Background: Longitudinal qualitative data on what matters to people with Parkinson's disease are lacking and needed to guide patient-centered clinical care and development of outcome measures.
Objective: To evaluate change over time in symptoms, impacts, and relevance of digital measures to monitor disease progression in early Parkinson's.
Methods: In-depth, online symptom mapping interviews were conducted with 33 people with early Parkinson's at baseline and 1 year later to evaluate (A) symptoms, (B) impacts, and (C) relevance of digital measures to monitor personally relevant symptoms.
Mov Disord Clin Pract
January 2025
Background: Limited evidence exists regarding the meaningfulness of symptoms experienced in early Parkinson's disease (PD).
Objectives: To identify the most bothersome symptoms experienced by people with early PD, leveraging data from the Parkinson's Disease Patient Report of Problems (PD-PROP) questionnaire within the Fox Insight Study.
Methods: Individuals with a self-reported diagnosis of PD completed the PD-PROP questionnaire, reporting up to five most bothersome symptoms.
In a prospective, remote natural history study of 277 individuals with (60) and genetically at risk for (217) Parkinson's disease (PD), we examined interest in the return of individual research results (IRRs) and compared characteristics of those who opted for versus against the return of IRRs. Most ( = 180, 65%) requested sharing of IRRs with either a primary care provider, neurologist, or themselves. Among individuals without PD, those who requested sharing of IRRs with a clinician reported more motor symptoms than those who did not request any sharing (mean (SD) 2.
View Article and Find Full Text PDFBackground: In non-nephrology settings, specialty Palliative Care (PC) improves decision-making, patient's quality of life (QoL), advance care planning (ACP), and certain indicators of the quality of end-of-life (EoL) care. This pilot RCT explored the feasibility and acceptability of a PC intervention, CKD-EDU, for older adults ≥75 years with eGFR ≤25 ml/min and their caregivers.
Methods: Participants randomized to the control group received standard nephrology care and routine kidney therapy (KT) education, while those randomized to CKD-EDU received a decision aid and met with a PC clinician up to three times to discuss KT decisions and EoL planning.
Background: DATATOP was a study of early Parkinson's disease (PD) conducted in the 1980 s, before mandatory folic acid fortification in the United States. Our analysis of its baseline serum samples revealed a geometric mean vitamin B12 of 369 pg/mL and homocysteine (tHcy) of 9.5μmol/l.
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