Journal of Parkinson's Disease - Volume 14, issue 7

Authors: Storch, Alexander | Bremer, Alexander | Gandor, Florin | Odin, Per | Ebersbach, Georg | Löhle, Matthias

Article Type: Research Article

Abstract: Background: Pain fluctuations are a characteristic phenomenon in advanced Parkinson’s disease (PD), but their temporal association with motor and non-motor symptom (NMS) fluctuations remains largely enigmatic. Moreover, data on their importance for disease severity perception and health-related quality-of-life (hr-QoL) is limited. Objective: To dissect pain fluctuations with respect to pain type and frequency patterns, and their association with motor and non-motor fluctuations. Methods: Prospective observational cohort study in advanced PD assessing symptom fluctuations by simultaneous hourly ratings using the PD Home diary (Off, On, Dyskinetic state), a pain diary (assessing 9 pain types) and a non-motor …diary (10 key NMS) based on validated instruments. Results: Forty-seven out of 55 eligible participants with fluctuating PD (51% men, median age 65, median disease duration 10 years) had sufficient datasets (>95% of hours) from 2 consecutive days. Pain was reported in 35% of waking hours with clear circadian rhythm peaking in early morning Off periods and clustering during motor Off state (49% of Off state hours with pain). Main NMS co-fluctuating with pain were “Fatigue” and “Inner Restlessness”. Simultaneous assessment of global disease severity by participants revealed that pain was associated with worse disease severity only in motor On and Dyskinetic state but not in Off state, which translated into significant correlations of daily pain times with hr-QoL only during motor On and Dyskinetic state. Conclusions: Aside from treating motor Off periods, specific recognition of pain particularly during motor On and Dyskinetic state comprises an important aspect for disease management in advanced PD. Show more

Keywords: Parkinson’s disease, pain, motor fluctuations, non-motor fluctuations, fatigue, dyskinesia, diary, PD home diary

DOI: 10.3233/JPD-240026

Citation: Journal of Parkinson's Disease, vol. 14, no. 7, pp. 1451-1468, 2024

Authors: Stopic, Vasilija | Jost, Stefanie T. | Haupt, Julius | Brandt, Gregor A. | van der Linden, Christina | Petry-Schmelzer, Jan Niklas | Dembek, Till A. | Fink, Gereon R. | Batzu, Lucia | Rizos, Alexandra | Chaudhuri, K. Ray | Dafsari, Haidar S. | Gruber, Doreen | Ebersbach, Georg | Kessler, Josef | Barbe, Michael T. | Sauerbier, Anna

Article Type: Research Article

Abstract: Background: Stigma is a relevant aspect of Parkinson’s disease (PD). Specific stigma tools are needed to address the complex construct of stigma in PD comprehensively. Objective: To test the dimensionality and psychometric properties of the newly developed Parkinson’s Disease Stigma Questionnaire (PDStigmaQuest). Methods: In this multi-center, cross-sectional study including PD patients and healthy controls, the dimensionality of the PDStigmaQuest was examined through exploratory factor analysis. Acceptability and psychometric properties were investigated. PDStigmaQuest scores of patients and healthy controls were compared. Results: In total, 201 PD patients and 101 healthy controls were included in the …final analysis. Results suggested high data quality of the PDStigmaQuest (0.0001% missing data for patients). The exploratory factor analysis produced four factors: felt stigma, hiding, enacted stigma: rejection, and enacted stigma: patronization, explaining 47.9% of variance. An optional work domain for employed patients was included. Moderate floor effects and skewness, but no ceiling effects were found. Cronbach’s alpha of 0.85 indicated high internal consistency. Calculated item-total correlations met standard criteria. Test-retest reliability was high (r s  = 0.83). PDStigmaQuest scores correlated significantly with other stigma measures (r s  = 0.56–0.69) and were significantly higher in patients than in healthy controls and higher in patients with depressive symptoms than in those without. Conclusions: The patient-reported 18-item PDStigmaQuest showed strong psychometric properties of validity and reliability. Our results suggest that the PDStigmaQuest can be used to assess and evaluate stigma comprehensively in PD, which will improve our understanding of the construct of PD stigma. Show more

Keywords: Stigma, quality of life, validation study, questionnaire

DOI: 10.3233/JPD-240224

Citation: Journal of Parkinson's Disease, vol. 14, no. 7, pp. 1469-1480, 2024

Authors: Cressatti, Marisa | Pinilla-Monsalve, Gabriel D. | Blais, Mathieu | Normandeau, Catherine P. | Degroot, Clotilde | Kathol, Iris | Bogard, Sarah | Bendas, Anna | Camicioli, Richard | Dupré, Nicolas | Gan-Or, Ziv | Grimes, David A. | Kalia, Lorraine V. | MacDonald, Penny A. | McKeown, Martin J. | Martino, Davide | Miyasaki, Janis M. | Schlossmacher, Michael G. | Stoessl, A. Jon | Strafella, Antonio P. | Fon, Edward A. | Monchi, Oury

Article Type: Research Article

Abstract: Background: Enhancing the interactions between study participants, clinicians, and investigators is imperative for advancing Parkinson’s disease (PD) research. The Canadian Open Parkinson Network (C-OPN) stands as a nationwide endeavor, connecting the PD community with ten accredited universities and movement disorders research centers spanning, at the time of this analysis, British Columbia, Alberta, Ontario, and Quebec. Objective: Our aim is to showcase C-OPN as a paradigm for bolstering national collaboration to accelerate PD research and to provide an initial overview of already collected data sets. Methods: The C-OPN database comprises de-identified data concerning demographics, symptoms and signs, …treatment approaches, and standardized assessments. Additionally, it collects venous blood-derived biomaterials, such as for analyses of DNA, peripheral blood mononuclear cells (PBMC), and serum. Accessible to researchers, C-OPN resources are available through web-based data management systems for multi-center studies, including REDCap. Results: As of November 2023, the C-OPN had enrolled 1,505 PD participants. The male-to-female ratio was 1.77:1, with 83% (n  = 1098) residing in urban areas and 82% (n  = 1084) having pursued post-secondary education. The average age at diagnosis was 60.2±10.3 years. Herein, our analysis of the C-OPN PD cohort encompasses environmental factors, motor and non-motor symptoms, disease management, and regional differences among provinces. As of April 2024, 32 research projects have utilized C-OPN resources. Conclusions: C-OPN represents a national platform promoting multidisciplinary and multisite research that focuses on PD to promote innovation, exploration of care models, and collaboration among Canadian scientists. Show more

Keywords: Parkinson’s disease, open science, cohort, research platform, Canada

DOI: 10.3233/JPD-240213

Citation: Journal of Parkinson's Disease, vol. 14, no. 7, pp. 1481-1494, 2024

Authors: Alshimemeri, Sohaila | AlSudais, Hamood | Alamri, Nada K. | Alshoumar, Abdulaziz M. | Bin Dher, Shatha K. | Maashi, Mohammed Hassan

Article Type: Research Article

Abstract: Background: Parkinson’s disease (PD) is a disabling neurodegenerative movement disorder. Most PD patients are looked after by caregivers who are close to them regardless of their relationship. Caregivers may experience a notable impact on their mental health as they dedicate a significant amount of time to the patient while observing the progression of the disease. Objective: The aim of this study was to evaluate the level of burden, depression, anxiety, and stress among caregivers of PD patients. Methods: We conducted a cross-sectional analysis between July and September 2023 among caregivers of PD patients following in the …Movement Disorders Clinic at King Khalid University Hospital in Riyadh, Saudi Arabia, and through the Saudi Parkinson’s Society. The data collection was done anonymously through an electronic self-administered questionnaire. Caregiver burden was assessed by using the validated Arabic version of the Zarit Burden Interview (ZBI) scale, and the Depression Anxiety Stress Scale (DASS) was used to assess the presence and level of anxiety and depression. Results: There were 118 caregivers (53.39% female, 33.9% aged between 35– 45 years, and 73.73% were sons/daughters) caring for 118 patients (57.63%, male, 38.98% aged between 66– 76). The ZBI score was highest among sibling caregivers. Moreover, burden scores were higher among those who provided care more frequently than others. Conclusions: Our study revealed that PD caregivers face a high risk of care burden, especially those who are siblings and spend longer periods in patient care. Additionally, female caregivers reported higher rates of depression, anxiety, and stress. Show more

Keywords: Parkinson’s disease, caregiver burden, burden, anxiety, depression, stress

DOI: 10.3233/JPD-240014

Citation: Journal of Parkinson's Disease, vol. 14, no. 7, pp. 1495-1505, 2024

Authors: Hor, Jia Wei | Toh, Tzi Shin | Lim, Shen-Yang | Tan, Ai Huey

Article Type: Review Article

Abstract: There is increasing evidence that microbial-based therapies can be useful in people with Parkinson’s disease (PD). In this viewpoint, we provide a state-of-the-art review of the clinical and pre-clinical evidence for probiotics and prebiotics in PD. Currently, short-term clinical studies, including double-blind placebo-controlled randomized clinical trials, have demonstrated safety, and efficacy primarily in improving constipation-related symptoms. Pre-clinical studies consistently reported improvements in a range of biological markers and outcomes, including evidence for attenuation of gut dysfunction and neuroprotection. Bacteria from the genus Lactobacillus and Bifidobacterium have been the most frequently studied both in clinical and pre-clinical probiotics studies, …while research into prebiotics is still limited and primarily involved resistant starch and fructooligosaccharides. We provide practical suggestions for clinicians on how to advise patients in the clinic regarding these popular treatments, and important caveats to be aware of. Finally, areas for further advancements are highlighted. It is envisaged that in the future, microbial-based therapies may benefit from personalization based on an enhanced understanding of a whole range of host factors and host-microbiome interactions. Show more

Keywords: Probiotics, prebiotics, Parkinson’s disease, microbiome, constipation, gastrointestinal

DOI: 10.3233/JPD-240172

Citation: Journal of Parkinson's Disease, vol. 14, no. 7, pp. 1507-1518, 2024

Authors: Park, Sojung Kara | LeWitt, Peter A.

Article Type: Other

DOI: 10.3233/JPD-240290

Citation: Journal of Parkinson's Disease, vol. 14, no. 7, pp. 1519-1525, 2024

Authors: Georgiades, Matthew J. | van der Plas, Anton A. | Bloem, Bastiaan R. | Lewis, Simon J.G.

Article Type: Article Commentary

Abstract: Our language affects patients’ perceptions of therapies. In Parkinson’s disease, emergent response fluctuations and dyskinesias typically trigger conversations around commencing an “Advanced Therapy ” which carries notions of Advanced Disease . The patient, resolute in their commitment to fighting the disease, is misled. Chasing reassurance that their disease has not yet progressed considerably; they may therefore resist a potentially life-changing therapy. Instead, we should offer a “Smart Therapy ”. This term more accurately and positively describes therapies on offer that stabilize response fluctuations and improve quality of life, without a focus on the negative connotations of progression to more advanced …disease. Show more

Keywords: Deep brain stimulation, advanced therapies, Parkinson’s disease, personalized medicine, patient-centered care, levodopa

DOI: 10.3233/JPD-240193

Citation: Journal of Parkinson's Disease, vol. 14, no. 7, pp. 1527-1530, 2024

Authors: Lovegrove, Christopher J. | Sturkenboom, Ingrid H.W.M. | Marsden, Jonathan | Bannigan, Katrina

Article Type: Correction

DOI: 10.3233/JPD-249010

Citation: Journal of Parkinson's Disease, vol. 14, no. 7, pp. 1531-1531, 2024