Correction: Impact of disease stage and age at Parkinson's onset on patients' primary concerns: Insights for targeted management.

[This corrects the article DOI: 10.1371/journal.pone.0243051.].

Impact of disease stage and age at Parkinson's onset on patients' primary concerns: Insights for targeted management.

BACKGROUND: The concerns of people with Parkinson's disease (PD) about their disease are often different from the objective clinical picture and subject to various influencing factors, including disease progression. Currently our understanding of these concerns is limited, particularly in Asian countries. METHODS: A 50-item survey on Parkinson's Disease Patients' Concerns (PDPC Survey) was developed by a multidisciplinary care team. The subjective greatest concerns (most commonly concerning symptoms) of patients at a specialist centre in Bangkok, Thailand, were explored and categorised according to disease stage and age at onset of PD. RESULTS: Data for 222 patients showed concerns varied widely. Motor symptoms giving the greatest concern were problems with walking and/or balance (40.5% of patients), while the most commonly concerning non-motor symptom (NMS) was constipation (41.0%). Patterns were observed amongst different patient subgroups. Early PD patients (H&Y stage 1) were more concerned about NMS than motor symptoms, while the reverse was true for advanced PD patients. Young-onset PD patients showed significantly greater concerns than typical-onset patients about motor symptoms relating to social functioning, working and stigmatisation, such as speech (p = 0.003). CONCLUSIONS: This study, in an Asian patient cohort, provides an assessment of a wide range of PD patients' concerns, encompassing not only motor symptoms and NMS, but also treatment-related adverse events, care in the advanced stage, and the need for assistive devices. Identifying the concerns of individual PD patients and implementing a patient-centred approach to care is critical to their wellbeing and optimal outcomes. The PDPC survey can help healthcare teams build a more accurate picture of patients' experiences to inform clinical management.

Establishing apomorphine treatment in Thailand: understanding the challenges and opportunities of Parkinson's disease management in developing countries.

INTRODUCTION: The increasing global burden of Parkinson's disease (PD) poses a particular challenge for developing countries, such as Thailand, when delivering care to a geographically diverse populace with limited resources, often compounded by a lack of expertise in the use of certain PD medications, such as device-aided therapies (DAT). AREAS COVERED: A panel of local, regional, and international PD experts convened to review the unmet needs of PD in Thailand and share insights into effective delivery of DAT, focusing on experience with apomorphine infusion. Despite its proven efficacy and safety, implementation of apomorphine infusion as a new option was not straightforward. This has prompted a range of health-care professional and patient-focused initiatives, led by the Chulalongkorn Center of Excellence for Parkinson's Disease and Related Disorders in Bangkok, to help establish a more coordinated approach to PD management throughout the country and ensure patients have access to suitable treatments. EXPERT OPINION: Overcoming the challenges of education, proficiency, resource capacity and standard of care for PD patients in developing countries requires a coordinated effort both nationally and beyond. The best practices identified in Thailand following the introduction of apomorphine infusion might be helpful for other countries when implementing similar programs.

Long-term Apomorphine Infusion Users Versus Short-term Users: An International Dual-center Analysis of the Reasons for Discontinuing Therapy.

OBJECTIVES: A retrospective analysis at 2 specialist centers was undertaken to determine the long-term efficacy of subcutaneous apomorphine infusion (APO), rates and reasons for discontinuation, and factors that might contribute to discontinuation. METHODS: Demographics, clinical outcomes data, and reasons for discontinuation were collected for patients treated with APO at Chulalongkorn Centre of Excellence for Parkinson's Disease and Related Disorders, Bangkok, Thailand (n = 36) and Fundacion Jimemez Diaz Universidad Autonoma de Madrid, Spain (n = 16). RESULTS: There were 19 (52.7%) patients in the Thai cohort and 10 (62.5%) patients in the Spanish cohort who discontinued treatment within around 6 months of initiation, most commonly due to skin nodules (Thai cohort) and perceived lack of efficacy (Spanish cohort). Those who continued APO tended to stay on treatment. In both cohorts, APO resulted in significant reductions in Unified Parkinson's Disease Rating Scale 3 motor scores, daily OFF time, and levodopa-equivalent dose in patients who subsequently stopped therapy, suggesting APO is clinically effective even when "lack of efficacy" is stated as a reason for discontinuing. Daily OFF hours after APO therapy was found to be a significant predictive factor for APO discontinuation with an odds ratio of 5.952 (P = 0.040). The cutoff point that determined APO discontinuation was calculated to be 1.75 or more OFF hours (sensitivity, 84.6%; specificity, 63.2%). CONCLUSIONS: Apomorphine infusion is a minimally invasive therapy and therefore very easy to discontinue if difficulties arise. This fact might explain the high dropout rate of this technique. Successful long-term adherence to APO therapy requires a multidisciplinary health care team approach including regular patient follow-up and assessment and prompt resolution of queries and concerns.

Evaluation of nocturnal hypokinesia in Parkinson's disease using a novel patient/proxy questionnaire and correlations with objective monitoring.

BACKGROUND: Nocturnal hypokinesia is a decreased ability to perform sufficient axial rotation and/or trunk flexion to turn in or get out of bed. Currently, there are no validated questionnaires specifically to assess nocturnal hypokinesia in PD patients. OBJECTIVE: To develop and validate a questionnaire to assess PD patients' problems associated with turning or getting out of bed. METHODS: The nocturnal hypokinesia questionnaire (NHQ) consists of 10 items, completed independently by patients and their caregivers. For validation, 76 patient-caregiver pairs completed the questionnaire and validity, agreement levels, and internal consistency assessed. In addition, 76 healthy couples served as controls. The NHQ and Modified Parkinson's Disease Sleep Scale (PDSS-2) were compared and 25 random patients-caregiver pairs were also assessed with objective night-time monitoring. RESULTS: Patient and caregiver scores showed a high level of agreement (Intra-class correlation: 0.84) with high internal consistency (KR-20 coefficient of 0.73 for patients and 0.69 for caregivers). No significant difference between the mean total NHQ scores as rated by patients and caregivers was observed. Mean NHQ scores from patients and caregivers were significantly higher than healthy controls (p < 0.001). Moderate correlations were found between the NHQ and PDSS-2 (r = 0.32, p = 0.004), and with objective monitoring (Number of turns: r = -0.41, p = 0.04, Degree of turn: r = -0.44, p = 0.02). CONCLUSION: The NHQ is a reliable instrument to identify symptoms of nocturnal hypokinesia amongst PD patients. Strong patient-caregiver agreement supports the use of proxy evaluation by caregivers when patient's information is unobtainable.

Exploring Bedroom Usability and Accessibility in Parkinson's Disease (PD): The Utility of a PD Home Safety Questionnaire and Implications for Adaptations.

BACKGROUND: Although bedrooms are identified as a major location for accidents among Parkinson's disease (PD) patients, there are no studies that specifically evaluate the bedroom environments of PD patients. OBJECTIVE: To examine the physical bedroom environment of patients with PD by generating a home safety questionnaire to rate bedroom accessibility and usability specifically for PD patients, and piloting it in a small set of PD patients, to identify environmental barriers and recommend adaptations to reduce accident risks. METHODS: Questionnaire development was based on the concept of Personal (P)-Environmental (E) fit. The P component covers five clinical domains that contribute to a patients' current state of health, including PD-related motor symptoms, PD-related non-motor symptoms, gait and balance impairments, comorbidities, and limitations on specific activities. The E component focuses on both indoor (bedroom, bathroom, living room, stairs, and kitchen), and outdoor (outdoor area and entrance) areas within a home where PD patients commonly get injured. Total score for the whole questionnaire is 171. A higher score indicates more P-E problems. RESULTS: Comprehension of questions was tested for content validity with an item-objective congruence index of above 0.6 for all items. High internal consistency (reliability) was confirmed by Cronbach's alpha coefficient of 0.828 (r). The pilot in five PD patients gave a mean total score of 48.2 ± 7.29 with a mean score on personal and environmental components of 16.8 ± 5.12 and 31.4 ± 4.51, respectively. CONCLUSION: This PD home safety questionnaire is a valid and reliable instrument for examining P-E problems by a multidisciplinary team during their home visits. More studies, involving a large number of PD patients, are needed to establish its utility as a screening instrument in PD patients to assess for home adaptations.