Development of a Multidimensional Assessment Tool for the Evaluation of Holistic Quality of Life in Parkinson's Disease.
Parkinson’s disease
assessment tool
health-related quality of life
holistic
personalized care
prognostication
Journal
Journal of Parkinson's disease
ISSN: 1877-718X
Titre abrégé: J Parkinsons Dis
Pays: Netherlands
ID NLM: 101567362
Informations de publication
Date de publication:
2022
2022
Historique:
pubmed:
5
10
2021
medline:
28
4
2022
entrez:
4
10
2021
Statut:
ppublish
Résumé
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. 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. 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. The development of the CHAPO-PD model has been completed and it represents the first main result of this study. 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.
Sections du résumé
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.
Identifiants
pubmed: 34602498
pii: JPD202391
doi: 10.3233/JPD-202391
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM