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.

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.

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.

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.