Patient Preferences for Device-Aided Treatments Indicated for Advanced Parkinson Disease

Marshall, Thomas; Pugh, Amy; Fairchild, Angelyn; Hass, Steven

doi:10.1016/j.jval.2017.06.001

Cited by 29 publications

(21 citation statements)

References 31 publications

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“…age, magnitude of levodopa responsiveness) may add expert consideration to local guidelines and best medical practices for the use of appropriate device-aided therapies in the treatment of APD patients. In addition, initiation of device-aided therapies should also consider patients' preferences for treatment attributes and risks 34,44 , as well as overall living conditions (e.g. the presence of caregiver/family support, access to a treatment center).…”

Section: Discussionmentioning

confidence: 99%

Developing consensus among movement disorder specialists on clinical indicators for identification and management of advanced Parkinson’s disease: a multi-country Delphi-panel approach

Antonini

Stoessl²,

Kleinman

et al. 2018

Current Medical Research and Opinion

193

210

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Background: Lack of a global consensus on the definition of advanced Parkinson's disease (APD) and considerations for timing of device-aided therapies may result in heterogeneity in care. Objectives: To reach consensus among movement disorder specialists regarding key patient characteristics indicating transition to APD and guiding appropriate use of device-aided therapies in the management of PD symptoms. Methods: A Delphi-panel approach was utilized to synthesize opinions of movement disorder specialists and build consensus. Results: A panel was comprised of movement disorder specialists from 10 European countries with extensive experience of treating PD patients (mean ¼24.8 ± 7.2 years). Consensus on indicators of suspected APD and eligibility for device-aided therapies were based on motor symptoms, non-motor symptoms, and functional impairments. Key indicators of APD included: (i) motor-moderate troublesome motor fluctuations, 1 h of troublesome dyskinesia/day, 2 h "off" symptoms/day, and 5-times oral levodopa doses/day; (ii) non-motor-mild dementia, and non-transitory troublesome hallucinations; (iii) functional impairment-repeated falls despite optimal treatment, and difficulty with activities of daily living. Patients with good levodopa response, good cognition, and <70 years of age were deemed as good candidates for all three device-aided therapies. Patients with troublesome dyskinesia were considered good candidates for both levodopa-carbidopa intestinal gel and Deep Brain Stimulation (DBS). PD patients with levodopa-resistant tremor were considered good candidates for DBS. Conclusion: Identifying patients progressing to APD and suitable for device-aided therapies will enable general neurologists to assess the need for referral to movement disorder specialists and improve the quality of care and patient outcomes.

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Section: Discussionmentioning

confidence: 99%

Developing consensus among movement disorder specialists on clinical indicators for identification and management of advanced Parkinson’s disease: a multi-country Delphi-panel approach

Antonini

Stoessl²,

Kleinman

et al. 2018

Current Medical Research and Opinion

193

210

View full text Add to dashboard Cite

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“…Transitioning from oral drug administration to more invasive measures is an important step for patients; therefore, it is not surprising that many patients initially decline to move forward with DAT or request more time to discuss and educate themselves prior to initiating the change in treatment. The large percentage of patients delaying their DAT initiation suggests a need for enhanced patient-physician guidance on navigating the transition to DAT for optimal patient outcomes, while still incorporating patient preferences [15, 16].…”

Section: Discussionmentioning

confidence: 99%

Characterizing advanced Parkinson’s disease: OBSERVE-PD observational study results of 2615 patients

et al. 2019

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Background There are currently no standard diagnostic criteria for characterizing advanced Parkinson’s disease (APD) in clinical practice, a critical component in determining ongoing clinical care and therapeutic strategies, including transitioning to device-aided treatment. The goal of this analysis was to determine the proportion of APD vs. non-advanced PD (non-APD) patients attending specialist PD clinics and to demonstrate the clinical burden of APD. Methods OBSERVE-PD, a cross-sectional, international, observational study, was conducted with 2615 PD patients at 128 movement disorder centers in 18 countries. Motor and non-motor symptoms, activities of daily living, and quality-of-life end points were assessed. The correlation between physician’s global assessment of advanced PD and the advanced PD criteria from a consensus of an international group of experts (Delphi criteria for APD) were evaluated. Results According to physician’s judgment, 51% of patients were considered to have APD. There was a moderate correlation between physician’s judgment and Delphi criteria for APD (K = 0.430; 95% CI 0.406–0.473). Activities of daily living, motor symptom severity, dyskinesia duration/disability, “Off” time duration, non-motor symptoms, and quality-of-life scores were worse among APD vs. non-APD patients ( p < 0.0001 for all). APD patients (assessed by physicians) had higher disease burden by motor and non-motor symptoms compared with non-APD patients and a negative impact on activities of daily living and quality of life. Conclusions These findings aid in identifying standard APD classification parameters for use in practicing physicians. Improvements in identification of APD patients may be particularly relevant for optimizing treatment strategies including transitioning to device-aided treatment. Electronic supplementary material The online version of this article (10.1186/s12883-019-1276-8) contains supplementary material, which is available to authorized users.

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“…Another possible explanation for the uncertainty around DBS efficacy is that patient goals of surgical therapy may not align with what DBS can reasonably offer. Up to 25% of patients may still express dissatisfaction with DBS despite improvement of motor control (26), as patients tend to desire treatments that improve non-motor symptoms as well (27). Research has found that non-motor symptoms, which are not directly improved by DBS, are negatively associated with patient quality of life (28).…”

Section: Impressions Of Dbs Efficacymentioning

confidence: 99%

Capturing Initial Understanding and Impressions of Surgical Therapy for Parkinson's Disease

et al. 2021

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Background: Deep Brain Stimulation (DBS) is an underutilized surgical therapy for Parkinson's Disease (PD). Both physician and patient hesitancies have been described as potential barriers to DBS, but the specifics of patient perceptions of DBS have not been well-characterized in the general PD population.Objective: To characterize the understanding and impressions of surgical therapy in PD patients prior to formal surgical evaluation.Methods: A 30-question survey assessing impressions of surgical therapy for PD and understanding of DBS for PD was administered to PD patients seen at an urban movement disorders clinic.Results: One hundred and two patients completed the survey. When asked if they would undergo a hypothetical risk-free, curative brain surgery for PD, 98 patients responded “yes.” Patients were more agreeable to “reversible,” “minimally-invasive,” and “incisionless” surgery. 51.2% thought DBS is an “effective” treatment for PD, 76.6% thought it was “invasive,” and 18.3% thought it was “reversible.” 45.2% reported fear of being awake during DBS surgery. Regarding costs, 52.4% were concerned that DBS was “very expensive” or “not covered by insurance.” Initial source of information and perceived treatment effectiveness were not associated with concerns about DBS effectiveness or threats to normality. Negative perceptions of past surgery were associated with concerns about DBS altering mood and personality.Conclusion: Overall, patients expressed concerns regarding procedural efficacy, invasiveness, cost, and irreversibility—independent of the original source of information. Future studies are required to allow us to better understand the impact of these initial findings on DBS hesitancy and underutilization.

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Patient Preferences for Device-Aided Treatments Indicated for Advanced Parkinson Disease

Abstract: This study clarifies the patient perspective in therapeutic choices for advanced PD. These findings may help improve communication between patients and providers and also provide evidence on patient preferences to inform regulatory and access decisions.

Cited by 29 publications

References 31 publications

Developing consensus among movement disorder specialists on clinical indicators for identification and management of advanced Parkinson’s disease: a multi-country Delphi-panel approach

Developing consensus among movement disorder specialists on clinical indicators for identification and management of advanced Parkinson’s disease: a multi-country Delphi-panel approach

Characterizing advanced Parkinson’s disease: OBSERVE-PD observational study results of 2615 patients

Capturing Initial Understanding and Impressions of Surgical Therapy for Parkinson's Disease

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