EULAR Impact of Rheumatic and Musculoskeletal Diseases Survey
- Conditions
- Musculoskeletal DiseasesRheumatologic Disease
- Interventions
- Other: Survey
- Registration Number
- NCT06461000
- Lead Sponsor
- European Alliance of Associations in Rheumatology
- Brief 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.
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- RECRUITING
- Sex
- All
- Target Recruitment
- 1000
- 18-year-old at time of baseline survey
- Living in a EULAR country at time of baseline survey
- Diagnosed with at least one RMD
- Valid personal e-mail address
- Being able to use an internet website
- none
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Arm && Interventions
Group Intervention Description Survey Survey Usual survey
- Primary Outcome Measures
Name Time Method General population description - diagnosis every 6 months for up to 5 years diagnosis (name of the disease)
General population description every 6 months for up to 5 years year of birth
General population description - country every 6 months for up to 5 years country of residence
- Secondary Outcome Measures
Name Time Method Diagnosis history - Inpatient care every 6 months for up to 5 years number of days of hospitalization during the past 6 months.
Diagnosis history - outpatient care history every 6 months for up to 5 years number of medical appointments for the past 6 months
Disease burden - impact of disease every 6 months for up to 5 years 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.
Diagnosis history - physician treating the RMD every 6 months for up to 5 years Primary physician specialty treating the patient
Diagnosis history - timeline every 6 months for up to 5 years waiting time for medical appointments and time spent in medical appointments
Non-pharmacological and pharmacological treatments. every 6 months for up to 5 years Names of medications taken by the patients (from a list)
Consequences on work and life (WPAI questionnaire) every 6 months for up to 5 years 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
Other barriers due to RMD every 6 months for up to 5 years impact on family, leisure, social and work activities (quality of life questionnaire)
Demographics - persons living with patient every 6 months for up to 5 years number of persons living in household
Demographics - professional status every 6 months for up to 5 years professional status
Other chronic diseases every 6 months for up to 5 years diagnosis of chronic diseases other than RMD and medication taken for these conditions.
Disease burden - health assessment every 6 months for up to 5 years 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).
Disease burden - quality of life every 6 months for up to 5 years 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).
Health care every 6 months for up to 5 years support from professionals (general questionnaire), satisfaction with care (scale, 1= low, 5 = high satisfaction)
Trial Locations
- Locations (1)
EULAR
🇨🇭Kilchberg, Zurich, Switzerland