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Objective: A diagnosis of Parkinson's often leads to uncertainty about the future and loss of perceived control. Peer support may offer a means to address these concerns and promote self-management. Design: A programme evaluation of the feasibility and potential effects of 'First Steps', utilising a pragmatic step wedge approach. Comparing First Steps (intervention) to (control) conditions. Setting: In the community at four sites in southern England. Participants: Newly diagnosed (≤ 12months) people with Parkinson's. Intervention: First Steps was a 2-day peer-conceived, developed and led intervention to support self-management. Main measures: At 0, 12 and 24 weeks anxiety and depression (Hospital, Anxiety and Depression Scale, HADS), daily functioning (World Health Organisation Disability Assessment Schedule, WHODAS), physical activity, quality of life (EQ5D), carer strain and service utilisation were assessed. Results: Between February 2018 and July 2019, 36 participants were enrolled into intervention and 21 to control conditions, all were included in statistical analysis. Lost to follow up was n = 1 (intervention) and n = 1 adverse event was reported (control, unrelated). Of the 36 allocated to the intervention n = 22 participants completed both days of First Steps during the study period. Completion of outcome measures was >95% at 24 weeks. Small effects favouring the intervention were found for HADS (odds ratio (OR) = 2.06, 95% confidence interval (CI) 0.24:17.84), Carer Strain Index (OR = 2.22, 95% CI 0.5:9.76) and vigorous (d = 0.42, 95% CI −0.12:0.97) and total physical activity (d = 0.41, 95% CI −0.13:0.95). EQ5D, WHOSDAS and service utilisation, was similar between groups. Conclusions: First Steps was feasible and safe and we found potential to benefit physical activity, mental health and carer strain. Further research with longer-term follow up is warranted. [ABSTRACT FROM AUTHOR]

To explore, in a European cohort of people living with Parkinson's (PD), issues affecting employment and economic consequences, considering age at diagnosis. A cross-sectional survey (European convenience sample). Inclusion criteria were ≥18 years, a PD diagnosis and in work when diagnosed. Data were collected online on demographics, employment status, occupation, and perceived health. For those no longer in paid work, time from diagnosis until loss of employment, reasons for leaving and enablers to stay in work were ascertained. Between April and November 2019, n = 692 enrolled and n = 560 were eligible. Those who had lost paid work (n = 190, 34%) reported worse fatigue, sleep, and general health than those still in work (p < 0.05). Average annual income reduced from €26973.48 ± 12013.22 (year-1) to €14843.85 ± 16969.84 (year-10). Post-diagnosis lost employment potential was 20.1 (95% confidence interval (CI): 16.6–23.6) years at career establishment, 9.8 (95%CI: 8.9–10.7) years at mid working and 1.2 (95%CI: 0.6–1.6) years for those nearing retirement age. A greater proportion of individuals at career establishment age reported dexterity, eating, sleep, fatigue, and anxiety as factors for leaving work (p < 0.05). This study confirms lost productivity after a PD diagnosis, especially in those with many years of potential employment ahead. The study also identified potential targets for interventions. Clinical trial registration: Clincaltrials.gov (NCT03905954). People with Parkinson's diagnosed at career establishment or at mid working age risk losing many years of potential employment. Most people with Parkinson's do not receive early intervention to support self-management of problems identified with leaving work early, such as fatigue. Adaptations to the work environment and more flexible working patterns were identified factors that may help people remain in work. [ABSTRACT FROM AUTHOR]

Aim: The dual aim of this research was to consider the impact of providing the First Steps program on the stories of people with Parkinson's Disease (PD) and to investigate the psychosocial and emotional mechanisms which may explain this impact. Methods: A qualitative study using a subtle realist paradigm and hermeneutic phenomenological methodology was undertaken. A single semi-structured interview was used to consider the impact and experiences of people with PD who completed either the intervention (2-day peer-led behavior intervention using storytelling 6–8 weeks apart) or received telephone support calls as part of the active control group. Descriptive statistics and a narrative analysis were undertaken on the results. Results: Forty-two participants were invited to participate, forty of whom completed the interview. This included 18 from the intervention group and 22 from the active control group. The intervention group identified the value of the program as worth-while, demonstrating improved exercise behavior and coping mechanisms following the intervention. Three major stories (the affirmed, the validated and the transformed story) identified the impact of the intervention. Three internal mechanisms (perceived control, hope and action, and the individual's mind set) alongside three social mechanisms (social comparison, social control and the first opportunity to share with peers) appeared to explain this impact. Conclusion: This study provides exciting and novel evidence of the impact of a peer-led psycho-educational intervention for people newly diagnosed with PD. Further research is needed to consider the impact of stories-based approaches on participants and consider a critical evaluation of the mechanisms which may explain changes in stories and self-reported behaviour. [ABSTRACT FROM AUTHOR]