EULAR Impact of Rheumatic and Musculoskeletal Diseases Survey (ImpactSurvey)

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.

Study Overview

• Status: Recruiting
• Conditions: Musculoskeletal Diseases; Rheumatologic Disease
• Intervention / Treatment: Other: Survey

• Study Type: Observational
• Enrollment (Estimated): 1000

Contacts and Locations

• Study Contact: Name: Coralie Signorell, PhD; Phone Number: 0445751564; Email: coralie.signorell@eular.org
• Study Contact Backup: Name: Carina Haupt; Phone Number: +41 44 716 30 46; Email: carina.haupt@eular.org

Study Locations

• Switzerland
  • Canton of Zurich
    • Kilchberg, Canton of Zurich, Switzerland, 8802
      • Recruiting
      • EULAR
      • Contact: Coralie Signorell, PhD; Phone Number: +41 44 575 15 64; Email: research@eular.org

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: No

• Sampling Method: Non-Probability Sample

Study Population

- adults with at least 1 RMD

Description

Inclusion Criteria:

• 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

Exclusion Criteria:

• none

Study Plan

How is the study designed?

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
Survey; Usual survey	Other: Survey; online survey for participants

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
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

Outcome Measure	Measure Description	Time Frame
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
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
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

Collaborators and Investigators

• Sponsor: European Alliance of Associations in Rheumatology

Publications and helpful links

Helpful Links

• EULAR Impact of RMDs Survey

Study record dates

Study Major Dates

• Study Start (Actual): June 12, 2025
• Primary Completion (Estimated): June 12, 2028
• Study Completion (Estimated): June 12, 2029

Study Registration Dates

• First Submitted: June 4, 2024
• First Submitted That Met QC Criteria: June 10, 2024
• First Posted (Actual): June 14, 2024

Study Record Updates

• Last Update Posted (Actual): November 21, 2025
• Last Update Submitted That Met QC Criteria: November 18, 2025
• Last Verified: November 1, 2025

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Connective Tissue Diseases; Skin and Connective Tissue Diseases; Musculoskeletal Diseases; Collagen Diseases; Health Care Quality, Access, and Evaluation; Investigative Techniques; Epidemiologic Methods; Data Collection; Health Care Evaluation Mechanisms; Quality of Health Care; Public Health; Environment and Public Health; Surveys and Questionnaires
• Other Study ID Numbers: EPI001

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No