people with rheumatic and musculoskeletal conditions and online work resources provided by UK musculoskeletal charities to identify specific areas for improvement.

Chronic pain affects individuals' work participation. The impact of chronic pain on work has historically been measured through sickness absence, though it is now appreciated that the impacts on work are far wider. This mixed-methods review aimed to identify the full range of impacts of pain on work in addition to impacts that are currently measured quantitatively to inform the development of a new questionnaire assessing the wider impacts of chronic pain on work. MEDLINE, Embase, PsychINFO, and CINAHL were searched for studies that included quantitative measures of the impact of chronic pain on work and for qualitative studies where individuals described impacts of their chronic pain on work. Quantitative measures, and text from qualitative studies, were analysed thematically. A thematic framework was developed for establishing the types of impacts measured or described in the literature. Forty-four quantitative and 16 qualitative papers were identified. The literature described impacts within 5 areas: changes at work and to working status; aspects of the workplace and work relationships; pain and related symptoms at work; psychological factors; and factors and impacts outside the work environment related to work. Quantitative measures mainly assessed impacts related to the quantity and quality of work (29 of 42 measures). Seventeen aspects were only discussed within the qualitative literature. This study identifies a discrepancy between the impacts that have been the focus of quantitative measures and the range that individuals working with chronic pain experience and highlights the need for a new measure assessing a wider range of issues.

Sensory elements are core features in chronic pain and autism, yet knowledge of the pain experience in autistic adolescents is limited. Little is known regarding how autistic adolescents experience chronic pain, manage their pain and perceive psychological treatment for their chronic pain. Ten autistic adolescents (6 female, 3 male, and 1 self-identified as agender) with chronic pain and their mothers (n = 10) participated in semistructured interviews concerning their perceptions of living with chronic pain. Participants were recruited from U.K. pain management services. According to preference, interviews were conducted individually (n = 10) or dyadically (n = 10 participants across 5 dyads). Data were analyzed using inductive reflexive thematic analysis. Two themes were generated. Theme 1, “overstimulated and striving for control” described how adolescents’ experience of heightened sensitivity enhanced adolescents’ levels of anxiety and subsequent pain, illustrating a reciprocal relationship between anxiety, pain, and sensory elements. Theme 2, “not everyone fits the mold” captured how autistic adolescents positioned themselves as distinct from others due to the unique nature of being autistic and living with pain. This sense of difference negatively impacted adolescents’ ability to engage with and benefit from the standard treatment for chronic pain. Findings suggest that autistic adolescents living with pain experience pain and face barriers to effective pain treatment. Our results identify the need for educational resources to facilitate clinicians to better understand the experience of autistic adolescents living with pain. In turn, such understanding may improve treatment and outcomes in this population.

Background: Chronic conditions, especially pain conditions, have a very significant impact on quality of life and on workplaces. Workplace interventions for chronic conditions are heterogenous, multidimensional, and sometimes poorly evidenced. The Joint Action for Chronic Disease Plus (CHRODIS Plus), including The CHRODIS Plus Workbox on Employment and Chronic Conditions (CPWEC), aimed to combat this, prevent chronic disease and multimorbidity, and influence policy in Europe. However, the supporting evidence behind CHRODIS Plus has not been formally assessed. Methods: A scoping review was carried out; Embase, MEDLINE, and CINAHL were searched for literature related to CHRODIS Plus and pain. Title and abstract and full-text screening were carried out in duplicate and independently. Additionally, CHRODIS Plus authors were approached for unpublished data. Secondly, the search was broadened to CHRODIS Plus and pain-causing conditions. Grey literature was also searched. Appropriateness appraisal was derived from the Trial Forge Guidance. Systematic reviews, on which CPWEC was based, were appraised using the A Measurement Tool to Assess systematic Reviews (AMSTAR) 2 tool. Results: The initial search yielded two results, of which zero were suitable to be included in the scoping review. The second, broader search revealed 14 results; however, none were deemed suitable for inclusion. AMSTAR 2 scores revealed that the three systematic reviews influencing CPWEC were of varying quality (from critically low to moderate). Conclusions: CPWEC is based on heterogenous reviews of varying quality. However, comparable tools are designed using alternative forms of evidence. Further research evaluating the post-implementation efficacy of the tool is needed.