Institute of Nursing Science (INS), Department Public Health (DPH), Faculty of Medicine, University of Basel, Basel, Switzerland.
Department of Rheumatology, Immunology and Allergology, Inselspital Bern University Hospital, Bern, Switzerland.
J Adv Nurs. 2019 Dec;75(12):3774-3791. doi: 10.1111/jan.14185. Epub 2019 Sep 13.
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.
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.
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.
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.
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.
本研究旨在制定一个基于情境分析和利益相关者参与的系统性硬化症（SSc）患者慢性病管理模式。
本研究采用实施科学方法，首先进行解释性序贯混合方法的情境分析，然后广泛征求利益相关者意见以制定模型，并进行德尔菲研究以达成共识。
首先，对患者和医疗保健专业人员（HPs）进行横断面调查，以确定慢性疾病管理和技术准备的现状。其次，对患者、家属和 HPs 进行定性访谈，以深入了解定量调查中确定的护理需求。第三，与患者、HPs 和其他专家共同创建护理模式。电子健康增强的慢性护理模型将作为指导框架。新模型和相应的结果参数将通过德尔菲研究方法进行细化，以就适合 SSc 患者的可测试护理模型达成共识。该方案于 2018 年 9 月获得瑞士伦理委员会的研究伦理委员会批准。
在这种背景下，SSc 患者的模型具有情境适宜性，因此 MANOSS 研究的参与式方法至关重要。随后计划进行可行性测试和实施，以评估该模型在解决该患者群体面临的健康差异方面的价值。
患有这种罕见病的患者无法获得协调的、专业的护理和合格的 HPs 的自我管理支持。需要重新设计当前的护理模式，同时考虑技术机会，以满足患者和家属的需求。
