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.

A Survey of People With Parkinson's and Their Carers: The Management of Pain in Parkinson's.

BACKGROUND: Pain in Parkinson's is problematic but under treated in clinical practice. Healthcare professionals must understand the impact of pain in Parkinson's and patient preferences for management. OBJECTIVE: To understand the impact of pain in Parkinson's and to understand current management and preferences for pain management. METHODS: We conducted a national survey with 115 people with Parkinson's (PwP) and 10 carers. Both closed and open questions were used. The questions focused on how pain affected the individual, healthcare professional involvement in supporting pain management, current pain management strategies and views on future pain management interventions. We used descriptive statistics to summarize closed responses and thematic analysis to summarize open question responses. RESULTS: 70% of participants reported pain impacted their daily life. Pain had a multifactorial impact on participants, affecting movement, mood and quality of life. Improved pain management was viewed to have the potential to address each of these challenges. Pain affected a number of different sites, with low back pain and multiple sites being most frequently reported. Exercise was the most frequently noted strategy (38%) recommended by healthcare professionals for pain management. PwP would value involvement from healthcare professionals for future pain management, but also would like to self-manage the condition. Medication was not suggested as a first line strategy. CONCLUSIONS: Despite reporting engagement in some strategies to manage pain, pain still has a wide-ranging impact on the daily life of PwP. Results from this survey highlight the need to better support PwP to manage the impact of pain.

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.

International, multi-disciplinary, cross-section study of pain knowledge and attitudes in nursing, midwifery and allied health professions students.

BACKGROUND: Persistent pain is a highly prevalent, global cause of disability. Research suggests that many healthcare professionals are not well equipped to manage pain, and this may be attributable at least in part to undergraduate education. The primary aim of this study was to quantify and compare first and final year nursing, midwifery and allied health professional (NMAHP) students' pain related knowledge and attitudes. The secondary aim was to explore what factors influence students' pain related knowledge and attitudes. METHODS: In this cross-sectional study, 1154 first and final year healthcare students, from 12 universities in five different countries completed the Revised Neurophysiology of Pain Quiz (RNPQ) [knowledge] and the Health Care Providers Pain and Impairment Relationship Scale (HC-PAIRS) [attitudes]. RESULTS: Physiotherapy was the only student group with statistically and clinically improved pain related knowledge [mean difference, 95% CI] (3.4, 3.0 to 3.9, p = 0.01) and attitudes (-17.2, -19.2 to 15.2, p = 0.01) between first and final year. Pain education teaching varied considerably from course to course (0 to 40 h), with greater levels of pain related knowledge and attitudes associated with higher volumes of pain specific teaching. CONCLUSIONS: There was little difference in pain knowledge and attitudes between all first and final year NMAHP students other than physiotherapy. This suggests that for most NMAHP disciplines, undergraduate teaching has little or no impact on students' understanding of pain. There is an urgent need to enhance pain education provision at the undergraduate level in NMAHPs. TRIAL REGISTRATION: The study protocol was prospectively registered at ClinicalTrials.Gov NCT03522857 .

Pain and the Non-Pharmacological Management of Pain in People with Parkinson's Disease.

Pain is a distressing and universal experience, yet everyone's pain experience is influenced by a complex array of biological, psychological, and social factors. For people with Parkinson's disease (PwP), these biopsychosocial factors include neurodegeneration and the psychological and social factors that accompany living with a chronic, neurodegenerative condition in addition to the factors experienced by those in the general population (e.g., living with co-morbidities such as osteoarthritis). The way these factors influence each individual is likely to determine which pain management strategies are optimal for them. This review first describes pain and the biopsychosocial model of pain. It explores how pain is classified in Parkinson's disease (PD) and describes the three main types of pain: nociceptive, neuropathic, and nociplastic pain. This background provides context for a discussion of non-pharmacological pain management strategies that may aid in the management of pain in PwP; exercise, psychological strategies, acupuncture and massage. While there is little PD-specific research to inform the non-pharmacological management of pain, findings from current PD research are combined with that from chronic pain research to present recommendations for clinical practice. Recommendations include assessment that incorporates potential biopsychosocial contributors to pain that will then guide a holistic, multi-modal approach to management. As exercise provides overall benefits for PwP, those with chronic pain should be carefully monitored with exercise prescribed and adjusted accordingly. Research is needed to develop and evaluate multi-modal approaches to pain management that are delivered in a biopsychosocial framework.

Coproduction and Usability of a Smartphone App for Falls Reporting in Parkinson Disease.

OBJECTIVE: The purpose of this study was to coproduce a smart-phone application for digital falls reporting in people with Parkinson disease (PD) and to determine usability using an explanatory mixed-methods approach. METHODS: This study was undertaken in 3 phases. Phase 1 was the development phase, in which people with PD were recruited as co-researchers to the project. The researchers, alongside a project advisory group, coproduced the app over 6 months. Phase 2 was the implementation phase, in which 15 people with PD were invited to test the usability of the app. Phase 3 was the evaluation phase, in which usability was assessed using the systems usability scale by 2 focus groups with 10 people with PD from phase 2. RESULTS: A prototype was successfully developed by researchers and the project advisory group. The usability of the app was determined as good (75.8%) by people with PD when rating using the systems usability scale. Two focus groups (n = 5 per group) identified themes of 1) usability, 2) enhancing and understanding management of falls, and 3) recommendations and future developments. CONCLUSIONS: A successful prototype of the iFall app was developed and deemed easy to use by people with PD. The iFall app has potential use as a self-management tool for people with PD alongside integration into clinical care and research studies. IMPACT: This is the first digital outcome tool to offer reporting of falls and near-miss fall events. The app may benefit people with PD by supporting self-management, aiding clinical decisions in practice, and providing an accurate and reliable outcome measure for future research. LAY SUMMARY: A smartphone application designed in collaboration with people who have PD to record their falls was acceptable and easy to use by people with PD.

Exercise Perceptions and Experiences in Adults With Crohn's Disease Following a Combined Impact and Resistance Training Program: A Qualitative Study.

Background: Exercise is increasingly being recognized to counteract specific complications of Crohn's disease (CD). The aim of this study was to explore exercise experiences and perceptions after engaging in a combined impact and resistance training program, involving both intervention and control group viewpoints. Methods: Semistructured telephone interviews, involving a convenience sample of participants with CD (n = 41; aged 49.1 ± 12 years) were undertaken up to 6 weeks following completion of the program. Data were analyzed using thematic analysis. Results: Four overarching themes emerged, along with 11 subthemes: (1) Lack of confidence and knowledge, fears surrounding physical ability and symptoms, coupled with issues not addressed as part of the healthcare pathway played a part in transitioning to inactivity; (2) Improvements in strength, mental well-being, physical fitness, fatigue, abdominal and joint pain, comorbidities, and self-management strategies were among the reported benefits of exercise participation; (3) Seeing progress, goal setting, enjoyment, and a peer-led program receiving support and advice increased motivation. Whereas work-related tiredness, other commitments, and self-directed exercise were reported as exercise barriers; (4) The intervention design was well received and the journey from start to finish was positively discussed, important considerations for future interventions and implementation strategies. Conclusions: The study yielded novel perceptions on the transition to inactivity following receiving a diagnosis, physical and psychological benefits accruing from the intervention, and views on program design. Information that will provide an essential step in the development of implementing exercise guidelines into the clinical pathway and supporting individuals with self-management options.

Physiotherapists clinical reasoning to prescribe exercise for patients with chronic pain: A qualitative study research protocol.

BACKGROUND: Physiotherapists' play a key role in the management of chronic pain, and as part of the National Institute for Health and Care Excellence (NICE) guidelines, prescribe exercise to support patients with chronic pain. However, there is very limited evidence supporting physiotherapists on what type of exercise or dose of exercise should be prescribed. Physiotherapists' therefore have more onus on their ability to clinically reason how to prescribe exercise. At present, there is no research investigating how physiotherapists' working with patients that have chronic pain, clinically reason when prescribing exercise. This study proposes to investigate how physiotherapists experienced in pain management prescribe exercise, to understand what the key influences are on their reasoning, and how these impact on clinical practice. METHODS: This will be a qualitative study, utilising semi-structured individual interviews. Participants will be Health and Care Professions Council registered physiotherapists, working predominantly with patients that have chronic pain. Recruitment will focus on physiotherapists working within the United Kingdom (UK). Up to twenty participants will be recruited. The study, including the interview guide, will be supported by a steering group consisting of academics and physiotherapists experienced in chronic pain. The data will be analysed using framework analysis. RESULTS: The study will be reported using the COnsolidated criteria for REporting Qualitative research (COREQ) guidelines. The findings of the study will be disseminated through publication in a peer reviewed journal. CONCLUSION: This study will provide novel insight into how physiotherapists experienced working with and managing chronic pain patients, prescribe exercise, and will gain new insight into clinical practice to help inform future research and education.

Yoga and Multiple Sclerosis: Maintaining engagement in physical activity.

BACKGROUND: Physical activity is encouraged for people with Multiple Sclerosis. Yoga is a popular form of physical activity and is chosen by some people with Multiple Sclerosis. However, little is known about the impact of yoga for this population, alongside what influences ongoing engagement. AIM: The aim of this study is to qualitatively explore the impact of online home-based yoga on people with Multiple Sclerosis and to explore factors that influence engagement. METHODS: A qualitative study using semi-structured interviews and focus groups with people with Multiple Sclerosis and a yoga teacher. Thematic analysis was used to analyse the data. Ethical Approval was gained from Northumbria University. FINDINGS: Three overarching themes emerged from the analysis. 'Yoga as engagement in physical activity' captured the reasoning for participating in yoga and how this method of physical activity was an alternative to physical activity done prior to diagnosis. Frustration was apparent within this theme that some individuals were unable to engage in the range of physical activity that they wished to. 'Yoga is a personalised approach' demonstrated the flexibility and inclusivity of yoga, for individuals with varying symptoms to be able to engage with. Finally, 'yoga impacts individuals both physically and psychologically' captured the focus on the psychological impact of yoga, improving wellbeing and control. CONCLUSIONS: Yoga gives people with Multiple Sclerosis the feeling of control over their symptoms and a means to engage with meaningful physical activity. Prior involvement in physical activity influenced engagement in yoga and wanting to push themselves. There was reluctance among this group to engage with aerobic activity, which warrants future investigation and support from health and exercise professionals.

Yoga provision for individuals living with Multiple Sclerosis: Is the future online?

BACKGROUND: Yoga has multiple benefits for individuals living with Multiple Sclerosis (MS), including reduced pain, depression, fatigue, strength, and improved quality of life. During the COVID-19 pandemic, home-based delivery of yoga increased. However, no studies to date have explored online home-based yoga for individuals living with MS, more specifically the motivations, experiences, or the sustainability of home-based yoga practice for individuals living with MS. AIM: This study aimed to explore the facilitators and barriers of online yoga provision for individuals living with MS. METHODS: One focus group and three semi-structured interviews were carried out online via Zoom with one yoga instructor and seven yoga participants living with MS. Thematic Analysis was used to analyse this data. FINDINGS: Two themes were generated from the interviews, the environment and future provision, each with their own sub-themes. The themes reflect various facilitators and barriers of home-based yoga provision which differed depending upon the individuals home environment, social connections, physical ability, and confidence practising yoga. Furthermore, preferences of home provision fluctuated over time depending upon symptoms of MS. CONCLUSIONS: Home-based yoga practice is a viable and enjoyable option for individuals living with MS. It is recommended that yoga studios offering home-based yoga provision consider individual differences in preference, as well as fluctuations in symptoms that may create inequitable access to services and may prevent participation for some.

Patient perspectives of vigorous intensity aerobic interval exercise prehabilitation prior to radical cystectomy: a qualitative focus group study.

PURPOSE: Preoperative cardiopulmonary fitness is increasingly being recognized as an important factor influencing postoperative recovery outcomes in cancer patients. The aim of this study was to explore patient perspectives of preoperative high intensity aerobic interval exercise before radical cystectomy. MATERIALS AND METHODS: Focus groups involving a purposive convenience sample of patients with bladder cancer (N = 14; mean age ± SD: 72.3 ± 6.0 years) were undertaken in a hospital education department. Data were analyzed using Framework analysis. RESULTS: Participants identified physical (e.g., fitness) psychological (e.g., preparing for their operation) and social (e.g., peer support) benefits of the program. Key motivational factors for engaging in exercise prehabiliation were identified as social support, previous exercise experience and objective measures of progression. The need for clear information from healthcare providers to ensure that patients are adequately prepared for sessions was highlighted. CONCLUSIONS: This qualitative study provides new insights into the perspectives and experiences of patients with bladder cancer regarding participation in preoperative vigorous intensity aerobic exercise. The study yielded novel perceptions on the physical, psychological and social health benefits accruing from the exercise program and patient views on program design features, which are important for informing future interventions and implementation strategies.IMPLICATIONS FOR REHABILITATIONA preoperative high intensity aerobic interval exercise program before radical cystectomy provides physical, psychological and social benefits to individuals living with bladder cancer.Supervised exercise, objective improvement, and peer and family support all contribute to motivation to engage with preoperative high intensity aerobic interval exercise.Individuals may require support post-radical cystectomy in order to continue with exercise due to the uncertainty around this.