Developing a rare disease chronic care model: Management of systemic sclerosis (MANOSS) study protocol

Kocher, Agnes and Simon, Michael and Dwyer, Andrew A. and Villiger, Peter M. and Kuenzler-Heule, Patrizia and De Geest, Sabina and Berben, Lut and Nicca, Dunja. (2019) Developing a rare disease chronic care model: Management of systemic sclerosis (MANOSS) study protocol. Journal of advanced nursing, 75 (12). pp. 3774-3791.

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Official URL: https://edoc.unibas.ch/72257/

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Aim The aim of the management of systemic sclerosis (MANOSS) study described in this protocol is to develop a chronic care model, based on a contextual analysis and stakeholder involvement, for patients living with the rare disease systemic sclerosis (SSc) in Switzerland. Design Applying an implementation science approach, this study starts with an explanatory sequential mixed method study for contextual analysis, followed by broad stakeholder involvement for model development and a Delphi study to reach consensus. Methods First, a quantitative cross-sectional survey with patients and healthcare professionals (HPs) will be conducted to identify current practice patterns of chronic illness management and technology readiness. Second, qualitative interviews with patients, family members and HPs will be performed to gain a deeper understanding of care needs identified in the quantitative survey. Third, a model of care will be co-created with input from patients, HPs and other experts. The eHealth enhanced Chronic Care Model will serve as a guiding framework. The new model and corresponding outcome parameters will be refined using a Delphi-study approach to reach consensus on a testable model of care for persons living with SSc. The protocol has received research ethics committee approval in September 2018 by the Swiss Ethics Committee. Discussion The MANOSS study's participatory approach is essential for contextual fit of the model for patients with SSc in this setting. Subsequent feasibility testing and implementation are planned to evaluate the model's value in relation to health disparities faced by this patient population. Impact Patients living with this rare disease lack access to coordinated, specialized care and self-management support from qualified HPs. Reengineering of current care, with consideration for technological opportunities, is warranted to meet patients' and families' needs.
Faculties and Departments:03 Faculty of Medicine > Departement Public Health > Institut für Pflegewissenschaft
UniBasel Contributors:Kocher, Agnes and Nicca, Dunja and Simon, Michael and De Geest, Sabina M. and Künzler-Heule, Patrizia
Item Type:Article, refereed
Article Subtype:Research Article
Note:Publication type according to Uni Basel Research Database: Journal article
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Last Modified:10 Jul 2020 12:23
Deposited On:10 Jul 2020 12:23

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