TY - JOUR
T1 - Lost employment potential and supporting people with Parkinson’s to stay in work
T2 - insights from a Pan European cross-sectional survey
AU - Collett, Johnny
AU - Brusco, Natasha
AU - Cordell, Nikki
AU - Cockroft, Annette
AU - Lawrie, Sophie
AU - Coe, Shelly
AU - Reed, Alex
AU - Dawes, Helen
N1 - Funding Information:
The following interests are declared: NC is managing director of Cordell Health Ltd; AR is director of the European Parkinson therapy centre. HD is funded by The Elizabeth Casson Trust and NIHR Oxford Health Biomedical Research Centre and NIHR Oxford Biomedical Research Centre.
Funding Information:
We would like to thank the European Parkinson’s Disease Association (EPDA) for supporting the development of the survey and facilitating its distribution and the Dutch, French, Spanish, Polish, Italian, Slovenian, Danish, German, and Czech associations for translating the survey. In particular, we like to thank Francesco De Renzis (EPDA) for his support. We would like to thank those who took part in the survey.
Publisher Copyright:
© 2022 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
PY - 2023/2/27
Y1 - 2023/2/27
N2 - 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.
AB - 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.
KW - dexterity
KW - Employment
KW - fatigue
KW - Parkinson’s disease
KW - social adjustment
UR - http://www.scopus.com/inward/record.url?scp=85126108728&partnerID=8YFLogxK
U2 - 10.1080/09638288.2022.2043460
DO - 10.1080/09638288.2022.2043460
M3 - Article
C2 - 35249423
AN - SCOPUS:85126108728
SN - 0963-8288
VL - 45
SP - 832
EP - 839
JO - Disability and Rehabilitation
JF - Disability and Rehabilitation
IS - 5
ER -