Universität zu Köln

Thieken, Franziska, Timmermann, Lars ORCID: 0000-0002-5301-3580, Sohrabi, Keywan ORCID: 0000-0003-2247-4912, Woopen, Christiane, Schmitz-Luhn, Bjoern, Janhsen, Anna and Eggers, Carsten (2022). Development of a Multidimensional Assessment Tool for the Evaluation of Holistic Quality of Life in Parkinson's Disease. J. Parkinsons Dis., 12 (1). S. 361 - 371. AMSTERDAM: IOS PRESS. ISSN 1877-718X

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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.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Thieken, Franziska UNSPECIFIED UNSPECIFIED UNSPECIFIED Timmermann, Lars UNSPECIFIED orcid.org/0000-0002-5301-3580 UNSPECIFIED Sohrabi, Keywan UNSPECIFIED orcid.org/0000-0003-2247-4912 UNSPECIFIED Woopen, Christiane UNSPECIFIED UNSPECIFIED UNSPECIFIED Schmitz-Luhn, Bjoern UNSPECIFIED UNSPECIFIED UNSPECIFIED Janhsen, Anna UNSPECIFIED UNSPECIFIED UNSPECIFIED Eggers, Carsten UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-671907
DOI:	10.3233/JPD-202391
Journal or Publication Title:	J. Parkinsons Dis.
Volume:	12
Number:	1
Page Range:	S. 361 - 371
Date:	2022
Publisher:	IOS PRESS
Place of Publication:	AMSTERDAM
ISSN:	1877-718X
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language PALLIATIVE CARE; OLD; PATIENT Multiple languages Neurosciences Multiple languages
URI:	http://kups.ub.uni-koeln.de/id/eprint/67190