Digitally-supported patient-centered asynchronous outpatient follow-up in rheumatoid arthritis - an explorative qualitative study.

Empowerment PIFU Qualitative research Remote care Rheumatology Self-sampling Telemedicine User experience

Journal

BMC health services research
ISSN: 1472-6963
Titre abrégé: BMC Health Serv Res
Pays: England
ID NLM: 101088677

Informations de publication

Date de publication:
28 Oct 2022
Historique:
received: 05 07 2022
accepted: 30 09 2022
entrez: 29 10 2022
pubmed: 30 10 2022
medline: 2 11 2022
Statut: epublish

Résumé

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. 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. 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 Parts of the validated questionnaire used in the trial (routine assessment of patient index data 3; RAPID3) seemed outdated or not clear enough for many patients.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. 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. The study was prospectively registered on 2021/04/09 at the German Registry for Clinical Trials (DRKS00024928).

Identifiants

pubmed: 36307779
doi: 10.1186/s12913-022-08619-6
pii: 10.1186/s12913-022-08619-6
pmc: PMC9614742
doi:

Types de publication

Randomized Controlled Trial Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

1297

Subventions

Organisme : Deutsche Forschungsgemeinschaft
ID : MHB publication fund
Organisme : Deutsche Forschungsgemeinschaft
ID : MHB publication fund
Organisme : Deutsche Forschungsgemeinschaft
ID : MHB publication fund
Organisme : Deutsche Forschungsgemeinschaft
ID : FOR 2886 PANDORA-B01/A03/Z01
Organisme : Deutsche Forschungsgemeinschaft
ID : FOR 2886 PANDORA-B01/A03/Z01
Organisme : Deutsche Forschungsgemeinschaft
ID : FOR 2886 PANDORA-B01/A03/Z01
Organisme : Deutsche Forschungsgemeinschaft
ID : MHB publication fund
Organisme : Sanofi-Aventis Deutschland
ID : Sanofi GeneRAtion program
Organisme : Sanofi-Aventis Deutschland
ID : Sanofi GeneRAtion program
Organisme : Sanofi-Aventis Deutschland
ID : Sanofi GeneRAtion program
Organisme : Sanofi-Aventis Deutschland
ID : Sanofi GeneRAtion program

Informations de copyright

© 2022. The Author(s).

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Auteurs

Ramona Stenzel (R)

Department of Internal Medicine 3, Rheumatology and Immunology Friedrich Alexander University Erlangen-Nürnberg and Universitätsklinikum Erlangen, Erlangen, Germany.
Deutsches Zentrum für Immuntherapie, Friedrich-Alexander University Erlangen-Nürnberg and Universitätsklinikum Erlangen, Erlangen, Germany.

Katharina Hadaschik (K)

Center for Health Services Research, Faculty of Health Sciences Brandenburg, Brandenburg Medical School Theodor Fontane, Seebad 82/83, Rüdersdorf bei Berlin, Germany.

Susann May (S)

Center for Health Services Research, Faculty of Health Sciences Brandenburg, Brandenburg Medical School Theodor Fontane, Seebad 82/83, Rüdersdorf bei Berlin, Germany.

Manuel Grahammer (M)

Center for Health Services Research, Faculty of Health Sciences Brandenburg, Brandenburg Medical School Theodor Fontane, Seebad 82/83, Rüdersdorf bei Berlin, Germany.
Abaton GmbH, Berlin, Germany.

Hannah Labinsky (H)

Department of Internal Medicine 3, Rheumatology and Immunology Friedrich Alexander University Erlangen-Nürnberg and Universitätsklinikum Erlangen, Erlangen, Germany.
Deutsches Zentrum für Immuntherapie, Friedrich-Alexander University Erlangen-Nürnberg and Universitätsklinikum Erlangen, Erlangen, Germany.

Martin Welcker (M)

MVZ für Rheumatologie Dr. Martin Welcker GmbH, Planegg, Germany.

Johannes Hornig (J)

Rheumapraxis an der Hase, Osnabrück, Germany.

Gerlinde Bendzuck (G)

Deutsche Rheuma-Liga Bundesverband e.V, Bonn, Germany.

Corinna Elling-Audersch (C)

Deutsche Rheuma-Liga Bundesverband e.V, Bonn, Germany.

Ulrike Erstling (U)

Fachverband Rheumatologische Fachassistenz e. V, Bergisch Gladbach, Germany.

Patricia Steffens Korbanka (PS)

Rheumapraxis an der Hase, Osnabrück, Germany.

Nicolas Vuillerme (N)

AGEIS, Université Grenoble Alpes, Grenoble, France.
Institut Universitaire de France, Paris, France.
LabCom Telecom4Health, Orange Labs & Univ. Grenoble Alpes, CNRS, Grenoble INP-UGA, Grenoble, Inria, France.

Martin Heinze (M)

Center for Health Services Research, Faculty of Health Sciences Brandenburg, Brandenburg Medical School Theodor Fontane, Seebad 82/83, Rüdersdorf bei Berlin, Germany.

Gerhard Krönke (G)

Department of Internal Medicine 3, Rheumatology and Immunology Friedrich Alexander University Erlangen-Nürnberg and Universitätsklinikum Erlangen, Erlangen, Germany.
Deutsches Zentrum für Immuntherapie, Friedrich-Alexander University Erlangen-Nürnberg and Universitätsklinikum Erlangen, Erlangen, Germany.

Georg Schett (G)

Department of Internal Medicine 3, Rheumatology and Immunology Friedrich Alexander University Erlangen-Nürnberg and Universitätsklinikum Erlangen, Erlangen, Germany.
Deutsches Zentrum für Immuntherapie, Friedrich-Alexander University Erlangen-Nürnberg and Universitätsklinikum Erlangen, Erlangen, Germany.

Ann-Christin Pecher (AC)

Centre for Interdisciplinary Clinical Immunology, Rheumatology and Autoinflammatory Diseases, University Hospital Tuebingen, Tübingen, Germany.

Martin Krusche (M)

Division of Rheumatology and Systemic Inflammatory Diseases, University Hospital Hamburg-Eppendorf (UKE), Hamburg, Germany.

Johanna Mucke (J)

Policlinic and Hiller Research Unit for Rheumatology, Medical Faculty, University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany.

Johannes Knitza (J)

Department of Internal Medicine 3, Rheumatology and Immunology Friedrich Alexander University Erlangen-Nürnberg and Universitätsklinikum Erlangen, Erlangen, Germany.
Deutsches Zentrum für Immuntherapie, Friedrich-Alexander University Erlangen-Nürnberg and Universitätsklinikum Erlangen, Erlangen, Germany.
AGEIS, Université Grenoble Alpes, Grenoble, France.

Felix Muehlensiepen (F)

Center for Health Services Research, Faculty of Health Sciences Brandenburg, Brandenburg Medical School Theodor Fontane, Seebad 82/83, Rüdersdorf bei Berlin, Germany. felix.muehlensiepen@mhb-fontane.de.
AGEIS, Université Grenoble Alpes, Grenoble, France. felix.muehlensiepen@mhb-fontane.de.

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