Abstract
The thesis consists of 3 studies which make up a key part of the scientific development of the national Danish Patient Reported Outcome (PRO) diabetes questionnaire and the digital PRO diabetes tool, DiaProfil, for use in routine diabetes care.
The thesis focuses on the use of systematic patient involvement in the development of the PRO diabetes tool.
The first study concluded that self-reported health and psychological well-being, diabetes related quality of life and distress, medical treatment experience, symptom distress, confidence in self-management and in access to person-centered diabetes care and support are important constructs to measure in order to evaluate outcomes of diabetes care which reflect the priorities and perspectives of those living with the condition.
The second study showed that the Danish PRO diabetes tool was feasible and acceptable to use in routine ambulatory diabetes visits and improved the care experience for people with diabetes and their health care professionals.
The third study involved the design of a national multi-center study to evaluate the benefits of the tool in 7 diabetes care centers involving more than 550 people with diabetes and 30 health professionals. Interim results from this study confirm that the PRO diabetes tool facilitates active participation of people with diabetes and improves care by focusing on what matters most to the individual.
The thesis describes the development and value of new methods and tools for systematic patient involvement in the design of PRO tools for clinical care.
The national Danish PRO diabetes tool, co-developed with people with diabetes and health professionals is now approved for use in Denmark and implementation is ongoing.
The thesis focuses on the use of systematic patient involvement in the development of the PRO diabetes tool.
The first study concluded that self-reported health and psychological well-being, diabetes related quality of life and distress, medical treatment experience, symptom distress, confidence in self-management and in access to person-centered diabetes care and support are important constructs to measure in order to evaluate outcomes of diabetes care which reflect the priorities and perspectives of those living with the condition.
The second study showed that the Danish PRO diabetes tool was feasible and acceptable to use in routine ambulatory diabetes visits and improved the care experience for people with diabetes and their health care professionals.
The third study involved the design of a national multi-center study to evaluate the benefits of the tool in 7 diabetes care centers involving more than 550 people with diabetes and 30 health professionals. Interim results from this study confirm that the PRO diabetes tool facilitates active participation of people with diabetes and improves care by focusing on what matters most to the individual.
The thesis describes the development and value of new methods and tools for systematic patient involvement in the design of PRO tools for clinical care.
The national Danish PRO diabetes tool, co-developed with people with diabetes and health professionals is now approved for use in Denmark and implementation is ongoing.
| Original language | English |
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| Electronic ISBNs | 978-87-7210-934-3 |
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| Publication status | Published - 2021 |
Bibliographical note
PhD supervisor:Clinical Professor Niels Ejskjær, Aalborg University Hospital / Aalborg University
Keywords
- Diabetes
- Patient Reported Outcomes
- Person-centered care
- Value-based care
- Patient involvement
- Participatory research