Agnes Kocher successfully defended her dissertation on 21 February 2022
Agnes Kocher’s dissertation investigates current chronic illness management and eHealth and contributes to a better understanding of the MANagement Of Systemic Sclerosis – MANOSS.
The MANOSS study aims to develop a rare disease chronic care model for patients living with SSc in Switzerland and their families based on a contextual analysis. Agnes Kocher’s dissertation focuses the adaptation and validation of specific measurement tools for the SSc population, followed by two mixed-method studies to assess chronic care and eHealth implementation in the Swiss setting in consultation with all relevant stakeholder groups.
MANOSS was guided by the eHealth-enhanced chronic care model (eCCM). It includes the revision and validation of the German version of the 29-item Systemic Sclerosis Quality of Life Questionnaire (SScQoL). Moreover, it reports on the current state of SSc chronic illness care from the patients' perspective. Findings emphasize that key elements of chronic care are not yet systematically implemented in SSc care. Most notably, we identified gaps in shared decision-making, goal-setting and individual counselling—all of which are vital tools to support patient self-management skills. Furthermore, there is a lack of complex care coordination tailored to individual patient needs. The assessed eHealth literacy and needs regarding web-based support via internet-based information and communication technologies (ICTs) highlight patients' and HPs' shared need for training to support their uptake of eHealth resources. Key elements include guiding patients to timely/reliable information and using eHealth tools to optimize patient-provider communication.
Agnes Kocher’s dissertation contributes to the scientific and clinical knowledge by strengthening a comprehensive perspective on SSc care needs and key elements of chronic care that require systematic implementation in the current management of this rare disease. It identifies four target areas for system change, all of which are particularly important for the reorganization of care toward an eHealth-facilitated integrated SSc care model: shared and informed decision-making, complex care coordination, self-management and psychological support, and monitoring of integrated care programs.
The oral examination for the award of the doctoral degree was conducted virtually and onsite at the Kollegienhaus of the University of Basel, followed by a small reception for celebration.
With her doctorate, Agnes Kocher receives the dignity of a PhD (Dr. sc. med.) in Nursing Science from the University of Basel.
References
- Kocher A, Simon M, Dwyer AA, et al. Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study. RMD open 2021;7(3) doi:10.1136/rmdopen-2021-001783 [published Online First: 2021/09/04]
- Kocher A, Ndosi M, Denhaerynck K, et al. A rare disease patient-reported outcome measure: revision and validation of the German version of the Systemic Sclerosis Quality of Life Questionnaire (SScQoL) using the Rasch model. Orphanet J Rare Dis 2021;16(1):356. doi:10.1186/s13023-021-01944-9 [published Online First: 2021/08/11]
- Kocher A, Simon M, Dwyer AA, et al. Developing a rare disease chronic care model: Management of systemic sclerosis (MANOSS) study protocol. J Adv Nurs 2019;75(12):3774-91. doi: 10.1111/jan.14185 [published Online First: 2019/08/28]