Martin Stevens

"Background Patient Research Partners (PRPs) are actively encouraged in Rheumatology research, but the depth and breadth of collaboration remain unclear. We explored the perception that PRPs and researchers from across Europe had of PRP involvement, to identify barriers to good practice, and opportunities for improvement. Methods A working group of 6 rheumatology researchers and 6 PRPs co-designed the 2-stage mixed-method study, from design to analysis. 1. Questionnaires investigating the perception of PRP work. Topics included types of PRP involvement, training, payment for work, and the impact of PRP work. 2. Semi-structured interviews to explore barriers and potential solutions for meaningful collaboration. Results Questionnaires were completed by 84 PRPs and 69 researchers, followed by interviews with 8 PRPs and 7 researchers from 15 European countries. • 59% of PRPs were involved in early-stage study design, 35% in qualitative analysis, and 17% in quantitative analysis. • 63% of researchers had no relevant training prior to working with PRPs, whilst 38% of PRPs receiving no training. • PRP work was paid 60% of the time. Interviewees agreed that PRP input should be considered work. • Researchers felt PRP work impacted decisions. However, PRPs rarely understood their impact due to lack of personalised feedback. Conclusions Study recommendations for improved practice throughout the research cycle: • Co-develop a framework of responsibilities and expectations at study outset. • Provide relevant training for both PRPs and researchers. • Recognise PRP work as providing expertise. • Provide personalised feedback to demonstrate PRP impact."

Background: Fibromyalgia is a chronic condition characterised by widespread musculoskeletal pain. Sleep problems are reported by 92% of people living with fibromyalgia. Objectives: To evaluate the effectiveness and safety of interventions for the management of fibromyalgia-related sleep problems; explore the experiences of people with fibromyalgia-related sleep problems and examine the content of patient-reported outcome measures for ‘sleep quality’. Methods: We conducted: (1) a network meta-analysis of randomised controlled trials to compare the effectiveness of pharmacological and non-pharmacological interventions; (2) a systematic thematic synthesis of qualitative evidence; (3) a content analysis of existing patient-reported outcome measures validated in people with fibromyalgia. Major electronic databases were searched in November 2021. Results: One hundred and sixty-eight studies were included in the effectiveness synthesis. The network meta-analysis assessing sleep quality included 35 treatment categories from 65 studies (8247 participants). Most studies were at high overall risk of bias. There is some evidence that compared with placebo or sham treatments, some forms of exercise [i.e. land-based aerobic exercise training in combination with flexibility training (standardised mean difference −4.69, credible interval −8.14 to −1.28) and aquatic-based aerobic exercise training (standardised mean difference −2.63, credible interval −4.74 to −0.58)] may improve sleep. There is also a suggestion that land-based strengthening exercise, psychological and behavioural therapies with a focus on sleep, electrotherapy, weight loss, dental splints, antipsychotics and tricyclics may have a modest effect on sleep, but credible intervals are wide. For other interventions, there is no clear evidence of beneficial effects on sleep. Our certainty of current evidence was predominantly low to very low. The thematic synthesis highlighted the bidirectional relationship between sleep and pain. Twenty-one sleep domains were identified across five patient-reported outcome measures. The domain most frequently identified was sleep maintenance. The Pittsburgh Sleep Quality Index was the most comprehensive tool (15 domains), followed by the Medical Outcomes Study Sleep Scale (11 domains). Limitations: Quantitative studies varied considerably in terms of characteristics of interventions, control treatments and type of outcome measures. In the network, most interventions were compared with placebo, sham treatment or usual care and not with another active treatment. In general, studies were small, unblinded and of short duration (median 12 weeks). For the qualitative synthesis and patient-reported outcome measures analysis, it is unclear whether study participants are adequately representative of the wider population of fibromyalgia patients due to poor reporting of demographic data. Conclusions: Some forms of exercise may be effective for managing sleep problems in people with fibromyalgia. However, heterogeneity, imprecision and low quality of the current evidence base preclude any firm conclusions. Qualitative data indicate that poor sleep is a common, profoundly disabling problem for people with fibromyalgia that negatively affects their other symptoms (e.g. pain), health and well-being. While we found heterogeneity among the item content of the patient-reported outcome measures, all capture constructs associated with sleep quality and, conceptually, are similar enough to be combined in a synthesis. Future work: High-quality research is needed to investigate which interventions are more likely to be effective for treating fibromyalgia-related sleep problems. Future studies must be designed in collaboration with fibromyalgia patients and include an appropriate comparator treatment. Pre-registration of study protocols is essential. Study registration: This study is registered as PROSPERO CRD42021296922. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: NIHR132999) and is published in full in Health Technology Assessment; Vol. 29, No. 20. See the NIHR Funding and Awards website for further award information.

Background: Fibromyalgia is a common reason for referral to a rheumatologist and is a centralised pain state with symptoms beginning in adolescence/early adulthood and manifests as pain throughout the body, fatigue and cognitive dysfunction. Whilst there is considerable evidence on effective treatments, diagnosis and management are complex. There is almost no evidence on how to organise health services to deliver recommended therapies. The aim of the current study was to understand patient preferences for different features of healthcare services for fibromyalgia. Methodology: We use the Discrete Choice Experiment Method (DCE), a choice-based survey that quantifies preferences for attributes of goods, services or policy interventions, to elicit preferences in relation to alternative models of care for people with fibromyalgia. In this study, attributes describe different models of care for fibromyalgia. We based attributes and levels on earlier phases of the PACFiND project and a literature review on fibromyalgia models of care. The final analysis sample consisted of 518 respondents who completed the survey in full. Results: The final analysis sample consisted of 518 respondents ((patients living in the UK, over 18 years old, with a diagnosis of fibromyalgia), who completed the survey in full. The model of care most preferred is one characterised by earlier diagnosis and ongoing management by a Rheumatologist, via Face-to-face or Phone/video call appointments, with a stronger preference for the latter mode of support. The most preferred treatment was Medication, followed by Physical Therapy, with the least preferred being Talking Therapy. Relative to a Waiting Time for treatment of 6 months, respondents would prefer a lower Waiting Time of 3 months and dislike waiting 12 months for treatment. Respondents showed willingness to receive Ongoing Help and Advice by a Nurse Practitioner or a GP, instead of a Specialist Rheumatologist, provided they were compensated by other changes in the model of care. Conclusion: This study has found that, although respondents express a preference for specialist care, provided by a Rheumatologist, they may be willing to trade-off this preference against other features within a model of care. This willingness to accept a different skill-mix (e.g., appointments with a GP or a Nurse Practitioner) has important implications for practice and policy, as this is a more feasible option in settings where the availability of specialist care is highly constrained.

Objectives: Many people with chronic pain cannot work, while working despite chronic pain is linked to absenteeism and presenteeism and a host of other deleterious effects. This disproportionately affects older adults, who are closer to retirement, while the exact relationship between pain and work cessation as well as retirement among older adults is not known. We explore longitudinally the relationship between chronic pain and the risk of ceasing work and entering retirement. Methods: Data from 1156 individuals 50 years or older living in England taking part in the English Longitudinal Study of Ageing were used in this study. Cox proportional hazards regression analyses were used to examine the nature of the relationship between musculoskeletal pain and work cessation as well as retirement longitudinally over the course of fourteen years. Results: Suffering from frequent musculoskeletal pain was associated with an increased risk of ceasing work and retiring at an earlier age, as did work dissatisfaction, higher perceived social status, female gender, and not receiving the recognition they felt they deserved in their job. Severity of depressive symptoms, psychosocial job demands, decision authority, and social support did not influence the age at which participants reported work cessation or retirement. Conclusions: Frequent musculoskeletal pain may increase the risk of earlier work exit and earlier retirement. Further research should establish the mechanisms and decision making involved in leaving the workforce in people with frequent musculoskeletal pain.

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.

Rapidly increasing population old age dependency ratios create a growing economic imperative for people to work to older ages. However, rates of older worker employment are only increasing slowly. Amongst a cohort of contemporary older workers, we investigated risk factors for health-related job loss (HRJL) over 2 years of follow-up. HEAF is a population based cohort study of adults in England (aged 50–64 years at baseline) who provided information about socio-demographic characteristics, lifestyle, and work at baseline and annual follow-ups. Exits from paid work were mapped and risk factors for HRJL explored in a multiple-record survival dataset by Cox proportional hazards models. 2475 (75%) men and 2668 (66%) women were employed; 115 (4.6%) men and 182 (6.8%) women reported HRJL. Employment as road transport drivers/in vehicle trades (men), or as teaching/education/nursing/midwifery professionals or in caring personal services (women), was more frequent among people exiting work for health-related versus non-health-related reasons. Principal socio-demographic and lifestyle risk factors for HRJL were: struggling financially (men and women); low physical activity (men); being overweight or obese, and current smoking (women). Mutually adjusted work-related risk factors for HRJL were job dissatisfaction, and not coping with the physical (hazard ratio [95% confidence interval]: men 5.34[3.40,8.39]; women 3.73[2.48,5.60]) or mental demands (women only, 2.02[1.38,2.96]) of work. Employment characteristics of contemporary older workers differ by sex. Job satisfaction and perceived ability to cope with the physical and mental demands of work are key determinants of HRJL which employers could potentially influence to enable work to older ages.

Musculoskeletal disorders are one of the main causes of sickness absence in the UK and their prevalence is likely to increase in workers, with the rise of state pension age. Previous research has shown that these conditions are common among health and social care workers. Therefore, we aimed to describe the prevalence of musculoskeletal pain among health and social care workers and to explore personal and occupational risk factors for pain at specific anatomical sites and for multi-site pain. We used data from the second year of follow up of the Health and Employment After Fifty (HEAF) study, a cohort study of 8,134 adults aged 50-64, recruited through 24 English general practices. Health and social care workers, identified through the Standard Occupational Classification 2010, were the focus of this cross-sectional analysis. The outcome under investigation was self-reported pain lasting more than a day in the past month, at one or more of eight anatomical sites: neck, low back, mid-back, shoulder, elbow, wrist/hand, knee, foot/ankle. Socio-demographic variables, self-reported health measures, psychosocial work factors (job dissatisfaction, lack of appreciation, lack of support) and occupational activities (kneeling or squatting for more than 1 hr/day, standing for most of the day) were ascertained through postal questionnaire, and associations with pain at specific anatomical sites and multi-site (≥2 anatomical sites) pain were explored with logistic regression, firstly adjusted for age and sex and then adjusted for additional confounders. A total of 282 participants were working in health and social care at second year follow up. Mean age was 59 years and 90% of them were women. Of these workers, n = 199 (71%) reported pain in at least one site, while n = 147 (52%) reported multi-site pain. The most reported anatomical sites with pain were knee and low back, with a prevalence of 39% and 34% respectively. Significant risk factors for knee pain were poor self-rated health (OR = 4.2; 95%CI 2.1 to 8.2) and being exposed to kneeling for longer than an hour/day at work (OR = 2.0; 95%CI 1.2 to 3.4). Similar results were found for low back pain, while for multi-site pain mental exhaustion also appeared to have an effect. None of the socio-demographic variables or psychosocial work factors influenced the outcomes. In a sample of health and social care workers in the UK, the prevalence of low back, neck and multi-site pain is high. The common risk factors were being exposed to kneeling at work and reporting poor/fair health. S. D'Angelo: None. G. Ntani: None. H. Syddall: None. E.C. Harris: None. C. Linaker: None. M. Stevens: None. K. Walker-Bone: None.

Objective: The aim of this study was to investigate whether foot and lower limb related symptoms were associated with work participation and poor mobility in people with Systemic Lupus Erythematosus (SLE).Method: A quantitative, cross‐sectional, self‐reported survey design was utilised. People with SLE from six United Kingdom (UK) treatment centres and a national register were invited to complete a survey about lower limb and foot health, work participation and mobility. Data collected included work status and the prevalence of foot symptoms. The focus of the analyses was to explore potential associations between poor foot health work non‐participation.Results: In total, 182 useable surveys were returned. Seventy‐nine respondents reported themselves as employed and 32 reported work non‐participation. The remaining were retired due to age or reported work non‐participation for other reasons. Work non‐participation due to foot symptoms was significantly associated with difficulty walking (p = 0.024), past episodes of foot swelling (p = 0.041), and past episodes of foot ulceration (p = 0.018). There was a significant increase in foot disability scores amongst those not working (mean 18.13, 95% CI: 14.85–21.41) compared to those employed (mean 10.16, 95% CI: 8.11–12.21).Conclusions: Twenty‐nine% of people with SLE reported work non‐participation because of lower limb or foot problems. Our results suggest that foot health and mobility may be important contributors to a persons' ability to remain in work and should be considered as part of a clinical assessment.