10.6084/M9.FIGSHARE.C.6272373
Ramona Stenzel
Ramona
Stenzel
Universitätsklinikum Erlangen
University of Erlangen-Nuremberg
Katharina Hadaschik
Katharina
Hadaschik
Medizinische Hochschule Brandenburg Theodor Fontane
Susann May
Susann
May
Medizinische Hochschule Brandenburg Theodor Fontane
Manuel Grahammer
Manuel
Grahammer
Medizinische Hochschule Brandenburg Theodor Fontane
Hannah Labinsky
Hannah
Labinsky
Universitätsklinikum Erlangen
University of Erlangen-Nuremberg
Martin Welcker
Martin
Welcker
Johannes Hornig
Johannes
Hornig
Gerlinde Bendzuck
Gerlinde
Bendzuck
Deutsche Rheuma-Liga
Corinna Elling-Audersch
Corinna
Elling-Audersch
Deutsche Rheuma-Liga
Ulrike Erstling
Ulrike
Erstling
Patricia Steffens Korbanka
Patricia Steffens
Korbanka
Nicolas Vuillerme
Nicolas
Vuillerme
Institut Universitaire de France
French National Centre for Scientific Research
Grenoble Alpes University
Institut Néel
Martin Heinze
Martin
Heinze
Medizinische Hochschule Brandenburg Theodor Fontane
Gerhard Krönke
Gerhard
Krönke
Universitätsklinikum Erlangen
University of Erlangen-Nuremberg
Georg Schett
Georg
Schett
Universitätsklinikum Erlangen
University of Erlangen-Nuremberg
Ann-Christin Pecher
Ann-Christin
Pecher
Universitätsklinikum Tübingen
Martin Krusche
Martin
Krusche
University Medical Center Hamburg-Eppendorf
Charité - University Medicine Berlin
Johanna Mucke
Johanna
Mucke
Heinrich Heine University Düsseldorf
Johannes Knitza
Johannes
Knitza
Universitätsklinikum Erlangen
Grenoble Alpes University
Institut Néel
University of Erlangen-Nuremberg
Felix Muehlensiepen
Felix
Muehlensiepen
Grenoble Alpes University
Medizinische Hochschule Brandenburg Theodor Fontane
Digitally-supported patient-centered asynchronous outpatient follow-up in rheumatoid arthritis - an explorative qualitative study
Abstract Objective A steadily increasing demand and decreasing number of rheumatologists push current rheumatology care to its limits. Long travel times and poor accessibility of rheumatologists present particular challenges for patients. Need-adapted, digitally supported, patient-centered and flexible models of care could contribute to maintaining high-quality patient care. This qualitative study was embedded in a randomized controlled trial (TELERA) investigating a new model of care consisting of the use of a medical app for ePRO (electronic patient-reported outcomes), a self-administered CRP (C-reactive protein) test, and joint self-examination in rheumatoid arthritis (RA) patients. The qualitative study aimed to explore experiences of RA patients and rheumatology staff regarding (1) current care and (2) the new care model. Methods The study included qualitative interviews with RA patients (n = 15), a focus group with patient representatives (n = 1), rheumatology nurses (n = 2), ambulatory rheumatologists (n = 2) and hospital-based rheumatologists (n = 3). Data was analyzed by qualitative content analysis. Results Participants described current follow-up care as burdensome. Patients in remission have to travel long distances. Despite pre-scheduled visits physicians lack questionnaire results and laboratory results to make informed shared decisions during face-to-face visits. Patients reported that using all study components (medical app for ePRO, self-performed CRP test and joint self-examination) was easy and helped them to better assess their disease condition. Parts of the validated questionnaire used in the trial (routine assessment of patient index data 3; RAPID3) seemed outdated or not clear enough for many patients. Patients wanted to be automatically contacted in case of abnormalities or at least have an app feature to request a call-back or chat. Financial and psychological barriers were identified among rheumatologists preventing them to stop automatically scheduling new appointments for patients in remission. Rheumatology nurses pointed to the potential lack of personal contact, which may limit the holistic care of RA-patients. Conclusion The new care model enables more patient autonomy, allowing patients more control and flexibility at the same time. All components were well accepted and easy to carry out for patients. To ensure success, the model needs to be more responsive and allow seamless integration of education material. Trial registration The study was prospectively registered on 2021/04/09 at the German Registry for Clinical Trials (DRKS00024928).
Medicine
Immunology
69999 Biological Sciences not elsewhere classified
Science Policy
111714 Mental Health
figshare
2022
2022-10-29
2022-10-29
Collection
10.1186/s12913-022-08619-6
CC BY 4.0