An Empirical Study on the Application of the Burden of Normality to Patients Undergoing Deep Brain Stimulation for Parkinson’s Disease
- 14 Downloads
Psychosocial maladjustment frequently occurs following deep brain stimulation (DBS) in patients with Parkinson’s disease (PD). This paper aimed at investigating, for the first time with first-hand data, whether the burden of normality model (BoN) could adequately describe the manifestations and underlying dynamics of psychosocial maladjustment after DBS for PD. In a mixed experimental design including quantitative and qualitative data, 19 patients treated with DBS for PD were interviewed on their post-DBS lived experience with the Austin CEP Interview, a semi-structured instrument addressing all elements of the BoN. In addition, health-related quality of life was measured before surgery and at the time of interview with the Medical Outcome Study 36-Item Short Form Health Survey. All patients experienced clinical manifestations of psychosocial maladjustment as described in the BoN. Yet, there was a great interindividual heterogeneity in descriptions of the perceived course of the post-DBS life. Experiencing various types of symptoms was nevertheless associated with the perception of a less satisfying life after surgery. In addition, most patients had realistic expectations on the surgical outcome, and those with unrealistic or mixed expectations did not differ from other patients in terms of psychosocial maladjustment. The BoN accurately conceptualizes psychosocial maladjustment experienced by DBS patients with PD. However, no relationship was established between the nature of pre-operative expectations and BoN symptoms.
KeywordsBurden of normality Deep brain stimulation Expectations Parkinson’s disease Rehabilitation Consultation-liaison psychiatry
This work was supported by the Swiss National Science Foundation (Grant Number: CR31I3_149578/1). The authors are thankful to Prof. Sarah Wilson and her colleagues from the University of Melbourne for allowing us to use the Austin CEP Interview.
Compliance with Ethical Standards
Conflict of interest
No conflict of interest has been declared by the authors.
- 8.Agid Y, Schüpbach M, Gargiulo M, Mallet L, Houeto JL, Behar C, et al. Neurosurgery in Parkinson’s disease: The doctor is happy, the patient less so? J Neural Transm. 2006;70:409–14.Google Scholar
- 11.Pollak P (2013) Deep brain stimulation for Parkinson’s disease—patient selection. 1st ed, Vol. 116. Handbook of clinical neurology. Elsevier, pp 97–105. http://dx.doi.org/10.1016/B978-0-444-53497-2.00009-7.
- 12.Perestelo-Pérez L, Rivero-Santana A, Pérez-Ramos J, Serrano-Pérez P, Panetta J, Hilarion P (2014) Deep brain stimulation in Parkinson’s disease: meta-analysis of randomized controlled trials. J Neurol. http://www.ncbi.nlm.nih.gov/pubmed/24487826.
- 15.Meyer M, Montel SR, Colnat-Coulbois S, Lerond J, Potheegadoo J, Vidailhet P, et al. Neurosurgery in Parkinson’s disease: social adjustment, quality of life and coping strategies. Neural Regen Res. 2013;8(30):2856–67.Google Scholar
- 22.Bell E, Maxwell B, McAndrews MP, Sadikot AF, Racine E. A review of social and relational aspects of deep brain stimulation in Parkinson’s disease informed by healthcare provider experiences. Parkinsons Dis. 2011;2011:871–4.Google Scholar
- 23.Dos Santos JFA, du Montcel ST, Gargiulo M, Behar C, Montel S, Hergueta T, et al. Tackling psychosocial maladjustment in Parkinson’s disease patients following subthalamic deep-brain stimulation: a randomised clinical trial. PLoS ONE. 2017;12(4):e0174512. https://doi.org/10.1371/journal.pone.0174512.CrossRefGoogle Scholar
- 24.Baertschi M, Dos Santos JFA, Burkhard P, Weber K, Canuto A, Favez N. The burden of normality as a model of psychosocial adjustment after deep brain stimulation for Parkinson’s disease: a systematic investigation. Neuropsychology. 2019;33(2):178–94. https://doi.org/10.1037/neu0000509.PubMedCrossRefGoogle Scholar
- 30.Mattis S. Dementia rating scale professional manual. Odessa: Psychological Assessment Resources; 1988.Google Scholar
- 40.Wang Y, Li Y, Zhang X, Xie A. Apathy following bilateral deep brain stimulation of subthalamic nucleus in Parkinson’s disease: a meta-analysis. Parkinsons Dis. 2018;2018:1–7.Google Scholar
- 46.Maier F, Lewis CJ, Horstkoetter N, Eggers C, Kalbe E, Maarouf M, et al. Patients’ expectations of deep brain stimulation, and subjective perceived outcome related to clinical measures in Parkinson’s disease: a mixed-method approach. J Neurol Neurosurg Psychiatry. 2013;84(11):1273–81.PubMedCrossRefGoogle Scholar