Development of a Multidimensional Assessment Tool for the Evaluation of Holistic Quality of Life in Parkinson’s Disease

Article type: Research Article

Authors: Thieken, Franziska^{a; *} | Timmermann, Lars^a | Sohrabi, Keywan^b | Woopen, Christiane^{c; d} | Schmitz-Luhn, Björn^c | Janhsen, Anna^f | Eggers, Carsten^{a; e; *}

Affiliations: [a] Department of Neurology, University Hospital of Marburg, Marburg, Germany | [b] Faculty of Health Sciences, University of Applied Sciences – THM, Giessen, Germany | [c] Ceres - Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health, University of Cologne, Cologne, Germany | [d] Medical Faculty, Research Unit Ethics, University of Cologne, University of Cologne, Cologne, Germany | [e] CMBB – Center for Mind, Brain and Behavior of the Universities Giessen and Marburg, Marburg, Germany | [f] a.r.t.e.s. Graduate School for the Humanities. University of Cologne, Cologne, Germany

Correspondence: [*] Correspondence to: Franziska Thieken and Carsten Eggers, Department of Neurology, University Hospital of Marburg, Bal-dingerstraße, 35043 Marburg, Germany. Tel.: +49 6421 58 64855 (F.T.); +49 6421 58 65299 (C.E.); E-mail: [email protected]. (F.T.) E-mail: [email protected]. (C.E.)

Abstract: Background: Parkinsonian syndromes are heterogeneous chronic neurodegenerative disorders associated with both motor and non-motor symptoms. The symptoms have major psychosocial effects on the quality of life of patients and can be a 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 on well-being such as personal and social resilience factors. Objective: The aim of this study is to develop a digital framework for a longitudinal assessment of quality of life during the progression of Parkinson’s disease. Methods: The CHAPO model (Challenges and Potentials) has been established in a vast study by Wagner et al. to assess the quality of life of older people. This model includes environmental and individual factors, life chances, and life results, such as individual life evaluation, from a subjective as well as an objective point of view. Therefore, it has been adapted in several development steps to include the specific aspects that affect quality of life in Parkinsonian syndromes. The development process included 6 steps: definition, refinement, operationalization, piloting/debriefing, adjustment, and integration. Results: The development of the CHAPO-PD model has been completed and it represents the first main result of this study. Conclusion: By taking a holistic understanding of quality of life into account, we expect to detect previously unrecognized factors, which correlate to the subjective well-being of Parkinson’s disease patients, and aim to use these findings to improve the health care structures for patients with Parkinson’s disease and related disorders.

Keywords: Parkinson’s disease, health-related quality of life, holistic, assessment tool, prognostication, personalized care

DOI: 10.3233/JPD-202391

Journal: Journal of Parkinson's Disease, vol. 12, no. 1, pp. 361-370, 2022