# Illness perceptions in pre-operative Parkinson's disease patients

Mylène Meyer, Sophie Colnat-Coulbois, Solène Frismand, Pierre Vidailhet, Pierre-Michel Llorca, Raymund Schwan, Elisabeth Spitz

► To cite this version:

Mylène Meyer, Sophie Colnat-Coulbois, Solène Frismand, Pierre Vidailhet, Pierre-Michel Llorca, et al. Illness perceptions in pre-operative Parkinson's disease patients. Journal of Neural Transmission, 2023, 130 (5), pp.647-654. 10.1007/s00702-023-02629-2. hal-04906831

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# Illness perceptions in pre-operative Parkinson's disease patients

Mylène Meyer<fnref n="1" />☐, Sophie Colnat-Coulbois<fnref n="2" />,<fnref n="3" />, Solène Frismand<fnref n="1" />, Pierre Vidailhet<fnref n="4" />, Pierre-Michel Llorca<fnref n="5" />, Raymund Schwan<fnref n="3" />,<fnref n="6" />, Elisabeth Spitz<fnref n="3" />,<fnref n="7" />

Received: 3 January 2023 / Accepted: 27 March 2023 / Published online: 6 April 2023
© The Author(s), under exclusive licence to Springer-Verlag GmbH Austria, part of Springer Nature 2023

## Abstract

Parkinson's disease (PD) is a neurodegenerative disease, that combines motor and non-motor disorders, and alters patients' autonomy. Even if subthalamic nucleus deep brain stimulation (STN-DBS) induces undisputable motor improvement, a post-operative social maladjustment was described by some patients. Our aim was to describe pre-operative illness perceptions in parkinsonian patients, and to determine the possible impact of cognitive restructuration over them. We analyzed 27 parkinsonian patient's candidates to DBS. The mean age was 59 ± 5.94 years, and mean disease duration was 9.89 ± 4.15 years. The patients had two pre-operative psychological interviews (DBS-45 days, DBS-25 days) and completed the Illness Perception Questionnaire-Revised (IPQ-R) before the first interview and at DBS-1 day. The CRTG group (n = 13) had cognitive restructuration during second interview, on dysfunctional cognitions about their perception of post-DBS life which emerged from the first interview. The PIG group (n = 14) benefited of two non-structured interviews. No significant differences were found between the visits (DBS-45 days, DBS-1 day) for IPQ-R dimensions, except for the perception of “personal control” over PD which appears significantly higher for CRTG than PIG group (p = .039) at DBS-1 day, whereas the scores were quite similar at DBS-45 days. Illness perceptions seem to be stable over time and mostly influenced by disease experience of PD. However, the perception of personal control over PD seemed to be modulated through cognitive restructuration, giving patients' control back over disease. Before DBS, illness perceptions investigation and restructuration constitute an interesting point to work on, to enhance perceived benefits of neurosurgery.

Trial registration: Clinical Research Program, N°IDRCB 2008-A00655-50, approved by the local ethics committee (CPP EST III, N° CPP: 08.07.03, first version date: 04/01/2008), registered on the ClinicalTrials.gov website (NCT02893449).

**Keywords** Illness perceptions · Health psychology · Parkinson's disease · Subthalamic nucleus deep brain stimulation · Cognitive restructuration

<figure><img src="image_2.png" /></figure>

Mylène Meyer
my.meyer@chru-nancy.fr

Sophie Colnat-Coulbois
s.coulbois@chru-nancy.fr

Solène Frismand
s.frismand@chru-nancy.fr

Pierre Vidailhet
pierre.vidailhet@chru-strasbourg.fr

Pierre-Michel Llorca
pmllorca@chu-clermontferrand.fr

Raymund Schwan
raymund.schwan@univ-lorraine.fr

Elisabeth Spitz
elisabeth.spitz@univ-lorraine.fr

<footnote n="2">² Département de Neurochirurgie, Hôpital Central, CHRU de Nancy, 29 avenue du Maréchal de Lattre de Tassigny, 54001 Nancy Cedex, France</footnote>

<footnote n="3">³ Université de Lorraine, 34 Cours Leopold, CS 25233, 54052 Nancy Cedex, France</footnote>

<footnote n="4">⁴ Service de Psychiatrie I, Hôpital Civil, 1 Place de l'hôpital, BP426, 67091 Strasbourg Cedex, France</footnote>

<footnote n="5">5 Service de Psychiatrie Adulte B, CHU Gabriel Montpied, 58 rue Montalembert, 63000 Clermont-Ferrand, France</footnote>

<footnote n="6">6 Centre Psychothérapique de Nancy, 1 rue du Docteur Archambault, BP 11010, 54521 Laxou Cedex, France</footnote>

<footnote n="7">⁷ Laboratoire de Psychologie de la Santé de Metz-EPSAM, Université de Lorraine, EA 4360 APEMAC, Ile du Saulcy, 57000 Metz, France</footnote>

<footnote n="1">¹ Service de Neurologie, Hôpital Central, CHRU Nancy, 29 avenue du Maréchal de Lattre de Tassigny, 54001 Nancy Cedex, France</footnote>
Introduction

Parkinson's disease (PD) is a non-curable neurodegenera-
tive disease, characterized by a complex combination of
motor and non-motor symptoms, particularly linked to
dopaminergic depletion, inducing specific symptomatol-
ogy in each patient. Classical motor symptoms triad is
tremor, akinesia, rigidity. The range of non-motor symp-
toms is very vast, from anosmia to cognitive and behav-
ioral disorders. Patients are treated with dopaminergic
replacement therapy (Armstrong and Okun 2020; Chaud-
huri et al. 2006; Jankovic 2008). Second-line treatments
based on continued-dopaminergic stimulation such as deep
brain stimulation (DBS) are proposed in advanced and
fluctuating patients. Subthalamic nucleus (STN) DBS is a
neurosurgery, consisting in the introduction of electrodes
which stimulates electrically frontal-subcortical circuits.
It induces major motor improvement, enhancement of
treatment complications and quality of life (Benabid et al.
2009; Pollak 2013).

In the context of illness (Leventhal et al. 1980; Hag-
ger and Orbell 2003; Hagger and Orbell 2021), subjects
develop a cognitive perception of their illness, which
allows them to cope with the risk entailed. This cognitive
perception of illness, also named as illness perception, is
individual and determines specific behavioral responses of
each person. These illness perceptions give a frame for the
individual to give sense to its symptoms, to evaluate risks
and to behave appropriately during recovery.

The literature dealing with illness perception in Par-
kinson's disease is very recent and quite restrained (Hurt
et al. 2015). Hurt et al. (2015) noticed that in PD patients,
disease is perceived as chronic with major consequences in
their daily life despite poorly identified causes. Due to the
degenerative character of PD, a marked optimism appears
dysfunctional, conducting to fewer adapted coping strate-
gies and lesser psychological well-being. Yet, a general
positive perception of PD appears linked to better quality
of life and psychological well-being (Hurt et al. 2014).

Psychological well-being determiners in PD seem to
be linked to the perception of personal control over the
disease or its symptoms, but also to the perception of the
consequences of the disease, and its emotional regulation
(Evans and Normal 2009; Dempster et al. 2015).

Illness perception in PD could be influenced by
patient's age, disease duration, and severity (Hurt et al.
2015). Indeed, compared with older patients, younger PD
patients identify more symptoms, more negative conse-
quences, more important cyclical and chronic chronology,
and also more important negative emotional perception.
Additionally, more severe symptoms should be linked
with higher perception of cyclical chronology, negative

emotional perception, and harmful consequences of PD.
Psychological distress seems to be influenced by personal
control in PD with short disease duration, whereas it
seems associated with cyclical chronology in PD with long
disease duration. This last distinction should be linked to
the fact that PD acceptance is a progressive adjustment
process related to disease duration.

Besides, perception of control seems to have an impact
on PD well-being (Hurt et al. 2015). On the one hand, due
to its degenerative and non-curable character, PD induces
a slight perception of control: pharmacological treatments
only allow to control symptoms, and not disease evolution
or recovery. On the other hand, a high perception of control
should be linked to irrational perception of PD, with harm-
ful consequences in patients who do not sufficiently search
for professional support. For Eccles et al. (2011), perception
of control in PD should take part at different levels. The
first level constitutes the control of PD symptoms and, in
particular, pharmacological observance. The second con-
trol process is based on the transition from disease denial
to situation acceptance. Acceptance has to be considered as
a difficult and nonlinear process in PD, fluctuating in par-
allel with disease progression. Evans and Norman (2009)
consider that disease acceptance or accommodation should
offer the maintenance of a balanced and realist perception
of control, contributing to better psychological adaptation to
PD. For Hurt et al. (2015), in PD patients, illness perception
has an important impact on patient's mood and participa-
tion to daily life, but also on their adjustment ability to this
neurodegenerative disease. So, they recommend that illness
perception should be considered to help adjust to the spe-
cificities of PD.

Considering STN-DBS in PD, only one paper has investi-
gated illness perceptions in pre- and post-operative patients
(Baertschi et al. 2020). They focused on the illness percep-
tions of cyclical timeline, personal control and treatment
control of the IPQ-R (Illness Perception Questionnaire-
Revised; Moss-Morris et al. 2002) measured 2 weeks pre-
operative, and 6–12-18 months post-operative. The authors
concluded that even if DBS is an important step in the evo-
lution of PD, illness perceptions for these dimensions were
relatively stable over time.

It has been observed that in PD patients treated with STN
DBS, even in cases of spectacular post-operative motor
improvement, some patients were disappointed. Many
hypotheses have been formulated to understand the reasons
why this situation occurs, highlighting the possible impact
of pre-operative irrational expectations for the result of neu-
rosurgery (Geraedts et al. 2019; Lin et al. 2019; Maier et al.
2013; Meyer et al. 2013; Schüpbach et al. 2006; Schüpbach
and Agid 2008) and/or premorbid personality (Boussac et al.
2020). Considering the recent findings of Hurt et al. (2019),
we can also mention the fact that in PD patients, symptoms

<figure><img src="image_3.png" /></figure>
perception and beliefs about help-seeking can interfere with their capacity to declare non-motor symptoms, which cannot be treated adequately. This specificity of not declaring specific symptoms, even though they are highly detrimental, can interfere with patient's quality of life, and in the context of neurosurgery, with the post-operative dissatisfaction. Hurt et al. (2019) propose to develop specific interventions to help patients declaring detrimental non-motor symptoms, i.e., specific and individualized educational programs, methods to improve patient's confidence in their medical team, to facilitate communication and to improve the efficient treatment of such symptoms.

So, considering the previously described possible interaction between illness perceptions and PD patient's capacity to adjust to their disease and symptoms, and so to adapt to their post-operative state offered by DBS, we propose to investigate the characteristics of illness perceptions in pre-operative PD patients, and to evaluate the possible impact of a brief pre-operative cognitive restructuration therapy on these perceptions.

# Patients and methods

## Design

The question of illness perception in PD pre-operative patients was investigated through an ancillary study of a wider prospective, controlled, multi-centered study (Clinical Research Program, N°IDRCB 2008-A00655-50) which was approved by the local ethics committee (CPP EST III, N° CPP: 08.07.03, first version date: 04/01/2008) and registered on the ClinicalTrials.gov website (NCT02893449). The study was conducted between April 2009 and November 2015 by the university hospital of Nancy, and the other university hospitals that included patients who were in Strasbourg and Clermont-Ferrand (France). All included patients gave written informed consent.

In this paper, we focused on pre-operative illness perception. PD patients selected for bilateral STN DBS having completed the Illness Perception Questionnaire-Revised (IPQ-R; Moss-Morris et al. 2002) were randomized through a per site stratified and computer implemented method into two groups at the inclusion visit (DBS-60 days), by the research center of the university hospital of Nancy. IPQ-R was completed with help of a psychiatrist, blinded to the patient's allocation group. Patients had been proposed pre-operative psychological preparation consisting of two interviews 45 and 25 days before DBS performed by trained psychologists (one psychologist per center). One group called "psychological interview group" (PIG) consisted of two non-directive psychological interviews. The specificity of the second group called "cognitive restructuration

therapy group" (CRTG) was the introduction of cognitive restructuration of unrealistic expectations for the DBS result (Meyer et al. 2021).

## Cognitive restructuration

These CRTG patients had a first semi-directed interview, during which their perceptions of PD and its impact, i.e., motor and non-motor symptoms of PD, its impact over daily life in the domains of work, social life and leisure, family relationship, financial impact, were investigated in three periods of life, i.e., actual life with PD, previous life without PD, and future life with PD after neurostimulation. During the second CRTG interview, the psychologist proposed to the patient a visual reconstruction of the structure of their cognitions concerning their perceptions and the consequences of PD. Then the pattern of cognitions was explained to the patient, who was asked if it corresponded to the perceptions evoked during first interview. As the patient attested that the psychologist clearly understood his cognitions, its "dysfunctional" cognitions were restructured. Cognitive restructuration consisted of a discussion about the dysfunctional cognition for the result of the neurosurgery in which the psychologist encouraged the patient to understand that the cognition was distorted and to consider alternative cognitions. This can be proposed through various approaches including decentralization, managing the degree of belief in the cognition, or describing the cognition in detail. For example, a patient awaiting to cure after DBS, decentralization could be proposed by the psychologist, who could ask: "Do you think that a recently neurostimulated patient is definitely cured from PD?". When proposing the management of the degree of belief in the cognition, the psychologist could ask: "To what extent, on a scale of 0 to 100, do you think that you will be definitively cured from PD after DBS?". Concerning the detailed description of the cognition, the psychologist could investigate, for example, why the patient thinks he will be cured from PD after DBS, which arguments support this cognition, and how he will be able to certify that he will be cured after neurosurgery.

## Measurements

All the included patients underwent two evaluations for illness perceptions. IPQ-R was proposed before the first pre-operative interview (DBS-45 days) and the day before DBS (DBS-1 day) to measure an eventual impact of pre-operative psychotherapy on illness perception, particularly cognitive restructuration.

The original version of the Illness Perception Questionnaire (IPQ) was developed by Weinman et al. (1996) to investigate the impact of illness perceptions on psychological adjustment and the patient's future in a
more standardized manner. Based on Leventhal’s Common-Sense Model (Leventhal et al. 1984, 1992, 2001, 2003; Leventhal 2003), IPQ was revised by Moss-Morris et al. (2002) becoming Illness Perception Questionnaire-Revised (IPQ-R). This revised version of the IPQ does not only investigate cognitive but also emotional aspects of illness perception. IPQ-R is a 38 items questionnaire divided into 3 sections, i.e., “identity”, “causes”, and the middle section consisting of the 7 cognitive processes characterizing illness perceptions, respectively, “personal control”, “treatment control”, “consequences”, “cyclical timeline”, “acute/chronic timeline”, “illness coherence”, and “emotional perceptions”. IPQ-R is a generic self-questionnaire. Answers are ranked on a five-points Likert type scale (strongly disagree, disagree, neither agree nor disagree, agree, strongly agree). The higher the dimensional score is, the stronger the perception of the dimension is. Causes subscale having a limited value due to its non-specific character in PD, only the seven dimensions of the middle section of the IPQ-R were used in our study.

## Statistical analysis

All statistical analyses were conducted using the software IBM SPSS V.20.0. (SPSS, Chicago, Illinois, USA). All data are reported as mean ± standard deviation. A value of *p* ≤ 0.05 was considered as statistically significant. The means were compared using ANOVA for repeated measurements.

## Results

### Sample

Of the 48 patients enrolled in CRTG and PIG groups (Table 1), only 27 completed the 2 IPQ-R questionnaires (DBS-45 days, DBS-1 day) and were retained for analysis: 13 of them were allocated to CRTG and 14 of them to PIG group. The IPQ-R was not completed by some patients, because it was not included in the initial study protocol. To improve our research aims, the IPQ-R was introduced in the methodology after acceptance by the CPP Est III Ethical Committee (04/03/2010). The mean overall age was 59 ± 5.94, and PD duration was 9.89 ± 4.15. CRTG and PIG did not differ concerning sociodemographic and medical (motor score UPDRS-3 (Fahn and Elton 1987), levodopa daily dosage) characteristics. These data are presented in Table 2.

### Illness perception

Illness perception data are presented in Table 3. The scores for “personal control” over PD were similar at DBS-45 days in the two groups, whereas it appears significantly higher at DBS-1 day for restructured patients than for the others (*p* = 0.039). No other significant time or group effect was found for IPQ-R dimensions.

At DBS-45 days, the mean scores for the dimensions of personal control, timeline cyclical, and consequences are the highest. The dimensional mean scores for timeline acute and treatment control appear the lowest.

<figure><img src="image_4.png" /><figcaption>**Table 1** Flow diagram of the enrollment of PD patients in the study</figcaption></figure>

<figure><img src="image_5.png" /></figure>
<table><caption>**Table 2** Patient demographic and PD-specific data (N=27)</caption><thead><tr><th>Group</th><th>Mean</th><th>SD</th><th>t</th><th>p</th></tr></thead><tbody><tr><td>Age (years)</td><td></td><td></td><td></td><td></td></tr><tr><td>CRTG</td><td>59.77</td><td>6.81</td><td>0.64</td><td>0.950</td></tr><tr><td>PIG</td><td>59.62</td><td>5.16</td><td></td><td></td></tr><tr><td>Total</td><td>59.44</td><td>5.94</td><td></td><td></td></tr><tr><td>Disease duration (years)</td><td></td><td></td><td></td><td></td></tr><tr><td>CRTG</td><td>9.31</td><td>3.75</td><td>-0.724</td><td>0.483</td></tr><tr><td>PIG</td><td>10.54</td><td>4.74</td><td></td><td></td></tr><tr><td>Total</td><td>9.89</td><td>4.15</td><td></td><td></td></tr><tr><td>UPDRS 3 (total score on condition)</td><td></td><td></td><td></td><td></td></tr><tr><td>CRTG</td><td>19.08</td><td>12.78</td><td>1.061</td><td>0.310</td></tr><tr><td>PIG</td><td>15.38</td><td>10.52</td><td></td><td></td></tr><tr><td>Total</td><td>17.98</td><td>10.45</td><td></td><td></td></tr><tr><td>Levodopa daily dosage (mg/day)</td><td></td><td></td><td></td><td></td></tr><tr><td>CRTG</td><td>1323.38</td><td>482.37</td><td>0.864</td><td>0.405</td></tr><tr><td>PIG</td><td>1153.27</td><td>519.01</td><td></td><td></td></tr><tr><td>Total</td><td>1203.57</td><td>521.12</td><td></td><td></td></tr></tbody></table>

Discussion

STN-DBS represents a gold standard in the treatment of PD fluctuating patients. While a remarkable improvement in motor symptoms is observed, a post-operative deception is highlighted in some patients, inducing impaired emotional aspects or social maladjustment. Here, we question the nature of illness perception in PD fluctuating patients candidates to DBS, and the impact of a pre-operative cognitive restructuration on illness perceptions.

First, considering the seven-dimensional scores of the IPQ-R, we can qualitatively describe illness perceptions. On the one hand, we can observe that some dimensions, namely “consequences”, “ timeline cyclical”, and “personal control” present higher scores than others at DBS-45 days. At this disease stage, in advanced PD, it seems consistent that PD induces major impact in patient’s life, by diminishing autonomy and causing possible mental impairment (depression, anxiety, apathy) in somewhat young patients (mean age 59,44 years). Due to the degenerative character of PD, the pharmacological treatment needs to be consistently adapted to symptoms increase, which appears consistent with Hurt

<table><caption>**Table 3** IPQ-R dimensional mean scores for first and second pre-operative administration (N=27)</caption><thead><tr><th rowspan="2">IPQ-R dimensions</th><th rowspan="2">Group</th><th rowspan="2">n</th><th colspan="2">First pre-operative administration (DBS-45 days)</th><th colspan="2">Second pre-operative administration (DBS-1 day)</th><th colspan="2">Time effect</th><th colspan="2">Group effect</th></tr><tr><th>Mean</th><th>SD</th><th>Mean</th><th>SD</th><th>F</th><th>p</th><th>F</th><th>p</th></tr></thead><tbody><tr><td rowspan="3">Timeline acute</td><td>CRTG</td><td>13</td><td>2.72</td><td>0.39</td><td>2.87</td><td>0.41</td><td rowspan="3">2.380</td><td rowspan="3">0.135</td><td rowspan="3">0.347</td><td rowspan="3">0.561</td></tr><tr><td>PIG</td><td>14</td><td>2.76</td><td>0.47</td><td>3.00</td><td>0.68</td></tr><tr><td>Total</td><td>27</td><td>2.74</td><td>0.42</td><td>2.94</td><td>0.56</td></tr><tr><td rowspan="3">Consequences</td><td>CRTG</td><td>13</td><td>3.35</td><td>0.31</td><td>3.31</td><td>0.39</td><td rowspan="3">0.145</td><td rowspan="3">0.707</td><td rowspan="3">1.936</td><td rowspan="3">0.176</td></tr><tr><td>PIG</td><td>14</td><td>3.55</td><td>0.50</td><td>3.52</td><td>0.53</td></tr><tr><td>Total</td><td>27</td><td>3.45</td><td>0.43</td><td>3.42</td><td>0.47</td></tr><tr><td rowspan="3">Personal control</td><td>CRTG</td><td>13</td><td>3.54</td><td>0.42</td><td>3.62</td><td>0.29</td><td rowspan="3">1.726</td><td rowspan="3">0.201</td><td rowspan="3">4.762</td><td rowspan="3">0.039</td></tr><tr><td>PIG</td><td>14</td><td>3.50</td><td>0.43</td><td>3.14</td><td>0.51</td></tr><tr><td>Total</td><td>27</td><td>3.52</td><td>0.42</td><td>3.37</td><td>0.47</td></tr><tr><td rowspan="3">Treatment control</td><td>CRTG</td><td>13</td><td>2.57</td><td>0.44</td><td>2.71</td><td>0.71</td><td rowspan="3">1.598</td><td rowspan="3">0.218</td><td rowspan="3">0.761</td><td rowspan="3">0.391</td></tr><tr><td>PIG</td><td>14</td><td>2.70</td><td>0.61</td><td>2.91</td><td>0.68</td></tr><tr><td>Total</td><td>27</td><td>2.64</td><td>0.53</td><td>2.81</td><td>0.69</td></tr><tr><td rowspan="3">Illness coherence</td><td>CRTG</td><td>13</td><td>3.05</td><td>0.51</td><td>2.98</td><td>0.54</td><td rowspan="3">1.464</td><td rowspan="3">0.238</td><td rowspan="3">0.708</td><td rowspan="3">0.408</td></tr><tr><td>PIG</td><td>14</td><td>3.67</td><td>2.33</td><td>3.01</td><td>0.62</td></tr><tr><td>Total</td><td>27</td><td>3.37</td><td>1.72</td><td>3.00</td><td>0.58</td></tr><tr><td rowspan="3">Timeline cyclical</td><td>CRTG</td><td>13</td><td>3.48</td><td>0.43</td><td>3.40</td><td>0.66</td><td rowspan="3">0.000</td><td rowspan="3">1.000</td><td rowspan="3">0.438</td><td rowspan="3">0.514</td></tr><tr><td>PIG</td><td>14</td><td>3.54</td><td>0.59</td><td>3.61</td><td>0.74</td></tr><tr><td>Total</td><td>27</td><td>3.51</td><td>0.46</td><td>3.51</td><td>0.69</td></tr><tr><td rowspan="3">Emotional representation</td><td>CRTG</td><td>13</td><td>3.15</td><td>0.28</td><td>2.86</td><td>0.50</td><td rowspan="3">2.521</td><td rowspan="3">0.125</td><td rowspan="3">0.077</td><td rowspan="3">0.784</td></tr><tr><td>PIG</td><td>14</td><td>3.12</td><td>0.73</td><td>2.99</td><td>0.60</td></tr><tr><td>Total</td><td>27</td><td>3.14</td><td>0.55</td><td>2.93</td><td>0.55</td></tr></tbody></table>
et al. (2015) who explain that illness perceptions in PD are influenced by disease duration and disease severity.

In these patients, perception of personal control is high, appearing relatively consistent with the specificity of these patients' status. Indeed, they suffer from an advanced degenerative disease with no possible cure, but patients still search for new pharmacological and non-pharmacological treatments, such as DBS, to improve their condition. It appears similar to the process observed concerning the use of coping strategies in PD patients. In the course of PD, many adaptative changes are necessary to cope with the symptoms and their consequences in daily-life autonomy. Patients use a variety of coping strategies and modify their coping style which are partially influenced by their neuropsychological and executive profile (Soulas et al. 2011). It was described that PD patients under dopatherapy, like our pre-operative patients, use higher instrumental coping strategies (i.e., searching for information, advices, or technical assistance) than stimulated patients (Montel and Bungener 2009). The latter have the benefit of the most elaborated treatment available, which is typically what our pre-operative patients hope for and what they search through instrumental coping strategies. Even though Hurt et al. (2015) identified a high perception of control as negative, it appears necessary and a determining step in disease' management for pre-operative PD patients who are about to undergo neurostimulation.

On the other hand, the dimensional scores of “ timeline acute” and “treatment control” appear the lowest. Indeed, the beneficial effect of Levodopa replacement therapy appears limited at this disease stage, explaining the low perception of treatment control. However, the perspective of benefiting of STN-DBS should allow PD patients to balance their perception of the control of their symptoms by treatments, as neurosurgery generates some hope for future improvement. In line with this, even if patients live with their PD their whole life, the specificity of this pre-operative hope-supplier state, induces that the perception of the acute and chronical character of PD is not clearly defined. This search for treatment control appears appropriate, in this specific status of PD, to the first level of control in PD acceptance (Eccles et al. 2011). The control of treatment and symptoms conduces to PD acceptance. The dimensions of “illness coherence” and “emotional perception” indicate at DBS-45 days that PD appears not quite coherent for the patients, characterized by unpredictable motor and emotional fluctuations. This appears consistent with disease stage, i.e., pre-operative PD patients suffering from advanced disease with major impact of symptoms on their autonomy, their psychological well-being, and quality of life.

Second, the seven-dimensional scores of the IPQ-R were quite stable over time, i.e., between DBS-45 and DBS-1 day, even in case of cognitive restructuration occurring between the two evaluations of the IPQ-R. This

seems to result from some stability of illness perceptions in PD pre-operative patients. Indeed, in these patients with advanced PD, it seems that the experience of the disease, which altered mobility and autonomy in daily life and induces modifications in the personal status, had progressively designed their illness perceptions about PD. These illness perceptions in pre-operative PD patients seem very stable and consistent over time, but also resistant to cognitive restructuration, as if the experience of disease was dominant in illness perception construction. We note that Hurt et al. (2015) emphasized that illness perception in PD is influenced by disease duration and severity. So, the possible implication of the experience of PD for many years in the construction of illness perception appears coherent and dominant confronted to the brief cognitive restructuration proposed. Considering the perceptions of cyclical timeline, personal and treatment control Baertschi et al. (2020) recently described quite stable perceptions of PD through an 18-months pre- and post-operative follow-up of neurostimulated PD.

Third, even if illness perceptions seem stable in pre-operative PD patients, it appears that the dimension of “personal control” was modulated by cognitive restructuration. Indeed, PD benefiting from cognitive restructuration of dysfunctional cognitions about DBS result seems to present higher personal control than non-structured interview that the patients did the day before DBS. Even if DBS appears to be the last chance treatment for most patients, in these particular patients, cognitive restructuration may have contributed to modulate cognitions and emphasize that patients themselves do have a control over their disease and their symptoms. It has permitted to externalize disease symptoms, to consider that patients should have an impact on the symptoms of their PD and that this is of importance in this context of incurable disease. This leads patients to consider that they are not only a disease, but that they are also a person having some control over their PD. This appears to be of great importance in the management of such a degenerative disease in which the goal is, if possible for the patient, to become independent in the management of his symptoms. It highlights the possible influence of structured interventions like psychotherapy with cognitive restructuration or therapeutical education programs on PD patients.

Some limitations are obviously apparent. The pre-operative psychological protocol appears short, constituted of two interviews through a short period of 2 months pre-operatively, but it was thought to be individualized, blinded, and adapted to the pre-operative hospital management of PD. What is more, our sample of 27 pre-operative PD patients was relatively small, as it represents a specific sample of PD patients in whom neurosurgery is accessible. This may have modulated the statistical effect of the impact of the pre-operative cognitive restructuration therapy on illness perception.

<figure><img src="image_6.png" /></figure>
## Conclusion

The considerations of illness perceptions in such an invalidating disease as PD seems of great importance, even if it is not actually done in the current management of pre-operative patients. Illness perceptions seem quite stable over time, maybe largely influenced by the experience of disease-related disability in advanced PD. Even though, this illness perception appears accessible to cognitive restructuration to a certain extent, it gives back PD patients a certain feeling of control over their disease and their life while they are benefiting of DBS. So, integration of illness perception in the management of PD, specifically during pre-operative psychological preparation based on cognitive restructuration, seems to be of great interest to adjust and individualize therapeutical education, to improve treatment impact with enhanced feeling of control over the disease, and maybe to reduce dysfunctional expectations concerning the post-operative evolution of PD.

**Acknowledgements** The authors thank PD patients for their motivated participation to the study.

**Author contributions** RS, ES, and MM contributed to the conception and the design of the study, and to the material preparation. SC-C, SF, PV, P-ML, and MM contributed to the data collection. Data analysis and the first draft was made by MM and ES. All authors commented on previous versions of the article, and all authors read and approved the final manuscript.

**Funding** This work was supported by the French Clinical Research Program under Grant (No. IDRCB 2008-A00655-50). Data are kept and available on demand to the CHRU de Nancy.

**Data Availability** The author confirms that all data generated or analysed during this study over illness perceptions are included in this published article.

## Declarations

**Conflict of interest** The authors declare that there is no conflict of interest with respect to the research, authorship, and/or publication of this article.

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