How well prepared are hospitals for future crises? Board members perceive their hospitals as resilient for acute crises.

Resilience is an organizational capacity in day-to-day practice and crisis situation performance. A one of a kind crisis for hospitals is the COVID-19 pandemic. The long duration and magnitude of this crisis offers the opportunity to gain insight into the complexity of crisis management and organizational resilience of hospitals. This interview study therefore explored the organizational resilience of Dutch hospitals during the first 14 months of the COVID-19 pandemic. Nine board members of nine Dutch hospitals were interviewed by means of a semi-structured interview that was built on thirteen indicators of organizational resilience. The results showed that board members considered their hospitals as resilient on almost all indicators. Their judgments varied about how prepared and ready for future crises they considered their hospital. According to board members, hospitals are mainly prepared for "acute" short-term crises, thanks to good crisis leadership, open communication and strong networks. A crisis as long as the COVID-19 pandemic was unprecedented and therefore more difficult to deal with. In between the infection waves, work processes were reflected upon to learn, anticipate and respond more smoothly to successive waves. However, the enduring nature of the COVD-19 crisis presented complex organizational challenges. Crisis operations were eventually scaled down and hospitals had to manage the crisis and regular care as two companies side by side. Each crisis manifests differently. Fostering trust in healthcare staff and allowing them to act autonomously during crises, while diligently monitoring external influences and potential future crises, are therefore paramount in developing organizational adaptive capacities.

Implementing a new living concept for persons with dementia in long-term care: evaluation of a quality improvement process.

BACKGROUND: Improving quality of nursing home care for residents is a constant focus of stakeholders involved within quality improvement projects. Though, achieving change in long-term care is challenging. Process evaluations provide insight into the nature, exposure and experiences of stakeholders and influencing mechanisms for implementation. The aim of this study is to gain insight into the process and facilitating and hindering mechanisms of implementing a quality improvement project that seeks to create a dementia-friendly community with a nursing home at its core. METHODS: For the process evaluation we planned a case study design with an ethnographic approach. Various research methods were used: qualitative observations, focus groups, interviews and questionnaires for various stakeholders and document review. Data collection and analyses in this study is based on the Consolidated Framework for Implementation Research. RESULTS: Four main lessons were learned. Firstly, nursing staff are crucial to achieve more freedom for residents. Secondly, high-impact changes in daily care need strong and sustainable focus from the care organisation. Thirdly, dementia-friendly societies should be deployed from multiple actors, which entails long-term collaborations with external stakeholders. Fourthly, the transition to a dementia-friendly society requires meeting spaces for and a focus on both residents and people from the community. Consequently, local residents are shifting from external to internal stakeholders, extending beyond the regular involvement of informal carers and volunteers within the nursing home. CONCLUSIONS: Nursing homes are part of the local community and provide opportunities to collaborate on a dementia-friendly society. However, the change that is required (promoting freedom, residents' autonomy and the redesign of care processes) is complex and influenced by various mechanisms. Understanding these mechanisms can benefit other care organisations that strive to implement a similar initiative.

The impact of eHealth use on general practice workload in the pre-COVID-19 era: a systematic review.

BACKGROUND: In recent years, eHealth has received much attention as an opportunity to increase efficiency within healthcare organizations. Adoption of eHealth might consequently help to solve perceived health workforce challenges, including labor shortages and increasing workloads among primary care professionals, who serve as the first point of contact for healthcare in many countries. The purpose of this systematic review was to investigate the impact of general eHealth use and specific eHealth services use on general practice workload in the pre-COVID-19 era. METHODS: The databases of CINAHL, Cochrane, Embase, IEEE Xplore, Medline ALL, PsycINFO, Web of Science, and Google Scholar were searched, using combinations of keywords including 'eHealth', 'workload', and 'general practice'. Data extraction and quality assessment of the included studies were independently performed by at least two reviewers. Publications were included for the period 2010 - 2020, before the start of the COVID-19 pandemic. RESULTS: In total, 208 studies describing the impact of eHealth services use on general practice workload were identified. We found that two eHealth services were mainly investigated within this context, namely electronic health records and digital communication services, and that the largest share of the included studies used a qualitative study design. Overall, a small majority of the studies found that eHealth led to an increase in general practice workload. However, results differed between the various types of eHealth services, as a large share of the studies also reported a reduction or no change in workload. CONCLUSIONS: The impact of eHealth services use on general practice workload is ambiguous. While a small majority of the effects indicated that eHealth increased workload in general practice, a large share of the effects also showed that eHealth use reduced workload or had no impact. These results do not imply a definitive conclusion, which underscores the need for further explanatory research. Various factors, including the study setting, system design, and the phase of implementation, may influence this impact and should be taken into account when general practices adopt new eHealth services. STUDY REGISTRATION NUMBER: PROSPERO (International Prospective Register of Systematic Reviews) CRD42020199897; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=199897 .

Favourable effect of a 'second hit' after 13 weeks in early RA non-responders: the Amsterdam COBRA treat-to-target randomized trial.

OBJECTIVE: The aim of this study was to investigate the effect of treat-to-target combination therapy with intensification at 13 weeks in early RA. METHODS: Early RA patients were classified as being at high or low risk of worsening RA based on disease activity and prognostic factors. High-risk patients received COBRA-light (prednisolone 30 mg/day tapered to 7.5 mg/day, MTX increasing to 25 mg/week), and low-risk patients received MTX monotherapy increasing to 25 mg/week. The primary outcome (target) was DAS44 < 1.6 or EULAR good response at 26 weeks. At 13 weeks, non-responders were randomized to (open-label) intensification [high-risk patients: prednisolone 60 mg/day tapered to 7.5 mg/day, addition of SSZ (2 g/day) and HCQ (400 mg/day); low-risk patients: prednisolone 30 mg/day tapered to 7.5 mg/day] or continuation. RESULTS: In the high-risk group (n = 150), 110 patients (73%) reached the target at 13 weeks, and 9 dropped out. Non-responders were randomized to intensification (n = 15) or continuation (n = 16), and after 26 weeks, 12 (80%) vs 7 (44%) of these, respectively, reached the target [difference: 36%, (95% CI 2%, 71%); P = 0.04]. In the low-risk group (n = 40), 17 (43%) reached the target. Non-responders were randomized to intensification (n = 8) or continuation (n = 7); 4 vs 3, respectively, reached the target.Adverse event rates were higher in the high-risk group, and higher in the intensification subgroup of that group. Serious adverse events were rare. Protocol violations were frequent and mostly led to mitigation of actual treatment intensification. CONCLUSION: Initial combination therapy was very successful in high-risk RA, and early intensification was beneficial in patients not reaching the strict target. The low-risk group was too small for drawing conclusions. In routine practice, adherence to early intensification based on strict targets is difficult. TRIAL REGISTRATION: Netherlands Trial Register (NTR), NL4393, https://www.trialregister.nl/.

General Practices' Experiences With Patients' Web-Based Access to Medical Records: Survey Study.

BACKGROUND: Patients' web-based access to their medical records is expected to promote their role and responsibility in managing their own health and treatments and supporting shared decision-making. As of July 2020, general practices in the Netherlands are legally obliged to provide their patients access to their electronic medical records. Web-based access provision is facilitated and stimulated through a national support program named OPEN. OBJECTIVE: We aimed to investigate general practice staff experiences with providing web-based access; investigate its impact on patient consultations, administrative actions, and patient inquiries; and investigate how it affects routine general practice workflow processes. METHODS: In October 2021, a total of 3813 general practices in the Netherlands were invited to complete a web-based survey that included questions regarding their experiences with the provision of web-based access to medical records and how it affects routine general practice workflow. Responses of general practices that started providing web-based access before 2020, in 2020, or in 2021 were analyzed to identify trends. RESULTS: Of 3813 invited general practices, 523 (13.72%) completed the survey. Approximately all responding general practices (487/523, 93.1%) indicated that they provide web-based access. Experiences with patients' web-based access were diverse, with 36.9% (178/482) primarily positive, 8.1% (39/482) primarily negative, 42.3% (204/482) neutral, and 12.7% (61/482) could not (yet) indicate how they experienced web-based access. Of the total, two-thirds (311/473, 65.8%) reported an increase in e-consultations and a similar percentage (302/474, 63.7%) indicated an increase in administrative actions associated with web-based access provision. A small proportion of the practices (≤10%) experienced a decrease in patient contacts. Earlier adoption of web-based access was associated with a more positive attitude toward web-based access and more positive experienced effects related to patient contacts and general practice workflow. CONCLUSIONS: The surveyed general practices mainly experienced providing web-based access as either neutral or mostly positive, despite an increased number of patient contacts and administrative burden that were associated with its adoption. Periodic monitoring of experiences is needed to understand the temporal or structural nature of both the intended and unintended effects of patients' web-based access to medical records for general practices and their staff.

Low Adoption of Video Consultations in Post-COVID-19 General Practice in Northern Europe: Barriers to Use and Potential Action Points.

In the wake of the COVID-19 pandemic, video consultation was introduced in general practice in many countries around the world as a solution to provide remote health care to patients. It was assumed that video consultation would find widespread adoption in post-COVID-19 general practice. However, adoption rates remain low across countries in Northern Europe, suggesting that barriers to its use exist among general practitioners and other practice staff. In this viewpoint, we take a comparative approach, reflecting on similarities and differences in implementation conditions of video consultations in 5 Northern European countries' general practice settings that might have created barriers to its use within general practice. We convened at a cross-disciplinary seminar in May 2022 with researchers and clinicians from 5 Northern European countries with expertise in digital care in general practice, and this viewpoint emerged out of dialogues from that seminar. We have reflected on barriers across general practice settings in our countries, such as lacking technological and financial support for general practitioners, that we feel are critical for adoption of video consultation in the coming years. Furthermore, there is a need to further investigate the contribution of cultural elements, such as professional norms and values, to adoption. This viewpoint may inform policy work to ensure that a sustainable level of video consultation use can be reached in the future, one that reflects the reality of general practice settings rather than policy optimism.

Physical Activity in People With Dementia Living in Long-Term Care Facilities and the Connection With Environmental Factors and Behavior.

This study is conducted in order to gain a better understanding of the relationship between physical activity and agitated behavior among older people with dementia, and physical activity and characteristics of long-term care wards. Data were collected among people with dementia living in long-term care facilities (N = 76) by conducting observations at the wards and distributing questionnaires among professional caregivers. The results show that participants are largely inactive (82.8%) and a significant relation was found between the degree of physical activity and characteristics of the ward such as "taking sufficient time," which relates to the time caregivers take when interacting with residents. This study supports the existing knowledge about the degree of physical activity among people with dementia in long-term care and adds information about the potential influence of organizational factors that could be valuable for daily practice.

''We usually choose safety over freedom'': results from focus groups with professional caregivers in long-term dementia care.

BACKGROUND: People with dementia living in nursing homes are mostly sedentary, which is a consequence of various personal, environmental and organizational factors. Until now, studies on physical activity and safety in dementia have focused on residents and caregivers from the viewpoint of (individual) care provision and health benefits. There has been little to no focus on the possible influence of group dynamics between care providers with regard to physical activity and safety. The aim of this study is to gain more insight into the viewpoints and intentions of groups of professional caregivers towards safety and physical activity and the potential influence of the group-oriented setting in long-term care on physical activity of individual residents. METHODS: A qualitative study comprising three focus group discussions including professional caregivers (n = 15) was conducted within two long-term care organizations in the Netherlands. Focus group discussions were structured using an interview guide derived from a preliminary framework, based on existing literature and complemented with clinical expertise. RESULTS: Seven themes could be derived from the focus group discussions that influence physical activity and safety: 1) Individual health and abilities; 2) Balancing physical activity and safety; 3) Physical restraints; 4) Group interests versus the individual interests; 5) Organization of care and physical environment; 6) Perceived responsibilities and tasks of professional caregivers and 7) Change is challenging. CONCLUSIONS: Due to multiple influencing factors, the balance for care providers in long-term care generally tends towards safety over physical activity. Furthermore, in order to stimulate physical activity various limitations are experienced, including the organization of care, the general health of the residents and difficulty to achieve changes in daily care. Most importantly, the group interests of both the professional caregivers and the residents have a substantial influence on the incorporation of physical activity in daily care.

Normal mortality of the COBRA early rheumatoid arthritis trial cohort after 23 years of follow-up.

OBJECTIVES: Mortality in patients with rheumatoid arthritis (RA) is higher than in the general population. We investigated mortality in the COBRA-trial cohort after 23 years follow-up, compared with a reference sample of the Dutch population. METHODS: The COBRA-trial randomised patients with early RA to sulfasalazine monotherapy (SSZ, n=79) or a combination of SSZ, low-dose methotrexate and initially high, step-down prednisolone (COBRA, n=76). We compared the mortality in the COBRA-trial up to 2017 to a reference sample of the general population in the Netherlands (standardised mortality ratio, SMR), and its relation to early prognostic factors through stepwise Cox regression. RESULTS: Duration of follow-up in patients alive was mean 23 (range 22-24) years. In total, 44 patients died (28%, SMR=0.80 [95% CI 0.59 to 1.06]); 20 of 75 COBRA patients (27%, SMR 0.75 [0.47 to 1.14]) and 24 of 79 SSZ patients (30%, SMR 0.85 [0.56 to 1.25]); p=0.61). In the reference sample of the general population, 55 people (36%) died. 5 factors were significantly associated with increased mortality hazard: damage progression at 28 weeks; high Health Assessment Questionnaire (HAQ) score and absence of HLA-DR 2 or 3; disease duration from start of complaints was also significant, but showed an uninterpretable pattern. CONCLUSIONS: This prospective trial cohort study of early RA is one of the first to show similar mortality compared with the general population after 23 years of follow-up. It confirms that early, intensive treatment of RA has long-term benefits and suggests that treating to target is especially important for patients with poor prognosis.

The relationship between remission and health-related quality of life in a cohort of SLE patients.

OBJECTIVE: To investigate the relationship between remission and health-related quality of life (HRQoL) in patients with SLE in a longitudinal observational cohort. METHODS: HRQoL was measured at cohort visits using the physical and mental component score (PCS and MCS, respectively) of the Short Form 36 questionnaire. Definitions of Remission in SLE remission categories (no remission/remission on therapy/remission off therapy) were applied. Determinants of PCS and MCS were identified with simple linear regression analyses. Association between remission and HRQoL was assessed using generalized estimating equation models. RESULTS: Data from 154 patients with 2 years of follow-up were analysed. At baseline 60/154 (39.0%) patients were in either form of remission. Patients in remission had higher Short Form 36 scores in all subdomains compared with patients not in remission. PCS was positively associated with remission and employment, and negatively associated with SLICC damage index, ESR, medication, patient global assessment and BMI. MCS was positively associated with Caucasian ethnicity and negatively associated with patient global assessment. In generalized estimating equation analysis, a gradual and significant increase of PCS was observed from patients not in remission (mean PCS 36.0) to remission on therapy (41.8) to remission off therapy (44.8). No significant difference in MCS was found between remission states. CONCLUSION: we show a strong and persistent association between remission and PCS, but not MCS. These results support the relevance (construct validity) of the Definition of Remission in SLE remission definitions and the further development of a treat-to-target approach in SLE.

Prevalence and validity of ACR/EULAR remission in four European early rheumatoid arthritis cohorts.

OBJECTIVES: In 2011 an ACR/EULAR collaboration developed new remission definitions for RA. In the present study, we evaluated the prevalence and predictive validity of these new ACR/EULAR remission criteria in 4 different European early rheumatoid arthritis cohorts. METHODS: Data from a tot al of 722 patients with early RA were analysed. Presence of remission at 6 months, as defined by one of the 4 proposed ACR/EULAR remission definitions was used to predict good functional and radiological outcome between 1 and 2 years of follow-up. RESULTS: Remission rates at 6 months ranged from 2-17% (Boolean definition) between the four cohorts. The level of HAQ and radiological damage varied between cohorts. Patients in remission at 6 months have an increased likelihood of long-term good outcome in terms of HAQ stability, but not radiographic stability. The performance of the practice definitions of remission was highly similar to the trial definitions. CRP status seems to add little information to the classification of remission in early RA. CONCLUSIONS: In clinical practice, a minority of patients with early RA achieves remission in the first 6 months of treatment. Remission at 6 months is predictive for good HAQ outcome between year 1 and 2 after inclusion, but not radiographic stability.

The patient perspective on absence of disease activity in rheumatoid arthritis: a survey to identify key domains of patient-perceived remission.

BACKGROUND: Guidelines suggest treatment in rheumatoid arthritis (RA) to target remission, in close consultation with the patient. Our recent qualitative study of the patients' perspective on remission in RA identified 26 domains. The current study aimed to identify a short list of the most important aspects to inform future research. METHODS: Patients with RA from the Netherlands, the UK, Austria, Denmark, France and the USA completed a survey that contained all domains identified in our qualitative study. They rated domains for importance ('not important', 'important' or 'essential' to characterise a period of remission) and if important or essential, whether this domain needs to be 'less', 'almost gone' or 'gone' to reflect remission. Respondents were also asked to determine their personal top 3 most important/essential domains. Frequency of specific domains in the top 3 was calculated, and domains were sorted on the percentage of patients that evaluated a particular domain as 'essential'. RESULTS: Of 274 respondents, 75% were female, mean (SD) age 57(13) years, disease duration 12(9) years. The top 3 were as follows: pain (67%), fatigue (33%) and independence (19%); domains most frequently rated as 'essential' were as follows: pain (60%), being mobile (52%), physical function (51%), being independent (47%) and fatigue (41%). Pain needed to be less (13%), almost gone (42%) or gone (45%) to reflect remission. Similar patterns were seen for fatigue, independence, mobility and physical functioning. CONCLUSION: Patients identified pain, fatigue and independence as the most important domains of RA disease activity that need to be improved to reflect remission.

Similar efficacy and safety of initial COBRA-light and COBRA therapy in rheumatoid arthritis: 4-year results from the COBRA-light trial.

Objective: To assess the efficacy and safety of initial COBRA-light vs COBRA therapy in RA patients after a 4-year follow-up period. Methods: In the COBRA-light trial, 162 consecutive patients with recent-onset RA were randomized to either COBRA-light (prednisolone and MTX) or COBRA therapy (prednisolone, MTX and SSZ) for 1 year. After 1 year, treatment was continued without protocol, and adjusted by the treating physician according to clinical judgement, preferably with a treat-to-target strategy. Four years after trial initiation, all patients were invited to participate in the COBRA-light extension study, in which patients were interviewed and physically examined, patient reported outcomes were assessed, radiographs were made and clinical records were examined for comorbidities and medication use. Results: In the extension study, 149 out of 162 (92%) original trial patients participated: 72 COBRA-light and 77 COBRA patients. Initial COBRA-light and COBRA therapy showed similar effect on disease activity, physical functioning, radiological outcome and Boolean remission over the 4-year follow-up period. In addition, both treatment groups showed similar survival and major comorbidities, although the power to detect differences was limited. Besides protocolled differences in prednisolone, MTX and SSZ use, the use of other synthetic and biologic DMARDs and intra-articular and intramuscular glucocorticoid injections was similar in both treatment groups over the 4-year period. Conclusion: Early RA patients initially treated with COBRA-light or COBRA therapy had similar efficacy and safety outcomes over a 4-year follow-up period.

The short-term effects of two high-dose, step-down prednisolone regimens on body composition in early rheumatoid arthritis.

OBJECTIVE: To investigate the effect of two different high-dose, step-down prednisolone regimens on body composition in early RA patients after 26 weeks of treatment. METHODS: Prednisolone-naive patients with recent-onset RA (n = 108) were randomized to either COBRA (prednisolone 60 mg/day, tapered to 7.5 mg/day in 6 weeks; MTX and SSZ) or COBRA-light therapy (prednisolone 30 mg/day, tapered to 7.5 mg/day in 8 weeks and MTX). Body composition was assessed at baseline (before or soon after start of treatment) and after 26 weeks with DXA, and recorded as total body mass (TBM), total fat mass (FM), total lean mass (LM) and trunk/peripheral fat ratio. Log-ratio analyses assessed the proportional distribution of TBM (between LM, FM and bone mass) and FM (between trunk, extremities and head). The subgroup of patients with a DXA before start of treatment (n = 38) was analysed separately. RESULTS: In the subgroup of patients with a DXA before start of treatment, TBM increased by 1.6 kg (P < 0.001) and total FM by 1.3 kg (P < 0.001). The trunk/peripheral fat ratio and the proportional distribution of TBM and FM remained stable over time. There were no differences between the treatment groups. Similar results were obtained in the study population as a whole. CONCLUSION: Both high-dose, step-down prednisolone regimens caused increases in TBM, mainly caused by an increase in FM, but we found no fat redistribution from peripheral to central tissues. This absence in fat redistribution contradicts the widely held assumption of rapid adverse effects of prednisolone on body composition in RA. TRIAL REGISTRATION: ISRCTNregistry, http://www.isrctn.com, ISRCTN55552928.

The patient perspective on remission in rheumatoid arthritis: 'You've got limits, but you're back to being you again'.

OBJECTIVES: The aim of rheumatoid arthritis (RA) treatment is remission. As treatment should be targeted at outcomes relevant to patients, it is important to understand how patients perceive remission, and to assess whether the current definition of remission adequately reflects these perceptions. The objective of this study is to explore the patient perspective on remission in RA. METHODS: Nine focus-group discussions in Austria, The Netherlands and UK were conducted, including patients in American College of Rheumatology (ACR)/ European League of Rheumatology (EULAR) remission, self-declared remission and in moderate/high disease activity. Moderators employed a prespecified interview guide helped to engage patients in a discussion on their experience with remission. Inductive thematic analysis was performed within each country, and identified themes were discussed across countries. RESULTS: 47 RA patients (66% women, disease duration 9 years) participated. Three major themes of patient-perceived remission emerged: (1) symptoms would either be absent or strongly reduced, (2) impact of the disease on daily life would diminish by increased independence, ability to do valued activities, improved mood and ability to cope; (3) leading to a return to normality, including work, family role and perception of others. Patients felt the concept of remission was influenced by ageing, side effects of medication, comorbidities, accrued damage to joints and disease duration. Opinions on duration of state, the role of medication and measurement instruments varied widely. CONCLUSIONS: Patients characterise remission by the absence or reduction of symptoms, but more directly by decreased daily impact of their condition and the feeling of a return to normality. The next step is to study whether an additional patient-perceived measure of remission may add value to the ACR/EULAR definition of remission.

Initial high-dose prednisolone combination therapy using COBRA and COBRA-light in early rheumatoid arthritis.

Treatment with initial high-dose prednisolone and a combination of methotrexate (MTX) and sulfasalazine (SSZ) according to the COBRA regimen (Dutch acronym for combinatietherapie bij reumatoide artritis, 'combination therapy for rheumatoid arthritis'), has repeatedly been demonstrated to be very effective in early rheumatoid arthritis (RA). COBRA combination therapy is superior to initial monotherapy of SSZ and MTX, is also associated with a good long-term outcome, is as safe as other treatment regimes, and performs as well as the combination of high-dose MTX and the tumor necrosis factor antagonist infliximab. A pilot study with an intensified version of the COBRA combination therapy showed that strict monitoring and aggressive treatment intensification based on the Disease Activity Score can result in a remission rate of 90% in patients with active early RA. Also, the first results indicate that an attenuated variation on COBRA combination therapy, called 'COBRA-light', is effective in decreasing disease activity and is generally well tolerated. Based on these results, we conclude that initial high-dose prednisolone in combination with MTX and SSZ could or should be the first choice in early active RA since it is effective and safe, and the cost price of the drugs is low.

Chronological reading of radiographs in rheumatoid arthritis increases efficiency and does not lead to bias.

OBJECTIVES: To evaluate the difference between chronological and random sequence reading in a series of radiographs with 11 years' follow-up. In addition, the influence of the starting point and length of series was evaluated. METHODS: Two experienced readers independently and repeatedly scored digitised radiographs of 62 patients at time points 0, 2, 5, 8 and 11 years of follow-up from the COBRA follow-up database according to the Sharp/van der Heijde method. A linear mixed model was fitted to the data. RESULTS: Over 11 years the mean scores increased by 3.8 points per year. Compared to random reading, chronological reading resulted in a slightly increased progression rate of 0.4 points per year (p=0.008) and a lower standard error of the mean total progression rate of 0.30 (compared to 0.35 for random reading). Over 11 years, this results in a small difference in progression estimates of about five points, but a highly relevant difference of over 25% of patients needed in a study to find a difference in radiological outcome between two groups. Reading of short series, or series including a baseline radiograph, results in a significantly higher yearly progression rate compared to reading of long series, or series not including a baseline measurement. CONCLUSIONS: Chronological reading of radiographs is preferred above random reading, due to decreased variability around the estimation of the progression rate; this increased efficiency translates into smaller sample sizes, or increased power to detect small differences. For studies with long-term follow-up, the same two readers should read all radiographs, including baseline.

Symptom complexes in patients with seropositive arthralgia and in patients newly diagnosed with rheumatoid arthritis: a qualitative exploration of symptom development.

OBJECTIVE: The aim of this study was to explore symptoms and symptom development during the earliest phases of RA in patients with seropositive arthralgia and patients newly diagnosed with RA. METHODS: Interviews were conducted with 15 seropositive patients (anti-CCP positive, and often with arthralgia) and 11 newly presenting RA patients [classified according to the 2010 ACR/European League Against Rheumatism (EULAR) criteria]. Feedback procedures shared the experiences of seropositive arthralgia patients with early RA patients and vice versa. Data were analysed using thematic analysis. RESULTS: Symptoms common to both groups included joint pain, psychological distress, muscle cramps, abnormal skin sensations, stiffness, loss of motor control, weakness, fatigue and sleeping difficulties. Also, patterns of symptom evolution and the order of symptom development were described. Seropositive arthralgia patients described pain as annoying, while RA patients described how the severity of pain intensified before diagnosis, to the point where symptoms were psychologically distressing. Patients with seropositive arthralgia described reddening of the skin and burning sensations that they felt were indicative of the onset of swelling. Intense pain appeared to precede the onset of swelling for those with RA, which was often palindromic and travelled between joints until it later became persistent. CONCLUSION: This study highlights the breadth of symptoms that constitute the earliest phases of RA. Further research is needed to develop measures of symptom patterns and clusters to allow the predictive utility of symptoms to be assessed and to allow the integration of aspects of the patient's history into evidence-based investigative and management algorithms for use in primary and secondary care.

Measurement of stiffness in patients with rheumatoid arthritis in low disease activity or remission: a systematic review.

BACKGROUND: Recent qualitative research has shown that stiffness is an important symptom for patients to identify remission. However, it is unclear how to measure stiffness in low disease activity. This systematic review aims to summarise the existing literature on validity of patient reported outcomes to measure stiffness in RA low disease activity states, to aid the choice for a measurement instrument. METHODS: An extensive pubmed-search was undertaken, identifying measurement instruments for patient perceived stiffness used in low disease activity. Eligible studies reported on 1) stiffness as an outcome in relation to other core set measures, 2) development of a patient reported tool to measure stiffness, or 3) comparison of two different tools to measure aspects of stiffness, all in low disease activity. RESULTS: Of 788 titles, only two studies report on validity of stiffness measures within low disease activity. Morning stiffness (MS) is reported in 44 to 80% of patients in low disease activity. A difference of 40 to 60 minutes in duration until maximum improvement is observed between active and inactive patients. Severity of MS might discriminate better between high and low disease activity compared to measurement of duration of MS. CONCLUSIONS: There is insufficient data on measurement of stiffness in the spectrum of low disease activity or remission.