EULAR Impact of Rheumatic and Musculoskeletal Diseases Survey
NCT Number: NCT06461000
Acronym: ImpactSurvey
Status: RECRUITING
Study Type: OBSERVATIONAL
Conditions: Rheumatologic Disease|Musculoskeletal Diseases
Interventions: OTHER: Survey
Sponsor: European Alliance of Associations in Rheumatology
Sex: ALL
Age: ADULT, OLDER_ADULT
Enrollment: 1000
Study Design: Observational Model: |Time Perspective: p
Start Date: 2024-06-12
Completion Date: 2029-06-12
Locations: EULAR, Kilchberg, Zurich, 8802, Switzerland

Summary:
The EULAR Impact of RMDs Survey collects first-hand information about the impact of rheumatic and musculoskeletal diseases (RMDs) among patients across and beyond Europe. Through periodic questionnaires, patients will provide information about their healthcare situation, and how the disease affects their social and occupational lives. This data will be an important resource for researchers, healthcare professionals, and patients alike, providing valuable insights into the burden of disease and helping improve the overall care for people living with these conditions.

Primary Outcome Measures: General population description - country, country of residence, every 6 months for up to 5 years|General population description - diagnosis, diagnosis (name of the disease), every 6 months for up to 5 years|General population description, year of birth, every 6 months for up to 5 years
Secondary Outcome Measures: Diagnosis history - physician treating the RMD, Primary physician specialty treating the patient, every 6 months for up to 5 years|Diagnosis history - outpatient care history, number of medical appointments for the past 6 months, every 6 months for up to 5 years|Diagnosis history - timeline, waiting time for medical appointments and time spent in medical appointments, every 6 months for up to 5 years|Diagnosis history - Inpatient care, number of days of hospitalization during the past 6 months., every 6 months for up to 5 years|Non-pharmacological and pharmacological treatments., Names of medications taken by the patients (from a list), every 6 months for up to 5 years|Other chronic diseases, diagnosis of chronic diseases other than RMD and medication taken for these conditions., every 6 months for up to 5 years|Disease burden - impact of disease, Rheumatic Arthritis Impact of Disease (RAID) version 7 questionnaire. The RAID is calculated based on 7 Numerical rating scales (NRS) questions. Each NRS is assessed as a number between 0 and 10. The 7 NRS correspond to pain, function, fatigue, sleep, emotional well-being, physical well-being, and coping/self-efficacy. The range of the final RAID value is 0-10 where higher figures indicate worse status., every 6 months for up to 5 years|Disease burden - health assessment, Health assessment questionnaire version 2 (HAQ2). The HAQ comprises of 20 questions covering 20 daily activities. These are divided in eight domains: dressing and grooming, rising, eating, walking, hygiene, reaching, gripping, and other activities. Each question is scored according to a four-point scale (0-3), and the highest scores from each domain are summed and divided by eight, to derive a total HAQ score, which ranges from 0 to 3 (3 = highest level of disability)., every 6 months for up to 5 years|Disease burden - quality of life, patient health questionnaire (PHQ-8). The PHQ-8 is a self-reported measure of depressive symptoms composed of 8 Likert type items with a response scale ranging from 0 (Not at all) to 3 (Nearly every day), that refer to the presence of that symptom during the previous 2 weeks.Each item corresponds to the first 8 symptoms of the 4th edition of the DSM-IV diagnostic criteria for major depressive disorder. The PHQ-8 final score is obtained by adding the score for each of the items, ranging from 0 to 24 (higher scores corresponding to higher levels of depression)., every 6 months for up to 5 years|Consequences on work and life (WPAI questionnaire), work productivity and activity impairment questionnaire (WPAI), including total number of sick leave days due to RMD in the past 6 months. Final score is calculated in % higher scores on the WPAI indicate worse outcomes, every 6 months for up to 5 years|Other barriers due to RMD, impact on family, leisure, social and work activities (quality of life questionnaire), every 6 months for up to 5 years|Health care, support from professionals (general questionnaire), satisfaction with care (scale, 1= low, 5 = high satisfaction), every 6 months for up to 5 years|Demographics - persons living with patient, number of persons living in household, every 6 months for up to 5 years|Demographics - professional status, professional status, every 6 months for up to 5 years