Abstract
Objectives
Support care is rarely assessed and offered to people with long-term neurologic conditions,
particularly Parkinson's disease. This study aimed to assess the symptom burden and
unmet support care needs in people with mild to severe Parkinson's disease.
Design
Cross-sectional study.
Setting and Participants
Patients with Parkinson's disease were recruited from neurologic outpatient clinics
from 3 East and Southeast Asian regions, including Hong Kong, Taiwan, and Thailand.
Methods
A standardized set of questionnaires assessing unmet care needs [Palliative care Outcome
Scale (POS)], disease-specific symptom burden (POS–Symptoms–Parkinson's Disease),
generic health-related quality of life (HRQOL) (EQ-5D-3L), and sociodemographic and
clinical background.
Results
Completed questionnaires (n = 186) were collected from 64 Hong Kong Chinese, 64 Taiwanese,
and 58 Thai patients. Their mean age was 67.23 ± 8.07, 54% were female, and 80% had
mild-to-moderate disease. Their mean POS score was 10.48 ± 6.38, indicating moderate
unmet support needs. Two-thirds of the participants rated constipation, fatigue, leg
problem, and daytime somnolence as the most prevalent and burdensome symptoms. Patients
from Hong Kong and Taiwan prioritized psychosocial and spiritual support, whereas
Thai patients prioritized physical needs and emotional concerns. Multivariate adjustment
for demographics and clinical characteristics showed that high psychological, spiritual,
and practical burdens are associated with young age, male gender, and advanced disease
stages.
Conclusions and Implications
Patients experience significant symptom burden and moderate unmet support needs at
the early to middle stage of Parkinson's disease. Routine assessment of changes in
symptom burden should start early. The timely referral of support care services should
provide appropriate psychospiritual and practical support in addition to motor training.
Planning for support care services should consider cultural and health service contexts.
Keywords
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Article info
Publication history
Published online: October 22, 2020
Identification
Copyright
© 2020 Published by Elsevier Inc. on behalf of AMDA - The Society for Post-Acute and Long-Term Care Medicine.
