Rebecca J. Stack

Delays in assessment of patients with rheumatoid arthritis: variations across Europe

Objective The first 3 months after symptom onset represent an important therapeutic window for rheumatoid arthritis (RA). This study investigates the extent and causes of delay in assessment of patients with RA in eight European countries. Method Data on the following levels of delay were collected from 10 centres (Berlin, Birmingham, Heraklion, Lund, Prague, Stockholm, Umeå, Vienna, Warsaw and Zurich): (1) from onset of RA symptoms to request to see healthcare professional (HCP); (2) from request to see HCP to assessment by that HCP; (3) from initial assessment by HCP to referral to rheumatologist; and (4) from referral to rheumatologist to assessment by that rheumatologist. Results Data were collected from 482 patients with RA. The median delay across the 10 centres from symptom onset to assessment by the rheumatologist was 24 weeks, with the percentage of patients seen within 12 weeks of symptom onset ranging from 8% to 42%. There were important differences in the levels underlying the total delays at individual centres. Conclusions This research highlights the contribution of patients, professionals and health systems to treatment delay for patients with RA in Europe. Although some centres have strengths in minimising certain types of delay, interventions are required in all centres to ensure timely treatment for patients.

Delays in help seeking at the onset of the symptoms of rheumatoid arthritis: a systematic synthesis of qualitative literature

A systematic review of qualitative peer-reviewed publications was conducted to identify drivers of and barriers to help-seeking behaviour in adults with new-onset rheumatoid arthritis (RA). 1058 abstracts were searched to identify relevant publications. 21 relevant publications were identified assessed for quality and subjected to analysis informed by thematic and grounded theory frameworks. Several interacting themes were identified including the early experience of symptoms in relation to disease prototypes, minimising the impact of symptoms, speaking to others, gathering information and seeking alternative treatments, and issues related to accessing health services and attitudes towards healthcare professionals. Many people suggested that they had little knowledge of RA before diagnosis, believing RA to be a mild condition that affected older people. These misperceptions made correct symptom interpretation unlikely. Normalising and ignoring symptoms led people to delay in help-seeking. However, when symptoms impacted on daily activities help was usually sought. Individual interpretations of symptoms are both drivers of and barriers to help seeking. Targeted public health interventions are required to inform symptom interpretation and reduce delays.

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 patients history into evidence-based investigative and management algorithms for use in primary and secondary care.

Standardisation of labial salivary gland histopathology in clinical trials in primary Sjögren's syndrome

Labial salivary gland (LSG) biopsy is used in the classification of primary Sjögrens syndrome (PSS) and in patient stratification in clinical trials. It may also function as a biomarker. The acquisition of tissue and histological interpretation is variable and needs to be standardised for use in clinical trials. A modified European League Against Rheumatism consensus guideline development strategy was used. The steering committee of the ad hoc working group identified key outstanding points of variability in LSG acquisition and analysis. A 2-day workshop was held to develop consensus where possible and identify points where further discussion/data was needed. These points were reviewed by a subgroup of experts on PSS histopathology and then circulated via an online survey to 50 stakeholder experts consisting of rheumatologists, histopathologists and oral medicine specialists, to assess level of agreement (0–10 scale) and comments. Criteria for agreement were a mean score ≥6/10 and 75% of respondents scoring ≥6/10. Thirty-nine (78%) experts responded and 16 points met criteria for agreement. These points are focused on tissue requirements, identification of the characteristic focal lymphocytic sialadenitis, calculation of the focus score, identification of germinal centres, assessment of the area of leucocyte infiltration, reporting standards and use of prestudy samples for clinical trials. We provide standardised consensus guidance for the use of labial salivary gland histopathology in the classification of PSS and in clinical trials and identify areas where further research is required to achieve evidence-based consensus.

Symptom complexes at the earliest phases of rheumatoid arthritis: a synthesis of the qualitative literature.

Understanding the features and patterns of symptoms that characterize the earliest stages of rheumatoid arthritis (RA) is of considerable importance if patients are to be identified and started on treatment early. However, little is known about the characteristics of symptoms at the onset of a disease that eventually progresses to RA.

A qualitative exploration of multiple medicines beliefs in co‐morbid diabetes and cardiovascular disease

Aim   Multiple medicines are typically prescribed for patients with Type 2 diabetes (T2D) and cardiovascular disease (CVD). Non‐adherence to medicines can arise for those who self‐manage the complex regimens typical of T2D and CVD. Perceptions about treatment and illness are probable drivers of adherence and self‐management behaviours. However, few studies have explored perceptions about multiple medicines and none has examined the complexities of managing medicines used in T2D and CVD. We explored perceptions towards multiple medicines expressed by people managing co‐morbid T2D and CVD.

Patient perceptions of treatment and illness when prescribed multiple medicines for co-morbid type 2 diabetes.

Illness and treatment perceptions are vital for people self-managing co-morbid conditions with associated cardiovascular disease, such as type 2 diabetes (T2D). However, perceptions of a co-morbid condition and the use of multiple medicines have yet to be researched. This study investigated the illness and treatment perceptions of people with co-morbid T2D. The Brief Illness Perception Questionnaire (repeated for T2D, hypertension, and hyperlipidemia) and the Beliefs about Medicines Questionnaire Specific Concerns Scales (repeated for Oral hypoglycemic agents, anti-hypertensive medicines, and statins) were sent to 480 people managing co-morbid T2D. Data on the number of medicines prescribed were collected from medical records. Significantly different perceptions were found across the illnesses. The strongest effect was for personal control; the greatest control reported for T2D. Illness perceptions of T2D differed significantly from perceptions about hyperlipidemia. Furthermore, illness perceptions of T2D also differed from perceptions of hypertension with the exception of perceptions of illness severity. Hypertension and hyperlipidemia shared similar perceptions about comprehensibility, concerns, personal control, and timeline. Significant differences were found for beliefs about treatment necessity, but no difference was found for treatment concerns. When the number of medicines was taken as a between-subjects factor, only intentional non-adherence, treatment necessity beliefs, and perceptions of illness timeline were accounted for. Co-morbid illness and treatment perceptions are complex, often vary between illnesses, and can be influenced by the number of medicines prescribed. Further research should investigate relationships between co-morbid illness and treatment perception structures and self-management practices.

Intentional and unintentional non-adherence in community dwelling people with type 2 diabetes: the effect of varying numbers of medicines

People with type 2 diabetes are often prescribed multi ple medicines which can be difficult to manage. Nonadherence to medicines can be intentional (e.g. active decision) or unintentional (e.g. forgetting). The objective of this study was to measure intentional and unintentional non-adherence to differing numbers of medicines prescribed in type 2 diabetes. A cross-sectional survey using the Morisky medication adherence scale (with intentional and unintentional non-adherence subscales) was completed by 480 people prescribed oral antidiabetic drugs (OADs), antihypertensive agents and statins. A within-subject analysis of variance (ANOVA) showed that intentional non-adherence did not vary between OADs, anti-hypertensives and statins. Intentional non-adherence to statins significantly increased when the number of medicines prescribed was included as a between-subjects variable (p<0.05). Another withinsubject ANOVA on unintentional non-adherence found a significant difference between OADs, anti-hypertensives and statins; unintentional non-adherence to OADs was significantly higher (p<0.05). When the number of medicines was added as a between-subject variable unintentional nonadherence was associated with higher numbers of medicines. This study shows the difference between intentional and unintentional non-adherence behaviours, and the effect that varying numbers of medicines can have on these behaviours. Br J Diabetes Vasc Dis 2010;10:148–152.

Impact of Symptoms on Daily Life in People at Risk of Rheumatoid Arthritis

Objectives: To explore the impact on daily life of symptoms experienced by those with systemic autoimmunity associated with rheumatoid arthritis (RA). Methods: Fifteen people took part in focus groups to explore the impact of symptoms on daily life. Results: Core themes included: 1) physical impact of limited hand function and mobility; 2) psychological distress experienced included a fear of symptoms progressing into RA, uncertainty about the future, feelings of despair, shame and frustration. Conclusion: People with arthralgia at risk of developing RA experienced considerable physical and psychological impact of symptoms. Greater consideration should be given to the needs of people at risk of developing RA.

General practitioners' perspectives on campaigns to promote rapid help-seeking behaviour at the onset of rheumatoid arthritis.

Abstract Objective. To explore general practitioners’ (GPs’) perspectives on public health campaigns to encourage people with the early symptoms of rheumatoid arthritis (RA) to seek medical help rapidly. Design. Nineteen GPs participated in four semi-structured focus groups. Focus groups were audio-recorded, transcribed verbatim, and analysed using thematic analysis. Results. GPs recognised the need for the early treatment of RA and identified that facilitating appropriate access to care was important. However, not all held the view that a delay in help seeking was a clinically significant issue. Furthermore, many were concerned that the early symptoms of RA were often non-specific, and that current knowledge about the nature of symptoms at disease onset was inadequate to inform the content of a help-seeking campaign. They argued that a campaign might not be able to specifically target those who need to present urgently. Poorly designed campaigns were suggested to have a negative impact on GPs’ workloads, and would “clog up” the referral pathway for genuine cases of RA. Conclusions. GPs were supportive of strategies to improve access to Rheumatological care and increase public awareness of RA symptoms. However, they have identified important issues that need to be considered in developing a public health campaign that forms part of an overall strategy to reduce time to treatment for patients with new onset RA. This study highlights the value of gaining GPs’ perspectives before launching health promotion campaigns.