gms | German Medical Science

Background/Research question/Problem: Parkinsonian syndromes (PS) are heterogeneous chronic neurodegenerative disorders associated with motor and non-motor symptoms. These symptoms have major psychosocial effects on patients' quality of life and may also result in a high burden on caregivers. Increasing patients’ and caregiver’s quality of life is one of the major objectives in care delivery for PS and an important endpoint for evaluating care delivery models. To date, several questionnaires have been developed to assess quality of life, but none of these include the positive aspects of well-being, such as personal and social resilience factors. However, it has been suggested that a holistic strategy should be designed when aiming to maintain QoL in patients with PS, which ultimately requires an outcome measure that captures the full spectrum of positive and negative factors affecting QoL.

Solution and suggestion: We aim to adopt a concept for a longitudinal assessment of quality of life to Parkinson-specific aspects of quality of life, including environmental and individual factors, life chances and life results from a subjective as well as an objective point of view. The tool will be based on the CHAPO model (Challenges and Potentials), which has been established in a vast study to assess the quality of life of the elderly. We intend to establish a digital monitoring system to assess Parkinson's patients in a standardized manner throughout the course of the disease. The contribution will present the developed tool (CHAPO-PD), results from a first pilot study, next steps and a future outlook. Also, we will discuss the potential implications from using the tool for constructing health care delivery models for PD.

Conclusion/Discussion/Lessons learned: The CHAPO-PD model has now been developed and will be implemented as an outcome measure for the first time within the next months. Current challenges include the development of a standardized analysis strategy that allows the complexity of the tool to be reduced without compromising its holistic character. The CHAPO-PD is recorded using a digital application, that enables an assessment independent of location. This digital application will be implemented alongside a cohort study, where we conduct physical and apparative examinations every six months over the course of the disease with a minimum of 500 patients.