Background <p>Deep brain stimulation (DBS) of the subthalamic nucleus (STN) is an established treatment for advanced Parkinson’s disease (PD), often leading to positive motor and non-motor outcomes. While objective motor improvements after DBS are well documented, less is known about how patients and all those involved in their care perceive these benefits on a subjective level.</p> Objectives <p>The primary aim of the study was to investigate the perception gap between patients, caregivers, and treating neurologists regarding DBS physical and psychological benefits in PD and their correlates.</p> Methods <p>25 PD patients (age 58.9 ± 8.0 years; 9 women) who underwent bilateral STN-DBS, along with their caregivers and neurologists, rated perceived psychological and physical improvements 6 months after surgery using a two-item Visual Analogue Scales (VAS, 0–10). Intraclass correlation coefficients (ICC [95% confidence interval]) were calculated to assess reliability between raters.</p> Results <p>Patients, caregivers, and neurologists reported an average improvement of about 60% in the psychological domain and over 75% in the physical domain (<i>p</i> <i>&lt; 0.001</i>). No significant differences emerged between groups in two domains (<i>p</i><i> &gt; 0.05</i>). Inter-rater agreement was moderate-to-good for psychological improvement (0.74 [0.41–0.90], <i>p</i> &lt; 0.001), moderate for physical improvement (0.69 [0.27–0.88], <i>p</i> = 0.003), and good overall (0.79 [0.50–0.92], <i>p</i> &lt; 0.001).</p> Conclusions <p>PD patients, caregivers, and neurologists largely agree on the benefits of DBS six months post-surgery, reinforcing the reliability of patient self-report in outcome assessment. Integrating patient self-reports with proxy assessments enhances the evaluation of DBS outcomes, supporting a more comprehensive and patient-centered approach to both treatment assessment and post-surgical care.</p> Trial registration <p>ClinicalTrials.gov Identifier: NCT06329726. Registered on 26 March 2024.</p>

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Triple perspective: assessing deep brain stimulation outcomes in Parkinson's disease

  • Denise Mellace,
  • Francesca Mameli,
  • Fabiana Ruggiero,
  • Filippo Cogiamanian,
  • Linda Borellini,
  • Angelica De Sandi,
  • Angelica Marfoli,
  • Eleonora Zirone,
  • Enrico Mailland,
  • Elena Pirola,
  • Antonella M. Ampollini,
  • Luigi G. Remore,
  • Marco Locatelli,
  • Alberto Priori,
  • Sergio Barbieri,
  • Roberta Ferrucci

摘要

Background

Deep brain stimulation (DBS) of the subthalamic nucleus (STN) is an established treatment for advanced Parkinson’s disease (PD), often leading to positive motor and non-motor outcomes. While objective motor improvements after DBS are well documented, less is known about how patients and all those involved in their care perceive these benefits on a subjective level.

Objectives

The primary aim of the study was to investigate the perception gap between patients, caregivers, and treating neurologists regarding DBS physical and psychological benefits in PD and their correlates.

Methods

25 PD patients (age 58.9 ± 8.0 years; 9 women) who underwent bilateral STN-DBS, along with their caregivers and neurologists, rated perceived psychological and physical improvements 6 months after surgery using a two-item Visual Analogue Scales (VAS, 0–10). Intraclass correlation coefficients (ICC [95% confidence interval]) were calculated to assess reliability between raters.

Results

Patients, caregivers, and neurologists reported an average improvement of about 60% in the psychological domain and over 75% in the physical domain (p< 0.001). No significant differences emerged between groups in two domains (p > 0.05). Inter-rater agreement was moderate-to-good for psychological improvement (0.74 [0.41–0.90], p < 0.001), moderate for physical improvement (0.69 [0.27–0.88], p = 0.003), and good overall (0.79 [0.50–0.92], p < 0.001).

Conclusions

PD patients, caregivers, and neurologists largely agree on the benefits of DBS six months post-surgery, reinforcing the reliability of patient self-report in outcome assessment. Integrating patient self-reports with proxy assessments enhances the evaluation of DBS outcomes, supporting a more comprehensive and patient-centered approach to both treatment assessment and post-surgical care.

Trial registration

ClinicalTrials.gov Identifier: NCT06329726. Registered on 26 March 2024.