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建立一种罕见疾病慢性护理模式:系统性硬化症管理研究方案
Author(s) -
Kocher Agnes,
Simon Michael,
Dwyer Andrew A.,
Villiger Peter M.,
KünzlerHeule Patrizia,
Geest Sabina,
Berben Lut,
Nicca Dunja
Publication year - 2019
Publication title -
journal of advanced nursing
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.948
H-Index - 155
eISSN - 1365-2648
pISSN - 0309-2402
DOI - 10.1111/jan.14185
Subject(s) - delphi method , medicine , protocol (science) , stakeholder , health care , delphi , ehealth , focus group , population , research design , nursing , family medicine , alternative medicine , public relations , pathology , statistics , business , mathematics , environmental health , marketing , political science , computer science , economics , economic growth , operating system , social science , sociology
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.