Post-acute infection syndromes (PAIS), defined as persistent symptoms chronologically related to a COVID-19 infection (Post-COVID syndrome) or other infections (e.g., Epstein-Barr virus or respiratory infections). This includes post-infectious Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and autonomic dysfunctions (e.g., postural tachycardia syndrome). Additionally, the participation of patients and stakeholders in health services research is examined.
Conditions
Interventions
Group 1: Within the CONFIDENCE project, a participatory approach is pursued for the development of the intervention and evaluation components as well as for the project implementation. Patients and st
Sponsors
Universitätsklinikum Heidelberg
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Inclusion criteria
Inclusion criteria: 1) Membership in one of the following groups within the CONFIDENCE project: - Members of the patient advisory board or representatives of patient organizations. - Members of the stakeholder advisory board or representatives of stakeholder organizations. - Members of the CONFIDENCE project team. 2) Provision of written or electronic informed consent for participation in the accompanying study.
Exclusion criteria
Exclusion criteria: 1) Lack of informed consent for study participation. 2) Persons who are no longer actively involved in the advisory boards or the CONFIDENCE project team at the time of the survey.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Evaluation of the participation process in the CONFIDENCE project regarding the development of intervention and evaluation components as well as project implementation. The aim is to describe, analyze, and writtenly evaluate the participatory process of patients, stakeholders, and the project team. WHAT: Perception and quality of participation and its influence on intervention development and project implementation. WHEN: At three assessment time points (T1: after completion of the intervention development phase; T2: after approx. 6–9 months of the intervention phase; T3: at the end of the project). HOW: 1) Anonymous online survey using the PPEET (Public and Patient Engagement Evaluation Tool), specifically the "Participant Questionnaire Module B – continuous and long-term engagement initiatives". 2) Retrospective qualitative document analysis (using evaluation software such as MAXQDA®) of anonymized protocols from the advisory board and team meetings of the participation process. 3) Short sociodemographic questionnaire (once). | — |
Countries
Germany
Contacts
Public ContactElena Biehler
Universitätsklinikum Heidelberg
Outcome results
None listed