Pre-diagnostic presentations of Multiple System Atrophy case control study in a primary care dataset

Background: We here report the pre-diagnostic clinical presentations of patients with Multiple System Atrophy (MSA) from analysis of a large routine clinical care database. Methods: Data were extracted from a primary care database in the German healthcare system for the period between January 2000 and December 2020. We identified 250 patients with new diagnosis of MSA and 250 controls matched for age, sex, and index year. Logistic regression analyses were conducted to assess association between MSA and predefined diagnoses. Results: The greatest rate increase in the 2 years preceding diagnosis of MSA was seen for hypotension and balance impairment but rates of memory problems, urinary dysfunction, dizziness and depression rates were also markedly increased, and ataxia was solely identified in those with a later diagnosis of MSA. Up to 5 years before diagnosis similar patterns were seen, but >5 years before diagnosis only depression rates were increased with a trend for increase in constipation. Conclusions: Presentations that were significantly more common in patients with MSA in the pre-diagnostic phase than in controls were autonomic complaints such as postural hypotension, urinary and bowel dysfunction, and early balance impairment. However, the study also highlights that memory complaints and depression may be early features of MSA years before diagnosis

The Validity of Health-Related Quality of Life Instruments in Patients With Late-Stage Parkinson's Disease

OBJECTIVE: To examine the validity of health-related quality of life (Hr-QoL) measures in patients with late-stage Parkinson's disease (PD). METHODS: We analysed data from patients with late-stage PD and their carers who were assessed with a range of clinical measures and the EQ-5D-3 L. The DEMQOL-Proxy was completed for 157 patients with a diagnosis of dementia and the PDQ-8 by 401 patients without dementia. Convergent validity was assessed using correlations with measures of Parkinson's severity, independence and cognitive function, and construct validity using correlations with patients' own EQ-5D-3 L scores. In addition, we assessed divergent validity using correlations with carers' own EQ-5D index, EQ-VAS and Zarit caregiver burden scores. RESULTS: In patients without dementia, both the PDQ-8 and EQ-5D-3 L correlated with measures of disease severity, dependence and carer burden scores, and PDQ-8 scores moderately with EQ-5D-3 L and EQ-5D-3 L VAS scores. In patients with dementia, EQ-5D-3 L scores correlated with disease severity, cognition and dependence scores, but DEMQOL-Proxy scores were moderately associated only with patients' dependence and carers' own EQ-5D-3 L scores but not patients' disease severity, EQ-5D-3 L or cognitive scores. CONCLUSIONS: The PDQ-8 and EQ-5D-3 L have adequate validity in late stage PD without dementia, but in those with PD and dementia the EQ-5D-3 L may be preferable to the DEMQOL-Proxy

The Role of Cognitive-Behavioural Therapy for Patients with Depression in Parkinson's Disease

Depression is a common complication of Parkinson's disease (PD) with considerable impact on patients' quality of life. However, at present the most appropriate treatment approach is unclear. There are limited data on antidepressant medications in PD-associated depression (dPD) and those available suggest limited efficacy and tolerability of these drugs. Cognitive behavioural therapy (CBT) has been shown to be an effective treatment of depressive disorders. Treatment of dPD with CBT may pose particular challenges, including possible different pathophysiology, physical and mental comorbidities, and barriers to treatment through disability, which do not allow simple transfer of these results to patients with dPD. However, a number of case reports, case series, and small pilot studies suggest that this is a promising treatment for patients with PD. We here summarise the published evidence on this treatment in dPD

Change in the incidence of Parkinson’s disease in a large UK primary care database

Parkinson’s disease (PD) has the fastest rising prevalence of all neurodegenerative diseases worldwide. However, it is unclear whether its incidence has increased after accounting for age and changes in diagnostic patterns in the same population. We conducted a cohort study in individuals aged ≥50 years within a large UK primary care database between January 2006 and December 2016. To account for possible changes in diagnostic patterns, we calculated the incidence of PD using four case definitions with different stringency derived from the combination of PD diagnosis, symptoms, and treatment. Using the broadest case definition, the incidence rate (IR) per 100,000 person years at risk (PYAR) was 149 (95% CI 143.3–155.4) in 2006 and 144 (95% CI 136.9–150.7) in 2016. In conclusion, the incidence of PD in the UK remained stable between 2006 and 2016, when accounting for age and diagnostic patterns, suggesting no major change in underlying risk factors for PD during this time period in the UK

Measures of fidelity of delivery and engagement in self-management interventions: A systematic review of measures

BACKGROUND: Self-management interventions are increasingly being developed and researched to improve long-term condition outcomes. To understand and interpret findings, it is essential that fidelity of intervention delivery and participant engagement are measured and reported. Before developing fidelity checklists to assess treatment fidelity of interventions, current recommendations suggest that a synthesis of fidelity measures reported in the literature is completed. Therefore, here we aim to identify what the current measures of fidelity of intervention delivery and engagement for self-management interventions for long-term conditions are and whether there is treatment fidelity. METHODS: Four databases (MEDLINE, PubMed, CINAHL Plus and ScienceDirect) and the journal implementation science were systematically searched to identify published reports from inception to December 2020 for experimental studies measuring fidelity of intervention delivery and/or participant engagement in self-management interventions for long-term conditions. Data on fidelity of delivery and engagement measures and the findings were extracted and synthesised. RESULTS: Thirty-nine articles were identified as eligible, with 25 studies measuring fidelity of delivery, 19 reporting engagement and 5 measuring both. For fidelity of delivery, measures included structured checklists, participant completed measures and researcher observations/notes. These were completed by researchers, participants and intervention leaders. Often there was little information around the development of these measures, particularly when the measure had been developed by the researchers, rather than building on others work. Eighteen of 25 studies reported there was fidelity of intervention delivery. For engagement, measures included data analytics, participant completed measures and researcher observations. Ten out of 19 studies reported participants were engaged with the intervention. CONCLUSION: In complex self-management interventions, it is essential to assess whether treatment fidelity of each core component of interventions is delivered, as outlined in the protocol, to understand which components are having an effect. Treatment fidelity checklists comparing what was planned to be delivered, with what was delivered should be developed with pre-defined cut-offs for when fidelity has been achieved. Similarly, when measuring engagement, while data analytics continue to rise with the increase in digital interventions, clear cut-offs for participant use and content engaged with to be considered an engagement participant need to be pre-determined

The experience of Anxiety for people with Parkinson’s disease

Anxiety is a common non-motor symptom of Parkinson's disease (PD) associated with increased disability and reduced quality of life. However, anxiety is poorly understood, underdiagnosed, and undertreated. To date, little research has explored how anxiety is experienced by patients themselves. This study explored the experience of anxiety for people with Parkinson's (PWP) to inform future research and interventions. Semi-structured interviews with 22 PWP (aged 43-80, 50% female) were conducted and analysed using inductive thematic analysis. Four main themes were extracted: conceptualising anxiety; anxiety and the body; anxiety and social identity; and coping with anxiety. Sub-themes revealed inconsistent perceptions: anxiety was in body and mind, part of disease and human nature, part of self-identity and a threat to it. The symptoms described were diverse. Many perceived their anxiety as more incapacitating than motor symptoms or capable of amplifying them, and described that anxiety restricted their lifestyle. All perceived anxiety as connected to PD, and ultimately persistent: dominant aspirations were coping and acceptance rather than cures, with medications strongly resisted. Findings highlight the complexity and high importance of anxiety for PWP. Implications for therapeutic approaches are discussed

Validation of a comorbidity questionnaire in patients with neurological disorders

Rational: Several tools exist to assess comorbidities in neurological disorders, the most widely used being the Charlson Comorbidity Index (CCI), but it has several limitations. The Comorbidity and General Health Questionnaire (CGHQ) is a newly designed tool, which includes additional comorbidities associated with health-related quality of life (HR-QOL) and outcomes in neurological disorders. Aims and objectives: To assess the feasibility and validity of the CGHQ in patients with neurological disease. Method: Two hundred patients attending a general neurological clinic were invited to complete the CGHQ along with the EQ-5D-5L questionnaire. The CCI was simultaneously completed by the assessor. CGHQ comorbidity scores were compared with CCI, symptom burden and EQ-5D-5L scores. Results: The CGHQ captured 22 additional comorbidities not included on the CCI and more comorbidities were endorsed on the CGHQ. The CGHQ correlated weakly to moderately with CCI comorbidity scores. While both the CGHQ and CCI correlated negatively with the EQ-5D-5L Visual Analogue Scale, only the CGHQ correlated negatively with the EQ-5D-5L summary index. The CGHQ but not the CCI correlated strongly and positively with symptom burden scores. Conclusion: The CGHQ allows a more comprehensive assessment of comorbidities than the CCI and better correlates with patients’ overall symptom burden and HR-QOL in neurological patients

The Lived Experience of Caregiving and Perception of Service Provision among Family-Caregivers of People with Late-Stage Parkinson’s: A Qualitative Study

Background. The complex nature of late-stage Parkinson’s requires multiagency support and leads to an increased burden on family members who assume a multiplicity of responsibilities. The aim of this study is to further understand the lived experiences of family-caregivers and their perception of, and satisfaction with, service provision. Methods. This qualitative substudy was a part of the European multicentre Care of Late-Stage Parkinsonism (CLaSP) project. Purposive sampling resulted in a sample of eleven family-caregivers of people with late-stage Parkinson’s, who were interviewed using semistructured open-ended questions. Thematic analysis followed. Findings. Three overarching themes were developed from the data: ensuring continuous support is vital to providing care at home, perceiving unmet service provision needs, and advocating and co-ordinating all aspects of care take their toll. These themes include not only experience of services that caregivers find supportive in order to deliver care but also of disjointed care between multiple agencies, a perceived lack of Parkinson’s expertise, and there was a lack of anticipatory future planning. The constancy and scope of the family-caregiver role is described, including the need to project manage multiple aspects of care with multiple agencies, to be an advocate, and to assume new roles such as managing finances. Multiple losses were reported, which in part was mitigated by gaining expertise through information and support from professionals and organised and informal support. Conclusion. The intricacies and consequences of the family-caregivers’ role and their experience of service provision indicate the need to acknowledge and consider their role and needs, fully involve them in consultations and provide information and joined-up support to improve their well-being, and ensure their continuous significant contribution to the ongoing care of the person with Parkinson’s

Support needs in Carers of People with Parkinson’s from early to later stages: A qualitative study with 36 carers in 11 European countries

Background: Parkinson’s Disease (PD) is associated with considerable carer burden, but there has been little qualitative research on the support needs of carers of People with Parkinson’s (PwP). Methods: Semi-structured in-depth interviews with carers of PwP in 11 European countries. Results: Interviews with 36 carers of PwP were analysed. At the time of diagnosis, carers often felt that they had a role in helping get a diagnosis and then in dealing with the impact of the diagnosis on the family. Information on medication was seen as particularly important for carers, and many of the carers that their informational needs differed from that of the PwPs. Many of the carers also felt that they needed to be present at all appointments to request referrals or ask for medication changes. Carers of those in the later stages of the disease often reported feeling isolated and not having any time for themselves. Conclusions: The involvement of carers should be addressed more actively in the management of Parkinson’s