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.

Exercise for people with Parkinson's: a practical approach.

Exercise is key to a healthy and productive life. For people with Parkinson's, exercise has reported benefits for controlling motor and non-motor symptoms alongside the use of pharmacological intervention. For example, exercise prolongs independent mobility and improves sleep, mood, memory and quality of life, all further enhanced through socialisation and multidisciplinary team support. Recent research suggests that optimally prescribed exercise programmes following diagnosis may alter neurophysiological processes, possibly slowing symptom progression.Given its benefits, professionals should encourage and motivate people with Parkinson's to exercise regularly from the time of diagnosis and provide guidance on what exercise to do. We provide examples of how the growing body of evidence on exercise for people with Parkinson's is revolutionising the services they are provided. We also highlight new resources available to help the wider support network (people such as volunteers, partners and friends of people with Parkinson's) with an interest in exercise promote a consistent message on the benefits of exercise.

Improving Conversations about Parkinson's Dementia.

BACKGROUND: People with Parkinson's disease (PD) have an increased risk of dementia, yet patients and clinicians frequently avoid talking about it due to associated stigma, and the perception that "nothing can be done about it". However, open conversations about PD dementia may allow people with the condition to access treatment and support, and may increase participation in research aimed at understanding PD dementia. OBJECTIVES: To co-produce information resources for patients and healthcare professionals to improve conversations about PD dementia. METHODS: We worked with people with PD, engagement experts, artists, and a PD charity to open up these conversations. 34 participants (16 PD; 6 PD dementia; 1 Parkinsonism, 11 caregivers) attended creative workshops to examine fears about PD dementia and develop information resources. 25 PD experts contributed to the resources. RESULTS: While most people with PD (70%) and caregivers (81%) shared worries about cognitive changes prior to the workshops, only 38% and 30%, respectively, had raised these concerns with a healthcare professional. 91% of people with PD and 73% of caregivers agreed that PD clinicians should ask about cognitive changes routinely through direct questions and perform cognitive tests at clinic appointments. We used insights from the creative workshops, and input from a network of PD experts to co-develop two open-access resources: one for people with PD and their families, and one for healthcare professionals. CONCLUSION: Using artistic and creative workshops, co-learning and striving for diverse voices, we co-produced relevant resources for a wider audience to improve conversations about PD dementia.

Methodology of exercise resources development for professionals providing services for people with Parkinson's: a technical report.

The complexity of motor and non-motor symptoms seen in Parkinson's, with their variability and progressive nature, have a significant and potentially detrimental effect on mobility and subsequent quality of life for those with the condition. A considerable body of evidence now exists advocating the positive value of physical activity and exercise on both the motor and non-motor symptoms of Parkinson's, whilst limiting the impact and effects of the secondary complications. The literature is signposting to early adoption of higher intensity exercise, with reported benefits at a neurophysiological level, and a potential to influence a diminution in the rate of progression of the condition. It lacks clarity about structure of activity throughout the course of Parkinson's, and occasionally raises conflicting information about the differences in physical activity and 'best' exercise. This report describes the method for development of two Parkinson's exercise resources for professionals co-ordinated through the charity Parkinson's UK. The process uses the six-step Analytic Hierarchy Process to understand how the growing number of questions asked by people with Parkinson's, and by professionals about physical activity and exercise has informed: a) An Exercise Framework resource, which provides an understanding of what style of exercise might be beneficial, and just as significantly, takes into account the individual's changing needs and abilities over the course of Parkinson's, and b) An adaptable teaching template (PowerPoint Presentation) containing the supporting evidence for use by the exercise prescribing community.

Effects of Parkinson's on employment, cost of care, and quality of life of people with condition and family caregivers in the UK: a systematic literature review.

BACKGROUND: Parkinson's is an incurable, neuro-degenerative condition with multiple symptoms substantially impacting on living conditions and quality of life (QoL) for people with Parkinson's (PwP), most whom are older adults, and their families. The study aimed to undertake a literature review of studies conducted in the UK that quantify the direct or indirect impact of Parkinson's on people with the condition, their families, and society in terms of out-of-pocket payments and financial consequences. METHODS: Literature was searched for Parkinson's-related terms plus condition impact (eg, financial, employment, pension, housing, health care costs, and QoL) in the UK setting. The strategy probed several electronic databases with all retrieved papers screened for relevancy. The instruments used to measure patient-related outcomes were then examined for their relevancy in justifying the results. RESULTS: The initial search retrieved 2,143 papers of which 79 were shortlisted through title and abstract screening. A full-text reading indicated 38 papers met the inclusion and quality criteria. Summary data extracted from the articles on focus, design, sample size, and questionnaires/instruments used were presented in four themes: (a) QoL and wellbeing of PwP, (b) QoL and wellbeing of caregivers and family members, (c) employment and living conditions, and (d) direct and indirect health care and societal cost. CONCLUSION: UK results substantiated global evidence regarding the deterioration of QoL of PwP as the condition progressed, utilizing numerous measures to demonstrate change. Many spouses and family accept care responsibilities, affecting their QoL and finances too. The review highlighted increased health care and privately borne costs with condition progression, although UK evidence was limited on societal costs of Parkinson's in terms of loss of employment, reduced work hours, premature retirement of PwP and caregivers that directly affected their household budget.

Exploring Decisions to Undertake a Marathon and Adherence Challenges in a Novice Runner With Parkinson.

Evidence endorses the benefits of more vigorous exercise for people with Parkinson's, particularly following diagnosis, yet is not clear which style is optimal. The authors share perspectives and decisions made as a physiotherapist (assisted by a sports and exercise science student) and a novice runner with Parkinson's in his late 50s, respectively. The exercise goal chosen by the runner (the case report participant) to minimize the degenerative effects of the progressive condition was to complete a marathon. METHODS: This coauthored report evaluates the participant's progress utilizing physical fitness assessment data plus reflections on his training regime and notes from training diaries for the year before and after the marathon. RESULTS: The participant received nutritional advice for weight management as exercise increased and physiotherapy for injuries from mounting activity level on Parkinsonian muscle tone. Fitness and function improved or were maintained (leg power, flexibility, timed functional walking, and balance). Most, however, returned to baseline within 6 months following the marathon as training intensity dropped. CONCLUSIONS: Physical function can be improved or maintained in individuals with neurodegenerative conditions with correct exercise and nutritional advice. The participant's choice of running was based on recommendations for condition maintenance and not enjoyment, so adherence and completion of the marathon goal required professional, family, and technological support.

Good-quality social care for people with Parkinson's disease: a qualitative study.

OBJECTIVES: The study examines the meaning of good-quality social care for people with Parkinson's disease and their carers. It identifies, from their perspective, the impact of good-quality social care on health and well-being. DESIGN: Qualitative case study methodology, interview and framework analysis techniques were used. SETTING: community locations in the north and midlands of England. PARTICIPANTS: Data were collected from 43 participants including individual interviews with people with Parkinson's disease (n=4), formal and informal social care providers (n=13), 2 focus groups, 1 with people with Parkinson's disease and their carers (n=17), and 1 with professionals (n=8), plus a telephone interview with a former commissioner. FINDINGS: Good-quality social care, delivered in a timely fashion, was reported to have a positive impact on health. Furthermore, there is an indication that good-quality social care can prevent untoward events, such as infections, symptom deterioration and deterioration in mental health. The concept of the 'Impact Gap' developed from the findings, illustrates how the costs of care may be reduced by delivering good-quality social care. Control, choice and maintaining independence emerged as indicators of good-quality social care, irrespective of clinical condition. Participants identified characteristics indicative of good-quality social care specific to Parkinson's disease, including understanding Parkinson's disease, appropriate administration of medication, timing of care and reassessment. 'Parkinson's aware' social care was seen to generate psychological, physical and social benefits that were inter-related. CONCLUSIONS: The findings indicate how maximising quality in social care delivery for people with Parkinson's disease can impact on health and well-being. Long-term or short-term benefits may result in prevented events and reductions in health and social care resource. Health professionals can be instrumental in early detection of and signposting to social care.