Abstract

Objective: To reconstruct a sex-specific patient journey for Dutch persons with Parkinson's disease (PD) during the first 5 years after diagnosis.Method: We analyzed a national administrative medical claims database containing data of all patients newly diagnosed with PD between 2012 and 2016 in the Netherlands. We performed time-to-event analysis to identify the moments when patients received care from neurologists, allied healthcare therapists or general practitioners. We also extracted relevant clinical milestones: unexpected hospitalization for PD, pneumonia, orthopedic injuries, nursing home admission, and death. Using these data, we constructed the patient journey stratified for sex.Results: We included claims data of 13,518 men and 8,775 women with newly diagnosed PD in the Netherlands. While we found little difference in neurologist consultations, women visited general practitioners and physiotherapists significantly earlier and more often (all p-values < 0.001). After 5 years, 37.9% (n = 3,326) of women had visited an occupational therapist and 18.5% (n = 1,623) a speech and language therapist at least once. This was 33.1% (n = 4,474) and 23.7% (n = 3,204) for men. Approximately 2 years after diagnosis, PD-related complications (pneumonia, orthopedic injuries, and PD-related hospitalization) occurred for the first time (women: 1.8 years; men: 2.3 years), and after 5 years, 72.9% (n = 6,397) of women, and 68.7% (n = 9,287) of men had experienced at least one.Discussion: Considering the strengths and limitations of our methods, our findings suggest that women experience complications and access most healthcare services sooner after diagnosis and more frequently than men. The identified sex differences extend the debate about phenotypical differences in PD between men and women.

Highlights

  • During the course of the disease, a patient with Parkinson’s disease (PD) visits many different healthcare providers from different disciplines [1]

  • We identified the time after diagnosis until five clinical milestones in the patient’s journey had been reached, using a methodology previously used in a comparable analysis: [21] nursing home admission, hospitalization for three PD-related complications [20, 22] and, death

  • The reconstruction of the Parkinson patient’s journey through the Dutch healthcare sector during the first 5 years after diagnosis, reveals quantitative information about healthcare utilization and the occurrence of clinical milestones over time. It reveals sex differences: in the Netherlands, women visit most of the included healthcare professionals sooner after diagnosis and more frequently

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Summary

Introduction

During the course of the disease, a patient with Parkinson’s disease (PD) visits many different healthcare providers from different disciplines [1]. This “journey through the healthcare system” varies per individual because of heterogeneity of symptoms, differences in disease progression rate, and the occurrence of PD-related complications. We do not know if these sex differences translate to different patient journeys between men and women with PD. When striving for optimal patient-centered and integrated care, it is vital to understand what the patient journeys look like. We use medical claims data to reconstruct the sex-specific journey for Dutch PD patients during the first 5 years after diagnosis

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