Chronic neurological diseases are the leading cause of disability globally. Yet, our health-care systems are not designed to meet the needs of many patients with chronic neurological conditions. Care ...is fragmented with poor interdisciplinary collaboration and lack of timely access to services and therapies. Furthermore, care is typically reactive, and complex problems are managed inadequately because of a scarcity of disease-specific expertise and insufficient use of non-pharmacological interventions. Treatment plans tend to focus on the disease rather than the individual living with it, and patients are often not involved in clinical decision making. By use of Parkinson's disease as a model condition, we show an integrated care concept with a patient-centred perspective that includes evidence-based solutions to improve health-care delivery for people with chronic neurological conditions. We anticipate that this integrated care model will improve the quality of life for patients, create a positive working environment for health-care professionals, and be affordable.
There is no systematic insight into the effect of case management on common complications of chronic diseases, including depressive symptoms and symptoms of anxiety. This is a significant knowledge ...gap, given that people with a chronic disease such as Parkinson Disease or Alzheimer's Disease have identified care coordination as one of their highest priorities. Furthermore, it remains unclear whether the putative beneficial effects of case management would vary by crucial patient characteristics, such as their age, gender, or disease characteristics. Such insights would shift from "one size fits all" healthcare resource allocation to personalized medicine.
We systematically examined the effectiveness of case management interventions on two common complications associated PD and other chronic health conditions: Depressive symptoms and symptoms of anxiety.
We identified studies published until November 2022 from PubMed and Embase databases using predefined inclusion criteria. For each study, data were extracted independently by two researchers. First, descriptive and qualitative analyses of all included studies were performed, followed by random-effects meta-analyses to assess the impact of case management interventions on anxiety and depressive symptoms. Second, meta-regression was performed to analyze potential modifying effects of demographic characteristics, disease characteristics and case management components.
23 randomized controlled trials and four non-randomized studies reported data on the effect of case management on symptoms of anxiety (8 studies) or depressive symptoms (26 studies). Across meta-analyses, we observed a statistically significant effect of case management on reducing symptoms of anxiety (Standardized Mean Difference SMD = - 0.47; 95% confidence interval CI: -0.69, -0.32) and depressive symptoms (SMD = - 0.48; CI: -0.71, -0.25). We found large heterogeneity in effect estimates across studies, but this was not explained by patient population or intervention characteristics.
Among people with chronic health conditions, case management has beneficial effects on symptoms of depressive symptoms and symptoms of anxiety. Currently, research on case management interventions are rare. Future studies should assess the utility of case management for potentially preventative and common complications, focusing on the optimal content, frequency, and intensity of case management.
Providing informal care for a person with Parkinson's disease (PD) can be a demanding process affecting several dimensions of a caregiver's life and potentially causing caregiver burden. Despite the ...emerging literature on caregiver burden in people with PD, little is known about the inter-relationship between quantitative and qualitative findings. Filling this knowledge gap will provide a more holistic approach to develop and design innovations aiming at reducing or even preventing caregiver burden. This study aimed to characterize the determinants of caregiver burden among informal caregivers of persons with PD, in order to facilitate the development of tailored interventions that reduce caregiver burden.
We conducted a cross-sectional study in The Netherlands using a sequential mixed methods approach, entailing a quantitative study of 504 persons with PD and their informal caregivers as well as a qualitative study in a representative subsample of 17 informal caregivers. The quantitative study included a standardized questionnaire of caregiver burden (Zarit Burden Inventory) and patient-related (Beck Depression Inventory, State-Trait Anxiety Inventory, Acceptance of Illness Scale, MDS-Unified Parkinson's Disease Rating Scale part II on motor functions in daily life, Self-assessment Parkinson's Disease Disability Score), caregiver-related (Brief Coping Orientation to Problems Experience Inventory, Caregiver Activation Measurement, Multidimensional Scale of Perceived Social Support) and interpersonal determinants (sociodemographic variables including among others gender, age, education, marital status and working status). The qualitative study consisted of semi-structured interviews. Multivariable regression and thematic analysis were used to analyse quantitative and qualitative data, respectively.
A total of 337 caregivers were women (66.9%), and the majority of people with PD were men (N = 321, 63.7%). The mean age of persons with PD was 69.9 (standard deviation SD 8.1) years, and the mean disease duration was 7.2 (SD 5.2) years. A total of 366 (72.6%) persons with PD had no active employment. The mean age of informal caregivers was 67.5 (SD 9.2) years. Most informal caregivers were female (66.9%), had no active employment (65.9%) and were the spouse of the person with PD (90.7%). The mean Zarit Burden Inventory score was 15.9 (SD 11.7). The quantitative study showed that a lack of active employment of the person affected by PD was associated with a higher caregiver burden. The qualitative study revealed cognitive decline and psychological or emotional deficits of the person with PD as additional patient-related determinants of higher caregiver burden. The following caregiver-related and interpersonal determinants were associated with higher caregiver burden: low social support (quantitative study), concerns about the future (qualitative study), the caregiving-induced requirement of restrictions in everyday life (qualitative study), changes in the relationship with the person with PD (qualitative study) and a problem-focused or avoidant coping style (both studies). Integration of both data strands revealed that qualitative findings expanded quantitative findings by (1) distinguishing between the impact of the relationship with the person with PD and the relationship with others on perceived social support, (2) revealing the impact of non-motor symptoms next to motor symptoms and (3) revealing the following additional factors impacting caregiver burden: concern about the future, perceived restrictions and limitations in performing daily activities due to the disease, and negative feelings and emotional well-being. Qualitative findings were discordant with the quantitative finding demonstrating that problem-focused was associated with a higher caregiver burden. Factor analyses showed three sub-dimensions of the Zarit Burden Inventory: (i) role intensity and resource strain, (2) social restriction and anger and (3) self-criticism. Quantitative analysis showed that avoidant coping was a determinant for all three subscales, whereas problem-solved coping and perceived social support were significant predictors on two subscales, role intensity and resource strain and self-criticism.
The burden experienced by informal caregivers of persons with PD is determined by a complex interplay of patient-related, caregiver-related and interpersonal characteristics. Our study highlights the utility of a mixed-methods approach to unravel the multidimensional burden experienced by informal caregivers of persons with chronic disease. We also offer starting points for the development of a tailored supportive approach for caregivers.
Has the time come to redefine Parkinson's disease? Darweesh, Sirwan K L; Sampaio, Cristina; Bloem, Bastiaan R
Lancet neurology,
February 2024, 2024-Feb, 2024-02-00, 20240201, Letnik:
23, Številka:
2
Journal Article
Recenzirano
...the predictive value of the criteria that define each stage is unclear. ...the proposed staging system can only be considered as a working hypothesis at this moment, to be tested in future ...research. ...an open question remains as to how these frameworks will be used in practice. NSD-ISS1 SynNeurGe2 Overlap Characteristics Purpose Biological definition Yes Yes Yes Classification No Yes No Integrated staging system Yes No No Disease label Neuronal α-synuclein disease Parkinson's disease No Key components Genetic variants Yes Yes Yes Fully penetrant variants Only rare SNCA variants Several No Variants that convey a substantially increased risk No Several Partial Variants associated with clinical Parkinson's disease without α-synuclein pathology No Yes No α-synuclein pathology Yes Yes Yes CSF seed amplification assays Yes Yes Yes Other assays No Skin seed amplification assays, skin immunohistochemistry, or immunohistofluorescence No Discrimination of neuronal α-synuclein disease or Parkinson's disease versus multiple system atrophy According to CSF seed amplification assays On the basis of α-synuclein pathology assays and additional exclusionary plasma or neuroimaging measures Partial Neuronal dysfunction or neurodegeneration Yes Yes Yes DAT scan Yes Yes Yes Other dopaminergic imaging modalities No Yes No Non-dopaminergic imaging modalities No 18Ffluorodeoxyglucose-PET as marker of Parkinson's disease-related metabolic pattern; metaiodobenzylguanidin SPECT as marker of peripheral autonomic involvement No Clinical signs and symptoms Not used to diagnose neuronal α-synuclein disease Not used to diagnose Parkinson's disease No Considered for diagnosis (of neuronal α-synuclein disease or Parkinson's disease) No No Yes Used for other purpose To distinguish stages with increasing functional impairment A list of motor and non-motor features is provided to distinguish whether signs and symptoms are possibly or probably related to Parkinson's disease No Case definition* Sporadic disease (neuronal α-synuclein disease or Parkinson's disease) α-synuclein pathology and neurodegeneration Yes Yes Yes α-synuclein pathology without neurodegeneration Yes No† No Genetic disease (neuronal α-synuclein disease or Parkinson's disease) Fully penetrant variant, regardless of α-synuclein pathology or neuronal dysfunction Yes (rare SNCA variants only) Yes Yes Variant that conveys a substantially increased risk; and neuronal dysfunction; and α-synuclein pathology Yes Yes Yes Variant that conveys a substantially increased risk; and neurodegeneration; without α-synuclein pathology No Yes‡ No Table Comparison of the NSD-ISS and the SynNeurGe research criteria
Cognitive dysfunction is a common feature among patients with parkinsonism, including Parkinson disease (PD). However, there is a scarcity of data on cognitive functioning before parkinsonism ...diagnosis, a stage at which patients may still respond to putative disease-modifying interventions.
To assess whether poor cognitive functioning is associated with an increased risk of parkinsonism.
Between January 8, 2002, and December 14, 2008, baseline cognitive function was assessed in 7386 participants of the Rotterdam Study who were free of parkinsonism and dementia. Four tests were administered (Stroop color word test, letter-digit substitution, verbal fluency, and word learning) and a global cognition score was derived from principal component analysis. Subsequently, participants were followed up until January 1, 2015, for the onset of parkinsonism through serial in-person examinations and complete access to medical records. Parkinsonism was defined as the (1) presence of hypokinesia or bradykinesia plus at least 1 other cardinal sign and/or (2) clinical diagnosis by a neurologist or geriatrician. Patients with dementia diagnosis before parkinsonism diagnosis were considered to have probable PD.
Hazard ratios (HRs) for incident parkinsonism per SD decrease in global cognition, adjusted for age, sex, and study subcohort.
A total of 7386 patients were included in the analysis; of these, 4236 (57.4%) were women and mean (SD) age was 65.3 (10.2) years. During follow-up (median, 8.3 years; range, 0-15 years), 79 (1.1%) individuals received a diagnosis of incident parkinsonism; of these, 57 (72.2%) received a diagnosis of probable PD. Among patients with incident parkinsonism, 24 (30.4%) also developed dementia (10 before and 14 after parkinsonism onset). Poor global cognition at baseline was associated with a higher hazard of incident parkinsonism (hazard ratio HR, 1.79; 95% CI, 1.37-2.33). The association remained robust beyond the first 8 years (HR, 1.59; 95% CI, 1.01-2.59) and after removing individuals with dementia onset before parkinsonism (HR, 1.72; 95% CI, 1.28-2.27). Poor global cognition at baseline was also associated with incident probable PD (HR, 1.52; 95% CI, 1.11-2.08). Letter-digit substitution (HR, 1.59; 95% CI, 1.22-2.04), verbal fluency (HR, 1.61; 95% CI, 1.23-2.08), and inverted interference task Stroop color word test (HR, 1.56; 95% CI, 1.25-1.96) scores were each associated with incident parkinsonism, whereas the association with word learning delayed-task scores was weaker (HR, 1.18; 95% CI, 0.92-1.52).
Poor cognitive functioning is associated with an increased risk of incident parkinsonism, including probable PD. Cognition indicates the probability of parkinsonism over long intervals and extends beyond patients with onset of parkinsonism after dementia. The findings suggest that cognitive dysfunction can be considered a sign of prodromal PD.
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