Joy Read

Managing Parkinson’s disease (PD) symptoms can be challenging due to multiple factors, including complex symptoms, which are often reported late, and a lack of resources, resulting in worse outcomes. Self‐management of PD symptoms is a priority for patients, their carers, healthcare staff and systems. However, there is no effective comprehensive self‐management intervention for use in the United Kingdom to support people with PD to self‐manage problematic symptoms. We have developed a facilitated self‐management toolkit through literature reviews and co‐design workshops. We conducted a single‐group, pre–post feasibility study to evaluate the feasibility and acceptability of this toolkit, ahead of a randomised controlled trial (RCT). We assessed the feasibility of the study by measuring recruitment rate, retention rate, data completion, outcome measures and serious adverse events. In addition, we collected fidelity data to ensure the intervention was delivered as designed. For acceptability, we measured participants’ engagement through attendance at sessions, as well as through a feedback survey completed by participants at follow‐up. In a subgroup of participants, we conducted semistructured interviews to gain feedback on what participants thought was good and what could be improved with the intervention, as well as how acceptable the trial procedures were. All quantitative data were summarised descriptively, and qualitative data were analysed using codebook thematic analysis. We successfully recruited the target population within a predefined timeline, maintained intervention engagement and completed sufficient follow‐up, with limited missing data and no intervention‐related serious adverse events. The intervention was delivered with 93% fidelity, and 89% of participants were engaged. Participants found the supporter sessions most helpful, followed by information pages, and setting person‐centred goals. Having all their PD information in one place was seen as valuable, as well as talking through their challenges and problem‐solving how to overcome them. The toolkit is now being tested in a national RCT. Trial Registration: ISRCTN registry: ISRCTN92831552

Background: Parkinson's disease is a complex progressive neurodegenerative disease increasing globally. Self‐management interventions have shown promise in improving the quality of life for people with chronic conditions. This paper aims to describe the development processes and the core components of a facilitated self‐management toolkit to support people with Parkinson's disease to self‐manage their condition.Methods: An iterative co‐design approach was adopted and included the use of systematic reviews, qualitative methods and theory to develop the Live Well with Parkinson's toolkit. A co‐design group was established consisting of people with Parkinson's, family carers and health and social care experts to produce and refine an online self‐management toolkit to be tested in practice. Five co‐design groups were conducted alongside several phases of toolkit development.Results: An online self‐management toolkit, called Live Well with Parkinson's, was developed with core aspects such as tailored information to the individual, a well‐being section using an asset‐based approach and problem‐solving skills to create and maintain goals, symptom review and management sections and a tracker of medication, symptoms and activities/actions. A paper‐based alternative version was also created for those who cannot use an online resource. The toolkit is fully manualised and facilitated by six sessions from a ‘supporter’ who is trained in behaviour change techniques. It can be shared with carers and healthcare professionals.Conclusion: The toolkit is a robust and comprehensive approach to self‐management of Parkinson's disease. It is evidenced based, incorporates theory and was developed with people with Parkinson's and experts in the area. The Live Well with Parkinson's toolkit has the potential to be embedded within routine healthcare, aligning with self‐management policies.Patient or Public Contribution: Author B.M. is our patient and public involvement (PPI) representative and author on this paper. B.M. supports a team of 15 PPI members who have contributed to the development of the toolkit. This involvement has included attending research team and steering group meetings, attending and facilitating co‐designed workshops, reviewing all the toolkit information before approval and supporting with the user testing.

Background: Cognitive impairment is common in Parkinson's disease and is associated with poorer quality of life and increased caregiver distress, but little qualitative information is available on lived experiences of people with Parkinson's who also have cognitive impairment.Objectives: The aim of this study was to explore the challenges of cognitive impairment in Parkinson's, triangulating the perspectives of people with Parkinson's, caregivers and healthcare professionals.Methods: Semistructured interviews were conducted with 11 people with Parkinson's and cognitive impairment, 10 family caregivers and 27 healthcare professionals, using purposive sampling in the United Kingdom (2019–2021). Cognitive impairment was identified by healthcare professionals and required subjective symptoms. Relevant cognitive diagnoses were recorded. Interviews were audio‐recorded, transcribed and analysed using reflexive thematic analysis.Results: An overarching concept of the compound impact of cognitive and physical decline was developed, with six themes. Four themes describe the experience of living with cognitive impairment in Parkinson's: (1) Challenges in Daily Activities, (2) Psychological Impact and (3) Evolving Communication Difficulties together contributing to (4) Social Shift, encompassing a reduction in wider social activities but intensification of close relationships with increased dependence. A fifth theme (5) Living Well describes positive influences on these experiences, encompassing intrinsic motivation, self‐management strategies and supportive relationships. Furthermore, underlying and shaping the whole experience was the sixth theme: (6) Preconceptions about Cognitive Impairment, describing fear and denial of symptoms and poor understanding of the nature of cognitive impairment in Parkinson's, with differences to other dementia pathologies.Conclusions: Cognitive impairment superimposed on the existing challenges of Parkinson's has a multifaceted impact and makes living with the condition arduous. Increased understanding of the experiences of this group and employing the identified facilitators for living well may be able to improve patient and caregiver experiences.Patient or Public Contribution: Two people with Parkinson's and cognitive impairment and three caregivers contributed to the study. Between them they contributed throughout the entirety of the project, giving input at conceptualisation as well as advice and review of interview questions, participant information leaflets, recruitment, interpretation of findings and summaries of the project.

Background. Cognitive impairment is common in Parkinsons disease (PD) and associated with lower quality of life. Cognitive impairment in PD manifests differently to other dementia pathologies. Provision of optimal care requires knowledge about the support needs of this population. Methods. Eleven people with PD and cognitive impairment (PwP), 10 family caregivers, and 27 healthcare professionals were purposively sampled from across the United Kingdom. Semistructured interviews were conducted in 20192021, audio-recorded, transcribed, and analysed using reflexive thematic analysis. Results. Cognitive impairment in PD conveyed increased complexity for clinical management and healthcare interactions, the latter driven by multifactorial communication difficulties. Techniques that helped included slow, simple, and single messages, avoiding topic switching. Information and emotional support needs were often unmet, particularly for caregivers. Diagnostic pathways were inconsistent and awareness of cognitive impairment in PD was poor, both contributing to underdiagnosis. Many felt that PwP and cognitive impairment fell through service gaps, resulting from disjointed, nonspecific, and underresourced services. Personalised care was advocated through tailoring to individual needs of PwP and caregivers facilitated by flexibility, time and continuity within services, and supporting self-management. Conclusions. This study highlights unmet need for people with this complex condition. Clinicians should adapt their approach and communication techniques for this population and provide tailored information and support to both PwP and caregivers. Services need to be more streamlined and collaborative, providing more time and flexibility. There is a need for wider awareness and deeper understanding of this condition and its differences from other types of dementia.

Background. The complex nature of late-stage Parkinsons 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 Parkinsons, 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 Parkinsons 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 Parkinsons.

Background: The COVID-19 pandemic led to many consultations being conducted remotely. Cognitive impairment is recognized as a potential barrier to remote health care interactions and is common and heterogeneous in Parkinson disease. Studies have shown remote consultations in Parkinson disease to be feasible, but little is known about real-life experience, especially for those with cognitive impairment. We explored the experiences and perceptions of remote consultations for people with Parkinson disease and cognitive impairment. Objective: This study aimed to explore the experiences of remote consultations for people with Parkinson disease and cognitive impairment from the perspective of service users and professionals and investigate considerations for future service delivery. Methods: Semistructured interviews were conducted remotely with 11 people with Parkinson disease and cognitive impairment, 10 family caregivers, and 24 health care professionals (HCPs) between 2020 and 2021. Purposive sampling was used. Interviews were audio-recorded, transcribed, and analyzed using reflexive thematic analysis. Results: Overall, four themes were identified: “the nature of remote interactions,” “challenges exacerbated by being remote,” “expectation versus reality,” and “optimizing for the future.” Remote consultations were considered as “transactional” and less personal, with difficulties in building rapport, and considered to play a different role from that of in-person consultations. The loss of nonverbal communication and ability of HCPs to sense led to remote consultations being perceived as riskier by all groups. Issues arising from communication and cognitive impairment, balancing the voices of the person with Parkinson disease and the caregiver, and discussions of the future affect this population specifically. Remote consultations were reported to have been more successful than anticipated in all 3 groups. Obstacles were not always as expected; for example, age was less of a barrier than predicted. Video consultations were perceived as being preferable to telephone consultations by many participants, but not accessible to all people with Parkinson disease. With widespread expectation of ongoing remote consultations, potential improvements for these 3 groups and health care services were identified, including practice, preparation, increased awareness of issues, expectation management by HCPs, and more time and flexibility for consultations. Conclusions: Advantages and challenges of remote consultations for this population are identified. Consultations could be improved with increased support, practice, preparation, awareness of issues, and more time and flexibility within services.

Background. Self-management strategies are important in healthcare for people with Parkinsons to improve daily living. There is limited evidence on effectiveness in Parkinsons, and the active components of effective self-management strategies are uncertain. This review aims to identify and synthesise the qualitative evidence regarding the experiences of self-management components by people with Parkinsons and their carers. Methods. MEDLINE, PsycINFO, Embase, Web of Science, and CINAHL were searched from inception to July 8, 2020, for qualitative research concerning self-management for people with Parkinsons. Data were coded and thematically synthesised using NVivo. Findings. Of 9547 search results, six papers were included in the final thematic synthesis. The studies reviewed consisted of 147 participants: 104 were people with Parkinsons and 43 were carers. Seven main themes were derived concerning self-management of people with Parkinsons: (1) medication management, (2) physical exercise, (3) self-monitoring techniques, (4) psychological strategies, (5) maintaining independence, (6) encouraging social engagement, and (7) providing knowledge and information. These components should be incorporated as relevant strategies and techniques and should be specific as well as tailored to different stages of the disease. Discussion. Self-management programmes for people with Parkinsons should include the seven themes presented as part of this review and pay particular attention to presenting relevant information and skills as they relate to different stages of the disease. Tailoring information and social engagement were two components that required specific attention in order to engage people with Parkinsons effectively.

To explore experiences of health services and unmet care needs by people with late-stage Parkinson’s in England. Ten participants, at Hoehn and Yahr stage 4 or 5, were interviewed using semi-structured open-ended questions. Data were analysed using qualitative thematic analysis. Participants reported that whilst under the treatment of specialist hospitals, the majority of care provision had shifted into the community, often because hospital-based services were felt to be difficult to access and have limited benefit to them. When using health-care services, participants frequently experienced having to ‘fit-in’ to service structures that did not always accommodate their complex needs. Despite high levels of disability, participants expressed their desire to maintain their identity, normality of interests and activities in their lives, including remaining in their own homes. This was facilitated by bespoke care and equipment, and positive relationships with care providers. Knowledge on disease management was a key factor in their perceived ability to remain in control. Family caregivers had a central role in facilitating care at home. There was uncertainty about and little planning for the future, and moving to a residential nursing home was perceived an undesirable but potentially necessary option for future care. Unmet care needs identified by people with late stage Parkinson’s in England include greater flexibility of healthcare structures and bespoke service provision, to accommodate their individual complex needs. Support in their own homes and positive relationships with healthcare providers help People with Parkinson’s (PwP) to maintain a degree of normality and identity, and provision of information help them maintain some control. There is a need for more informed discussions on future care planning for this specific population.

Background: Given the multifaceted nature of this inherited neurodegenerative condition, typically affecting adults in mid-life, it is perhaps not surprising that studies indicate poorer Health Related Quality of Life (HrQoL) in those with the gene-e