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

Agnes Kocher, Michael Simon, Andrew A Dwyer, Peter M Villiger, Patrizia Künzler-Heule, Sabina De Geest, Lut Berben & Dunja Nicca

abstract

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 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 will be conducted to identify current practice patterns of chronic illness management and technology readiness. Second, qualitative interviews with patients, family members and healthcare professionals 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, healthcare professionals 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 systemic sclerosis. The protocol has received ethical 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 systemic sclerosis 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 healthcare professionals. Reengineering of current care, with consideration for technological opportunities, is warranted to meet patients' and families' needs. This article is protected by copyright. All rights reserved.
   
citation Kocher A, Simon M, Dwyer A A, Villiger P M, Künzler-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;.
   
type journal paper/review (English)
date of publishing 26-08-2019
journal title J Adv Nurs
ISSN electronic 1365-2648
PubMed 31452216
DOI 10.1111/jan.14185