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Background: A better understanding of the subjective experience of living with Parkinson's disease (PD) and the factors that influence this experience can be used to improve wellbeing of people with PD (PwP). Objective: To gain more insight in the subjective experience of PD from the PwP's perspective, and the factors that contribute to this experience. Methods: In this qualitative review, we performed a systematic search of qualitative studies discussing the subjective experience of PD and extracted reported themes (first order themes). Using a meta-ethnographic approach, we categorized the first order themes into second order themes, and created a third order construct: a holistic model of the subjective experience of living with PD. Results: We included 20 studies with a total sample of 279 PwP. Data-extraction yielded 227 first order themes, which were categorized into the second order themes: 1) Awareness, 2) Disruption, 3) Adjustment, 4) The external environment, and 5) The changing self. With these themes, we developed the "model of dialectic change" which conceptualizes life with PD as a transformative journey, wherein PwP employ strategies to stabilize their changeable relationship with their external environment, while simultaneously redefining their self-concept. Conclusion: Our findings indicate that not only the symptoms of PD, but also the manner in which these cause disruptions in the PwP's interaction with their personal environment and self-concept, determine the subjective experience of PD and quality of life. Some PwP experience problems with adjusting, resulting in psychological distress. This calls for a holistic, multidisciplinary and participatory approach of PD. [ABSTRACT FROM AUTHOR]

Objective: Psychological distress has a high impact on quality of life in patients with multiple sclerosis (MS), Parkinson's disease (PD), and Huntington's disease (HD). Studies have shown that cognitive behavioral therapy (CBT) and mindfulness-based therapies (MBTs) are successful in reducing psychological distress in patients with anxiety, depressive, and chronic somatic disorders. We aimed to investigate the effectiveness of these therapies in MS, PD, and HD patients.Methods: We performed a comprehensive literature search in PubMed, PsycINFO, Embase and the Cochrane Central Register of Controlled Trials up to March 2018. Randomized controlled trials (RCTs) investigating a CBT or MBT and reporting psychological outcome measures were included. Two separate meta-analyses were performed; one on studies comparing psychological therapy with a treatment as usual or waitlist condition and one on studies with active treatment control conditions.Results: The first meta-analysis (N = 12 studies, 8 in MS and 4 in PD populations) showed a significant effect size of g = 0.51 in reducing psychological distress. The second meta-analysis (N = 7 studies, in MS populations) showed a mean effect size of g = 0.36. No RCTs were found in HD populations. The overall quality of the included studies was low and considerable heterogeneity was found. No evidence was found for publication bias.Conclusion: CBT and MBTs have a small to moderate effect on reducing psychological distress in patients with PD and MS. However, more research with better methodological quality and larger study samples is warranted, especially in HD patient populations. [ABSTRACT FROM AUTHOR]

Aim: Anxiety has a negative impact on daily functioning and quality of life in patients with Parkinson's disease (PD). This study aims at assessing which sociodemographic and clinical characteristics predict the course of anxiety in early PD.Methods: The participants of this two-year prospective cohort study were recently diagnosed PD patients not receiving psychiatric medications or dopamine replacement therapy at baseline. Assessments were performed annually after baseline. The primary outcome measure was anxiety, as measured with the State-Trait Anxiety Inventory (STAI). Covariates were age, gender, family history, striatal dopamine transporter binding ratios, and severity of motor and non-motor features of PD at baseline. Data were analyzed using a mixed model analysis.Results: Inclusion criteria were met by 306 subjects. An increase in STAI total score was predicted by older age, lower score on the Montreal Cognitive Assessment, and the presence of a probable REM-sleep behavior disorder (RBD) at baseline. A decrease in STAI total score over time was predicted by a higher baseline score on the 15-item Geriatric Depression Scale, compulsive behavior at baseline and a family history of PD.Conclusions: More severe baseline anxiety was associated with compulsive behavior and depressive symptoms. These symptoms had a parallel course, showing a decrease over time. An increase in anxiety was predicted by older age, worse cognitive functioning and the presence of RBD. Our findings, when replicated in a sample of PD patients in a more advanced disease stage, could provide starting points for prevention of anxiety in PD patients. [ABSTRACT FROM AUTHOR]

Introduction While anxiety, depression and insomnia frequently (co-)occur in Parkinson's disease (PD) patients, little is known about their temporal relationship. In this study, we tested two hypotheses: i) insomnia predicts an increase in symptoms of depression or anxiety and ii) anxiety or depression at baseline predicts insomnia in PD patients six months later. Methods We used longitudinal data from a prospective cohort study of early-stage, medication-naïve PD patients. Primary outcome measures were: anxiety symptoms, measured with the State-Trait Anxiety Inventory (STAI); depressive symptoms, measured with the 15-item Geriatric Depression Scale (GDS-15); and insomnia, defined as a score ≥ 2 on item 1.7 of the Movement Disorder Society – Unified Parkinson's Disease Rating Scale. We performed linear and logistic regression analyses, correcting for baseline value of the respective outcome variable. Results Baseline insomnia was not associated with GDS-15 or STAI total score at follow-up. In a post hoc analysis, we found that insomnia predicted a higher STAI State score (B(SE) = 2.50 (1.07), p < 0.05), while the association with the STAI Trait score was not significant. Baseline STAI scores (B(SE) = 0.02 (0.01), p = 0.001) and GDS-15 score (B(SE) = 0.15 (0.05), p < 0.001) were significantly associated with insomnia at follow-up. Conclusion Symptoms of anxiety and depression may constitute a risk factor for insomnia in PD. The relationship between insomnia and anxiety is bidirectional, which suggests that both anxiety and sleep disorders can start a negative spiral in PD patients, where one enhances the other. Independent clinical attention for these symptoms in PD patients is therefore warranted. [ABSTRACT FROM AUTHOR]

Background: A disturbed circadian rhythm seems to be a causal factor in the occurrence of depressive disorders in patients with Parkinson's disease (PD). The circadian rhythm can be restored with light. Therefore, Bright Light Therapy (BLT) might be a new treatment option for depression in PD patients. Methods/design: In this double-blind controlled trial, 84 subjects with idiopathic PD are randomized to either BLT or a control light condition. The BLT condition emits white light with an intensity of 10,000 Lux, while the control device emits dim white light of 200 Lux, which is presumed to be too low to influence the circadian rhythm. Subjects receive 30 min of home treatment twice daily for three months. Timing of treatment is based on the individual chronotype. After finishing treatment, subjects enter a follow-up period of six months. The primary outcome of the study is the severity of depressive symptoms, as measured with the Hamilton Depression Rating Scale. Secondary outcomes are alternative depression measures, objective and subjective sleep measures, and salivary melatonin and cortisol concentrations. For exploratory purposes, we also assess the effects on motor symptoms, global cognitive function, comorbid psychiatric disorders, quality of life and caregiver burden. Data will be analyzed using a linear mixed models analysis. Discussion: Performing a placebo-controlled trial on the effects of BLT in PD patients is challenging, as the appearance of the light may provide clues on the treatment condition. Moreover, fixed treatment times lead to an improved sleep-wake rhythm, which also influences the circadian system. With our study design, we do not compare BLT to placebo treatment, i.e. an ineffective control treatment. Rather, we compare structuring of the sleep-wake cycle in both conditions with additional BLT in the experimental condition, and additional dim light in the control condition. Participants are not informed about the exact details of the two light devices and the expected therapeutic effect, and expectancies are rated prior to the start of treatment. Ideally, the design of a future study on BLT should include two extra treatment arms where BLT and control light are administered at random times. [ABSTRACT FROM AUTHOR]

Introduction Anxiety disorders are highly prevalent in patients with Parkinson's disease (PD) and have a major impact on wellbeing. They nevertheless receive limited scientific attention. This study aimed to establish the symptom dimensions of anxiety in PD, and their relationship with depression, autonomic failure and motor symptoms. Methods In this cross-sectional observational study, symptoms of anxiety were measured with the Beck Anxiety Inventory (BAI) in 294 PD patients. Symptom dimensions of anxiety in PD were explored through principal component analysis (PCA) of BAI items. The relationship between anxiety and depressive, autonomic and motor symptoms was assessed through PCA and regression analyses. Results Clinically relevant symptoms of anxiety were present in 45% of patients. PCA of the BAI resulted in five subscales, corresponding to a single affective and four somatic symptom dimensions (thermoregulation, hypotension, hyperventilation and trembling) of anxiety. Symptoms of anxiety and depression displayed a large overlap. All somatic BAI subscales were significantly influenced by motor and autonomic symptoms, while the affective subscale was not. Conclusion Anxiety in PD comprises affective and somatic symptom dimensions. The affective subscale of the BAI is not influenced by motor or autonomic symptoms, and may therefore prove useful for future research. Scores on the somatic subscales of the BAI were associated with autonomic failure and motor impairment, demonstrating a strong interplay between motor and non-motor symptoms in PD. These results stress the importance of a holistic approach of anxiety in PD. [ABSTRACT FROM AUTHOR]

Sleep disorders are common in Parkinson's disease (PD) and seem to be strongly associated with depression. It has been suggested that sleep disorders as well as depression are caused by a disturbed circadian rhythm. Indeed, PD patients are prone to misalignment of their circadian rhythm due to various factors, and many patients with PD display a phase advance of their circadian rhythm. Current treatment options for sleep disorders and depression in patients with PD are limited and can have serious side effects; alternative treatments are therefore badly needed. Bright light therapy (BLT) restores circadian rhythmicity effectively in mood- and sleep-disturbed patients without PD. The few studies that focused on the efficacy of BLT in patients with PD demonstrated a positive effect of BLT not only on sleep and mood but also on motor function. More research on the neurobiology and efficacy of BLT in PD is warranted. [ABSTRACT FROM AUTHOR]

Introduction: While anxiety, depression and insomnia frequently (co-)occur in Parkinson's disease (PD) patients, little is known about their temporal relationship. In this study, we tested two hypotheses: i) insomnia predicts an increase in symptoms of depression or anxiety and ii) anxiety or depression at baseline predicts insomnia in PD patients six months later.Methods: We used longitudinal data from a prospective cohort study of early-stage, medication-naïve PD patients. Primary outcome measures were: anxiety symptoms, measured with the State-Trait Anxiety Inventory (STAI); depressive symptoms, measured with the 15-item Geriatric Depression Scale (GDS-15); and insomnia, defined as a score ≥ 2 on item 1.7 of the Movement Disorder Society - Unified Parkinson's Disease Rating Scale. We performed linear and logistic regression analyses, correcting for baseline value of the respective outcome variable.Results: Baseline insomnia was not associated with GDS-15 or STAI total score at follow-up. In a post hoc analysis, we found that insomnia predicted a higher STAI State score (B(SE) = 2.50 (1.07), p < 0.05), while the association with the STAI Trait score was not significant. Baseline STAI scores (B(SE) = 0.02 (0.01), p = 0.001) and GDS-15 score (B(SE) = 0.15 (0.05), p < 0.001) were significantly associated with insomnia at follow-up.Conclusion: Symptoms of anxiety and depression may constitute a risk factor for insomnia in PD. The relationship between insomnia and anxiety is bidirectional, which suggests that both anxiety and sleep disorders can start a negative spiral in PD patients, where one enhances the other. Independent clinical attention for these symptoms in PD patients is therefore warranted. [ABSTRACT FROM AUTHOR]

Background: In Parkinson's disease (PD) patients, fluctuations in symptoms commonly occur after many years of dopamine replacement therapy. The so-called wearing-off phenomenon exists of both motor and non-motor symptoms, such as rigidity and anxiety. Current treatment options are limited and an integrated approach is needed to address the complex interactions between motor and non-motor symptoms. Since wearing-off is eventually inevitable, treatment needs to focus on coping, acceptance and self-efficacy. We developed the body awareness training, named BEWARE, combining physical therapy with acceptance and commitment therapy to help PD patients deal better with wearing-off related anxiety (WRA).Methods: This was an investigator-blinded randomized controlled trial. Forty PD patients with WRA were randomly assigned to the BEWARE or to the treatment as usual (TAU) condition. Assessments were performed prior to and immediately after the treatment period, and at 3-months follow up. The primary outcome was self-efficacy, secondary outcomes focused on mobility, daily functioning, anxiety, depression and quality of life.Results: There was no significant improvement in self-efficacy in the BEWARE treatment condition when compared to TAU. However, standing balance and emotional wellbeing showed a significant improvement, and feelings of stigmatization showed a trend-significant decrease in the BEWARE condition.Conclusions: We consider the BEWARE training to be a promising therapeutic approach to address WRA. Improvement points from the participants included 1) less frequent but longer therapy sessions; 2) active involvement of caregivers; and 3) the development of a supportive workbook. The optimized treatment protocol needs further evaluation in a phase III RCT.Trial Registration: ClinicalTrials.gov identifier: NCT02054845. [ABSTRACT FROM AUTHOR]

Background: The wearing-off phenomenon in patients with Parkinson's disease (PD) is a complication of prolonged levodopa usage. During this phenomenon, motor symptoms such as rigidity and freezing re-emerge. This is often accompanied by non-motor symptoms, including anxiety, the so-called wearing-off related anxiety (WRA). Current treatment options are limited and typically focus on either the physical or mental aspects of wearing-off. An integrated approach seems warranted in order to optimally address the complex reciprocal interactions between these aspects. Also, because wearing-off is eventually inescapable, treatment needs to focus on coping, acceptance, and self-efficacy. We therefore developed an integrated body awareness intervention, combining principles from physical therapy with acceptance and commitment therapy to teach patients to deal with WRA. This study will investigate whether this new intervention, named BEWARE, is more effective than treatment as usual in increasing self-efficacy.Methods/design: This is a single-blinded randomized controlled trial in 36 PD patients who experience WRA. Subjects will be recruited from the outpatient clinic for movement disorders of the VU University Medical Center. After providing written informed consent, patients will be randomly assigned to an experimental (BEWARE) or treatment-as-usual (physical therapy) group. Clinical assessments will be performed prior to the intervention, directly after the 6-week intervention period, and at 3-month naturalistic follow-up by a blinded investigator not involved in the study. The primary outcome measure is self-efficacy, and secondary outcomes focus on mobility, daily functioning, anxiety, and quality of life.Discussion: Because wearing-off is an inevitable consequence of levodopa therapy and current treatment options are insufficient, a multidisciplinary intervention that addresses both physical and mental aspects of wearing-off in PD may foster additional benefits for treating WRA in PD patients over mono-disciplinary care alone.Trial Registration: ClinicalTrials.gov identifier: NCT02054845. Date of registration: 30 January 2014. [ABSTRACT FROM AUTHOR]

Background: The wearing-off phenomenon in patients with Parkinson’s disease (PD) is a complication of prolonged levodopa usage. During this phenomenon, motor symptoms such as rigidity and freezing re-emerge. This is often accompanied by non-motor symptoms, including anxiety, the so-called wearing-off related anxiety (WRA). Current treatment options are limited and typically focus on either the physical or mental aspects of wearing-off. An integrated approach seems warranted in order to optimally address the complex reciprocal interactions between these aspects. Also, because wearing-off is eventually inescapable, treatment needs to focus on coping, acceptance, and self-efficacy. We therefore developed an integrated body awareness intervention, combining principles from physical therapy with acceptance and commitment therapy to teach patients to deal with WRA. This study will investigate whether this new intervention, named BEWARE, is more effective than treatment as usual in increasing self-efficacy. Methods/Design: This is a single-blinded randomized controlled trial in 36 PD patients who experience WRA. Subjects will be recruited from the outpatient clinic for movement disorders of the VU University Medical Center. After providing written informed consent, patients will be randomly assigned to an experimental (BEWARE) or treatment-as-usual (physical therapy) group. Clinical assessments will be performed prior to the intervention, directly after the 6-week intervention period, and at 3-month naturalistic follow-up by a blinded investigator not involved in the study. The primary outcome measure is self-efficacy, and secondary outcomes focus on mobility, daily functioning, anxiety, and quality of life. Discussion: Because wearing-off is an inevitable consequence of levodopa therapy and current treatment options are insufficient, a multidisciplinary intervention that addresses both physical and mental aspects of wearing-off in PD may foster additional benefits for treating WRA in PD patients over mono-disciplinary care alone. [ABSTRACT FROM AUTHOR]

Highlights: [•] Depression in Parkinson's disease (PD) is associated with reduced limbic activity. [•] Impulse control disorders (ICD) in PD are associated with increased limbic activity. [•] Depression and ICD in PD frequently coincide suggesting a common pathophysiology. [•] Reward-related ventral striatal dopamine release is important for both disorders. [•] Ventral striatal dopamine denervation might be a common neurobiological substrate. [ABSTRACT FROM AUTHOR]