Piloting the NPF data-driven quality improvement initiative

Okun, Michael S.; Siderowf, Andrew; Nutt, John G.; O'Conner, G.; Bloem, Bastiaan R.; Olmstead, Elaine M.; Guttman, Mark; Simuni, Tanya; Cheng, Eric M.; Cohen, Elaine V.; Parashos, Sotirios A.; Marsh, Laura; Malaty, Irene A.; Giladi, Nir; Schmidt, Péter; Oberdorf, Joyce

doi:10.1016/j.parkreldis.2010.06.005

Cited by 45 publications

(49 citation statements)

References 10 publications

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“…Information on the development of the NPF-QII research study has been published previously [15]. Participants were eligible for the study if they received medical care for the diagnosis of PD at one of the participating centers, with no other exclusions.…”

Section: Methodsmentioning

confidence: 99%

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Regular Exercise, Quality of Life, and Mobility in Parkinson’s Disease: A Longitudinal Analysis of National Parkinson Foundation Quality Improvement Initiative Data

Rafferty¹,

Schmidt

Luo

et al. 2016

Journal of Parkinson’s Disease

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104

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Background Research-based exercise interventions improve health-related quality of life (HRQL) and mobility in people with Parkinson’s disease (PD). Objective To examine whether exercise habits were associated with changes in HRQL and mobility over two years. Methods We identified a cohort of National Parkinson Foundation Quality Improvement Initiative (NPF-QII) participants with three visits. HRQL and mobility were measured with the Parkinson’s Disease Questionnaire (PDQ-39) and Timed Up and Go (TUG). We compared self-reported regular exercisers (≥2.5 hours/week) with people who did not exercise 2.5 hours/week. Then we quantified changes in HRQL and mobility associated with 30-minute increases in exercise, across PD severity, using mixed effects regression models. Results Participants with three observational study visits (n = 3408) were younger, with milder PD, than participants with fewer visits. After 2 years, consistent exercisers and people who started to exercise regularly after their baseline visit had smaller declines in HRQL and mobility than non-exercisers (p < 0.05). Non-exercisers worsened by 1.37 points on the PDQ-39 and a 0.47 seconds on the TUG per year. Increasing exercise by 30 minutes/week was associated with slower declines in HRQL (−0.16 points) and mobility (−0.04 sec). The benefit of exercise on HRQL was greater in advanced PD (−0.41 points) than mild PD (−0.14 points; p < 0.02). Conclusions Consistently exercising and starting regular exercise after baseline were associated with small but significant positive effects on HRQL and mobility changes over two years. The greater association of exercise with HRQL in advanced PD supports improving encouragement and facilitation of exercise in advanced PD.

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Section: Methodsmentioning

confidence: 99%

“…The NPF-QII study collects demographics, disease duration, Hoehn and Yahr stage (HY), family history, brief neuropsychological profile and cognitive assessments, as well as data on pharmacologic and non-pharmacologic management of PD symptoms [15]. These observational study visits are scheduled on a yearly basis.…”

Section: Methodsmentioning

confidence: 99%

Regular Exercise, Quality of Life, and Mobility in Parkinson’s Disease: A Longitudinal Analysis of National Parkinson Foundation Quality Improvement Initiative Data

Rafferty¹,

Schmidt

Luo

et al. 2016

Journal of Parkinson’s Disease

Self Cite

104

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“…The international, multicenter National Parkinson Foundation's Quality Improvement Initiative (NPF-QII) study database prospectively records annual data on PD subjects from 20 NPF Centers of Excellence in the United States, Canada, Netherlands, and Israel [7]. At the time of the study, NPF-QII was in its third year of enrollment, having registered 4,619 PD participants.…”

Section: Methodsmentioning

confidence: 99%

“…Similar to the PDQ-39, the MCSI is expressed as an index percentage [10]. The scale has not been validated in PD, but expert review recommended this was appropriate for the PD population [7]. The MoCA estimate, a weighted cognitive score formed from a combination of immediate and delayed 5-word recall and semantic fluency (animals) scores to optimally predict MoCA [11] results, was concurrently collected at one center (University of Pennsylvania).…”

Section: Methodsmentioning

confidence: 99%

The Profile of Long-term Parkinson’s Disease Survivors with 20 Years of Disease Duration and Beyond

Hassan

Schmidt

et al. 2015

Journal of Parkinson’s Disease

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Abstract.Background: Parkinson's disease (PD) patients with 20 years or more survival are not well characterized. Objective: To evaluate PD-20 patient characteristics and identify areas for improvement of their health care. Methods: The international, multicenter National Parkinson's Foundation Quality Improvement Initiative (NPF-QII) study database was queried to identify PD-20 subjects. Demographic and clinical data were analyzed. Results: We identified 187 PD-20 subjects (55% men) representing 4% (187/4,619) of all NPF-QII participants. Subjects were mean age 69.5 years; mean age at PD onset was 44.0 years. The majority (75%) had 20-25 years of PD duration, the longest duration being 49 years. They were median Hoehn and Yahr stage 3, and 75% had motor fluctuations. Half (54%) reported exercising. The majority (89%) were living at home and required a caregiver (88%). They were mildly cognitively impaired for age (Montreal Cognitive Assessment estimate 22.6 ± 3.7), with most deficits in verbal fluency and delayed recall. Quality of life (Parkinson's Disease Quality of Life Questionnaire index 36 ± 15%) was mild to moderately impaired, with most impairment in mobility and activities of daily living. Caregiver strain measured by the Multidimensional Caregiver Strain Index (27 ± 16%), recorded highest subscores in social constraint. PD-20 subjects aged <70 years versus ≥70 only differed significantly by worse cognition (P < 0.0001). Conclusions: PD-20 subjects reflect an elite group of PD survivors with early-onset disease and relatively mild cognitive disability despite long disease duration. Interventions for caregivers, mobility, and activities of daily living are areas that could improve caregiver burden and patient quality of life.

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“…For a full description of the database and its development, see Okun et al [21]. Baseline characteristics of the cohort were recently published [22].…”

Section: Study Samplementioning

confidence: 99%

Back to the basics: Regular exercise matters in Parkinson's disease: Results from the National Parkinson Foundation QII Registry study

Oguh

Eisenstein

Kwasny

et al. 2014

Parkinsonism & Related Disorders

119

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Piloting the NPF data-driven quality improvement initiative

Cited by 45 publications

References 10 publications

Regular Exercise, Quality of Life, and Mobility in Parkinson’s Disease: A Longitudinal Analysis of National Parkinson Foundation Quality Improvement Initiative Data

Regular Exercise, Quality of Life, and Mobility in Parkinson’s Disease: A Longitudinal Analysis of National Parkinson Foundation Quality Improvement Initiative Data

The Profile of Long-term Parkinson’s Disease Survivors with 20 Years of Disease Duration and Beyond

Back to the basics: Regular exercise matters in Parkinson's disease: Results from the National Parkinson Foundation QII Registry study

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