Symptom Burden and Unmet Support Needs of Patients With Parkinson's Disease: A Cross-Sectional Study in Asia-Pacific regions

Jojo Yan Yan Kwok, Tsai Wei Huang, Jarugool Tretriluxana, Man Auyeung, Pui Hing Chau, Chia Chin Lin, Helen Yue Lai Chan

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish
JournalJournal of the American Medical Directors Association
DOIs
Publication statusAccepted/In press - 2020

Keywords

  • chronic disease
  • neurology
  • Palliative care
  • Parkinson's disease
  • quality of life

ASJC Scopus subject areas

  • Nursing(all)
  • Health Policy
  • Geriatrics and Gerontology

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