Research Article: Tackling psychosocial maladjustment in Parkinson’s disease patients following subthalamic deep-brain stimulation: A randomised clinical trial

Date Published: April 11, 2017

Publisher: Public Library of Science

Author(s): Joao Flores Alves Dos Santos, Sophie Tezenas du Montcel, Marcella Gargiulo, Cecile Behar, Sébastien Montel, Thierry Hergueta, Soledad Navarro, Hayat Belaid, Pauline Cloitre, Carine Karachi, Luc Mallet, Marie-Laure Welter, Alfonso Fasano.


Subthalamic nucleus deep brain stimulation (STN-DBS) is an effective treatment for the motor and non-motor signs of Parkinson’s disease (PD), however, psychological disorders and social maladjustment have been reported in about one third of patients after STN-DBS. We propose here a perioperative psychoeducation programme to limit such social and familial disruption.

Nineteen PD patients and carers were included in a randomised single blind study. Social adjustment scale (SAS) scores from patients and carers that received the psychoeducation programme (n = 9) were compared, both 1 and 2 years after surgery, with patients and carers with usual care (n = 10). Depression, anxiety, cognitive status, apathy, coping, parkinsonian disability, quality-of-life, carers’ anxiety and burden were also analysed.

Seventeen patients completed the study, 2 were excluded from the final analysis because of adverse events. At 1 year, 2/7 patients with psychoeducation and 8/10 with usual care had an aggravation in at least one domain of the SAS (p = .058). At 2 years, only 1 patient with psychoeducation suffered persistent aggravated social adjustment as compared to 8 patients with usual care (p = .015). At 1 year, anxiety, depression and instrumental coping ratings improved more in the psychoeducation than in the usual care group (p = .038, p = .050 and p = .050, respectively). No significant differences were found between groups for quality of life, cognitive status, apathy or motor disability.

Our results suggest that a perioperative psychoeducation programme prevents social maladjustment in PD patients following STN-DBS and improves anxiety and depression compared to usual care. These preliminary data need to be confirmed in larger studies.

Partial Text

Parkinson’s disease (PD) is a progressive neurodegenerative disorder classically characterised by motor signs, (i.e. tremor, bradykinesia, rigidity, gait and balance disorders) and also non-motor symptoms with cognitive and neuropsychiatric disorders such as depression, apathy and anxiety [1]. For over fifteen years, deep brain stimulation (DBS) of the subthalamic nucleus (STN) has been shown to be an efficient means of improving motor disability while allowing a reduction of dopaminergic drug treatment and levodopa-induced motor complications [2]. Despite this dramatic improvement, previous studies have frequently reported negative psychological outcomes. Indeed, STN-DBS may provoke hypomanic status or impulsivity, which can be improved by the interruption of STN-DBS or by modifying the parameter settings [3–5]. The psychological consequences of STN-DBS are still a subject of debate with some studies reporting an improvement or no change in depression and/or anxiety [6–9] and others an aggravation [10,11]. In addition, changes in self-image and personality traits have also been reported [12,13] with perceived outcome subjectively judged as negative [14]. The latter negative psychological outcomes may result in a reduced improvement in quality of life, but also reduced social and familial adjustment with a paradoxical aggravation in about one third of cases with work disruption, marital or familial discord [7,12,14,15]. This postoperative maladjustment was initially described as a “burden of health” given the patients’ difficulties to return to their “normal” life after surgery [16]. More recently, it has been matched to the “burden of normality” syndrome, initially described within the context of anterior-temporal lobectomy in epilepsy patients [17] who experienced psychological and social complications following the “chronically ill” to the “seizure free” transition. No clinical factor has been clearly identified in relation to the occurrence of postoperative maladjustment, but patients’ realistic vs. unrealistic expectations about the treatment seem to play a central role [18–21]. Psychoeducational interventions have been previously proposed as a method to accompany medical treatments with positive impact on treatment outcome and patients’ psychological adjustment [22–28]. Nevertheless no specific intervention has been advocated to avoid these psychological side effects following STN-DBS. In this prospective randomised controlled study, we report the effects of a psychoeducation programme, specifically designed for PD patients enrolled for STN-DBS and for their respective carers, given their central role on the dyad psychological adjustment after DBS-STN [29].

Nine PD patients (1 woman and 8 men, median age [Interquartile range] = 60 [52–65] years, median disease duration [Interquartile range] = 9 [8–15] years) and their carers (median age [Interquartile range] = 59 [59–64] years) were randomised into the psychoeducation programme group and 10 patients (3 women and 7 men, median age [Interquartile range] = 60 [52–65] years, median disease duration [Interquartile range] = 9 [8–15] years) and their carers (median age [Interquartile range] = 57 [48–63] years) into the usual treatment group (Fig 1). After randomisation, 2 patients (P11 and P15) from the psychoeducation group presented adverse events that prevented surgery (preoperative cognitive decline, haemostasis deficit). Finally, 17 patients (psychoeducation, n = 7; usual treatment, n = 10) and carers were tested before (baseline), 1 and 2 years after surgery.

In this randomised controlled study, a perioperative psychoeducation programme was found to prevent postoperative maladjustment in all subdomains, except for one patient, suggesting that it is an effective means of avoiding the social maladjustment paradox in PD patients following STN-DBS.

In conclusion, this preliminary study provides arguments for the importance of preparing PD patients for their post-operative condition, taking into account the social, familial and marital consequences in close relationship with the carer, in order to prevent social maladjustment following STN-DBS. These results need to be confirmed in future larger studies with double-blind assessment, and also to demonstrate its feasibility from an ecological point of view and identify predictive factors.




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