scholarly journals Pain, functional disability, and their Association in Juvenile Fibromyalgia Compared to other pediatric rheumatic diseases

2019 ◽  
Vol 17 (1) ◽  
Author(s):  
Mark Connelly ◽  
◽  
Jennifer E. Weiss
Keyword(s):  
Rheumatic Disease ◽  
Rheumatic Diseases ◽  
Pediatric Rheumatology ◽  
Functional Disability ◽  
Juvenile Dermatomyositis ◽  
Functional Limitations ◽  
Well Being ◽  
Effect Sizes ◽  
Juvenile Fibromyalgia ◽  
Disease Effect

Abstract Background Severe pain and impairments in functioning are commonly reported for youth with juvenile fibromyalgia. The prevalence and impact of pain in other diseases commonly managed in pediatric rheumatology comparatively have been rarely systematically studied. The objective of the current study was to determine the extent to which high levels of pain and functional limitations, and the strength of their association, are unique to youth with juvenile primary fibromyalgia syndrome/JPFS) relative to other pediatric rheumatic diseases. Methods Using data from 7753 patients enrolled in the multinational Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry, we compared the levels and association of pain and functional limitations between youth with JPFS and those with other rheumatic diseases. Results Pain levels were rated highest among youth with JPFS (M = 6.4/10, SD = 2.4) and lowest for juvenile dermatomyositis (M = 1.7/10, SD = 2.2), with pain significantly higher in the JPFS group than any other pediatric rheumatic disease (effect sizes = .22 to 1.05). Ratings on measures of functioning and well-being also were significantly worse for patients with JPFS than patients with any other rheumatic disease (effect sizes = .62 to 1.06). The magnitude of association between pain intensity and functional disability, however, generally was higher in other rheumatic diseases than in JPFS. Pain was most strongly associated with functional limitations in juvenile dermatomyositis, juvenile idiopathic arthritis, and mixed connective tissue disease. Conclusions JPFS is unique among conditions seen in pediatric rheumatology with regard to ratings of pain and disability. However, pain appears to be comparably or more highly associated with level of functional impairment in other pediatric rheumatic diseases. Pain in childhood rheumatic disease thus would benefit from increased prioritization for research and treatment.

scholarly journals Evaluation of Children Referred to Pediatric Rheumatology Outpatient Clinic with Suspicious Laboratory Test Results

2021 ◽  
Author(s):  
Şerife Gül Karadağ ◽  
Hafize Emine Sönmez ◽  
Ayşe Tanatar ◽  
Nuray Aktay Ayaz
Keyword(s):  
Rheumatic Disease ◽  
Laboratory Test ◽  
Rheumatic Diseases ◽  
Outpatient Clinic ◽  
Pediatric Rheumatology ◽  
Connective Tissue Diseases ◽  
Test Results ◽  
Laboratory Findings ◽  
Laboratory Test Results ◽  
Rheumatology Outpatient

INTRODUCTION: We aimed to evaluate the patients who were referred to the pediatric rheumatology outpatient clinic with suspicious laboratory test results. METHODS: All patients who were referred to our outpatient clinic with suspicious laboratory test results between March 2018 and March 2019 were evaluated. RESULTS: A total of 273 new patients who were referred with suspicious laboratory test results were evaluated. Among them; 48% were girls and 52% were boys and they were referred mostly from the clinics of child health and diseases (70.3%). The most frequent indications for referrals were anti-streptolysin O (ASO) elevation (n=86) and anti-nuclear antibody (ANA) positivity (n=47), while 66% of the patients were not diagnosed with rheumatic disease. None of the patients without complaints but with suspicious laboratory test results (n=49) were diagnosed with rheumatic disease. While 64.6% of those diagnosed with rheumatic diseases had periodic fever syndrome, 17.1% had juvenile idiopathic arthritis, 8.5% had postinfectious arthritis, and the remaining 9.8% had connective tissue diseases, vasculitis and uveitis. DISCUSSION AND CONCLUSION: Laboratory findings alone in childhood rheumatic diseases are not significant in patients without complaints. The diagnosis of rheumatic diseases should be made with the patient’s complaints, history, family history and physical examination findings and supported by laboratory findings. With the rational use of laboratory tests; unnecessary health expenses can be prevented and referrals of patients with nonrheumatic diseases to pediatric rheumatology outpatient clinics can be prevented.

scholarly journals Challenges in Diagnosing COVID-19 Related Disease in Pediatric Patients With Rheumatic Disease

2021 ◽  
Author(s):  
Seher Şener ◽  
Özge Başaran ◽  
Sibel Laçinel Gürlevik ◽  
Ümmüşen Kaya Akça ◽  
Erdal Atalay ◽  
...  
Keyword(s):  
Rheumatic Disease ◽  
Rheumatic Diseases ◽  
Pediatric Patients ◽  
Juvenile Dermatomyositis ◽  
Systemic Juvenile Idiopathic Arthritis ◽  
Severe Condition ◽  
Delay In Diagnosis ◽  
Systemic Jia ◽  
Mediterranean Fever ◽  
Inflammatory Syndrome

Abstract Objectives Multisystem inflammatory syndrome in children (MIS-C) is a rare but severe condition associated with coronavirus disease 2019 (COVID-19). Here we aimed to raise awareness for the symptoms of MIS-C in patients with rheumatic diseases, emphasizing the challenges of the differential features. Methods We retrospectively evaluated the demographic and clinical characteristics, laboratory and imaging findings, treatments, and outcomes of six MIS-C patients with previous rheumatic disease. Results Three of the patients had familial Mediterranean fever (FMF), one had juvenile dermatomyositis (JDM), one had systemic juvenile idiopathic arthritis (JIA), and another patient had oligoarticular JIA. All FMF patients presented with fever and abdominal pain, two also had chest pain. The patient with systemic JIA presented with fever, rash, and myalgia. All patients had elevated inflammatory markers and high d-dimer levels. Chest imaging of two FMF patients showed infiltrations compatible with pneumonia. One FMF patient had mildly decreased systolic functions with a shortening fraction of 48% in his echocardiography. Intravenous immunoglobulin and methylprednisolone were administered to all patients. Anakinra was given to four patients. Conclusions Clinical and laboratory signs of MIS-C may overlap with the findings of various rheumatic diseases, and this may cause a delay in diagnosis.

Obstetrics and pregnancy

2013 ◽  
Author(s):  
Monika Østensen ◽  
Radboud Dolhain ◽  
Guillermo Ruiz-Irastorza
Keyword(s):  
Rheumatic Disease ◽  
Pregnancy Outcome ◽  
Rheumatic Diseases ◽  
Functional Disability ◽  
Fetal Outcome ◽  
Disease Symptoms ◽  
Spontaneous Improvement ◽  
Maternal Disease

Rheumatic diseases occur preferentially in women, often during their childbearing years. Most women with rheumatic disease wish to have children, even when functional disability is present. Better therapy and better prognosis for many of the rheumatic diseases has resulted in more patients considering pregnancy. The interaction of pregnancy and the rheumatic diseases is varied, ranging from spontaneous improvement to aggravation, sometimes severe, of disease symptoms. Likewise, rheumatic diseases differ with regard to the occurrence of complications during pregnancy, and pregnancy outcome. This chapter describes fertility, the course of maternal disease during pregnancy, and fetal outcome.

Obstetrics and pregnancy

2013 ◽  
pp. 121-126
Author(s):  
Monika Østensen ◽  
Radboud Dolhain ◽  
Guillermo Ruiz-Irastorza
Keyword(s):  
Rheumatic Disease ◽  
Pregnancy Outcome ◽  
Rheumatic Diseases ◽  
Functional Disability ◽  
Fetal Outcome ◽  
Disease Symptoms ◽  
Spontaneous Improvement ◽  
Maternal Disease

Rheumatic diseases occur mostly in women, often during their childbearing years. Most women with rheumatic disease wish to have children, even when functional disability is present. Better therapy and better prognosis for many of the rheumatic diseases has resulted in more patients considering pregnancy. The interaction of pregnancy and rheumatic diseases is varied, ranging from spontaneous improvement to aggravation, sometimes severe, of disease symptoms. Likewise, rheumatic diseases differ with regard to the occurrence of complications during pregnancy, and pregnancy outcome. This chapter describes fertility, the course of maternal disease during pregnancy, and fetal outcome.

scholarly journals OP0264-HPR “I LITERALLY CONVINCED MYSELF I WAS GOING TO CATCH IT AND DIE”: LIVED EXPERIENCES OF THE COVID-19 PANDEMIC BY PEOPLE WITH RHEUMATIC DISEASES FROM FOUR EUROPEAN COUNTRIES

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 161.1-161
Author(s):  
R. J. O. Ferreira ◽  
C. Costa ◽  
A. Marques ◽  
A. J. Barata Cavaleiro ◽  
S. Makri ◽  
...  
Keyword(s):  
Health Care ◽  
Rheumatic Disease ◽  
Focus Groups ◽  
Rheumatic Diseases ◽  
Lived Experiences ◽  
Well Being ◽  
Family Resilience ◽  
European Countries ◽  
Social Ecological ◽  
The Impact

Background:The COVID-19 pandemic has resulted in unforeseen challenges for humanity, taking a significant toll, especially the immune-suppressed individuals. In this regard, the health and general well-being of people with rheumatic diseases, the great majority users of immunosuppressives, have been at stake.Objectives:To explore the impact of the COVID-19 pandemic on people with rheumatic diseases on immunosuppression during the first wave, concerning a) (self-)management of their disease; b) interaction with the health care team; c) emotional well-being and d) overall health.Methods:A qualitative study was conducted following a phenomenological approach. Adults (>18 years) with a rheumatic disease from four European countries (Cyprus, England, Greece, Portugal). Patients were recruited through patient’s associations and social media and were invited to participate in semi-structured, audio-recorded interview or focus groups, between July - August 2020. Following a pilot study the information provided was transcribed verbatim, anonymized and translated into English where necessary. An inductive approach was adopted to carry out a thematic framework analysis with the assistance of ATLAS.ti to identify key themes and subthemes. Data validation strategies were employed, and Ethical approval and informed consent were obtained.Results:Participants were 24 patients (21 women, age range 33 to 74 years) divided by 7 focus-groups and 1 individual interview. Most frequent diagnoses were rheumatoid arthritis (n=7), lupus (n=4), juvenile idiopathic arthritis (n=3).Three key themes with 3-7 subthemes were identified within the analytical framework, centred around the impact of the Covid-19 on patients’ lives (Figure 1): i) individual person (e.g. fear for myself and family, social isolation and lack of personal freedom, more time with family) ii) health settings (e.g. (un)clear information about risks of contamination, fear or risk of shortages of medication, remote consultations), and iii) work and community (e.g. persistent stress due to mass media exposure, lack of awareness by others about patients’ rheumatic disease and its disclosure, hope and suspicion about new vaccine development: “I hear that they will ask vulnerable groups to have the vaccine first (...) Why is that? we will be again the innocent victims”). Findings were similar across countries, except for spirituality (i.e. the pandemic as “the hand of God”), a coping subtheme particular to Portugal. These main themes resonated well with the social ecological model and Walsh’s Family Resilience Process [1,2].Conclusion:When experiencing a significant life-event people require some time to process the different lived experiences. This study provides insights on how patients from four countries coped with the new challenges. Such insights are invaluable for health care providers and policy makers, in guiding more meaningful support tailored to individual needs, especially at times of crisis. The study highlights the impact of COVID-19 on the lives of people with rheumatic disease. A follow-up study is currently underway to examine the effect of subsequent waves of the pandemic.References:[1]Golden SD, Earp JA. Social ecological approaches to individuals and their contexts: twenty years of health education & behavior health promotion interventions. Health Educ Behav. 2012;39(3):364-72. doi: 10.1177/1090198111418634.[2]Walsh F. Family resilience: a framework for clinical practice. Fam Process. 2003;42(1):1-18. doi: 10.1111/j.1545-5300.2003.00001.Acknowledgements:We thank the participants of this study.Disclosure of Interests:None declared

scholarly journals P075 Evaluation of the impact of the COVID-19 pandemic on patients with rheumatic diseases in the UK: results from the REUMAVID study

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Marco Garrido-Cumbrera ◽  
Victoria Navarro-Compán ◽  
Dale Webb ◽  
Clare Jacklin ◽  
Shantel Irwin ◽  
...  
Keyword(s):  
Mental Health ◽  
At Risk ◽  
Rheumatic Disease ◽  
Rheumatic Diseases ◽  
Well Being ◽  
Research Support ◽  
Patient Organisations ◽  
The Uk ◽  
The Impact ◽  
Second Wave

Abstract Background/Aims  This study presents the impact of the COVID-19 pandemic on health care, access to treatment, daily activities, well-being and mental health and the role of patient organisations from the perspective of the patient with rheumatic disease in the UK. Methods  REUMAVID is an international collaboration led by HTR of the University of Seville, together with a multidisciplinary team of rheumatologists and patient organisations from 7 European countries (in the UK: NASS, NRAS and Arthritis Action). The study consists of an online survey, including the following instruments: Self-Perceived Health, WHO-5 Well-Being Index and Hospital Anxiety and Depression Scale (HADS). Data are collected in two phases: the first wave of the pandemic (from May 14th to July 18th 2020) and the second wave (to be conducted in winter 2020). Results  558 patients with rheumatic diseases participated in REUMAVID UK. The most frequently reported diagnoses were axial spondyloarthritis (44.6%), rheumatoid arthritis (44.1%) and osteoarthritis (25.6%). The mean age was 58.5±13.4 years, 78.7% women, 70.8% married or in a relationship and 54.1% having university studies. 45.8% perceived their health status being "fair to very poor" with 38.4% reporting a worsening during lockdown. 48.8% had their rheumatology appointment cancelled. Of these, 46.9% were offered either online or telephone follow-up, while the remaining 50.6% were not given any alternative. 15.6% changed their medication, of which 66.3% were indicated to do so by the medical team and 21.7% did so out of concern with COVID-19 with the major fear being that their treatment would lead to serious illness if they contracted SARS-CoV-2, while the greater hope was to be able to continue with their treatment as usual. 10.3% smoked more than before, 59.4% quit smoking and 36.3% drank more alcohol than before. 20.7% were unable to physically exercise at home and 39.2% reported weight gain. According to the WHO-5 scale, 52.5% declared poor well-being (≤50). A total of 43.6% were at risk of anxiety and 33.6% at risk of depression according to the HADS scale. During the lockdown, 54.3% were able to continue their psychological therapy. The main source of COVID-19 information was the patient organisations (reaching 63.6% of members), compared to 45.3% of non-members who did not receive any information. Conclusion  The REUMAVID study has allowed us to measure and quantify the experience of British patients with rheumatic disease during an unprecedented public health crisis. A reduction in healthcare access, concern about treatment, changes in daily life habits and worsening of well-being and mental health were reported during the first wave. Patient organisations were the main source of COVID-19-related information. Further data will be gathered during the second wave. Disclosure  M. Garrido-Cumbrera: None. V. Navarro-Compán: Honoraria; Abbvie, BMS, Lilly, MSD, Novartis, Pfizer, Roche, UCB. D. Webb: Grants/research support; AbbVie, Biogen, Janssen, Lilly, Novartis, UCB. C. Jacklin: Grants/research support; Abbvie, Amgen, Biogen, Eli, Lilly, Gilead, Janssen, Pfizer, Roche, Sanofi, UCB. S. Irwin: Other; Coronavirus Community Support Fund. L. Christen: Other; Novartis employee. J. Correa-Fernández: None. S. Sanz-Gómez: None. H. Marzo-Ortega: Honoraria; Abbvie, Celgene, Eli-Lilly, Janssen, Novartis, Pfizer, Takeda, UCB. Grants/research support; Janssen, Novartis.

scholarly journals OP0147 RHEUMATIC? - A DIGITAL DIAGNOSTIC DECISION SUPPORT TOOL FOR INDIVIDUALS SUSPECTING RHEUMATIC DISEASES: A MULTICENTER VALIDATION STUDY

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 87.1-88
Author(s):  
R. Knevel ◽  
J. Knitza ◽  
A. Hensvold ◽  
A. Circiumaru ◽  
T. Bruce ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Support ◽  
Rheumatic Disease ◽  
Rheumatic Diseases ◽  
Receiver Operating Curve ◽  
Musculoskeletal Complaints ◽  
Immune Mediated ◽  
Diagnostic Decision ◽  
Ocean Observations ◽  
Receiver Operating

Background:Digital diagnostic decision support tools promise to accelerate diagnosis and increase health care efficiency in rheumatology. Rheumatic? is an online tool developed by specialists in rheumatology and general medicine together with patients and patient organizations for individuals suspecting a rheumatic disease.1,2 The tool can be used by people suspicious for rheumatic diseases resulting in individual advise on eventually seeking further health care.Objectives:We tested Rheumatic? for its ability to differentiate symptoms from immune-mediated diseases from other rheumatic and musculoskeletal complaints and disorders in patients visiting rheumatology clinics.Methods:The performance of Rheumatic? was tested using data from 175 patients from three university rheumatology centers covering two different settings:A.Risk-RA phase setting. Here, we tested whether Rheumatic? could predict the development of arthritis in 50 at risk-individuals with musculoskeletal complaints and anti-citrullinated protein antibody positivity from the KI (Karolinska Institutet)B.Early arthritis setting. Here, we tested whether Rheumatic? could predict the development of an immune-mediated rheumatic disease in i) EUMC (Erlangen) n=52 patients and ii) LUMC (Leiden) n=73 patients.In each setting, we examined the discriminative power of the total score with the Wilcoxon rank test and the area-under-the-receiver-operating-characteristic curve (AUC-ROC).Results:In setting A, the total test score clearly differentiated between individuals developing arthritis or not, median 245 versus 163, P < 0.0001, AUC-ROC = 75.3 (Figure 1). Also within patients with arthritis the Rheumatic? total score was significantly higher in patients developing an immune-mediated arthritic disease versus those who did not: median score EUMC 191 versus 107, P < 0.0001, AUC-ROC = 79.0, and LUMC 262 versus 212, P < 0.0001, AUC-ROC = 53.6.Figure 1.(Area under) the receiver operating curve for the total Rheumatic? scoreConclusion:Rheumatic? is a web-based patient-centered multilingual diagnostic tool capable of differentiating immune-mediated rheumatic conditions from other musculoskeletal problems. A following subject of research is how the tool performs in a population-wide setting.References:[1]Knitza J. et al. Mobile Health in Rheumatology: A Patient Survey Study Exploring Usage, Preferences, Barriers and eHealth Literacy. JMIR mHealth and uHealth. 2020.[2]https://rheumatic.elsa.science/en/Acknowledgements:This project has received funding from EIT Health. EIT Health is supported by the European Institute of Innovation and Technology (EIT), a body of the European Union that receives support from the European Union’s Horizon 2020 Research and Innovation program.This project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 777357, RTCure.Disclosure of Interests:Rachel Knevel: None declared, Johannes Knitza: None declared, Aase Hensvold: None declared, Alexandra Circiumaru: None declared, Tor Bruce Employee of: Ocean Observations, Sebastian Evans Employee of: Elsa Science, Tjardo Maarseveen: None declared, Marc Maurits: None declared, Liesbeth Beaart- van de Voorde: None declared, David Simon: None declared, Arnd Kleyer: None declared, Martina Johannesson: None declared, Georg Schett: None declared, Thomas Huizinga: None declared, Sofia Svanteson Employee of: Elsa Science, Alexandra Lindfors Employee of: Ocean Observations, Lars Klareskog: None declared, Anca Catrina: None declared

scholarly journals OP0082-PARE THE EFFECT COVID-19 HAS ON THE MENTAL HEALTH OF PEOPLE LIVING WITH RHEUMATIC DISEASES. FROM DATA TO INTERVENTIONS.

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 44-45
Author(s):  
S. Mingolla ◽  
A. Celano ◽  
M. Santopietro
Keyword(s):  
Mental Health ◽  
Rheumatic Diseases ◽  
Rare Diseases ◽  
Psychological Impact ◽  
Well Being ◽  
Total Sample ◽  
Support Service ◽  
Health Condition ◽  
National Association ◽  
The Impact

Background:Covid-19 has had an important impact on the mental health conditions of over 5 million Italians suffering from one of the over 150 rheumatic diseases. In order to understand the psychological impact of the Covid-19 emergency and the restrictions imposed to counter it, the Italian National Association of People with Rheumatic and Rare Diseases – APMARR APS launched the research “Living with a rheumatic pathology”.Objectives:Gather data directly from Italian patients about the impact of the COVID-19 and consequent restrictions on their mental health and feelings; evaluate the most effective intervention to be implemented to face the pandemic by Patients organization.Methods:A qualitative-quantitative survey was carried out through a questionnaire administered throughout the national territory to a sample of N = 1,001 people. The people invited to complete the questionnaire were women (55,9%) and men (44,1%), aged 18-85 years (age 18-41=26,7%; age 42-65=64%; age >65=9,3%) with at least one rheumatic pathology. The questionnaire was made up of 39 questions, of which 29 were closed and 10 were open. For the administration of the questionnaires, the CAWI (Computer Aided Web Interview) methodology of on-line survey was used. The 1,001 interviews were carried out from 7 to 14 August 2020.Results:More than 4 out of 10 people (total sample 44.2%; male 60%, female 35,7%; age 18-41=39,1%; age 42-65=45,9%; age >65 = 50%) declared that the emergency period has somehow caused a worsening of their health condition. People declared that the deterioration of their health is due to the emergency period for the following reasons: 1) Psychological: such as stress and anxiety: “Too much stress and anxiety made the symptoms worse.”; “The stress of the quarantine affected my problem”; “Insomnia. Nervousness. General ailments. Depression. Strong stress” 2) Inability to perform physiotherapy and motor activities due to the lockdown 3) Postponement of examinations, visits and checks 4) remote working, in some cases described as harmful for people’s mental and physical health: “Due to Covid19 I had to do remote working and I worked even 12 hours a day including holidays to the detriment of my family life”.Furthermore, from January 31, 2020 a significant increase emerged in communication problems with rheumatology specialist compared to the period before the emergency due to Covid-19. The sharp increase may be due to the situation of severe psychological stress to which also the doctors were subjected in the emergency phase: people could not find the comfort of being empathically listened to.Conclusion:The research shows that the most frequent symptoms among people with rheumatic diseases were depression and high levels of anxiety due to strong emotional stress. Psychological malaise caused direct effects in worsening the symptoms of rheumatic disease as well as other related effects, for example, insomnia. The forced isolation due to the lockdown has made people lack the social support that is fundamental for the psychological well-being especially for those suffering from some chronic pathology. Starting from the data collected, APMARR promptly activated a completely free psychological support service with 6 professional psychologists, two of them specialized in emergency psychology. The service is accessible online and is still going on for all who are not able to overcome the anxiety and fear related to the pandemic and its evolution. Thousands of accesses to the service have been measured to date.References:S Mingolla1, A Celano1, M Santopietro2[1]NATIONAL ASSOCIATION OF PEOPLE WITH RHEUMATIC AND RARE DISEASES - APMARR APS[2]WeResearch. Ricerche di marketingDisclosure of Interests:None declared

scholarly journals AB1336-HPR NON-PHARMACOLOGIC TOPICS RELEVANT FOR CLINICAL RESEARCH IN RHEUMATIC DISEASES: THE PATIENT PERSPECTIVE

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1956.2-1956
Author(s):  
F. Ingegnoli ◽  
T. Schioppo ◽  
T. Ubiali ◽  
S. Ostuzzi ◽  
M. Buoli ◽  
...  
Keyword(s):  
Physical Activity ◽  
Clinical Research ◽  
Environmental Pollution ◽  
Rheumatic Diseases ◽  
Social Life ◽  
Eating Habits ◽  
Well Being ◽  
Psychological Well Being ◽  
Work Activity ◽  
Patients Perspective

Background:The research approach on Rheumatic diseases (RDs) is challenging and patient involvement as partners in medical research is an emerging force to obtain relevant information and to add unique skills, values and experiences to research. Despite growing interest in non-pharmacologic aspects of clinical research in RDs, the patients’ perspective is currently poorly explored.Objectives:To identify and rank the priorities for clinical research according to patients’ perspective.Methods:A structured face-to-face meeting between physicians and a patient representative was convened to list the non-pharmacologic topics relevant to RD patients. A cross-sectional no-profit on-line anonymous survey was devised to evaluate opinions of RD patients. They were asked to rate the following topics: food/nutrition, air pollution, smoking, work activity, social participation, physical activity, emotional well-being/stress, alternative medicine, and patient-physician relationship. Moreover, patients were asked to explain for which reason a topic was considered important (disease prevention, halting disease progression, symptoms control and disease cure). The survey was disseminated by ALOMAR (Lombard Association for Rheumatic Diseases) between June and October 2019.Results:200 rheumatic patients completed the survey: 130 inflammatory arthritis, 50 connective tissue diseases/vasculitis, and 20 among osteoarthritis, gout, condrocalcinosis, polymyalgia and primary fibromyalgia. Respondents were 178 female with median age of 50 years and median disease duration of 7 years. Among the nine topics identified, the one most rated by patients was the doctor-patient relationship; 188 (94%) of respondents considered this topic very or extremely important (see table below). In descending order, patients rated very or extremely important: psychological well-being/stress 185 (92.5%), physical activity 155 (77.5%), nutrition, eating habits and alcohol 150 (75%), alternative therapies 144 (72%), work activity 144 (72%), environmental pollution 134 (67%), social life 121 (60.5%) and cigarette smoke 119 (59.5%). The topics considered relevant was perceived to be able to influence disease symptoms. Regarding RD prevention, environmental pollution and cigarette smoking were considered the most important topics, while fewer patients believed that research on other topics could help to stop disease progression or to achieve disease healing.RankingTopicNot or quite importantVery or extremely important1Doctor-patient relationship, n (%)12 (6.0)188 (94.0)2Psychological well-being/stress, n (%)15 (7.5)185 (92.5)3Physical activity, n (%)45 (22.5)155 (77.5)4Nutrition/eating habits/alcohol, n (%)50 (25.0)150 (75.0)5Alternative therapies, n (%)56 (28.0)144 (72.0)6Work activity, n (%)56 (28.0)144 (72.0)7Environmental pollution, n (%)66 (33.0)134 (67.0)8Social life, n (%)79 (39.5)121 (60.5)9Cigarette smoke, n (%)81 (40.5)119 (59.5)Conclusion:This survey highlights the relevance of several unmet needs. The holistic approach, in terms of medical consultation and psychological well-being, is considered the most important component able to influence disease perception. By capturing patient opinions on non-pharmacological topics for clinical research, this survey indicates that the active patient involvement is essential to design successful translational studies and improve clinical outcomes.Acknowledgments:We thank the Lombard Association of Rheumatic Diseases (ALOMAR) for its contribution to plan and disseminate the survey and the group that sustain systemic sclerosis (GILS).Disclosure of Interests:Francesca Ingegnoli: None declared, Tommaso Schioppo: None declared, Tania Ubiali: None declared, Silvia Ostuzzi: None declared, Massimiliano Buoli: None declared, Valentina Bollati: None declared, Roberto Caporali Consultant of: AbbVie; Gilead Sciences, Inc.; Lilly; Merck Sharp & Dohme; Celgene; Bristol-Myers Squibb; Pfizer; UCB, Speakers bureau: Abbvie; Bristol-Myers Squibb; Celgene; Lilly; Gilead Sciences, Inc; MSD; Pfizer; Roche; UCB

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