Abstract Purpose To explore, in a European cohort of people living with Parkinson’s (PD), issues affecting employment and economic consequences, considering age at diagnosis. Materials and methods 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. Results 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). Conclusions 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). Implications for rehabilitation 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.

Lost employment potential and supporting people with Parkinson’s to stay in work: insights from a Pan European cross-sectional survey

While motor symptoms are the most recognized features of Parkinson's disease (PD), cognitive dysfunction is a key determinant of consequences of PD in real-life. In this chapter we review important domains where cognitive dysfunction negatively impacts the lives of people with PD (PwPD), such as difficulties in occupational and social life, and instrumental ADLs such as driving. Early loss of employment has important effects for PwPD, their families, and society. PwPD experience higher rates of family and social discord as well as important changes in their social roles. These processes are largely mediated through cognitive dysfunction, particularly difficulties processing and understanding emotions, decreased attention, and executive dysfunction. Cognitive dysfunction is also an important mediator of driving impairments, which contributes to decreased independence in PwPD. Finally, we briefly review the costs associated with cognitive impairment in PD. Both indirect and direct costs for PwPD with cognitive impairment are substantially higher than for PwPD with normal cognition. 

Real-life consequences of cognitive dysfunction in Parkinson's disease.

Employment intervention is essential for supporting people with Parkinson's disease (PwPD), who leave the workforce on average 5 years earlier than those without Parkinson's disease (PD). We developed a framework for occupational therapists (OTs) to address employment for PwPD. Our qualitative analysis employed data source triangulation of environmental scan of resources and publications, electronic medical records data, and focus groups with clinicians and PwPD. The framework underwent expert panel review by OTs and researchers who are knowledgeable of current evidence-based practices for PD. The framework is based on the Person-Environment-Occupation-Performance (PEOP) Model and PEOP Occupational Therapy Process and comprised of four parts: PEOP features of PD relevant to employment, performance changes experienced by PwPD, a process to evaluate and address employment, and intervention ideas. This framework serves as an impetus to explore evidence-based, scalable, proactive intervention approaches to address employment in PwPD.

Applying PEOP to Develop an Intervention Framework for Employment in Parkinson's Disease.

Motor and nonmotor Parkinson’s disease (PD) symptoms can negatively influence employment, which may contribute to financial hardship. This article explores the association between financial hardship, employment challenges, and quality of life in people with early PD. We measured financial hardship with a validated summary item (5-point scale, lower score - less hardship) and the Comprehensive Score for Financial Toxicity (0-44, lower score worse toxicity) in a cohort of 60 employed individuals with early PD (< 5 years). We used Spearman’s Correlations and nonparametric tests to identify associations between financial hardship, demographic characteristics, PD-related factors, employment factors, and quality of life (Neuro-QOL computer adapted measures). The sample was mostly white (93%) and male (65%). The plurality were highly-educated with graduate degrees (42%). Of the 60 participants, 23 (38%) reported a little bit and 14 (23%) reported somewhat or more hardship. Comprehensive financial toxicity (22.0 ± 8.7) was correlated moderately (ρ = -0.56) with the single-item summary score. High financial hardship was associated with reduced confidence in job retention (ρ=-0.43, p=0.001) and reduced perceived workplace success (ρ=-0.352, p=0.006). Financial hardship was also associated with poorer quality of life in five Neuro-QOL domains: lower extremity function, satisfaction with social roles and activities, depression, anxiety, and stigma (p < 0.05). Financial hardship was common and was associated with employment challenges and poor quality of life. Further work should explore the effects of medical and psychosocial interventions to alleviate financial and employment challenges in individuals with early PD. 

Financial hardship is associated with employment challenges and reduced quality of life in early Parkinson’s disease

Purpose People with Parkinson’s disease (PwP) exit the workforce on average 5 years earlier than people without Parkinson’s due to motor, cognitive, communicative, and affective symptoms. Decreased employment results in significant individual and societal costs. The objectives of this study were to identify strengths and weaknesses of employment resources and assess the needs of consumer and clinical stakeholders to improve job retention. Methods The study used a qualitative content analysis and Quasi Needs Assessment Framework. Sixteen PwP and 10 clinician stakeholders participated in two rounds of stakeholder discussion panels. Main outcomes included (1) the resources identified through the online content search and themes derived from those resources, and (2) the information gained from discussion panels and themes derived from their conversations. Results Literature review and online searches yielded 59 resources (30 consumer-focused documents, 17 peer-reviewed articles, and 12 documents supplied by key informants who are experts in Parkinson’s disease and/or employment). Themes frequently found in the consumer-focused content but not the peer-reviewed literature included diagnosis disclosure decision-making, the benefits of retiring compared to working, and workplace accommodations. Stakeholders identified three key needs with regard to employment-related support for PwP: (1) knowledge about employment support options; (2) a clinician to start the discussion about employment challenges; and (3) an individualized and flexible approach to employment-related interventions. Conclusions Many people with Parkinson’s experience unmet employment-related resource and process needs. An individually-tailored interdisciplinary intervention care path could facilitate decisions regarding disclosure and accommodations.

Employment Resources for People with Parkinson's Disease: A Resource Review and Needs Assessment.

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Employment Resources for People with Parkinson's Disease: A Resource Review and Needs Assessment.