Objective: To describe the status and recent findings from the National Parkinson Foundation’s Quality Improvement Initiative (NPF-QII), an 8,179 subject observational clinical study conducted at 21 expert clinics in 4 countries.

Background: In 2009, NPF launched NPF-QII with the twin aims of (1) analyzing Parkinson’s disease (PD) in the context of expert care, and (2) identifying, evaluating, and disseminating best practices in PD care.

Methods: NPF-QII is a longitudinal observational study of expert care without exclusions to study the natural history of PD in the context of current best practices. Launched with a course-grained comprehensive evaluation, in its 7th year, the dataset is being updated to reflect insights from experience. The study has been based on a simple standardized data set integrating demographics; validated surveys and evaluations for health related quality of life (HRQL: PDQ-39), caregiver strain (MCSI), mobility (timed up-and-go), disease severity (Hoehn and Yahr stage); a subset of the MoCA evaluation for cognition; and an evaluation of living situation, comorbidities, medications and treatment options, and utilization (hospitalizations). Outcomes analyses have focused on six key areas: mobility, cognition, HRQL, utilization, caregiver strain, and falls.

Results: The study now includes 8,179 subjects evaluated 20,713 times from 21 expert clinics. The average subject was evaluated 2.53 times (range: 1-9) over 1.94 years (range: 0-6.15). Over the course of follow-up, 1,598 subjects (19.5%) withdrew and 716 (8.75%) died. Employing a modified Delphi process to identify updates to the dataset and to select changes to implement, investigators identified key areas for increased data granularity. Additions to the dataset include demographics (level of education), PD evaluation (wearing off, dyskinesia), a comorbidities scale, a levodopa equivalent dose calculation, increased detail on exercise and activity levels, and frequency and duration of expert care. The dataset has been able to provide insight into diverse aspects of PD including the impact of exercise, association between antidepressants and falls, weight loss and HRQL, and status of long-term survivors.

Conclusions: This study has demonstrated the value of prospective, systematic collection of clinical and patient reported data. We believe that the changes in the to the dataset will improve the ability to utilize the information to identify best practices in PD care.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/status-of-npf-qii-after-six-years-updates-to-the-dataset/