BACKGROUND: In spite of being considered the gold-standard of care, little is known about the real-life use of in-home and multidisciplinary care in atypical parkinsonism.
OBJECTIVE: Primary: Examine real-life multidisciplinary care use for Progressive Supranuclear Palsy (PSP). Secondary: a) Compare PSP care to advanced Parkinson\'s disease (APD) care; (b) Explore demographic and clinical variables associated with care needs in both groups.
METHODS: A cross-sectional multicenter observational study enrolled 129 PSP patients and 65 APD patients (Hoehn and Yahr ≥3), matched for sex and age. Univariate and multivariate regression analysis were performed.
RESULTS: Over the previous year, 40 % of PSP patients did not encounter a physical therapist, while only one-third met a speech and language therapist and 5 % an occupational therapist. More than 20 % received in-home care and 32 % needed home structural changes. Compared to APD, PSP patients required more day-time, night-time and home structural changes. When considering both PSP and APD in multivariate analysis, reduced functional autonomy and living without a family caregiver were both related to day-time home assistance and to the need of at least one home care service. A PSP diagnosis compared to APD was a risk factor for having at least four multidisciplinary visits in a year. Finally, PSP diagnosis and being from the Northern Italy were significantly related with home structural changes.
CONCLUSIONS: There\'s a significant gap in providing multidisciplinary care for PSP patients. Our findings emphasize the need for a shared, integrated care plan at a national level for patients with atypical parkinsonism.

UNASSIGNED: Parkinson\'s disease (PD) significantly impedes, especially at its advanced stages, the health-related quality of life (QoL) of patients. The Parkinson\'s disease questionnaire (PDQ-39) is a widely-used measure assessing the impact of the disease on the patients\' QoL. To date, the reliability of PDQ-39 has not been selectively evaluated for patients at a particular delineated stage of the PD progression. Against this backdrop, the study aimed firstly to evaluate comprehensively the internal consistency reliability of PDQ-39 and the constituent scales specifically for patients at the advanced stages of PD who were candidates for Deep Brain Stimulation (DBS) surgery, and secondly, to compare the Cronbach\'s alpha coefficients with those reported in other studies conducted with patients across all stages of the PD progression.
UNASSIGNED: The sample included 36 Bulgarian patients (29 men and 7 women) at advanced stages of PD (Hoehn and Yahr stage 4), PD duration, M = 11.06, SD = 3.50). The internal consistency reliability of the questionnaire and the constituent scales was assessed using three criteria: Cronbach\'s alpha coefficients, inter-item and item-total correlations.
UNASSIGNED: The internal consistency reliability indicators were satisfactory for the entire instrument and for most of the scales and similar to those reported in previous studies. None of the scales had low internal consistency reliability results across the three criteria. Except for the Communication scale, seven of the eight scales had Cronbach\'s alpha values that were satisfactory or marginally below the cut off score. All scales had acceptable inter-item correlations. Three of the scales (Emotional Well-Being, Cognition and Communication) contained more than one item with non-satisfactory item-total correlations. With minor exceptions, the removal of the items with low item-total correlations either did not improve or improved marginally or even decreased the Cronbach\'s alpha coefficients of the respective scale. The Communication scale was the only scale with a Cronbach\'s alpha coefficient that was both low and comparatively different to other studies and had as well low item-total correlations for all constituent items, thus showing non-satisfactory results on two of the three internal consistency reliability estimates. In contrast, the Mobility scale met all three internal consistency reliability criteria.
UNASSIGNED: PDQ-39 is a reliable tool for assessing the QoL of patients at advanced stages of PD across multiple health-related domains. The questionnaire can be recommended for inclusion in the best practice guidelines for evaluating DBS candidacy and the efficacy of DBS treatment for patients\' QoL.

BACKGROUND: Blood pressure control in Parkinson\'s disease (PD) under subthalamic deep brain stimulation (STN-DBS) is influenced by several intertwined aspects, including autonomic failure and levodopa treatment.
OBJECTIVE: To evaluate the effect of chronic STN-DBS, levodopa, and their combination on cardiovascular autonomic functions in PD.
METHODS: We performed cardiovascular reflex tests (CRTs) before and 6-months after STN-DBS surgery in 20 PD patients (pre-DBS vs. post-DBS). CRTs were executed without and with medication (med-OFF vs. med-ON).
RESULTS: CRT results and occurrence of neurogenic orthostatic hypotension (OH) did not differ between pre- and post-DBS studies in med-OFF condition. After levodopa intake, the BP decrease during HUTT was significantly greater compared to med-OFF, both at pre-DBS and post-DBS evaluation. Levodopa-induced OH was documented in 25% and 5% of patients in pre-DBS/med-ON and post-DBS/med-ON study.
CONCLUSIONS: Chronic stimulation did not influence cardiovascular responses, while levodopa exerts a relevant hypotensive effect. The proportion of patients presenting levodopa-induced OH decreases after STN-DBS surgery.

BACKGROUND: Levodopa-entacapone-carbidopa intestinal gel (LECIG) is a novel device assisted treatment option for advanced Parkinson\'s disease (PD). It has been available in Finland since 2020. There is paucity of scientific studies considering LECIG treatment in clinical practice.
OBJECTIVE: Objectives of this study were to evaluate the changes in medication, adverse events and early discontinuations of LECIG treatment in real life clinical practice.
METHODS: The records of 30 consecutive patients, who received LECIG between years 2020 and 2022 in Helsinki University Hospital, were retrospectively analyzed. Data considering changes in medication, discontinuations, and adverse events during the first six months of LECIG treatment was collected.
RESULTS: Mean levodopa equivalent daily dose (LEDD) rose significantly between baseline before LECIG and six months with treatment (1230 mg vs. 1570 mg, P = 0.001). Three patients were discarded during nasojejunal tube test phase and seven discontinued the treatment during six-month follow-up. Most common reasons for discontinuation were difficulty in finding suitable infusion rate and neuropsychiatric problems. Safety issues encountered were similar to those reported with levodopa-carbidopa intestinal gel (LCIG) treatment. One case of rhabdomyolysis due to severe dyskinesia during LECIG treatment was observed. Patients were satisfied with the small size of the pump system.
CONCLUSIONS: LEDD seems to increase during the first months of LECIG treatment. When compared to studies on LCIG, safety profile of LECIG appears similar, but early discontinuation rate is higher than expected. However, long-term studies are lacking. Only clear advantage to LCIG appears to be the smaller LECIG pump size.

Subjective cognitive complaints (SCCs), defined as cognitive decline reported by subjects or their informants, are common in the early stage of Parkinson\'s disease (PD). Previous studies have shown a significant association between SCCs and non-motor features as well as objective cognitive decline in PD patients. However, the discrepancy in SCC prevalence and SCC-related factors between patients with early PD and those with advanced PD remains poorly understood. We recruited a total of 114 and 69 early PD patients and advanced PD patients, respectively. Univariate and multivariate logistic regression analyses were performed for early PD and advanced PD patients. The prevalence of SCCs in the early PD and advanced PD groups was 60.5 and 68.1%, respectively. In the early PD group, the presence of SCCs in early PD participants was significantly associated with a higher nonmotor symptoms questionnaire (NMSQ) score (OR = 1.05, 95% CI = 1.00-1.10, p = 0.040). SCCs in the advanced PD group were related to lower attention scores (OR = 0.24, 95% CI = 0.05-0.90, p = 0.043) and lower visuospatial/executive abilities scores (OR = 0.18, 95% CI = 0.04-0.86, p = 0.032). The prevalence and SCC-related factors are distinct in early PD and advanced PD. These findings suggest that SCCs in PD patients with different disease statuses appear to have different related factors that may depend on different disease severities.

The standard of care is a term that refers to the level of care, skill, and treatment that a healthcare provider should offer to a patient based on the current scientific evidence and the level of medical knowledge available in the field. For Parkinson\'s disease (PD), the standard care is mostly considered to be oral treatment with dopaminergic drugs, particularly levodopa which remains the \'gold standard\'. However, effective management with levodopa during the later stages of the disease becomes increasingly challenging due to the ongoing neurodegenerative process, the consequences of its pulsatile dopaminergic stimulation, and the gastrointestinal barriers to effective drug absorption. As a result, the concept of applying continuous dopaminergic stimulation has emerged with infusion therapies (continuous subcutaneous apomorphine, levodopa-carbidopa intestinal gel, and levodopa-entacapone-carbidopa intestinal gel infusion). These therapies seek to provide continuous stimulation of striatal dopamine receptors that is efficient not only in alleviating clinical symptoms, but also in delaying, reducing, and possibly preventing the onset of levodopa-related motor (fluctuations, dyskinesia) and non-motor complications; and they are also associated with clinically relevant side effects. Clinical studies and real-life experience support the notion that infusion therapies should be accepted as part of the standard of care for patients with advanced PD who have refractory, severe, and disabling motor complications that affect their quality of life. However, they should be considered based on the needs of individualized patients and the access to these advanced therapies needs to be made more accessible to the general PD population.

In the advanced Parkinson\'s disease, motor and non-motor symptoms become more severe and more difficult to treat. Oral therapy may become insufficient in controlling a patient´s motor complications, which results in a substantial deterioration of the patient\'s quality of life, ability to work and self-reliance. This is when device-aided treatments should be considered and offered, if suitable for a given patient. They include subcutaneous and intestinal infusion therapies, deep brain stimulation and, more recently, MRI-guided focussed ultrasound. Device-aided treatments should be offered in accordance with guidelines and treatment standardization. Also there is a need to ensure availability of treatment and education of patients and physicians.

UNASSIGNED: Sleep disturbances are commonly encountered in people with advanced Parkinson\'s disease (PD). In these stages, levodopa-carbidopa intestinal gel (LCIG) is recommended for improving motor symptoms, some non-motor dysfunctions, and quality of life in these patients. This study aimed to assess the effects of LCIG on sleep in PD in a longitudinal study.
UNASSIGNED: An open-label observational study in patients with advanced PD undergoing LCIG treatment was carried out.
UNASSIGNED: In total, 10 consecutive advanced people with PD were evaluated at the baseline and after 6 months and 1 year, respectively, of LCIG infusion. Sleep parameters were assessed with several validated scales. We assessed the evolution of sleep parameters under LCIG infusion over time and the effects on sleep quality.
UNASSIGNED: Significant improvement following LCIG was observed in PSQI total score (p = 0.007), SCOPA-SLEEP total score (p = 0.008), SCOPA-NS subscale (p = 0.007), and AIS total score (p = 0.001) at 6 months and 1 year, compared to the baseline. The PSQI total score at 6 months correlated significantly with the Parkinson\'s Disease Sleep Scale, version 2 (PDSS-2) \"disturbed sleep\" item at 6 months (p = 0.28; R = 0.688), while the PSQI total score at 12 months significantly correlated with the PDSS-2 total score at 1 year (p = 0.025, R = 0.697) and with the AIS total score at 1 year (p = 0.015, R = 0.739).
UNASSIGNED: LCIG infusion demonstrated beneficial effects on sleep parameters and sleep quality, which were constant over time for up to 12 months.

Here we focus on people with advanced PD undergoing percutaneous endoscopic transgastric jejunostomy (PEG-J) (\"one stone\") for LCIG infusion therapy for managing severe motor fluctuations (\"first bird\") and discuss its implications for improving accompanying symptoms of cardiovascular, urinary, and gastrointestinal autonomic failure (\"second bird\").

Dysphagia is common in advanced phases of Parkinson disease (PD), and is a risk factor for aspiration pneumonia. Nonetheless, dysphagia has been poorly investigated in PD patients treated with levodopa-carbidopa intestinal gel (LCIG). We aimed to analyze the impact of dysphagia on mortality in LCIG treated patients and its relationship with other PD disability milestones.
We retrospectively evaluated 95 consecutive PD patients treated with LCIG. Kaplan-Meier and log-rank test were used to compare mortality in patients with dysphagia from others. Cox regression was used to estimate the impact of dysphagia, age, disease duration, and Hoehn and Yahr (H&Y) on mortality in the entire cohort. Finally, univariate and multivariate regression analyses were used to estimate the association between dysphagia and age, disease duration, H&Y, hallucinations, and dementia.
A significantly higher mortality rate was observed in patients with dysphagia. In the Cox model, dysphagia was the only feature significantly associated with mortality (95%CI 2.780-20.609; p < 0.001). Univariate analyses showed a significant correlation between dysphagia and dementia (OR: 0.387; p:0.033), hallucinations (OR: 0.283; p:0.009), and H&Y score (OR: 2.680; p < 0.001); in the multivariate analysis, only the H&Y stage was associated with the presence of dysphagia (OR: 2.357; p:0.003).
Dysphagia significantly increased the risk of death in our cohort of LCIG-treated patients, independently from other relevant features such as age, disease duration, dementia, and hallucinations. These findings support the management of this symptom as a priority in the advanced PD stages, even in people treated with LCIG.