Session Time: 1:45pm-3:15pm
Location: Les Muses Terrace, Level 3
Objective: The aim of this study is the development of a digital concept for a longitudinal assessment of quality of life during the various stages of Parkinson’s disease progression.
Background: Parkinsonian syndromes are heterogeneous chronic neurodegenerative disorders associated with motor and non-motor symptoms. The symptoms have major psychosocial effects on the quality of life of patients and a high burden for caregivers. So far, several questionnaires have been developed to assess quality of life in parkinsonism, but none of these include the positive sides of well-being, such as personal and social resilience factors.
Method: The CHAPO model (Challenges and Potentials) has been established in a vast study to assess the quality of life of the elderly, including environmental and individual factors, life chances and life results from a subjective as well as an objective point of view . It is currently being adapted to include the specific aspects that affect quality of life in parkinsonian syndromes. We intend to establish a digital monitoring system to assess Parkinson’s patients in a standardized manner over the entire duration of their disease. The data are recorded by using digitized questionnaires as well as cognitive and motor tests in a digital application, which the patient completes comfortably at home. In addition, we conduct physical examinations every six months over the course of the disease with a minimum of 500 patients, which will be taking place in our clinic or in the domestic environment depending on the specific physical mobility of the patients.
Results: We expect this study to demonstrate that existing disease-related quality of life models do not sufficiently address the relevant factors of the subjective well-being of Parkinson’s patients. In addition, we assume that the modified, disease-specific CHAPO model records the relevant aspects of quality of life more accurately, and that a longitudinal observation is possible with the digitized survey.
Conclusion: We expect to detect factors which correlate to the subjective well-being of Parkinson’s patients, and want to use these findings to improve the health care structures of patients with Parkinson’s disease and related disorders.
References:  Wagner M, Rietz C, Kaspar R, Janhsen A, Geithner L, Neise M, Kinne-Wall C, Woopen C, Zank S: Quality of life of the very old : Survey on quality of life and subjective well-being of the very old in North Rhine-Westphalia (NRW80+). Z Gerontol Geriatr. 2018 Feb:193-199.
To cite this abstract in AMA style:F. Thieken, A. Greuel, L. Timmermann, K. Sohrabi, C. Woopen, B. Schmitz-Luhn, A. Janhsen, C. Eggers. Longitudinal digital observation of the holistic quality of the life of patients with Parkinson’s disease [abstract]. Mov Disord. 2019; 34 (suppl 2). https://www.mdsabstracts.org/abstract/longitudinal-digital-observation-of-the-holistic-quality-of-the-life-of-patients-with-parkinsons-disease/. Accessed November 29, 2023.
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MDS Abstracts - https://www.mdsabstracts.org/abstract/longitudinal-digital-observation-of-the-holistic-quality-of-the-life-of-patients-with-parkinsons-disease/