scholarly journals RA disease impact in patients not treated with advanced therapies; survey findings from the National Rheumatoid Arthritis Society

Author(s):  
Elena Nikiphorou ◽  
Hannah Jacklin ◽  
Ailsa Bosworth ◽  
Clare Jacklin ◽  
Patrick Kiely

Abstract Objectives To reveal the everyday impact of living with RA in people not treated with advanced therapies; biologic or targeted synthetic disease modifying anti-rheumatic drugs. Methods People with RA, disease duration more than 2 years, not currently treated with advanced therapies, completed an on-line survey promoted by the National Rheumatoid Arthritis Society. Items covered demographics, current treatment, RA flare frequency, the Rheumatoid Arthritis Impact of Disease (RAID) tool and questions reflecting work status and ability. Descriptive and multivariable regression analyses were performed. Results There were 612 responses, mean age 59 years, 88% female, disease duration 2– 5 years 37.7%, 5–10 years 27.9%. In the last year 90% reported an RA flare, >6 flares in 23%. A RAID ‘patient acceptable state’ was recorded in 12.4%. Each of the seven domains were scored in the high range by > 50% respondents. 74.3% scored sleep problems and 72% fatigue in the high range. A need to change working h was reported by 70%. Multivariable analyses revealed increasing difficulties with daily physical activities, reduced emotional and physical wellbeing in the past week were all significantly associated with pain, number of flares and ability to cope (p < 0.005). The RAID score was significantly predictive of the number of flares. Conclusions Patients not currently treated with advanced therapies experience profound difficulties in everyday living with RA, across a broad range of measures. We advocate that patient reported measures be used to facilitate holistic care, addressing inflammation and other consequences of RA on everyday life.

2010 ◽  
Vol 37 (12) ◽  
pp. 2466-2468 ◽  
Author(s):  
MARY BETH SULLIVAN ◽  
CHRISTINE IANNACCONE ◽  
JING CUI ◽  
BING LU ◽  
KERRI BATRA ◽  
...  

Objective.Patient-reported measures can quickly provide assessments of rheumatoid arthritis (RA) disease activity in the office setting and do not require a laboratory test or physician examination. The goal of our study was to establish the validity of patient-reported indices compared to the C-reactive protein-based Disease Activity Score (DAS28-CRP4).Methods.Baseline and 1-year followup DAS28-CRP4 data were obtained from 740 RA subjects and were compared to indices (MDHAQ, CDAI, RAPID, RADAI, GAS) according to cyclic citrullinated peptide (CCP) status and change at 1 year. Pairwise correlations were calculated for each index.Results.Among 740 subjects, mean age 57 years, disease duration 14 years, the CDAI (r = 0.84, Δ r = 0.80) and RAPID (r = 0.71, Δ r = 0.70) had the highest correlation with the DAS28-CRP4 scores at baseline and 1 year. These correlations were not influenced by CCP status, disease-modifying antirheumatic drug use, biologic use, or by disease duration.Conclusion.In RA, the CDAI and RAPID correlated well with the DAS28-CRP4. They may both be practical and informative in the care of patients in the office setting.


RMD Open ◽  
2022 ◽  
Vol 8 (1) ◽  
pp. e001800
Author(s):  
Lauren Lyne ◽  
Torbjörn Åkerstedt ◽  
Lars Alfredsson ◽  
Tiina Lehtonen ◽  
Saedis Saevarsdottir ◽  
...  

ObjectiveMost studies of rheumatoid arthritis (RA) and sleep have focused on established RA. We here investigate sleep quality and sleep duration in patients with newly diagnosed RA and during 1–12 years after diagnosis.MethodsData were collected on sleep 1–12 years after diagnosis from patients diagnosed 1998–2018 in the Swedish study Epidemiological Investigation of RA. Six sleep domains (sleep problems, non-restorative sleep, insomnia, insufficient sleep, sleep quality perceived as poor and sleep considered a health problem); a global sleep score and time spent in bed were estimated. Using logistic regression, ORs were calculated for each sleep outcome by disease duration. We explored whether pain (low (Visual Analogue Scale=0–20 mm, reference), intermediate=21–70, high=71–100) or functional impairment (Health Assessment Questionnaire>1.0) was associated with problems.ResultsWe had sleep data on 4131 observations (n=3265 individuals). Problems with ≥1 sleep domain (global sleep score) was reported in 1578 observations (38%) and increased with disease duration (OR 1.04, 95% CI 1.02 to 1.07). Median time in bed was 8 hours (Q1-Q3: 7.5–9.0). High-grade pain increased the likelihood of sleep problems ~3–9 fold, and increased functional impairment ~4–8 fold.ConclusionIn this cohort of newly diagnosed patients with RA with access to the current treatment from diagnosis, we did not find any major problems with sleep, and existing sleep problems related mainly to pain and reduced function. Treatment of sleep problems in RA should be guided towards treating the underlying problem causing the sleep disturbance.


2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 380.1-380
Author(s):  
S. Rodriguez-Muguruza ◽  
B. Combe ◽  
F. Guillemin ◽  
A. Olive ◽  
O. Valero ◽  
...  

Background:Fatigue is one of the most prevalent symptom reported by persons with RA. RA-related fatigue is a complex concept with biological, psychological and social interactions.Objectives:In a cohort of early RA patients, to determine and characterize fatigue trajectories over 10 years of follow-up and identify predictors of trajectory membership.Methods:Patients fulfilling the 2010 ACR/EULAR criteria for RA included in the ESPOIR cohort. We used a cluster analysis to obtain fatigue (assessed by fatigue visual analogue scale) trajectories over the course of 10 years from enrolment. Chi-square tests or ANOVA were performed to evaluate differences of baseline variables between fatigue trajectories. Using a multinomial logistic regression we could identify predictors of trajectory membership.Results:We analysed 598 patients with mean disease duration at enrolment of 26.2 ± 40.9 days. Cluster analysis revealed 3 trajectories: high (18%), moderate (52%) and low fatigue (30%). Compared to patients with moderate or low fatigue trajectory, patients with high fatigue trajectory were predominantly women and reported significantly higher duration and intensity of morning stiffness, HAQ score, number of tender joints, levels of pain, number of awakenings due to arthritis, levels of physician and patient global assessment and more frequent sleep problems, and increased psychological distress. Female patients with pain, psychological distress and presence of sicca symptoms had higher risk of being in high trajectory group.Conclusion:These findings suggest that levels of fatigue are rather stable over time in each trajectory. Baseline clinical measures and baseline patient-reported measures of functional status better distinguished the three fatigue trajectories. We did not find differences between trajectories in baseline laboratory measures. Inflammatory activity was not a predictor of being in high trajectory fatigue group.References:[1]Pollard LC, Choy EH, Gonzalez J, Khoshaba B, Scott DL. Fatigue in rheumatoid arthritis reflects pain, not disease activity. Rheumatology (Oxford) 2006;45:885–9[2]Repping-Wuts H, van Riel P, van Achterberg T. Fatigue in patients with rheumatoid arthritis: what is known and what is needed. Rheumatology (Oxford) 2009;48:207–9.[3]Pilgaard T, hagelund L, Stallknecht SE, jensen HH, Esbensen BA. Severity of fatigue in people with rheumatoid arthritis, psoritic artrhitis and spondyoarthritis- Results of cross-sectional study. Plos One. 2019;14:e0211831[4]Feldthusen C, Grimby-Ekman A, Forsblad-d’Elia H, Jacobsson L, Mannerkorpi K. Explanatory factors and predictors of fatigue in persons with rheumatoid arthritis: a longitudinal study. J Rehabil Med 2016 28;48:469–76.[5]Madsen SG, Danneskiold-Samsøe B, Stockmarr A, Bartels EM. Correlations between fatigue and disease duration, disease activity, and pain in patients with rheumatoid arthritis: a systematic review. Scand J Rheumatol. 2016;45:255-61.[6]Olsen CL, Lie E, Kvien TK, Zangi HA. Predictors of fatigue in rheumatoid arthritis patients in remission or in a low disease activity state. Arthritis Care Res (Hoboken) 2016;68:1043–8.[7]Druce K, Jones GT, Macfarlane GJ, Verstappen SMM, Basu N. The longitudinal course of fatigue in rheumatoid arthritis: results from the Norfolk Arthritis Register. J Rheumatol 2015;42:2059–65.Disclosure of Interests:None declared


RMD Open ◽  
2020 ◽  
Vol 6 (1) ◽  
pp. e001146 ◽  
Author(s):  
Kristien Van der Elst ◽  
Patrick Verschueren ◽  
Diederik De Cock ◽  
An De Groef ◽  
Veerle Stouten ◽  
...  

ObjectivesTo identify and characterise a subgroup of patients with early rheumatoid arthritis (RA) reporting not feeling well 1 year after treatment initiation despite achieving optimal disease control according to current treatment standards.MethodsThis observational study included participants of the Care in early RA trial with a rapid and sustained response (DAS28CRP<2.6) from week 16 until year 1 after starting the first RA treatment. Feeling well was assessed at year 1, using five patient-reported outcomes (PROs): pain, fatigue, physical functioning, RA-related quality of life and sleep quality. K-means clustering assigned patients to a cluster based on these PROs. Cohen’s d effect size estimated cluster differences at treatment initiation and week 16, for the five clustering PROs, coping behaviour, illness perceptions and social support.ResultsAnalyses revealed three clusters. Of 140 patients, 77.9% were assigned to the ‘concordant to disease activity’ cluster, 9.3% to the ‘dominant fatigue’ cluster and 12.9% to the ‘dominant pain and fatigue’ cluster. Large differences in pain and fatigue reporting were found at week 16 when comparing the ‘concordant’ with the ‘dominant pain and fatigue’ or the ‘dominant fatigue’ cluster. Small differences in reporting were found for the other PROs. Illness perceptions and coping style also differed in the ‘concordant’ cluster.ConclusionsAlthough most patients reported PRO scores in concordance with their well-controlled disease activity, one in five persistent treatment responders reported not feeling well at year 1. These patients reported higher pain and fatigue, and different illness perceptions and coping strategies early in the disease course.


2015 ◽  
Vol 22 (3) ◽  
pp. 354-361 ◽  
Author(s):  
Natalie F Baruch ◽  
Ellen H O’Donnell ◽  
Bonnie I Glanz ◽  
Ralph HB Benedict ◽  
Alexander J Musallam ◽  
...  

Background: Little is known about long-term cognitive and patient-reported outcomes of pediatric-onset multiple sclerosis (POMS). Objective: The objective of this paper is to compare cognitive and patient-reported outcomes in adults with POMS vs. adult-onset MS (AOMS). Methods: We compared standardized patient-reported measures MSQOL54, MFIS, CES-D and SDMT in adult patients with MS onset prior to and after age 18, using data gathered in the Comprehensive Longitudinal Investigations in MS at Brigham and Women’s Hospital (CLIMB) study. Results: Fifty-one POMS and 550 AOMS patients were compared. SDMT scores were significantly lower in POMS after adjusting for age (−7.57 (−11.72, −3.43; p < 0.001), but not after adjusting for disease duration. Estimated group difference demonstrated lower normative z scores in POMS vs. AOMS in unadjusted analysis (−0.74 (95% CI: −1.18, −0.30; p = 0.0009) and after adjusting for disease duration (−0.60; 95%CI: −1.05, −0.15; p = 0.0097). Findings were unchanged in a subset of POMS diagnosed prior to age 18. In unadjusted and adjusted analyses, no significant differences were observed in health-related quality-of-life, fatigue, depression or social support between POMS and AOMS. Conclusions: Younger age of onset was associated with more impairment in information-processing speed in adults with POMS compared to AOMS, and remained significant when controlling for disease duration in age-normed analysis. The two groups were similar in terms of patient-reported outcomes, suggesting similar qualitative experiences of MS.


RMD Open ◽  
2018 ◽  
Vol 4 (2) ◽  
pp. e000754 ◽  
Author(s):  
Karen Holten ◽  
Joseph Sexton ◽  
Tore K Kvien ◽  
Anna-Birgitte Aga ◽  
Espen A Haavardsholm

ObjectiveTo evaluate the responsiveness of the Rheumatoid Arthritis Impact of Disease (RAID) score compared with other patient-reported outcome measures (PROMs), inflammatory markers and clinical disease activity measures in patients with early rheumatoid arthritis (RA).MethodsDisease-modifying antirheumatic drug–naïve patients with RA with short disease duration were included in the treat-to-target ARCTIC trial and followed for 24 months. The responsiveness of the RAID score was evaluated using standardised response mean (SRM) and relative efficiency (RE) with respect to tender joints by Ritchie Articular Index (RAI). SRMs and REs were also calculated for other PROMs, inflammatory markers and clinical outcome measures. An SRM with value above 0.80 was considered high.Results230 patients with RA were included. The mean±SD symptom duration was 7.1±5.4 months and the baseline mean±SD  RAID score was 4.49±2.14. At 3 months of follow-up, the mean±SD change score for RAID was −2.25±1.98  and the SRM (95%  CI) −1.13 (−1.33 to −0.96). The RAID score showed high responsiveness both at 3 and 6 months (SRM≥0.80) and was more sensitive in detecting change than the reference, tender joints assessed by RAI.ConclusionsThe RAID score proved to be highly responsive to change in patients with RA with short disease duration who followed a treat-to-target strategy. The RAID score was more efficient in detecting change than the reference (RAI) as well as most other PROMs.


2013 ◽  
Vol 41 (1) ◽  
pp. 31-40 ◽  
Author(s):  
René Westhovens ◽  
Kristien Van der Elst ◽  
Ann Matthys ◽  
Michelle Tran ◽  
Isabelle Gilloteau

Objective.To investigate sleep problems, and the relationship between sleep and disease activity, in Belgian patients with established rheumatoid arthritis (RA).Methods.This cross-sectional, observational, multicenter study assessed sleep quality using the Athens Insomnia Scale (AIS) and Pittsburgh Sleep Quality Index (PSQI), and daytime sleepiness using the Epworth Sleepiness Scale (ESS). Additional patient-reported outcomes included visual analog scales (VAS) for fatigue and pain, the Medical Outcomes Study Short Form-36 Health Survey, the Health Assessment Questionnaire-Disability Index (HAQ-DI), and the Positive and Negative Affect Schedule. Multivariate regression and structural equation modeling identified factors associated with sleep quality, with the 28-joint Disease Activity Score [DAS28-C-reactive protein (CRP)] as a continuous or categorical variable. Analyses were performed on the total population and on patients stratified by disease activity status: remission/low (DAS28-CRP ≤ 3.2) or moderate to high (DAS28-CRP > 3.2).Results.Among 305 patients, mean (SD) age was 57.00 (12.38) years and mean (SD) disease duration was 11.77 (9.94) years. Mean (SD) AIS, PSQI, and ESS scores were 6.8 (4.79), 7.8 (4.30), and 7.3 (4.67), respectively. Mean (SD) VAS fatigue, VAS pain, and HAQ-DI were 45.22 (26.29), 39.04 (26.21), and 1.08 (0.75), respectively. There were significant positive relationships between DAS28-CRP and AIS/PSQI, but a significant negative relationship between DAS28-CRP and ESS. Several potentially confounding factors were identified.Conclusions.Poor control of RA is associated with a reduction in sleep quality and decreased daytime sleepiness, which is likely explained by pain-related alertness. Future prospective studies are needed to confirm potential relationships between sleep quality, sleepiness, and RA treatment.


2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1753.1-1753
Author(s):  
T. Kawano ◽  
T. Kashiwagura ◽  
M. Kobayashi ◽  
Y. Sugimura ◽  
H. Sato ◽  
...  

Background:Glucocorticoids (GC) have potent anti-inflammatory and immunosuppressive effects and are used to treat a variety of diseases. However, GC are associated with several adverse effects. Glucocorticoid-induced osteoporosis (GIO), a bone metabolism disorder, accounts for 25% of the side effects associated with GC, and long-term use of these agents leads to fragility fractures in 30 to 50% of patients [1]. GC are frequently used to treat rheumatoid arthritis (RA). No report on the current treatment status for glucocorticoid-induced osteoporosis (GIO) has been published following the publication of the new guidelines for the management and treatment of GIO issued by the Japanese Society for Bone Mineral Research provided in 2014 (Figure 1) [2].Objectives:The present study aimed to investigate the current treatment status of GIO patients in the Akita Orthopedic Group on Rheumatoid Arthritis (AORA) registry.Methods:This retrospective, multicenter study included 683 patients (138 men, 545 women) with fracture risk factor scores ≥3 based on the new guidelines who were in the AORA registry. We examined patient characteristics, differences in patient backgrounds between treated and non-treated groups.Results:There were no significant differences in mean GC dose between men and women (4.0 ± 2.3 mg/day vs 3.6 ± 1.8 mg/day, p = 0.08). The mean disease duration of RA in women was significantly longer than in men (180.2 ± 140.2 months vs 143.8 ± 129.6 months, Untreated GIO patients were significantly more likely to be men and younger. The univariate analysis showed that clinic visits, male sex, younger age, and longer disease duration were significant risk factors for lack of therapeutic intervention for GIO. Multivariate analysis showed that being treated in a clinic, male sex, and younger age were significant risk factors for lack of therapeutic intervention for GIO.Conclusion:Our results emphasize the importance of considering the prevention and treatment of GIO in all patients with RA, including younger and male patients, who have lower intervention rates.References:[1]Weinstein RS. Clinical practice. Glucocorticoid-induced bone disease. New Engl J Med. 2011; 365(1): 62-70.[2]Suzuki Y, Nawata H, Soen S, Fujiwara S, Nakayama H, Tanaka I, et al. Guidelines on the management and treatment of glucocorticoid-induced osteoporosis of the Japanese Society for Bone and Mineral Research: 2014 update. J Bone Miner Metab. 2014; 32(4): 337-350.Disclosure of Interests:None declared


2020 ◽  
Author(s):  
Maria Hügle ◽  
Ulrich A Walker ◽  
Axel Finckh ◽  
Ruediger Mueller ◽  
Gabriel Kalweit ◽  
...  

Background: Rheumatoid arthritis (RA) lacks reliable biomarkers that predict disease evolution on an individual basis, potentially leading to over- and undertreatment. Deep neural networks learn from former experiences on a large scale and can be used to predict future events as a potential tool for personalized clinical assistance. Objective: To investigate deep learning for the prediction of individual disease activity in RA. Methods: Demographic and disease characteristics from over 9500 patients and 65.000 visits from the Swiss Quality Management (SCQM) database were used to train and evaluate an adaptive recurrent neural network (AdaptiveNet). Patient and disease characteristics along with clinical and patient reported outcomes, laboratory values and medication were used as input features. DAS28-BSR was used to predict active disease and future numeric individual disease activity by classification and regression, respectively. Results: AdaptiveNet predicted active disease defined as DAS28-BSR>2.6 at the next visit with an overall accuracy of 75.6% and a sensitivity and specificity of 84.2% and 61.5%, respectively. Regression allowed forecasting individual DAS28-BSR values with a mean squared error of 0.9, corresponding to a variation between predicted and true values at next visit of 8%. Apart from DAS28-BSR, the most influential characteristics to predict disease activity were joint pain, disease duration, age and duration of treatment. Longer disease duration, age >50 years or antibody positivity marginally improved prediction performance. Conclusion: Deep neural networks have the capacity to predict individual numeric disease activity in RA. Low specificity remains challenging and might benefit from alternative input data or outcome targets.


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