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Strengths and weaknesses of patient-reported outcomes following DBS surgery: Comparing clinician, patient, and caregiver assessments

L. Shahgholi, W. Deeb, K. Foote, A. Shukla, U. Akbar, J.P. Rossi, S. De Jesus, M.S. Okun (Gainesville, FL, USA)

Meeting: 2016 International Congress

Abstract Number: 5

Keywords: Deep brain stimulation (DBS), Parkinsonism

Session Information

Date: Monday, June 20, 2016

Session Title: Surgical therapy: Parkinson's disease

Session Time: 12:30pm-2:00pm

Location: Exhibit Hall located in Hall B, Level 2

Objective: Assess the degree of correlation between DBS outcome measures rated by patients, caregivers, and clinicians.

Methods: The Clinician Global Impression (CGI) score and two Patient Global Impression (PGI) scores (one patient-rated and one caregiver-rated) were obtained for 136 idiopathic Parkinson’s patients following DBS surgery at 3, 6, and 12 months post-intervention. The patient pool included all idiopathic PD patients who underwent DBS surgery as a part of the St. Jude DBS study. To assess inter-rater agreement, we assigned equally spaced scores of 0 – 4 to each outcome category in the two scales and calculated the performed Cochran-Mantel-Haenszel procedure with a 95% CI and subsequently assigned a weighted Kappa score.

Results: There were 84 men and 52 women in the study and the mean age of the cohort was 60.05 ± 8.3 years. The percentage of complete agreement between the examiner and patient scores was 61.8% at 3 months, 67.4% at 6 months and 65.2% at 12 months. The percentage of agreement (with one or less category of disagreement) was 94.9% at 3 months, 97% at 6 months and 97% at 12 months. A similar pattern was observed for the examiner-caregiver and caregiver-patient comparison (p values for all <0.0001).

Conclusions: Our pilot study shows relatively strong agreement among patient, caregiver, and clinician ratings of global outcomes following DBS for PD, and this agreement is consistent across the time intervals studied. However, notable differences caution against viewing these ratings as interchangeable. Further investigation of these preliminary findings is needed, particularly in light of the growing emphasis on patient-reported outcomes.

To cite this abstract in AMA style:

L. Shahgholi, W. Deeb, K. Foote, A. Shukla, U. Akbar, J.P. Rossi, S. De Jesus, M.S. Okun. Strengths and weaknesses of patient-reported outcomes following DBS surgery: Comparing clinician, patient, and caregiver assessments [abstract]. Mov Disord. 2016; 31 (suppl 2). https://www.mdsabstracts.org/abstract/strengths-and-weaknesses-of-patient-reported-outcomes-following-dbs-surgery-comparing-clinician-patient-and-caregiver-assessments/. Accessed June 15, 2025.
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