MANOSS
Projektname
Management of patients with Systemic Sclerosis: Development of an innovative chronic care model by a mixed methods study
Projektleitung
Dunja Nicca
Agnes Kocher
INS-Projektteam
Agnes Kocher
Dunja Nicca
Patrizia Künzler-Heule
Michael Simon
Externe Projektpartner
Department of Rheumatology, Immunology and Allergology, Inselspital, Bern University Hospital, CH (Peter M. Villiger) | Boston College, Connell School of Nursing, Chestnut Hill, Massachusetts, USA (Andrew Dwyer)
Ort der Datenerhebung
Ganze Schweiz (Rekrutierung über Spitäler und Patientenvereinigung)
Laufzeit
2018 bis 2021
Projektbeschreibung
Hintergrund
Patients living with the rare chronic disease of systemic sclerosis face major health disparities concerning access to specialized and coordinated healthcare. Furthermore, a lack of patient-centred self-management support exists. In order to overcome such problems, innovative models of care focusing on patients’ and their families’ needs are necessary. To improve feasibility a new model needs to be tailored to the respective healthcare context and integrate the perceptions of healthcare providers.
Zielsetzung
The overall aim of this study is to develop a clinically feasible new model of chronic illness management meeting the needs of patients living with systemic sclerosis and their families with the potential to improve health outcomes.
Design/Methode
A mixed methods approach will be used to develop the new care model for systemic sclerosis patients in a stepwise process of five consecutive phases. Phase 1 includes a mixed methods systematic review conducted to identify chronic illness management needs in rare inflammatory rheumatic diseases from the perspective of patients, families, and healthcare providers. Phase 2 incorporates a cross-sectional quantitative survey on the current chronic illness management and needs from the perspective of patients and healthcare providers. In phase 3 this survey will be supplemented with an explanatory qualitative study with the same stakeholder groups. In phase 4, a Delphi study including patients and professionals as end-users of the new model will be applied to model process- and patient- outcomes. Phase 5 includes the description of the complex intervention components central to the new chronic illness management model for systemic sclerosis patients.
Erwarteter Nutzen / Relevanz
The complexities of managing patients living with rare diseases places great demands on healthcare systems. The MANOSS study will develop a cultural sensitive and patient-centred innovative chronic illness management model for patients living with rare diseases such as systemic sclerosis. The participative and systematic approach has promising potential to improve the health outcomes of this neglected and vulnerable population.
Publikationen:
- Kocher A, Simon M, Dwyer AA, Villiger PM, Kunzler-Heule P, De Geest S, Berben L, Nicca D. Developing a rare disease chronic care model: Management of systemic sclerosis (MANOSS) study protocol. J Adv Nurs. 2019 Dec;75(12):3774-3791. doi: 10.1111/jan.14185. Epub 2019 Sep 13.
- Kocher A, Simon M, Dwyer AA, Blatter C, Bogdanovic J, Künzler-Heule P, Villiger PM, Dan D, Distler O, Walker UA, Nicca D. Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study. RMD Open. 2021;7(3). doi: 10.1136/rmdopen-2021-001783
- Kocher A, Ndosi M, Denhaerynck K, Simon M, Dwyer AA, Distler O, Hoeper K, Künzler-Heule P, Redmond AC , Villiger PM, Walker UA, Nicca D. A rare disease patient-reported outcome measure: revision and validation of the German version of the Systemic Sclerosis Quality of Life Questionnaire (SScQoL) using the Rasch model. Orphanet J Rare Dis. 2021;16(1):356. doi: 10.1186/s13023-021-01944-9