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 .

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.

Improving quality and patient safety in surgical care through standardisation and harmonisation of perioperative care (SAFEST project): A research protocol for a mixed methods study.

INTRODUCTION: Adverse events in health care affect 8% to 12% of patients admitted to hospitals in the European Union (EU), with surgical adverse events being the most common types reported. AIM: SAFEST project aims to enhance perioperative care quality and patient safety by establishing and implementing widely supported evidence-based perioperative patient safety practices to reduce surgical adverse events. METHODS: We will conduct a mixed-methods hybrid type III implementation study supporting the development and adoption of evidence-based practices through a Quality Improvement Learning Collaborative (QILC) in co-creation with stakeholders. The project will be conducted in 10 hospitals and related healthcare facilities of 5 European countries. We will assess the level of adherence to the standardised practices, as well as surgical complications incidence, patient-reported outcomes, contextual factors influencing the implementation of the patient safety practices, and sustainability. The project will consist of six components: 1) Development of patient safety standardised practices in perioperative care; 2) Guided self-evaluation of the standardised practices; 3) Identification of priorities and actions plans; 4) Implementation of a QILC strategy; 5) Evaluation of the strategy effectiveness; 6) Patient empowerment for patient safety. Sustainability of the project will be ensured by systematic assessment of sustainability factors and business plans. Towards the end of the project, a call for participation will be launched to allow other hospitals to conduct the self-evaluation of the standardized practices. DISCUSSION: The SAFEST project will promote patient safety standardized practices in the continuum of care for adult patients undergoing surgery. This project will result in a broad implementation of evidence-based practices for perioperative care, spanning from the care provided before hospital admission to post-operative recovery at home or outpatient facilities. Different implementation challenges will be faced in the application of the evidence-based practices, which will be mitigated by developing context-specific implementation strategies. Results will be disseminated in peer-reviewed publications and will be available in an online platform.

Potential for pharmacist prescribing in primary care: A Dutch citizen perspective.

Background: Medication prescribing by pharmacists is a task shifting approach to help ensure quality and accessibility of healthcare. In many countries, like the Netherlands, pharmacist prescribing is not legally ensured, and it is unknown what citizens think of its potential introduction. Objective: To investigate citizen perspectives on the potential role of pharmacists in prescribing in primary care. Methods: A Citizen Platform with citizens (>18 years) from the Netherlands was conducted in October 2022. This consisted of a one-day program in which the participants were engaged in interactive assignments and received expert presentations to foster the development of informed opinions. In the final assignment, 3 participant groups designed their ideal future scenario including preconditions regarding the role of the pharmacist in prescribing in primary care. All assignments were recorded, and notes were taken. The researchers then consolidated the 3 scenarios into one version and categorized the preconditions. The Citizen Platform results were summarized and subsequently discussed in 2 online focus groups with other citizens in February 2023 to investigate the perspectives of less informed citizens. Focus group discussions were audio-recorded, transcribed, and thematically analyzed. Results: The Citizen Platform (n = 10) resulted in a shared scenario involving a primary care center where general practitioners (GPs) pharmacists and other healthcare professionals collaborate as a team. In this scenario, pharmacists can modify treatment in certain chronic diseases, manage minor ailments and support GPs with the care for patients with complex needs. Preconditions needed to realize this scenario include having shared medical records, the GP retaining the overview of the care for the patient and additional training for pharmacists. The focus groups (n = 6, in total) yielded 5 themes which acknowledge potential pharmacist prescribing but depict a more skeptical view towards pharmacist prescribing and include several concerns, for example pharmacists' potential conflict of interest. Conclusions: Citizens that are informed about opportunities for pharmacy prescribing are capable of sketching potential scenarios for pharmacist prescribing in a collaborative primary care context. Less informed citizens seem more skeptical towards pharmacist prescribing.

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.

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.

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.

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/.

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.

Task shifting from general practitioners to practice assistants and nurses in primary care: a cross-sectional survey in 34 countries.

AIM: To describe variation in task shifting from GPs to practice assistants/nurses in 34 countries and to explain differences by analysing associations with characteristics of the GPs and their practices and features of the health care systems. BACKGROUND: Redistribution of tasks and responsibilities in primary care are driven by changes in demand, such as the growing number of patients with chronic conditions, and workforce developments, including staff shortage. The need to manage an expanding range of services has led to adaptations in the skill-mix of primary care teams. These developments are hampered by barriers between professional domains. METHODS: Data were collected between 2011 and 2013 through a cross-sectional survey among approximately 7,200 general practitioners (GPs) in 34 countries. Task shifting is measured through a composite score of GPs' self-reported shifting of tasks. Independent variables at GP and practice level are as follows: innovativeness; part-time working; availability of staff; location and population of the practice. Country-level independent variables are as follows: demand for and supply of care, nurse prescribing, and professionalisation of practice assistants/nurses. Multilevel analysis is used to account for clustering of GPs in countries. FINDINGS: Countries vary in the degree of task shifting. Regarding GP and practice characteristics, use of electronic health records and availability of support staff in the practice are positively associated with task shifting and GPs' working hours negatively, in line with our hypotheses. Age of the GPs is, contrary to our hypothesis, positively related to task shifting. These variables explain 11% of the variance at GP level. Two country variables are related to task shifting: a lower percentage of practices without support staff in a country and nurse prescribing rights coincide with more task shifting. The percentage of practices without support staff has the strongest relationship, explaining 73% of the country variation.

''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.

"Get Used to the Fact That Some of the Care Is Really Going to Take Place in a Different Way": General Practitioners' Experiences with E-Health during the COVID-19 Pandemic.

The first outbreak of the COVID-19 pandemic led to the introduction of the more extensive use of e-health in Dutch general practices. The objective of this study was to investigate the experiences of general practitioners (GPs) regarding this change. In addition, the necessary conditions for e-health technology to be of added value to general practices were explored. In April 2020, 30 GPs were recruited for in-depth interviews via a web survey which contained questions regarding the use of e-health during the first wave of the pandemic. While most GPs intend to keep using e-health applications more extensively than before the pandemic, the actual use of e-health depends on several factors, including the characteristics of the application's users. The following conditions for successful and sustainable implementation of e-health were identified: (1) integration of e-health technology in the organization of GP care, (2) sufficient user-friendliness of applications as well as digital skills of professionals and patients, and (3) adequate technological and financial support of e-health services. GPs clearly recognize the benefits of using e-health, and most GPs intend to keep using e-health applications more extensively than before the pandemic. However, improvements are needed to allow widespread and sustainable adoption of e-health technology in general practices.

Use of E-Health in Dutch General Practice during the COVID-19 Pandemic.

The COVID-19 pandemic has forced general practices to search for possibilities to provide healthcare remotely (e.g., e-health). In this study, the impact of the pandemic on the use of e-health in general practices in the Netherlands was investigated. In addition, the intention of practices to continue using e-health more intensively and differences in the use of e-health between practice types were investigated. For this purpose, web surveys were sent to general practices in April and July 2020. Descriptive data analysis was performed and differences in the use of e-health between practice types were tested using one-way ANOVA. Response rates were 34% (n = 1433) in April and 17% (n = 719) in July. The pandemic invoked an increased use of several (new) e-health applications. A minority of practices indicated the intention to maintain this increased use. In addition, small differences in the use of e-health between the different practice types were found. This study showed that although there was an increased uptake of e-health in Dutch general practice during the COVID-19 pandemic, only a minority of practices intends to maintain this increased use in the future. This may point towards a temporary uptake of digital healthcare delivery rather than accelerated implementation of digital processes.

Task shifting from general practitioners to practice assistants and nurses in primary care: a cross-sectional survey in 34 countries.

AIM: To describe variation in task shifting from general practitioners (GPs) to practice assistants/nurses in 34 countries, and to explain differences by analysing associations with characteristics of the GPs, their practices and features of the health care systems. BACKGROUND: Redistribution of tasks and responsibilities in primary care are driven by changes in demand for care, such as the growing number of patients with chronic conditions, and workforce developments, including staff shortage. The need to manage an expanding range of services has led to adaptations in the skill mix of primary care teams. However, these developments are hampered by barriers between professional domains, which can be rigid as a result of strict regulation, traditional attitudes and lack of trust. METHODS: Data were collected between 2011 and 2013 through a cross-sectional survey among approximately 7200 GPs in 34 countries. The dependent variable 'task shifting' is measured through a composite score of GPs' self-reported shifting of tasks. Independent variables at GP and practice level are: innovativeness; part-time working; availability of staff; location and population of the practice. Country-level independent variables are: institutional development of primary care; demand for and supply of care; nurse prescribing as an indicator for professional boundaries; professionalisation of practice assistants/nurses (indicated by professional training, professional associations and journals). Multilevel analysis is used to account for the clustering of GPs in countries. FINDINGS: Countries vary in the degree of task shifting by GPs. Regarding GP and practice characteristics, use of electronic health record applications (as an indicator for innovativeness) and age of the GPs are significantly related to task shifting. These variables explain only little variance at the level of GPs. Two country variables are positively related to task shifting: nurse prescribing and professionalisation of primary care nursing. Professionalisation has the strongest relationship, explaining 21% of the country variation.

Systematic review of rheumatoid arthritis clinical studies: Suboptimal statistical analysis of radiological data.

INTRODUCTION: The distribution of progression scores in rheumatoid arthritis is highly skewed, requiring advanced statistical analysis techniques, with different techniques resulting in different outcomes. METHODS: Three databases were searched to identify rheumatoid arthritis clinical trials and observational studies that described radiographic analysis techniques, comparing at least two groups. RESULTS: Of 5980 identified papers, 225 were eligible for data extraction. Parametric techniques (t-tests, ANOVA or linear regression) were used in 39 studies, of which 18% took the skewed distribution into account. In 53 studies, continuous data was categorized and analyzed with binomial or ordinal methods (chi-square tests or logistic regression). Two studies treated the outcome as a 'count' outcome variable (applying a Poisson). CONCLUSION: There is large heterogeneity in the analysis strategy of radiographic progression in recent rheumatoid arthritis clinical trials and observational studies, with the majority of studies applying simple, suboptimal or inappropriate methods.

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.

Initial validation and results of the Symptoms in Persons At Risk of Rheumatoid Arthritis (SPARRA) questionnaire: a EULAR project.

OBJECTIVES: To describe the development and assess the psychometric properties of the novel 'Symptoms in Persons At Risk of Rheumatoid Arthritis' (SPARRA) questionnaire in individuals at risk of rheumatoid arthritis (RA) and to quantify their symptoms. METHODS: The questionnaire items were derived from a qualitative study in patients with seropositive arthralgia. The questionnaire was administered to 219 individuals at risk of RA on the basis of symptoms or autoantibody positivity: 74% rheumatoid factor and/or anticitrullinated protein antibodies positive, 26% seronegative. Validity, reliability and responsiveness were assessed. Eighteen first degree relatives (FDR) of patients with RA were used for comparison. RESULTS: Face and content validity were high. The test-retest showed good agreement and reliability (1 week and 6 months). Overall, construct validity was low to moderate, with higher values for concurrent validity, suggesting that some questions reflect symptom content not captured with regular Visual Analogue Scale pain/well-being. Responsiveness was low (small subgroup). Finally, the burden of symptoms in both seronegative and seropositive at risk individuals was high, with pain, stiffness and fatigue being the most common ones with a major impact on daily functioning. The FDR cohort (mostly healthy individuals) showed a lower burden of symptoms; however, the distribution of symptoms was similar. CONCLUSIONS: The SPARRA questionnaire has good psychometric properties and can add information to currently available clinical measures in individuals at risk of RA. The studied group had a high burden and impact of symptoms. Future studies should evaluate whether SPARRA data can improve the prediction of RA in at risk individuals.