Invalidation in Patients with Rheumatic Diseases: Clinical and Psychological Framework

2017 ◽  
Vol 44 (4) ◽  
pp. 512-518 ◽  
Author(s):  
Mariana Galante Santiago ◽  
Andréa Marques ◽  
Marianne Kool ◽  
Rinie Geenen ◽  
José António P. da Silva

Objective.The term “invalidation” refers to the patients’ perception that their medical condition is not recognized by the social environment. Invalidation can be a major issue in patients’ lives, adding a significant burden to symptoms and limitations while increasing the risk of physical and psychological disability. In this study in patients with rheumatic diseases, we investigated the relationship between invalidation and sociodemographic, clinical, psychological, and personality characteristics.Methods.This international cross-sectional study included 562 adults with rheumatoid arthritis (n = 124), spondyloarthritis (n = 85), systemic lupus erythematosus (n = 112), or fibromyalgia (FM; n = 241). Assessed were the family and health professionals subscales of the Illness Invalidation Inventory (3*I), happiness (Subjective Happiness Scale), personality (Ten-Item Personality Inventory), pain, and loneliness (numerical rating scales). Univariate and multivariate analyses were used to test different models.Results.Invalidation occurred in all rheumatic diseases, but patients with FM reported the most invalidation. Including all correlated variables in the multivariate model, pain remained as a determinant of invalidation by health professionals, but not by family. Regarding psychological variables, loneliness remained as a determinant of invalidation by family, but not by health professionals. FM and low levels of happiness, agreeableness, and conscientiousness were associated with invalidation while taking account of other variables.Conclusion.Invalidation occurs in all rheumatic diseases and patients with FM experience the most invalidation. Psychological factors (happiness, agreeableness, and conscientiousness), loneliness, and pain intensity are associated with invalidation, irrespective of the rheumatic disease and may deserve dedicated interventions.

2020 ◽  
Author(s):  
Cheick Oumar Bagayoko ◽  
Mahmoud Cissé ◽  
Joseph Aka ◽  
Adama Dicko ◽  
Abdrahamane Anne ◽  
...  

Abstract Background: Mali, like many Sub-Saharan African countries, is experiencing an acute crisis with respect to the shortage of qualified health professionals. This crisis is even more acute when it comes to specialized medical fields such as dermatology. To address this shortage, a tele-dermatology project has been launched in Mali since 2015 in order to provide access to specialized care to the most remote populations.Objective: The aim of our study is to assess the medico-economic benefits of the pilot phase of this project.Methods: We conducted a retrospective cross-sectional study of all requests for expert advice sent to dermatology experts through the "Bogou" tele-expertise platform.The sample consisted of 52 patients at eight remote sites and ten health professionals, including 4 specialists.The economic study was done using a parameter of cost analysis and the professional evaluation of healthcare providers. It compared consultation and transportation fees (on-site and off-site), and used a questionnaire assessing items on a 5-level Lickert scale and open-ended questions to evaluate the satisfaction of health professionals. Data analysis was performed by SPSS v25.Results: During the period, 374 requests for tele-expertise were made for the benefit of 52 patients. 89.3% of requests were answered by specialists, with an average response time of 46 hours 59 minutes and extremes from 7 minutes to 415 hours 4 minutes. Eczema was the most common medical condition diagnosed. 98% of patients had never completed a dermatological consultation because of a lack of means to travel to the only specialized center in the country. Consequently, they were all very satisfied or satisfied with the tele-expertise service. The 52 participating patients in project have realized a great financial benefit. Together they saved an average of 5,824,500 XOF (9429 euros).All the health professionals surveyed also expressed satisfaction with the application. They confirmed that the project has enabled them to strengthen their skills in the management of dermatological pathologies.Conclusion: Based on the results of our study, we can say that tele-dermatology allows access to specialized care and a reduction in the costs of care for patients in remote areas.


2013 ◽  
Vol 3 (2) ◽  
pp. 78-84 ◽  
Author(s):  
N. Taleschian Tabrizi ◽  
Z. Torabi ◽  
P. Bastani ◽  
M. Mokhtarkhani ◽  
N. Madani ◽  
...  

Urethral catheterization is a common procedure performed commonly before some elective surgeries, often without consideration of the pain and negative perception among women. Owing to patient complaints and the fact that catheterization is not always necessary; a descriptive cross-sectional study was carried out from January to March 2012 at Tabriz University of Medical Sciences hospital. One hundred healthy women who were catheterized before undergoing cesarean delivery were interviewed to assess the perception of pain and distress, determining the association between these two factors. This issue has rarely been investigated in previous studies. This study also aimed to evaluate the efficiencies of the Wong-Baker and 0–10 numerical rating scales. The authors results indicate that although the patients did not initially have a good understanding of the pain scales, when they were given additional explanation, a positive correlation between the two scales (p<0.01) was found. Their study further demonstrates that catheterization is a moderately painful (4.68 of 10) procedure, causing distress (4.67 of 10) and discomfort.


2012 ◽  
Vol 39 (10) ◽  
pp. 1934-1941 ◽  
Author(s):  
JASMINE R. GADDY ◽  
EVAN S. VISTA ◽  
JULIE M. ROBERTSON ◽  
AMY B. DEDEKE ◽  
VIRGINIA C. ROBERTS ◽  
...  

Objective.Rheumatic diseases cause significant morbidity within American Indian populations. Clinical disease presentations, as well as historically associated autoantibodies, are not always useful in making a rapid diagnosis or assessing prognosis. The purpose of our study was to identify autoantibody associations among Oklahoma tribal populations with rheumatic disease.Methods.Oklahoma tribal members (110 patients with rheumatic disease and 110 controls) were enrolled at tribal-based clinics. Patients with rheumatic disease (suspected or confirmed diagnosis) were assessed by a rheumatologist for clinical features, disease criteria, and activity measures. Blood samples were collected and tested for common rheumatic disease autoantibodies [antinuclear antibody (ANA), anti-cyclic citrullinated peptide antibodies (anti-CCP), rheumatoid factor (RF), anti-Ro, anti-La, anti-Sm, anti-nRNP, anti-ribosomal P, anti-dsDNA, and anticardiolipins].Results.In patients with suspected systemic rheumatic diseases, 72% satisfied American College of Rheumatology classification criteria: 40 (36%) had rheumatoid arthritis (RA), 16 (15%) systemic lupus erythematosus, 8 (7%) scleroderma, 8 (7%) osteoarthritis, 4 (4%) fibromyalgia, 2 (2%) seronegative spondyloarthropathy, 1 Sjögren’s syndrome, and 1 sarcoidosis. Compared to controls, RA patient sera were more likely to contain anti-CCP (55% vs 2%; p < 0.001) or RF IgM antibodies (57% vs 10%; p < 0.001); however, the difference was greater for anti-CCP. Anti-CCP positivity conferred higher disease activity scores (DAS28 5.6 vs 4.45; p = 0.021) while RF positivity did not (DAS28 5.36 vs 4.64; p = 0.15). Anticardiolipin antibodies (25% of rheumatic disease patients vs 10% of controls; p = 0.0022) and ANA (63% vs 21%; p < 0.0001) were more common in rheumatic disease patients.Conclusion.Anti-CCP may serve as a more specific RA biomarker in American Indian patients, while the clinical significance of increased frequency of anticardiolipin antibodies needs further evaluation.


2005 ◽  
Vol 15 (2) ◽  
pp. 115-122
Author(s):  
Gerald Ullrich ◽  
Heyka Jänsch ◽  
Sandra Schmidt ◽  
Martin Strüber ◽  
Jost Niedermeyer

Background Lung transplantation is extremely stressful for patients and accompanying support persons. Purpose To improve delivery of care, we designed a cross-sectional study about unmet needs and perceived helpfulness of staff. Methods The sample consisted of 30 adult lung transplant recipients with cystic fibrosis (and 22 relatives) and 20 age-matched recipients with other reasons for transplantation (and 17 relatives). Mean survival since transplantation was 5 years. Data were collected via questionnaires (numerical rating scales and fill-in-the-blank items). Results Most patients in both groups were satisfied with staff support (nurse, doctor) especially during the acute stage of illness. Relatives were less satisfied at all stages. Patients' satisfaction with doctors' support was higher after than before transplantation, but the opposite was true for relatives. Insufficient continuity of care was the most frequent critical comment from patients and support persons. Recommendations to improve delivery of care included providing access to psychosocial professionals and broadening the information provided before transplantation. Conclusions Regular screening of customer satisfaction should become routine. Particular attention should be paid to support persons.


2020 ◽  
Vol 66 (8) ◽  
pp. 1093-1099
Author(s):  
Wellington Douglas Rocha Rodrigues ◽  
Roseli Oselka Saccardo Sarni ◽  
Thais Tobaruela Ortiz Abad ◽  
Simone Guerra Lopes da Silva ◽  
Fabiola Isabel Suano de Souza ◽  
...  

SUMMARY AIM To describe the prevalence of dyslipidemia in children and adolescents with autoimmune rheumatic diseases (ARDs), particularly juvenile idiopathic arthritis (JIA), juvenile systemic lupus erythematosus (jSLE), and juvenile dermatomyositis (JDM). METHODS Retrospective cross-sectional study conducted in the pediatric rheumatology outpatient clinic. We evaluated 186 children and adolescents between the ages of 5 and 19 years. The medical records were reviewed for the following data: demographic and clinical features, disease activity, and lipid profile (triglycerides (TG), total cholesterol (TC), low density lipoprotein (LDL-C), high density lipoprotein (HDL-C) and very low density lipoprotein (VLDL-C)). In addition, non-HDL cholesterol was calculated as TC minus HDL-C. The cut-off points proposed by the American Academy of Pediatrics were used to classify the lipid profile. RESULTS Dyslipidemia was observed in 128 patients (68.8%), the most common being decreased HDL-C (74 patients, 39.8%). In the JIA group there was an association between the systemic subtype and altered LDL-C and NHDL-C, which demonstrated a more atherogenic profile in this subtype (p=0.027 and p=0.017, respectively). Among patients with jSLE, the cumulative corticosteroid dose was associated with an increase in LDL-C (p=0.013) and with a decrease in HDL-C (p=0.022). CONCLUSION Dyslipidemia is common in children and adolescents with ARDs, especially JIA, jSLE, and JDM, and the main alteration in the lipid profile of these patients was decreased HDL-C.


2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 909.1-909
Author(s):  
M. Viola ◽  
A. Benitez ◽  
C. Garbarino ◽  
G. Rodriguez ◽  
F. Benavidez ◽  
...  

Background:Infectious diseases are increased in patients with rheumatic disorders; vaccination improves morbidity and mortalityObjectives:The aim of this study was to describe the frequency of vaccination in patients with rheumatic disorders and to compare the results with those obtained in 2009 and 2013 in a similar population. We also identified factors leading to lack of vaccination and patients beliefs on vaccines.Methods:Multicentric cross sectional study in patients with autoinmune diseases from external rheumatology offices. Evaluation of vaccination status and patients´ knowledge about vaccines were studied. A comparative analysis was carried out with the series registered in 2009 and 2013 in a similar population.Results:179 patients (158 female, 88.3% and 21 male, 11.7%) were evaluated. Median age was 52 years. Main pathologies were: Rheumatoid Arthritis 65.9% (n:118), Systemic Lupus Erythematosus 11.7% (n:21), Systemic Sclerosis 3.9% (7), Sjogren Syndrome n = 3.4% (n:6), other diseases 15% (n: 27). Median disease duration: 8.87 years. Ninety three percent of patients (n:167) were taking inmunomodulators and 36.8% (n: 66) were using oral corticosteroids (20mg/day or less); 26,8% patients (n: 48) were receiving biological therapies. Vaccination frequency in the population was: Influenza 82% (147); 13-valent conjugate pneumococcal 69.3% (124), 23-valent pneumococcal 64.2% (115) and hepatitis B 62% (111). Comparative with 2009 and 2013 series there was an increase in the rate of vaccinated patients: influenza (82% vs. 39,1% and 74,2% respectively), antineumococcal (64% vs. 17% and 29%) and hepatitis B (62% vs. 6,7% and 26,7%).Reasons for non-vaccination were absence of medical indication (41% of patients for hepatitis B; 32% for 23-valent pneumococcal; 38% for 13-valent pneumococcal and 34% for influenza).139 patients (77, 7%) knew the benefits of vaccines, 164 (91, 6%) thought vaccines are useful; 134 (74,9%) reported that vaccines may decrease dying probability, 155 (86,5%) thought that vaccines are effective to prevent diseases and 149 patients (83,2%) believed that they prevent serious infections. 71 patients (39%) believed that vaccines can lead to serious consequences and 99 (55,3%) that they are more likely to acquire infections than the rest of the population.Conclusion:Frequency of vaccination has increased since 2009 but there is still misinformation regarding vaccines risks and benefits. Promotion and information is essential to improve adherence.References:[1]2019 update of EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases. Furer V, et al. Ann Rheum Dis 2020;79:39–52[2] Vaccines and Disease-Modifying Antirheumatic Drugs: Practical Implications for the Rheumatologist. Friedman MA et al. Rheum Dis Clin North Am. 2017 Feb; 43 (1):1-13.[3] Recommendations and barriers to vaccination in systemic lupus erythematosus. Garg M et al. Autoimmun Rev. 2018 Oct; 17 (10):990-1001.[4] Comparison of national clinical practice guidelines and recommendations on vaccination of adult patients with autoimmune rheumatic diseases. Papadopoulou D. et al. Rheumatol Int. 2014 Feb;34 (2):151-63.[5] Guías de recomendaciones de prevención de infecciones en pacientes que reciben modificadores de la respuesta biológica. Jordán R. Et al. Rev Arg Reumatol. 2014; 25 (2): 08-26.Disclosure of Interests:Malena Viola: None declared, Alejandro Benitez: None declared, Cecilia Garbarino: None declared, Gonzalo Rodriguez: None declared, Federico Benavidez: None declared, Claudia Peon: None declared, Eliana Soledad Blanco: None declared, Hernan Molina: None declared, Gimena Gómez: None declared, griselda redondo: None declared, Maria DeLaVega: None declared, Dario Mata: None declared, Augusto Riopedre: None declared, Osvaldo Messina Speakers bureau: Amgen; Americas Health Foundation; Pfizer


2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 493.2-493
Author(s):  
B. Fortuna ◽  
I. Peláez-Ballestas ◽  
F. García-Rodríguez ◽  
E. Faugier ◽  
S. Mendieta ◽  
...  

Background:Pediatric rheumatic diseases (PRD) have an important impact on different aspects of the patients’ and caregivers’ life, such as physical, emotional, economic, and social. Some studies have shown that parents of patients with PRD have important impact but there is a lack of information of this topic from Latinamerican countries.Objectives:The aim of this study is to describe and analyze the impact of juvenile idiopathic arthritis (JIA), juvenile systemic lupus erythematosus (JSLE), and juvenile dermatomyositis (JDM) on Mexican primary caregivers.Methods:This is a multicenter cross-sectional study conducted in third-level reference pediatric hospitals in Mexico from December 2018 to November 2019. We included primary caregivers of pediatric patients with JIA, JSLE, and JDM that were treated in participant centers.CAREGIVERS questionnaire, a validated multiassesment tool to measure the impact of PRD on caregivers, was applied to the participants. Collection of social, demographic, and clinical data was also performed and correlated with questionnaire results.Results:A total of 200 primary caregivers participates in the study (109 JIA, 28 JDM, and 63 JSLE), aged 38 (IQR 32 – 46), mostly women (84.5%), from 6 centers, representing 13/32 Mexican states (Figure). One third (78) had a remunerated job, 123 (61.5%) had a relationship, 77 (38.5%) reached high school or higher, and 131 (65.5%) spends more than one hour to get to the center. Patients cared aged 12 (IQR 9 – 16), mostly women (67%), 87 (43.5%) with active disease, 43 (21.5%) with any disability, 94% and 29% treated with DMARD and biologics, respectively.Feelings of worry and sadness predominant at diagnosis that decreased over time (42.5% and 28.5% vs 9.5% and 31.5%, respectively) and changed for peace (44%). Concerns about disabilities were more frequent on JIA group (34%), while pain and economic issues in JSLE (47% and 30%, respectively. Most of the caregivers feel anxiety about the future of their patients (148, 74%), regardless of the diagnosis. Participants reported that the way they spend the time, social life, and personal health worsened since diagnosis (49.5%, 32%, and 34.5%, respectively), especially in those with JSLE (60%, 39%, 46%). In 126 (63%) participants the economic situation worsened, 129 (64.5%) borrowed money (76% in JSLE, P = .03), 63 (31.5%) had problems to buy medications, and 48.5% have had problems at work. In 25 (12.5%), the family relationship was affected after diagnosis, however, the main supportive network reported were family members.Conclusion:This work described the main impacted areas in life of primary caregivers of patients with PRD, showing a perspective of the burden of the disease.References:[1]Cohen EM. Pediatr Rheumatol [Internet]. Pediatric Rheumatology; 2017;15(1):6.[2]Torres-Made.Pediatr Rheumatol18,3 (2020).Disclosure of Interests:None declared


2017 ◽  
pp. 100-106
Author(s):  
Thuan Huynh ◽  
Minh Tam Nguyen

Introduction: Child injury is a significant burden for community health care in Vietnam. Besides the fatal injuries, millions of children need hospital care for non-fatal injuries. Investigation on treatment cost and economic burden of the most common non-fatal injuries such as falls, burns, and traffic injuries is very necessary. Objectives: (1) Describe the patterns of falls, burns, and traffic injuries among children admitted with injuries to the Quang Nam Pediatric Hospital; (2) Analyze the treatment cost for falls, burns, and traffic injuries of these patients. Methods: A cross-sectional study on 424 pediatric patients under 16 year old admitted with falls, burns, and traffic injuries to the Quang Nam Pediatric Hospital from 01/6/2014 to 31/3/2015. Results: Most of participants admitted to the hospital for falls (66%), traffic injuries (22,4%). Mild injuries was dominated, burns and traffic injuries were more serious in almost cases and the average of PTS index was 9.4 points. Average total treatment cost was 1,259,200 VN dong, direct cost accounted for 68.4% of total treatment cost. Treatment costs of burns and traffic injuries were higher than that of falls. Key words: burden of disease, treatment cost, injury, children


2020 ◽  
Vol 8 (1) ◽  
Author(s):  
Jorge Ivan Gamez-Nava ◽  
Valeria Diaz-Rizo ◽  
Edsaul Emilio Perez-Guerrero ◽  
Jose Francisco Muñoz-Valle ◽  
Ana Miriam Saldaña-Cruz ◽  
...  

Abstract Background To date, the association of serum macrophage migration inhibitory factor (MIF) and serum adipokines with lupus nephritis is controversial. Objective To assess the utility of serum MIF, leptin, adiponectin and resistin levels as markers of proteinuria and renal dysfunction in lupus nephritis. Methods Cross-sectional study including 196 systemic lupus erythematosus (SLE) patients and 52 healthy controls (HCs). Disease activity was assessed by Systemic Lupus Erythematosus Disease Activity Index (SLEDAI). Renal SLE involvement was investigated by renal-SLEDAI. MIF, adiponectin, leptin and resistin levels were quantified by ELISA. We assessed the correlations of quantitative variables by Spearman correlation (rs). Multivariable linear regression adjusted the variables associated with the severity of proteinuria. Results SLE patients had higher MIF (p = 0.02) and adiponectin (p < 0.001) than HCs. Patients with renal SLE involvement (n = 43) had higher adiponectin (19.0 vs 13.3 μg/mL, p = 0.002) and resistin (10.7 vs 8.9 ng/mL, p = 0.01) than patients with non-renal SLE (n = 153). Proteinuria correlated with high adiponectin (rs = 0.19, p < 0.009) and resistin (rs = 0.26, p < 0.001). MIF (rs = 0.27, p = 0.04). Resistin correlated with increased creatinine (rs = 0.18, p = 0.02). High renal-SLEDAI correlated with adiponectin (rs = 0.21, p = 0.004). Multiple linear regression showed that elevated adiponectin (p = 0.02), younger age (p = 0.04) and low MIF (p = 0.02) were associated with the severity of proteinuria. Low MIF and high adiponectin levels interacted to explain the association with the severity of proteinuria (R2 = 0.41). Conclusions High adiponectin combined with low MIF concentrations int+eract to explain the severity of proteinuria in renal SLE. These findings highlight the relevance of adiponectin, resistin and MIF as markers of LN.


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