Irini Gergianaki

Health care and social media: What patients really understand

Background: Low health literacy is associated with decreased patient compliance and worse outcomes - with clinicians increasingly relying on printed materials to lower such risks. Yet, many of these documents exceed recommended comprehension levels. Furthermore, patients look increasingly to social media (SoMe) to answer healthcare questions. The character limits built into Twitter encourage users to publish small quantities of text, which are more accessible to patients with low health literacy. The present authors hypothesize that SoMe posts are written at lower grade levels than traditional medical sources, improving patient health literacy. Methods: The data sample consisted of the first 100 original tweets from three trending medical hashtags, leading to a total of 300 tweets. The Flesch-Kincaid Readability Formula (FKRF) was used to derive grade level of the tweets. Data was analyzed via descriptive and inferential statistics. Results: The readability scores for the data sample had a mean grade level of 9.45. A notable 47.6% of tweets were above ninth grade reading level. An independent-sample t-test comparing FKRF mean scores of different hashtags found differences between the means of the following: #hearthealth versus #diabetes (t = 3.15, p = 0.002); #hearthealth versus #migraine (t = 0.09, p = 0.9); and #diabetes versus #migraine (t = 3.4, p = 0.001). Conclusions: Tweets from this data sample were written at a mean grade level of 9.45, signifying a level between the ninth and tenth grades. This is higher than desired, yet still better than traditional sources, which have been previously analyzed. Ultimately, those responsible for health care SoMe posts must continue to improve efforts to reach the recommended reading level (between the sixth and eighth grade), so as to ensure optimal comprehension of patients.

Cognitive deficits early in the course of rheumatoid arthritis

ABSTRACT Objective: The aim was to examine the severity and prevalence of cognitive difficulties in persons with rheumatoid arthritis (RA) within the first three years of diagnosis. Method: One hundred consecutive RA patients aged 28–67 years (90% women) were administered a battery of 6 neuropsychological tests yielding 14 cognitive indices. Self-reported measures of trait anxiety, depression, impact of disease on daily activities, and pain severity were also obtained along with physician-rated disease severity. Results: Twenty percent of RA patients were classified as cognitively impaired, defined as age- and education-adjusted scores at least 1.5 standard deviations below the population mean on 3 or more cognitive indices. Impaired performance, controlling for age, education, and premorbid cognitive capacity, was detected primarily on measures of short-term memory, immediate and delayed episodic recall, and phonemic fluency. There were modest negative associations between cognitive indices and measures of perceived disease severity (pain level, impact of disease on daily functionality, and overall health quality). Conclusions: Cognitive deficits on several domains are frequently encountered in relatively young RA patients during the first few years of the disease and may need to be taken into account as important correlates of disease severity and progression.

Epidemiology and burden of systemic lupus erythematosus in a Southern European population: data from the community-based lupus registry of Crete, Greece

Objectives Several population-based studies on systemic lupus erythematosus (SLE) have been reported, yet community-based, individual-case validated, comprehensive reports are missing. We studied the SLE epidemiology and burden on the island of Crete during 1999–2013. Methods Multisource case-finding included patients ≥15 years old. Cases were ascertained by the ACR 1997, SLICC 2012 criteria and rheumatologist diagnosis, and validated through synthesis of medical charts, administrative and patient-generated data. Results Overall age-adjusted/sex-adjusted incidence was 7.4 (95% CI 6.8 to 7.9) per 100 000 persons/year, with stabilising trends in women but increasing in men, and average (±SD) age of diagnosis at 43 (±15) years. Adjusted and crude prevalence (December 2013) was 123.4 (113.9 to 132.9) and 143 (133 to 154)/105 (165/105 in urban vs 123/105 in rural regions, p<0.001), respectively. Age-adjusted/sex-adjusted nephritis incidence was 0.6 (0.4 to 0.8) with stable trends, whereas that of neuropsychiatric SLE was 0.5 (0.4 to 0.7) per 100 000 persons/year and increasing. Although half of prevalent cases had mild manifestations, 30.5% developed organ damage after 7.2 (±6.6) years of disease duration, with the neuropsychiatric domain most frequently afflicted, and 4.4% of patients with nephritis developed end-stage renal disease. The ACR 1997 and SLICC 2012 classification criteria showed high concordance (87%), yet physician-based diagnosis occurred earlier than criteria-based in about 20% of cases. Conclusions By the use of a comprehensive methodology, we describe the full spectrum of SLE from the community to tertiary care, with almost half of the cases having mild disease, yet with significant damage accrual. SLE is not rare, affects predominantly middle-aged women and is increasingly recognised in men. Neuropsychiatric disease is an emerging frontier in lupus prevention and care.

Adaptation to an autoimmune disorder: Does mental flexibility impact illness-related self-regulation?

Objective: To examine whether mental flexibility moderates the relationship between illness representations of control and coping behaviour in individuals suffering from rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE). Design: Recently, diagnosed RA (N = 80) and SLE (N = 75) patients completed questionnaires about illness representations of personal and treatment control and four coping behaviours: instrumental coping, adherence to medical advice, palliative coping and wishful thinking. Mental flexibility was assessed with the Trail Making Test Part B (TMT-B), while visuomotor processing speed, as a confounder, was assessed with the Trail Making Test Part A (TMT-A). Moderated mediation models were tested within a bootstrapped multiple regression framework. Results: TMT-A scores had no statistically significant moderation effects on the relation between representations and coping behaviour. Conversely, in those participants with SLE, TMT-B scores moderated the relation of personal control to wishful thinking and palliative coping, as well as the relation of treatment control to both wishful thinking and palliative coping. All significant effects were restricted to the SLE group. Conclusion: Interactions between neurocognitive factors and the process of illness adaptation may emerge early during the course of SLE. The present findings highlight the role of cognitive functioning as an integral part of the illness-related self-regulation mechanism.

Genomic dissection of Systemic Lupus Erythematosus: Distinct Susceptibility, Activity and Severity Signatures

Recent genetic and genomics approaches have yielded novel insights in the pathogenesis of Systemic Lupus Erythematosus (SLE) but the diagnosis, monitoring and treatment still remain largely empirical1,2. We reasoned that molecular characterization of SLE by whole blood transcriptomics may facilitate early diagnosis and personalized therapy. To this end, we analyzed genotypes and RNA-seq in 142 patients and 58 matched healthy individuals to define the global transcriptional signature of SLE. By controlling for the estimated proportions of circulating immune cell types, we show that the Interferon (IFN) and p53 pathways are robustly expressed. We also report cell-specific, disease-dependent regulation of gene expression and define a core/susceptibility and a flare/activity disease expression signature, with oxidative phosphorylation, ribosome regulation and cell cycle pathways being enriched in lupus flares. Using these data, we define a novel index of disease activity/severity by combining the validated Systemic Lupus Erythematosus Disease Activity Index (SLEDAI)1 with a new variable derived from principal component analysis (PCA) of RNA-seq data. We also delineate unique signatures across disease endo-phenotypes whereby active nephritis exhibits the most extensive changes in transcriptome, including prominent drugable signatures such as granulocyte and plasmablast/plasma cell activation. The substantial differences in gene expression between SLE and healthy individuals enables the classification of disease versus healthy status with median sensitivity and specificity of 83% and 100%, respectively. We explored the genetic regulation of blood transcriptome in SLE and found 3142 cis-expression quantitative trait loci (eQTLs). By integration of SLE genome-wide association study (GWAS) signals and eQTLs from 44 tissues from the Genotype-Tissue Expression (GTEx) consortium, we demonstrate that the genetic causality of SLE arises from multiple tissues with the top causal tissue being the liver, followed by brain basal ganglia, adrenal gland and whole blood. Collectively, our study defines distinct susceptibility and activity/severity signatures in SLE that may facilitate diagnosis, monitoring, and personalized therapy.

PS3:51 Multimorbidity burden in sle: preliminary data from the community-based lupus registry of crete

Purpose To examine the prevalence of comorbidities in SLE patients at the community as well as their impact on disease outcomes.1 Methods We utilised data from the Cretan Lupus Registry.2 Comorbidities were defined based on self-reported condition(s) and/or use of relevant treatments, and were accessed through face interviews upon enrollment (period 2012–2015). Data on organ damage (SLICC/ACR Damage Index [SDI]), disease severity (modified BILAG index) and hospitalizations were abstracted from the medical charts. Results We included 399 SLE patients with mean age at diagnosis 43 years and disease duration 7 years. The total number of comorbidities was (mean ±SD) 3.4±2.4 and 42% of patients had multi-morbidity (>3 comorbidities). The mean Charlson Comorbidity Index was 0.9±1.1. The prevalence of major comorbidities in SLE patients and their co-occurrence matrix are shown in Figure 1 and Table 1, respectively. Most frequent physical comorbidity was thyroid disease (45%), which frequently (19%) concurred with a mental disorder. Although 36% of patients reported mental disorders, only 14% were regularly seen by a mental health professional. Female SLE patients had increased frequency of thyroid (51% versus 16%, p<0.001), allergic diseases (21% versus 3%, p=0.006), and osteoporosis (19% versus 6%, p=0.05) compared to male patients, whereas respiratory comorbidities (21% versus 9%, p<0.001) and alcohol abuse (3% versus 0%, p<0.01) were more prevalent among male patients. Analysis according to the place of residence revealed increased prevalence of respiratory comorbidities among patients who reside in rural (12.3%) versus urban (7.2%) or semi-urban (7.7%) regions (p=0.014). SLE patients with multi-morbidity had more hospitalizations due to active disease (2.2±5.8 versus 1.1±2.3, p<0.001) and increased organ damage accrual (SDI>0) (40.8% versus 28.5%, p=0.044) compared to those with ≤3 comorbidities. In multivariable analysis, age-adjusted Charlson Comorbidity Index was associated with disease severity (Odds Ratio 1.43, p<0.003) Conclusions Our results from a community-based registry highlight a considerable burden of physical and mental multi-morbidity in SLE patients, which may be linked to adverse disease outcomes.Abstract PS3:51 Table 1 Prevalence and combinations of main comorbidities of SLE patientsAbstract PS3:51 Figure 1 Prevalence of physical (1A) and mental comorbidities (1B) of SLE patients (n=399) at the community level (cretan lupus registry) References . Expert Rev Clin Immunol2017;13(8):753–768. . Gergianaki I, et al. Ann Rheum Dis2017.

Emotion regulation contributes to the well-being of patients with autoimmune diseases through illness-related emotions: A prospective study:

This prospective study aimed to examine whether illness-related negative emotions mediate the relationship of cognitive reappraisal and expressive suppression to the well-being of 99 patients with rheumatoid arthritis or multiple sclerosis. After adjusting for disease and patient-related parameters, only cognitive reappraisal was associated with physical and psychological well-being through emotions. Expressive suppression was associated with psychological well-being only for patients reporting less use of cognitive reappraisal. These results underscore the need for prospective studies that will investigate the long-term impact of emotion regulation on adaptation to chronic illness and the conditions under which this impact takes place.

Systemic Lupus Erythematosus in Primary Care: An Update and Practical Messages for the General Practitioner

Systemic Lupus Erythematosus (SLE) is a complex chronic autoimmune disease that manifests a wide range of organ involvement. Traditionally, the diagnosis and management of SLE is provided at secondary and tertiary centers to ensure prompt initiation of treatment, adequate control of flares and prevention of irreversible organ damage. Notwithstanding, the role of primary care in SLE is also emerging as there are still significant unmet needs such as the diagnostic delay at the community level and the high burden of therapy- and disease-related comorbidities. In the present review, we summarize practical messages for primary care physicians and general practitioners (GPs) concerning early diagnosis and proper referral of patients with SLE. In addition, we discuss the main comorbidities complicating the disease course and the recommended preventative measures, and we also provide an update on the role and current educational needs of GPs regarding the disease.

Update on the epidemiology, risk factors, and disease outcomes of systemic lupus erythematosus

Obtaining an updated view of the epidemiology, risk factors, and prognosis of systemic lupus erythematosus (SLE) is pivotal to our understanding of the disease burden. Recent community-based studies with comprehensive methodology provided more accurate disease occurrence estimates and suggested that SLE may be more frequent than previously thought. Gender, race, and socioeconomic status are important disease determinants, and there is increasing appreciation of the contribution of family history and environmental exposures in SLE susceptibility. Owing to its systemic nature, assessment of disease activity is challenging, also pertaining to efforts to improve trial endpoints for better discrimination between active drug and placebo. Notably, emerging evidence supports that remission or low disease activity states and prevention of flares are realistic targets in the management of SLE associated with improved prognosis. For the future, we anticipate that high-throughput analyses in patient cohorts will enhance the identification of robust biomarkers for diagnosis, risk stratification, and personalized treatment.

Patient and partner dispositional optimism as a long-term predictor of illness representations in autoimmune diseases

We examined whether the dispositional optimism of patients suffering from an autoimmune disease as well as of their partners can predict, at a dyadic level, their representations of illness consequences, and personal and treatment control, assessed 1 year later. Patient optimism predicted several patient and partner illness representations. Partner optimism was unrelated to own or patient illness representations. Results highlight the strong long-term predictive power of patient optimism and underline the importance of the interpersonal function of personality traits. At the same time, study findings indicate that the dyadic effects of optimism are complex and probably conditional on several factors.