Six Action Steps to Address Global Disparities in Parkinson Disease: A World Health Organization Priority.

Importance: The Global Burden of Disease study conducted between 1990 and 2016, based on a global study of 195 countries and territories, identified Parkinson disease (PD) as the fastest growing neurological disorder when measured using death and disability. Most people affected by PD live in low- and middle-income countries (LMICs) and experience large inequalities in access to neurological care and essential medicines. This Special Communication describes 6 actions steps that are urgently needed to address global disparities in PD. Observations: The adoption by the 73rd World Health Assembly (WHA) of resolution 73.10 to develop an intersectoral global action plan on epilepsy and other neurological disorders in consultation with member states was the stimulus to coordinate efforts and leverage momentum to advance the agenda of neurological conditions, such as PD. In April 2021, the Brain Health Unit at the World Health Organization convened a multidisciplinary, sex-balanced, international consultation workshop, which identified 6 workable avenues for action within the domains of disease burden; advocacy and awareness; prevention and risk reduction; diagnosis, treatment, and care; caregiver support; and research. Conclusions and Relevance: The dramatic increase of PD cases in many world regions and the potential costs of PD-associated treatment will need to be addressed to prevent possible health service strain. Across the board, governments, multilateral agencies, donors, public health organizations, and health care professionals constitute potential stakeholders who are urged to make this a priority.

A qualitative exploration of the healthcare challenges and pharmaceutical care needs of people with Parkinson's and their caregivers.

Background People with Parkinson's are at higher risk of healthcare and pharmaceutical care issues. Objective To determine the healthcare challenges, pharmaceutical care needs, and perceived need of a pharmacist-run clinic by people with Parkinson's and their caregivers. Setting Malaysian Parkinson's Disease Association. Method A focus group discussion adopting a descriptive qualitative approach was conducted involving people with Parkinson's and their caregivers. A semi-structured interview guide was used to determine the challenges they faced with their medications and healthcare system, their pharmaceutical care needs, and their views on a pharmacist-run clinic. Data was thematically analysed. Main outcome measure: Healthcare challenges faced by people with Parkinson's and caregivers along with their pharmaceutical care needs and perceived need of a pharmacist-run clinic. Results Nine people with Parkinson's and four caregivers participated. Six themes were developed: (1) "It's very personalised": the need for self-experimentation, (2) "Managing it is quite difficult": challenges with medication, (3) "The doctor has no time for you": challenges with healthcare providers, (4) "Nobody can do it except me": challenges faced by caregivers, (5) "It becomes a burden": impact on quality of life, and (6) "Lack of consistency could be counterproductive": views on pharmacist-run clinic. Conclusion The provision of pharmaceutical care services by pharmacists could help overcome issues people with Parkinson's face, however there is a need for them to first see pharmacists in their expanded roles and change their limited perception of pharmacists. This can be achieved through integration of pharmacists within multidisciplinary teams in specialist clinics which they frequent.

Quality of Life and Caregivers' Burden of Parkinson's Disease.

AIM: This study focused on the impact of the clinical features on the quality of life (QoL) of Parkinson's disease (PD) patients and of their caregivers. METHODS: This study included PD patients along with their caregivers and was undertaken at the Malaysian Parkinson's Disease Association from June 2016 to November 2016. Clinical features of PD patients were assessed using the Movement Disorder Society revised Unified Parkinson Disease Rating Scale; the Hoehn and Yahr stage and the Schwab and England Activities of Daily Living Scale were used to assess the severity and the ability of PD patients respectively. QoL of PD patients was measured using the Parkinson's Disease Questionnaire-39 (PDQ-39). The revised version of the Zarit Burden Interview assessed caregiver burden. RESULTS: At least one of the clinical features affected PD patients' QoL, and at least one of the QoL domains affected the caregivers' burden. Clinical features "saliva and drooling" and "dyskinesia" explained 29% of variance in QoL of PD patients. The QoL domains "stigma," along with "emotional well-being" explained 48.6% of variance in caregivers' burden. CONCLUSIONS: The clinical features "saliva and drooling" and "dyskinesia" impacted the QoL of PD patients, and the QoL domains "stigma" and "emotional well-being" of PD patients impacted their caregivers' burden.

Knowledge of Parkinson's Disease in a Multiethnic Urban Asian Setting.

BACKGROUND: Public knowledge regarding Parkinson's disease (PD) is important to facilitate good health-seeking behavior, but the literature on this topic is scarce. OBJECTIVE: We aimed to explore the level of public knowledge regarding PD in a large multiethnic urban Asian cohort, and (as a secondary aim) in a smaller cohort of PD patients and caregivers. METHODS: A Knowledge of PD Questionnaire (KPDQ) was developed and administered to members of the Malaysian general public, and to PD patients and caregivers. The KPDQ tests recognition of PD symptoms and general knowledge regarding PD. RESULTS: 1,258 members of the general public completed the KPDQ. Tremor was the most widely recognized symptom (recognized by 79.0% of respondents); however, 83.7% incorrectly believed that all PD patients experience tremor. Memory problem was the most widely recognized NMS. Overall, motor symptoms were better recognized than NMS. Common misperceptions were that there is a cure for PD (49.8%) and that PD is usually familial (41.4%). Female gender, Chinese ethnicity, tertiary education, healthcare-related work, and knowing someone with PD were independently associated with higher KPDQ scores. PD patients (n = 116) and caregivers (n = 135) demonstrated superior knowledge compared with the general public group, but one-third of them believed that PD is currently curable. CONCLUSIONS: This is the only study on public knowledge regarding PD in Asia. Important gaps in knowledge were evident, which could present a barrier to early diagnosis and appropriate treatment of PD. This highlights the need for targeted education campaigns and further research in this area.