Abstract
Background
Only 10% of the up to 15% of patients with advanced Parkinson’s disease (PD) eligible for deep brain stimulation (DBS) are referred to specialized centers. This survey evaluated the reasons for the reluctance of patients and referring physicians regarding DBS.
Methods
Two different questionnaires containing multiple choice and open verbalized questions were developed, one for neurologists and one for patients with PD. The first questionnaire was sent to 87 neurologists in private practice in the catchment area of the authors’ medical center, the second to patient support groups in the same region with the help of the German Parkinson Association.
Results
Of the addressed neurologists, 56.3% completed the questionnaire; 61.2% of them estimated the risk of intracerebral hemorrhage as the most severe complication at 4.3% on average; 30.6% were concerned about patients developing mood changes or depression after DBS. Only 16.3% felt unable to care for patients after DBS; 61.2% already had personal experience with patients after DBS and reported good clinical outcome in 90.0% of patients. Although 87.8% claimed to know the specific criteria for DBS, only 40.8% could actively describe them. Only 14.0% could state each of the three main criteria. Of the 46 patients, 88.1% completing the questionnaire had obtained information on DBS from regional patient organizations and 54.8% also from a physician; 44.7% assumed the risk of severe complications to be ≥5.0%. Not being satisfied with their medical treatment was reported by 22.2%, of whom more than 70% considered DBS a further treatment option.
Conclusions
The latter numbers indicate that treating neurologists tend to overestimate the reluctance of their patients to undergo DBS. Therefore, education of patients and neurologists should be improved and give more realistic figures on the actual outcomes and frequencies of possible complications.
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Acknowledgments
Thanks are given to Monika C. Schoell for English editing and to our patients and neurological colleagues in the field for filling out the questionaires.
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M. Lange has received fees for serving as a speaker, consultant, and advisory board member for Medtronic and UCB and has received research funding from UCB, Licher MT, and St. Jude Medical.
J. Schlaier has received teaching honoraria from Medtronic, Inc., and research support from St. Jude Medical, Antisense Pharma, and Medtronic. He has given several talks in the past few years, which have been partly sponsored by Medtronic, St. Jude Medical, or BrainLab. He serves as a consultant to Medtronic, Inc., and receives compensation for these services.
A. Hochreiter has received travel grants and training fees from Medtronic for educational courses in functional neurosurgery.
A. Brawanski declares that he has no conflict of interest.
F. Zeman declares that he has no conflict of interest.
J. Mauerer declares that he has no conflict of interest.
U. Bogdahn declares that he has no conflict of interest.
A. Janzen declares that she has no conflict of interest.
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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.
For this type of study formal consent is not required.
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Comments
The authors of this very interesting article elucidate with a well-constructed survey one of the biggest problems in movement disorder surgery (DBS): “a reluctance” of neurologists outside large university centers to refer patients to tertiary centers that offer surgical treatment options for movement disorders (DBS or ablative procedures).
Several different factors are at the root of this problem:
(1) Lack of understanding of the surgical therapeutic options (insufficient knowledge, as pointed out in the article)
(2) Unrealistically high risk assessment (bleeding risks or neurological deficit risks)
(3) Consideration of DBS as “the last treatment option” after everything has failed
(4) Suboptimal interaction between the primary care physician/neurologist and tertiary care neurologists/neurosurgeons
Reluctance of neurologists in primary care to refer patients is not only present in movement disoders but also in epilepsy surgery (1, 2), spasticity (4), and trigeminal neuralgia (3), which has been well documented in the literature.
There is ambivalence and uncertainty in the neurology community toward several very effective surgical treatment options for neurological conditions suitable to functional neurosurgical procedures, and DBS is one of these treatment options.
I agree with the authors that education of primary care physicians/neurologists is very important but alone will not solve the problem.
Large tertiary centers offering DBS and other functional neurosurgical procedures should rely on solid MDT with involvement of the primary care physician when appropriate, should be able to produce reports on their surgical results (prospective database with outcome measures, complications, and long-term follow-up) and interact actively with patient focus groups.
Education should be based on what we can offer but also on how good (or bad) we are doing locally. In this current financial climate, the cost-effectiveness of functional surgical procedures (and DBS is one of the most expensive) will be requested not only by primary care physician but increasingly by the commissioning group or insurance company.
Jibril Osman Farah
Liverpool, UK
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Lange, M., Mauerer, J., Schlaier, J. et al. Underutilization of deep brain stimulation for Parkinson’s disease? A survey on possible clinical reasons. Acta Neurochir 159, 771–778 (2017). https://doi.org/10.1007/s00701-017-3122-3
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DOI: https://doi.org/10.1007/s00701-017-3122-3