Rosemary J. Hollick

Objectives: Fibromyalgia is associated with substantial burden for individuals and healthcare systems, yet care remains fragmented and inconsistent. Experiences of not being believed are common and contribute to delays in diagnosis, repeated consultations, and poor outcomes. There is limited evidence on how care should be organised and delivered. We sought to identify and characterise how those features of care valued by people with fibromyalgia are enacted across diverse UK services. Methods: We conducted multi-site ethnographic case studies of services providing care for people with fibromyalgia across England, Scotland and Wales. Services were purposively sampled from various settings as identified through prior surveys, professional networks and stakeholder input. Data included observations, documentary analysis, and staff interviews, and were analysed thematically to identify shared features of care. Results: 12 cases were studied, comprising approximately 200 hours of observation, 59 interviews and documentary analysis. Across diverse service models, common features included innovative approaches to multi-disciplinary team service delivery, underpinned by a holistic biopsychosocial ethos with a strong emphasis on validating patients’ experiences. Key aspects were relationship-based care, coaching to support self-management, continuity of care, opportunities for peer support. Validation appeared to enable engagement with care and support behaviour change. Conclusion: These findings shift the focus from specific interventions to the organisation and delivery of care as key determinants of effective fibromyalgia management. By identifying how services can support validation, engagement and continuity, this work provides a practical foundation for co-designed principles of care to inform the development of more consistent, patient-centred services.

Summary The relationship between bone mineral density (BMD) at the femoral neck and fracture risk was determined in a meta-analysis of primary data of 307205 men and women from 53 cohort studies. Low BMD was an important predictor of fracture risk, particularly for hip fracture. Introduction This study aimed to quantify the relationship between DXA-measured femoral neck BMD and fracture risk and examine the effect of age, sex, time since measurement, and initial BMD value on fracture risk, with a view to updating FRAX®. Methods We studied 307,205 men and women from within 53 predominately population-based cohorts followed up for an average of 8.7 years and a total of 2,683,185 person-years. The association of BMD and fracture risk was examined using a Poisson model in each cohort separately by sex. Results were expressed as a gradient of risk (GR, hazard ratio/standard deviation decrease in BMD). The different studies were then merged using weighted coefficients. Results Most hip fractures arose in men and women with low bone mass or osteoporosis at baseline (73% and 92%, respectively) as was also the case for MOF (65% and 85%, respectively). BMD at the femoral neck strongly predicted hip fractures both in men and women with a similar gradient of risk and absolute risk at any given T-score. At the age of 65 years, the GR was 2.73 (95% CI = 2.29–3.26) in men and 2.61 (95% CI = 2.34–2.92) in women. However, the magnitude of association was significantly dependent on age, with a higher gradient of risk at younger ages. For example, at age 50 years, the GR was 3.49 (95% CI 2.51–4.84) in men and decreased to 2.14 (1.96–2.34) at age 80 years. The change in GR with age was slightly less marked in women (3.23 [2.75–3.80] and 2.11 [1.99–2.44], respectively). The GR for major osteoporotic fracture (MOF) remained unchanged with age (p = 0.12 for women and p = 0.89 for men). A significant decrease in GR for hip fracture was observed with increasing duration of follow-up, but the magnitude of the effect was modest compared with the effect of age. For other fracture outcomes, including non-hip major osteoporotic fracture, the gradient of risk was lower than for hip fracture. Conclusions Femoral neck BMD is a risk factor for fracture of substantial importance, particularly for future hip fracture. The lower magnitude of association at older age is consistent with other non-skeletal factors contributing to hip fracture risk with advancing age. Its validation on an international basis supports its use in case finding strategies. Its use should, however, take account of the variations in predictive value of BMD with age, sex, length of follow-up, and BMD.

PrIOritising early detection of KNEE osteoaRthritis – PIOKNEER. Knee Osteoarthritis (KOA) is a common condition resulting from knee joint damage, and is a leading cause of disability, poorer well-being, and reduced work capacity. Current treatments involve lifestyle changes, painkillers, and joint replacement. There are no drugs that can slow down the damage, partly because we are unable to detect changes in the knee at an early enough stage. KOA studies usually include patients with knee changes that can be seen on x-ray. At this stage of KOA, treatments are less likely to work, and we do not have good measures to assess whether treatment is working. Patient and public involvement (PPI) conducted as part of the development of the PIOKNEER study (and the FRESKO pilot study) highlighted these issues as key knowledge gaps. PIOKNEER aims to use innovative techniques to detect early-stage changes in the knee and monitor them over time. The study plan is shown in Figure 1. We will use a population survey to identify people aged 35-70 years with knee pain that is not the result of injury, surgery or another condition. Eligible participants will be invited for a knee x-ray. From this group we will recruit at least 300 people who have no or minimal changes that can be seen on x-ray (Kellgren-Lawrence grade 0-1, early KOA group) and 100 people with established osteoarthritis on x-ray (Kellgren-Lawrence grade >2). At baseline all participants will undergo imaging using a clinical-grade Field-Cycling Imaging (FCI) scanner (developed in Aberdeen to provide more detailed information than standard MRI), clinical examination, questionnaires about their symptoms, and blood and urine samples (biomarkers) to detect disease activity. Participants with early KOA (n>300) will be monitored every 12 months for 4 years with FCI, questionnaires and blood and urine samples to define disease trajectories. In addition, 20 people with either stable or rapidly worsening KOA will undergo ultrasound guided knee biopsies to collect synovium, a membrane that surrounds the knee, to understand how changes in synovium affect knee damage. We will work with our patients to understand the experiences of people living with early-stage KOA to make the project relevant and accessible. We will conduct interviews with patient partners and co-produce guidance to support timely care pathways. This work will form part of a separate ethics application. PIOKNEER outcomes will improve early diagnosis and monitoring of KOA and determine the most effective treatments pathways.

Background: Fibromyalgia is a chronic condition characterised by widespread pain, fatigue, and multiple somatic and psychological symptoms. Despite evidence-based management recommendations, little is known about how services are designed and delivered within resource-constrained health systems. Methods: Using routinely collected healthcare data from Scotland and Wales, we examined patterns of healthcare utilisation, comorbidities, and treatment in people with fibromyalgia. In Scotland, 196 participants from the MAmMOTH study were linked to national healthcare records. In Wales, 19,742 fibromyalgia cases were matched with 76,746 controls using the SAIL databank. Analyses compared healthcare use before and after diagnosis and between patient groups. Findings: People with fibromyalgia experienced complex, prolonged healthcare journeys marked by multiple specialist referrals and frequent investigations. Individuals meeting fibromyalgia criteria without diagnosis had two to three times higher healthcare use than those with chronic pain or confirmed diagnosis, suggesting diagnostic uncertainty among clinicians. Pre-diagnosis care involved high referral rates to surgical, orthopaedic, gastroenterology, and neurology services, with rheumatology attendances increasing immediately before diagnosis. Healthcare use remained elevated post-diagnosis, indicating persistent unmet needs. Fibromyalgia frequently co-existed with other conditions including depression and anxiety (73.6%), irritable bowel syndrome, sleep disorders, and inflammatory conditions. Management was predominantly pharmacological: 95% were prescribed antidepressants, 82% opiates, and 51% gabapentin, despite recommendations prioritising non-pharmacological approaches. Surgical procedures and diagnostic investigations were significantly more common in fibromyalgia patients than controls. Conclusions: Consistent patterns across Scotland and Wales reveal system-level challenges: diagnostic uncertainty, fragmented care, limited holistic support, and high potential for avoidable harm through over-investigation and inappropriate prescribing. These findings highlight opportunities for improvement through strengthening primary care diagnosis and management, clarifying care pathways, promoting non-pharmacological approaches, and ensuring continuity through coordinated, multidisciplinary support. Addressing these gaps could improve patient outcomes while reducing costs and harm across the health system.

"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."

Objectives: We aimed to estimate how rheumatology outpatient hospital attendances have changed since the COVID-19 pandemic and determine demographic characteristics associated with observed changes. Methods: Using three primary and secondary care electronic health record datasets in England (with the approval of NHS England), Scotland and Wales, we identified people with a diagnosis of RA before 1 April 2019. We determined the proportion of people with rheumatology hospital outpatient appointments each month [April 2019 to December 2022 (Wales and Scotland), November 2023 (England)] and quantified changes using interrupted time-series analysis. We used logistic regression to determine characteristics associated with having fewer appointments compared with 2019. Results: We identified 145 065, 3813 and 13 637 people coded with RA in England, Scotland and Wales, respectively. At the start of the COVID-19 pandemic the number of rheumatology outpatient appointments dropped sharply across all nations. In England and Scotland, the percentage of monthly appointments has continued to decline. In Wales, while there was a gradual recovery, rheumatology services have not returned to pre-pandemic levels. In contrast, the number of appointments for other specialties has recovered in all nations. People with no rheumatology outpatient appointments were more often aged over 80, male and living in rural areas. Ethnic minorities, those living in more deprived and urban areas had fewer appointments after the start of the pandemic compared with 2019. Conclusion: For the first time, we compared healthcare use across three UK nations and found rheumatology outpatient appointments had not recovered to pre-COVID-19 pandemic levels, particularly in Scotland and England.

Background: Recruitment and retention of healthcare staff in rural and remote areas is a significant problem for the National Health Service. Some communities have experimented with initiatives to support recruitment and retention, but these actions are often ad hoc and undocumented. Objectives: To explore the experiences of remote and rural community members and organisations of trying to attract healthcare staff and their families. To map local context and describe initiatives they have undertaken to improve recruitment. To understand how community initiatives have been received by those staff and families who have been attracted to work and live in a rural area as a result. To assess which initiatives seem to have been more or less successful and why. To provide resources for other communities and the National Health Service based on this learning. Design and setting: Qualitative case studies, three in Scotland and two in England. A case description of each site was developed, and interviews were analysed thematically. Documentary framework analysis of published job adverts for remote and rural healthcare posts. Participants: Case studies: 22 individuals, including community members, healthcare practitioners and family members, took part in interviews and focus groups. Job adverts: 270 from British Medical Journal, and National Health Service Scotland websites for general practitioner and general National Health Service vacancies. Results: Case studies: communities engaged in a range of activities, such as making promotional videos, social media campaigns, help finding accommodation and informal social integration efforts. They drew on multiple local ‘assets’ to encourage healthcare staff to move to the area, including showcasing beautiful local landscapes; outdoor activities; a safe, cohesive community for children; and high quality of life. Often a small number of people drove these efforts. While this worked well in some communities, the burden of responsibility could be unsustainable, and not all communities have people with the necessary skills and time. There was less focus on retention than recruitment. Where this worked well, it relied on informal networks of key individuals who created social links for incoming families. Communities struggle with the absence of some key assets, including housing; schools; employment opportunities for family members; cultural activities. Job adverts: different emphases on job details, place and wider area. Only 18/49 advertisers (of 189 approached) reported positive outcome in terms of appointments. We suggest greater use of photographs and place descriptions in future advertisements. Limitations: This is a small exploratory study. Sampling was constrained by the small number of eligible communities and people involved. Planned ethnographic fieldwork was impacted by the COVID pandemic. Conclusions: Successful recruitment and retention need to focus on the whole person and family, not just the job. There is an important role for communities to play, but communities cannot be expected to solve all recruitment and retention problems. Central and regional government and the National Health Service could work in supportive partnership with communities at an earlier stage, benefiting from their local contextual knowledge and energy. We recommend further longitudinal ethnographic research into retention and a health economics study of the cost-effectiveness of National Health Service job adverts. Study registration: This study is registered as researchregistry7518. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR133888) and is published in full in Health and Social Care Delivery Research; Vol. 13, No. 34. See the NIHR Funding and Awards website for further award information.

Summary In the largest meta-analysis of international cohorts to date, a family history of fracture is confirmed as a significant BMD-independent predictor of future fracture risk. Parental and sibling histories of fracture carry the same significance for future fracture, including the impact of family hip fracture on future hip fracture risk. Purpose We have undertaken a meta-analysis of international prospective cohorts to quantify the relationship between a family history of fracture and future fracture incidence. Methods The analysis dataset comprised 350,542 men and women from 42 cohorts in 29 countries followed for 2.8 million person-years. We investigated the relationship between family history of hip fracture or any fracture and the risk of any clinical fracture, any osteoporotic fracture, major osteoporotic fracture (MOF), and hip fracture alone using an extended Poisson model in each cohort. Models were adjusted for current age, sex, BMD, and follow-up time. Results As no difference in influence of family history of fracture was seen between genders, results are presented for men and women combined. A parental history of hip fracture was associated with a higher risk of incident fracture across all fracture outcome categories, with a stronger relationship with future hip fracture (hazard ratios (HR, 95% CI) for hip and MOF 1.37, 1.23–1.52 and 1.19, 1.12–1.27, respectively). Associations were slightly reduced but remained significant when additionally adjusted for BMD and did not vary by baseline offspring age, follow-up time, or parent affected. In a more limited analysis, parental history of any fracture or a sibling history of hip or any fracture showed similar associations to those observed with parental history of hip fracture. Conclusions A family history of fracture is confirmed as a significant BMD-independent predictor of future fracture risk. While parental hip fracture appears the strongest factor for future hip fracture, a family history of other fractures might be appropriate for inclusion in future iterations of the FRAX tool.