The Impact of the COVID-19 Pandemic on Informal Caregivers of People With Parkinson's Disease Residing in the UK: A Qualitative Study.

Informal caregivers can experience various demands when providing care and support for People with Parkinson's disease (PwP) in their own homes. The outbreak of SARS-CoV-2 and public health strategies employed to mitigate the spread of COVID-19 have presented challenges to the general populace on a global basis. The present study used a qualitative research design to explore how the COVID-19 pandemic has impacted informal caregivers in their role of providing care for PwP in their own homes. A series of 1:1 semi-structured interviews were conducted with 11 informal caregivers of PwP (M age = 72.64 years, SD = 8.94 years). A thematic analysis indicated that 1) vulnerabilities to COVID-19, 2) home maintenance & activities of daily living and 3) engagement with healthcare services were 3 themes that provided indications on how the COVID-19 pandemic impacted informal caregivers of PwP. The present study provides illustrations of how being an informal caregiver of PwP and being identified as high risk to COVID-19 can present challenges to the process of caring for loved ones who are also vulnerable to SARS-CoV-2. The results of the present study highlights the necessity to develop strategies to ensure that informal caregivers have the necessary resources to provide care for PwP in their homes and also maintain their own well-being in the post COVID-19 era.

What is available to support pain management in Parkinson's: a scoping review protocol.

OBJECTIVE: A scoping review will be undertaken to examine and map the available evidence that has been produced in relation to pain management in Parkinson's, with a focus on behavioural interventions, resources and/or how professionals support people with Parkinson's self-management of pain. METHODS: This review will be based on the methodological framework given by Arksey and O'Malley's (2005), including enhancements by Levac et al., Peters et al. and the Joanna Briggs Institute. We will include studies from PubMed, SCOPUS, CINAHL, MEDLINE Web of Science, APA PsycINFO and ASSIA from January, 2010 onwards. Both quantitative and qualitative data will be analysed separately to identify the characteristics of support for pain management available, orientation of the approach and any identifiable behaviour change components and their outcomes. The COM-B behaviour change model and Theoretical Domains Framework will provide a theoretical framework for synthesising evidence in this review. CONCLUSION: This scoping review will help to explore studies focusing on the evidence supporting a range of interventions relating to the management of pain experienced by people living with Parkinson's. The focus will be on describing what is available to support self-management, identify what behaviour change components have been used and their effectiveness, identify barriers and enablers to pain management and explore gaps in current provision of pain management. This review will identify implications and priorities for the follow-up phases to the larger 'Pain in Parkinson's' Project which is designed to support clinicians and individuals living with Parkinson's.

Understanding Caregiver Strain in Parkinsonism-A Mixed Methods Approach.

BACKGROUND: Parkinsonism, including Parkinson's disease (PD) are progressive neurological conditions. As these condition progress, individuals will need more support with their care needs to maintain independent community-living. Care needs are mainly met by unpaid, informal caregivers, usually close family members or friends. Caregiver strain is thought to lead to the need for care home placement when the caregiver can no longer cope. OBJECTIVE: To understand predictors of caregiver strain and its influence on care home placement for people with moderate to advanced Parkinsonism. METHODS: This is a convergent mixed methods study. Quantitative data, following an adapted stress-appraisal model, were collected on caregiver profile, tasks performed and causes of caregiver strain. Semi-structured, in-depth interviews were conducted with caregivers of people with PD (PwP) who went into a care home during the study period, to develop a deeper understanding of the caregiver role and the factors influencing caregiver strain. RESULTS: Quantitative data were collected from 115 patient caregiver dyads. Interviews were conducted with 10 caregivers. A model to predict caregiver strain was developed and predictors of caregiver strain were identified, such as functional disability and poor caregiver sleep. CONCLUSION: Our findings further demonstrate the complexity of carer strain. Particular dimensions are identified that need to be addressed within clinical practice to reduce carer strain and support people with Parkinsonism to remain within their own home for as long as possible.

What Predicts Hospital Admissions in Community-Dwelling People With Parkinsonism?

OBJECTIVES: Previous studies have looked at the reasons for hospital admission in people with parkinsonism (PwP), yet few have looked at factors that precipitate admission. METHODS: People with parkinsonism with a diagnosis of idiopathic Parkinson disease of Hoehn and Yahr stage III-V and those with Parkinson plus syndromes were assessed for motor and nonmotor symptoms, quality of life, and functional performance. Logistic regression was used to investigate predictors of hospital admission over the subsequent 2 years. RESULTS: Overall, 162 patients consented to be part of the study. Seventy-one PwP (43.8%) had at least 1 hospital admission, and 17 (10.5%) patients had 3 or more admissions to hospital. Poorer cognition, more nonmotor symptoms, poorer quality of life, slower timed-up-and-go test scores, and abnormal swallow predicted a subsequent hospital admission. DISCUSSION: Our study emphasizes the importance of nonmotor symptoms in predicting admission. A cost-benefit analysis of early intervention to prevent admission should be considered.

Highlighting the goals for Parkinson's care: commentary on NICE Guidelines for Parkinson's in Adults (NG71).

Parkinson's disease is a chronic multi-system disease that can cause motor and non-motor symptoms, cognitive changes and variably effective medications. Optimal management of the condition requires a multi-disciplinary team of healthcare professionals to work closely with the patient and their carers. The National Institute for Health and Care Excellence published updated guidelines on managing Parkinson's disease in adults in 2017. Here we discuss the implications of this guidance to current healthcare professionals involved in the care of people with Parkinson's disease. The guidance highlights the importance of clear communication with people with Parkinson's disease. We discuss examples of this, including providing a point of contact with specialist services for people with Parkinson's disease and ensuring information about the risks of impulse control disorders are given to people on dopaminergic therapy. The breadth of services required by people with Parkinson's disease is also described, including the need for access to physiotherapy, occupational therapy and speech and language therapy as well as treatment monitoring services for Clozapine. In addition, we emphasise the continued importance of ensuring people with Parkinson's disease receive their medications on time when in hospital or a care home.

The role and profile of the informal carer in meeting the needs of people with advancing Parkinson's disease.

BACKGROUND: Many people with Parkinson's disease (PD) (PwP) require care from either informal or formal carers, due to worsening symptoms. Carer strain is a recognised consequence of caring. However there are few data on the role and profile of informal carers and if this impacts on carer strain. METHOD: People with moderate to advanced PD, with an informal carer were invited to participate. Data regarding motor and non-motor symptoms of the participant, along with demographics, tasks and duration of caring and health issues of the carer were collected. RESULTS: One-hundred and fifteen participants and their carer were recruited. Mean carer age was 70.7 years, 66.1% were female caring for a median of 16 hours per day. Over 80% provided help in housework and companionship activities, 63.2% with dressing and 49.1% with feeding. There was a significant relationship between disease stage and level of strain. Participant age, physical and cognitive disability were significantly associated with greater care need. High care need was associated with poor carer quality of life. CONCLUSIONS: The care needs of PwP are considerable. To reduce carer strain and improve quality of life, carers' needs must be considered to enable them to carry on with their vital role.

Understanding the Care Needs and Profile of People Living at Home With Moderate to Advanced Stage Parkinson Disease.

BACKGROUND: In the United Kingdom, people with Parkinson disease (PD) and atypical parkinsonism will require more support with their care needs as the condition progresses. There are few data on the nature of care input required and the amount of informal and formal care needed by people with PD to enable them to remain within their own home. METHOD: All people with moderate to advanced stage (Hoehn and Yahr III-V) idiopathic PD and atypical parkinsonism under the care of the Northumbria Healthcare NHS Foundation Trust PD service and living in their own home were invited to take part in The Northumbria Care Needs Project, a 10-year prospective longitudinal study. At baseline, data regarding formal (paid) personal and domestic care input and use of respite care, sitting services, and day centers were collected. We also collected data on patient cognitive disability, functional disability, and disease severity and informal carer tasks. RESULTS: Of 162 people with PD included in the study, only 25.2% accessed formal domestic care and the same proportion formal personal care. In contrast, 80.2% identified an informal carer who helped with these tasks. Despite greater level of functional disability in those with an informal carer, levels of formal personal care input were similar to those with and without a formal carer. Levels of formal domestic carer input were higher in those without an informal carer. CONCLUSIONS: Use of formal care services was relatively uncommon in our cohort and much of the burden of caring appears to be being met by informal carers.

200 Years of Parkinson's disease: what have we learnt from James Parkinson?

2017 marks 200 years since James Parkinson's published his 'Essay on the Shaking Palsy'. Although now most famous for describing the condition that came to bear his name, Parkinson had a wide range of interests and his influence spread beyond medicine. In this review, we provide a biography of James Parkinson's remarkable life.Parkinson's paper not only comprehensively described the symptoms of Parkinson's disease (PD), but challenged his peers to better understand the pathophysiology of the PD. Key observation over the next 2 centuries, included the recognition of the link between the substantia nigra and PD and the discoveries of dopamine deficiency in patients with PD. We review the subsequent development of pharmacological and surgical therapies. Despite great progress over the last 200 years, Parkinson's hopes for a 'cure if employed early enough' or that 'some remedial process may ere long be discovered by which at least the progression of the disease may be stopped' remain apposite today and we reflect on the challenges ahead for the next century.

An evaluation of the Newcastle upon Tyne Hospitals 4Ps Programme for the development of nurses, midwives and allied healthcare professionals' research skills.

BACKGROUND: Research forms an important part of clinical practice for nurses, midwives and allied healthcare professionals (NMAHPs). However, it is known there is a lack of confidence in this community in the development and use of research skills. The 4Ps Programme is a bespoke research-training programme that focuses on four areas: place, project, person and plan. AIM: To report an evaluation of the 4Ps Programme that used a survey to record the confidence levels reported by NMAHPs. DISCUSSION: An increase in participants' confidence was observed across all modules in the 4Ps Programme. This exceeded the standard deviation in the 'place' session, demonstrating genuine improvement. It was not possible to demonstrate a significant improvement in all cases. Low response rates affected the quality of the data obtained in the study, which would have benefitted from a more targeted approach to questions and better enabled the tracking of individuals' improvement over the course of the programme. CONCLUSION: Participation in bespoke, targeted training related to research could lead to an increase in NMAHPs' confidence in research-related activities. Efforts need to be made to refine the evaluation approach and improve response rates. IMPLICATIONS FOR PRACTICE: The 4Ps Programme can improve research-related confidence. Improved and further longitudinal evaluation will assess its impact in developing future clinical academics.

Influences on paramedic prescribing: student and prescriber perspectives.

Background: Paramedic prescribing has been permitted in legislation from 2018. In 2019 one of the first cohorts of paramedic prescribers in the country was invited to share their experiences, thoughts and perceptions around the new and evolving role of paramedic prescribing practice. Aim: To explore the opinions of student and newly qualified paramedic prescribers regarding the impact and effectiveness of paramedic independent prescribing on their clinical practice. Design and setting: A qualitative study was undertaken within the North East of England with a group of experienced paramedics undertaking non-medical prescribing education. Methods: A focus group and dyad interview were undertaken with a purposive sample of paramedics recruited from a higher education institution providing V300 independent and supplementary prescribing education. The focus group was undertaken with paramedics on the non-medical prescribing (NMP) programme of study. The dyad interview was undertaken with participants once qualified as prescribers, and actively prescribing. The focus group and interview were audio recorded, transcribed verbatim and subjected to thematic analysis to identify key themes. Results: A total of n = 7 and n = 2 paramedics undertook the focus group and dyad interview, respectively. Paramedics in this sample represented a range of paramedic practice areas. Paramedic NMP students noted four key themes around role, expectations, governance and opportunities and challenges in relation to prescribing practice. The returning sample of paramedics, now practising as prescribers, noted themes of organisational and infrastructure challenges, monitoring of prescribing practice and the evolution of paramedic roles. Conclusion: Paramedic prescribing is rapidly expanding and evolving into new clinical areas. As such, careful consideration should be given to not only the resourcing of prescribers as individuals, but also the wider organisational and technological support and structures needed to be in place to allow paramedic prescribers to fulfil their roles and utilise their advanced practice skills.

Exploring sexual dysfunction in care homes.

Sexual needs and sexuality in older adults continues to be a neglected area of clinical intervention, particularly in longer term care settings. This is often due to older adults in long term care beds presenting with increased frailty, and often with significant neurocognitive disorders, making it difficult for care staff to evaluate the capacity of an older adult resident to participate in sexual activities or a sexual relationship. Talking about sexuality, intimacy and sexual health can be embarrassing at any age and sex is often still considered taboo for people who live in care homes. The World Health Organization recently declared that sexual health is a central aspect of life and that each individual has the right to love and be loved, to receive appropriate information and treatment, and to enable intimate relationships and personal control over sexual behavior. This chapter explores sexual behaviors, and barriers to this, in later life, and focuses on the sexual behavior of care home residents with Parkinson's disease. Reasons for sexual dysfunction, potential age-related changes to sexual functioning, along with issues such as changes to body image, intimacy and hyper sexuality, are examined for people with Parkinson's disease. Recommendations for practice are given, and acknowledge that older people may still want to be sexually active or intimate is the first step to addressing the issues and overcoming any barriers.

Cost-effectiveness analysis of the Parkinson's KinetiGraph and clinical assessment in the management of Parkinson's disease.

AIMS: The Parkinson's KinetiGraph (PKG) is a wrist-worn movement recording system that collates continuous, objective, data during daily activities in people with Parkinson's disease (PD) providing a report for clinicians. This study explores the cost-effectiveness of adding the PKG to routine PD assessments. METHODS: A de novo Markov model of three health states: uncontrolled, controlled and death compared PKG plus routine assessment by a Movement Disease Specialist (MDS) versus routine assessment. Uncontrolled and controlled states were based on the Movement Disorder Society - Unified Parkinson's Disease Rating Scale (MDS-UPDRS) II and III scores. The transition between health states was dependent on improvement in MDS-UPDRS II and III, and transition to death state on all cause-mortality and PD-specific relative mortality risk. Markov cycle length was yearly beyond year 1 and lifetime horizon 22 years. LIMITATIONS: PKG evidence incorporated in this analysis is based on findings from one clinical trial. Health state utilities were mapped and the probability of patients progressing from uncontrolled to controlled health state at the second visit and beyond was derived from a bootstrap method which assumed a normal distribution for MDS-UPDRS. RESULTS: The addition of the PKG to usual PD assessments is a cost-effective intervention. PKG plus routine assessment is associated with lower total costs compared to routine assessment (£141,950 versus £159,312) and improved quality-adjusted life years (7.88 versus 7.61), resulting in an incremental cost-effectiveness ratio of -£64,978.99 and a net monetary benefit of £22,706.37 using a £20,000 threshold. Results were robust across sensitivity and scenario analyses. CONCLUSIONS: Management of PD involves monitoring and evaluation of symptoms to assess disease progression and ensure appropriate treatment choices. Adding the PKG to clinical assessment in routine care allows for improved and objective identification of PD motor symptoms which can be used in clinical decision making to improve patient outcomes.

Hospital doctors caring for people with Parkinson's disease (PwP) regularly monitor and assess their patients' symptoms, relying on patient recall and patient-completed diaries to find out about current symptoms, which can be unreliable. The Parkinson's KinetiGraph (PKG) is a wrist-worn device that collects continuous information on movement in PwP. A report is then provided to the patient's Consultant helping them to understand the PwP's symptoms and make decisions about changing medication to improve symptom control.An economic model compared asking patients to wear a PKG device for 6 days before their check-up appointment with their Consultant with usual check-up without the PKG. Information from a clinical trial exploring the use of PKG provided data on Movement Disorder Society ­ Unified Parkinson's Disease Rating Scale (MDS-UPDRS) II and III scores, which were used in the model to predict improvements in quality of life and whether PwP had controlled or uncontrolled disease.The model showed that addition of PKG to usual check-ups is a cost-effective approach. Use of the PKG reduced costs (£141,950 versus £159,312 for usual check-ups) and had a positive impact on quality and quantity of life as measured by quality adjusted life years (7.88 versus 7.61).This study shows that adding the PKG to routine check-ups allows Consultants to accurately assess movement (or motor) symptoms in PwP, which can then be used to ensure optimal mediation choice and improve patient outcomes.

Covid-19 and Parkinson's disease: Nursing care, vaccination and impact on advanced therapies.

The Coronavirus Disease 2019 (Covid-19) pandemic has created many challenges for the Parkinson's Disease (PD) care service delivery, which has been established over the past decades. The need for rapid adjustments to the new conditions has highlighted the role of technology, which can act as an enabler both in patient-facing aspects of care, such as clinical consultations, as well as in professional development and training. The Parkinson's Disease Nurse Specialists (PNSs) play a vital role in the effective management of people with PD (PwP). Maintaining optimum functionality and availability of device aided therapies is essential in order to ensure patients' quality of life. PwP are particularly recommended to use vaccination as a basic protection from the virus. The long-term consequences of this pandemic on PwP are highly uncertain, and education, support and reassurance of patients and their families may help ease their burden.

Driving and Parkinson's Disease: A Survey of the Patient's Perspective.

BACKGROUND: Parkinson's disease (PD) is a multi-system disorder that can impact on driving ability. Little is known about how these changes in driving ability affect people with PD, making it difficult for clinicians and carers to offer appropriate support. OBJECTIVE: To assess patient views concerning the effect of PD on their driving ability, the impact of these changes and how they manage them. METHOD: An online survey was created by a team of clinicians, people with PD, their carers, and representatives from Parkinson's UK. People with PD throughout the United Kingdom were invited to participate through Parkinson's UK's website, newsletter and Parkinson's Excellence Network email list. RESULTS: 805 people with PD took part in the survey. We found that the loss of a driving licence had an adverse impact on employment, socialisation, travel costs and spontaneous lifestyle choices. Multiple changes in driving ability related to PD were described, including that impulse control disorders can have an adverse impact on driving. Changes in driving ability caused people to change their driving practices including taking shorter journeys and being less likely to drive at night. Participants advised managing changes in driving ability through planning, vehicle adaptions, maintaining skills and self-assessment. CONCLUSION: This study demonstrates the impact that changes in driving ability can have on the lifestyle of people with PD and reveals the strategies that individuals adopt to manage these changes.

Exploring and understanding the scope and value of the Parkinson's nurse in the UK (The USP Project): a realist economic evaluation protocol.

INTRODUCTION: There are multiple configurations of specialist nurses working in the field of Parkinson's. Parkinson's Nurse Specialists (PNSs) are recognised as playing a pivotal role; however, there is little published evidence to demonstrate their effectiveness. Further evidence is needed to establish which aspects of the PNSs provide the greatest benefit to people with Parkinson's and their families, and the cost-effectiveness of different models of care. METHODS AND ANALYSIS: Realist approaches explain how and why programmes work (or not) through striving to answer the question: what works, for whom and under what circumstances. This research uses a realist evaluation and aims to integrate an economic analysis within the realist framework. We refer to this as 'realist economic evaluation'. It comprises four phases: (1) developing resource-sensitive initial programme theories (IPTs) using surveys to gain a better understanding of the role and impact (costs and benefits) of the PNSs; (2) testing the IPTs through qualitative interviews and quantitative data analysis; (3) evaluating the cost and resource use implications alongside the benefits associated with the role of the PNSs and (4) iteratively refining the IPTs throughout the project. The IPTs will draw on both quantitative and qualitative data. The result of the study will be a series of refined programme theories, which will explain how specialist nurses work in the field of Parkinson's in the UK, what impact they have on people with Parkinson's and their families and carers, and at what cost. ETHICS AND DISSEMINATION: Northumbria University, the Health Research Authority and Health and Care Research Wales have approved this study. Key findings will be disseminated throughout the duration of the project online and through social media, and via annual and regional Parkinson's meetings and the Parkinson's UK Excellence Network. Academic dissemination will occur through publication and conference presentations.

The Pattern of Hospital Admissions Prior to Care Home Placement in People With Parkinson's Disease: Evidence of a Period of Crisis for Patients and Carers.

Objectives: We hypothesized that the number and length of hospital admissions in people with Parkinson's disease (PD) would increase immediately prior to admission to a care home relative to those who were able to continue living at home or who died. Method: PD patients at Hoehn and Yahr Stages III to V were followed-up over two and a half years with deaths and care home placements recorded. Hospital admissions data were collected over this period. Results: Of 286 patients included in the study, 7.3% entered a care home and 28.3% died. In the final 120 days prior to the study exit point (care home placement, death, or continued living at home), longer hospital stay was significantly associated with care home placement, after adjusting for the competing risk of death. Conclusion: Our data provide evidence that, for many people with PD, a period of crisis is reached immediately prior to care home placement.

Developing an information prescription service.

BACKGROUND: Availability and accessibility of high-quality information is inconsistent nationally and improving information is central to Department of Health policy. This article outlines an information prescription (IP) pilot. AIM AND METHOD: Using a quality-improvement cycle, feedback was gathered from stakeholders to develop an IP service for people with Parkinson's disease and their relatives/carers. RESULTS AND DISCUSSION: Generally, service users were satisfied with the information and felt it enabled them to better understand, manage and be in control of their condition. Despite initial concerns, health staff identified benefits to themselves and patients. Barriers to implementing IPs were discussed.

Developing an innovative online medication calculator for patients with Parkinson's disease who are nil by mouth.

Missed Parkinson's disease (PD) medications when patients are admitted to hospital are associated with increased -morbidity and mortality. Swallowing difficulties in hospitalised PD patients are common and should prompt clinicians to -consider conversion of a patient's PD medications to a non-oral form - this is, however, recognised as a challenging area with potential for error. Northumbria Healthcare NHS Foundation Trust's PD service set out to address this patient safety issue through the development of an innovative online medication -calculator (pdmedcalc.co.uk). This article summarises the development process underpinning the calculator, presents numerical data on the usage of the calculator and presents survey data -relating to user experiences of the calculator. Lastly, we highlight how user feedback has been used to refine subsequent iterations of the calculator and how use of the calculator has rapidly spread beyond our trust because of it being freely accessible online.

Medication use in people with late stage Parkinson's disease and parkinsonism living at home and in institutional care in north-east England: A balance of symptoms and side-effects?

BACKGROUND: People with Parkinson's disease (PD) and parkinsonism living in care homes (residential or nursing care) in the UK represent around 10-15% of all people with PD and 3-5% of all care home residents. There are few previous data on medication use in those living in care homes with PD. In this study we aimed to compare medication use in a representative cohort of people with PD living in care homes in north-east England with those living in their own homes. METHOD: All people with late stage (Hoehn and Yahr III-V) idiopathic PD, PD dementia, or atypical parkinsonian syndromes under the care of the Northumbria Healthcare NHS Foundation Trust PD service on 1st January 2015 were identified. Demographic, disease characteristics and medication use data were collected from an audit of medical notes of all those identified. RESULTS: We identified 377 people who met the inclusion criteria, 91 (24.1%) of whom were living in a care home. Disease stage, age and age at disease onset were all significantly higher and levodopa equivalent dose significantly lower in those living in care homes, although disease duration and levodopa dose were not. Greater age, lower levodopa equivalent dose and higher disease stage were independently associated with being in a care home. CONCLUSIONS: Although people in care homes had more advanced disease, they were on a significantly lower levodopa equivalent dose. This is likely to be due to the requirement to balance symptom management with drug side-effects.

Experience of care home residents with Parkinson's disease: Reason for admission and service use.

AIM: The care needs of people with Parkinson's disease (PD) are poorly understood. We aimed to investigate the factors that precipitate entry to institutional care, and on-going care needs once in care, within a representative cohort of community-dwelling people with PD. METHOD: All people with idiopathic PD, Parkinson's plus syndromes and vascular parkinsonism under the care of the Northumbria Healthcare NHS Foundation Trust PD service who were living in care homes on 1 January 2013 were included. Disease severity (Hoehn and Yahr stage) and demographic data were collected. Admissions to hospital over the previous 2 years and in the year before institutional care admission were documented. RESULTS: A total of 90 patients (51 females) with a mean age of 81.3 years were included. During care home stay, the median number of emergency department attendances, the median number of hospital admissions and the median length of stay for those admitted per year were significantly lower than before care home admission. Both before care home admission and during care home stay, falls were the most common diagnoses in people attending emergency departments, with 32 of 65 (49.2%) admissions before and 34 of 59 (57.6%) admissions during care home stay having falls recorded as a cause of attendance. CONCLUSIONS: Hospital attendances and admissions were relatively common, even after institutional care home placement. Events precipitating admission, such as falls, might be preventable. PD nurse specialists could be an effective way to help train staff in homes where someone is known to have PD.