Knowledge, attitudes and perceptions of Parkinson's disease: A cross-sectional survey of Asian patients.

BACKGROUND: A knowledge gap about Parkinson's disease (PD) often exists amongst PD patients, the level and accuracy of which can influence their attitude and perceptions about the disease. Increased awareness of this information deficit can help physicians identify interventions that will improve patient's knowledge and perceptions about PD. OBJECTIVES: To evaluate general understanding of PD and identify knowledge gaps amongst PD patients using a validated PD knowledge questionnaire. METHODS: A cross-sectional, questionnaire-based study was conducted in 108 PD patients (34 working; 74 retired). The questionnaire covers three domains of PD, including diagnosis, therapeutic options, and disease course with a total knowledge score ranging from 0 to 26. Subjects with dementia were excluded. RESULTS: Patient misconceptions were reflected in the mean (SD) total, diagnosis, therapeutic options, and disease course scores: 14.64 (3.32), 7.76 (1.93), 3.85 (1.28), and 3.03 (1.41) respectively. The working age subgroup had significantly higher knowledge scores than the retired age group for the whole questionnaire (p=0.004), as well as the diagnosis (p=0.001) and therapeutic sections (p=0.023). Three dependent variables, including younger age at recruitment (<60years old), female gender, and higher disease duration (≥4years), were identified as predictors of a higher level of PD knowledge amongst PD patients. CONCLUSION: Significant knowledge gaps were identified amongst PD patients in all three aspects of the questionnaire. Timely identification of patients with inaccurate or insufficient disease-related knowledge could help healthcare professionals choose more suitable multimodal educational interventions.

Understanding the role of the Parkinson's disease nurse specialist in the delivery of apomorphine therpy.

Optimal care of Parkinson's disease (PD) patients should involve a multidisciplinary team (MDT) of which a PD nurse specialist (PDNS) is a key member. The role of a PDNS is particularly prominent in the care of advanced PD patients suitable for apomorphine because, in addition to nursing skills, apomorphine treatment requires liaison, training, interaction and coordination with patients, caregivers and other members of the MDT as well as the interface with primary care physicians. The therapeutic success of apomorphine therapy depends not only upon the pharmacologic drug response, but also on how well the patient understands his/her disease and how to handle the therapy. In this respect, a PDNS is a vital member of the MDT who provides education and training, support, and is available for consultation when problems arise. In this article, we review the literature on the contribution of PDNSs in both continuous subcutaneous apomorphine infusion and intermittent subcutaneous apomorphine injection and highlight the various beneficial aspects of PDNS care, supported by scientific evidence when available. Despite a low level of published evidence, there is strong clinical evidence that the impact of PDNSs on the management of apomorphine therapy is vital and indispensable for the success of this treatment.

Impact of Neu-botulinumtoxinA on the Severity and Quality of Life of Cervical Dystonia Patients.

BACKGROUND: Cervical dystonia (CD) is a debilitating neurological disorder that may gravely affect a patient's quality of life (QoL). Botulinum toxin treatment has been approved as a first-line treatment for this condition. This study aims to look at the efficacy and impact on the QoL of neu-botulinumtoxinA, a newer and cheaper botulinum toxin type A, in patients with CD. METHODS: This is a prospective, open-label, single-arm study. CD patients were recruited and evaluated for severity of CD using the Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS), and for QoL using the Craniocervical Dystonia Questionnaire (CDQ-24), and the 36-item Short Form Health Survey questionnaire (SF-36) at baseline and 6 weeks after injection. RESULTS: Twenty patients were recruited. Significant improvement was shown in part 1 and total TWSTRS score and total CDQ-24 scores. Analysis of individual items of the TWSTRS scale showed significant improvement in rotation, duration of CD, and work ability. Significant improvements in the QoL were also seen in some items of the stigma, emotional wellbeing, and energy/fatigue domains of the CDQ-24 and SF-36 questionnaires. DISCUSSION: Neu-botulinumtoxinA is efficacious in treating CD symptoms and improving QoL of patients with CD. A larger, double-blinded study is needed to study the extent of improvements.

What is the evidence to support home environmental adaptation in Parkinson's disease? A call for multidisciplinary interventions.

"Home" is where one has a sense of belonging and feels secure, but it can also be a risky place for people with Parkinson's disease (PD). PD patients need assistance making adjustments to their physical environment to maintain appropriate care and provide a safe environment. This relationship is called the "person-environmental fit" (P-E fit). While most PD patients remain in their own homes, little is known about the specific challenges that PD patients and their caregivers encounter in the routine activities of daily living. The aim of our study was to identify the existing evidence on the issue of housing environmental adaptation in PD by performing a systematic review with a proposal of development strategies to integrate a multidisciplinary team into a home environmental research. MEDLINE, and life science journals were searched by querying appropriate key words, but revealed very few publications in this area. However, early evidence suggested that PD patients do not enjoy an adequate P-E fit in their own homes and face more functional limitations compared to matched controls. We concluded that we need to develop research-based evaluation strategies that can provide us with a theoretical and conceptual basis as well as tools for analysis of the P-E fit for PD patients and caregivers. We recommend that individual members of the multidisciplinary team including patients, caregivers, physicians, rehabilitation specialists, and social workers use a team approach to identify the key indicators and solutions for the development of PD-specific solutions for improving the P-E fit.

Nocturnal journey of body and mind in Parkinson's disease: the manifestations, risk factors and their relationship to daytime symptoms. Evidence from the NIGHT-PD study.

Nocturnal manifestations of Parkinson's disease (PD) are myriad, have diverse etiologies and include motor, sleep, urinary, and neuropsychiatric symptoms which are often associated with daytime somnolence. While most patients perceive these symptoms as troublesome, the recognition of nocturnal problems related to PD is still low in clinical practice. We conducted a survey using semi-structured interviews and self-rated questionnaires of 215 consecutive patients with PD enrolled in three centers in Thailand to determine the prevalence and risk factors of nocturnal disabilities and their relationship to daytime symptoms. We found that 96.6% of patients reported the presence of nocturnal symptoms as determined by the modified version of Parkinson's Disease Sleep Scale (MPDSS). Our survey indicated that the most frequent and distressing symptom was the interruption of sleep to pass urine (56.7%, 4.4 ± 3.9). The severity of symptoms revealed in the MPDSS increased along with the disease duration (p < 0.05) and Hoehn and Yahr stages (p = 0.01). There were similar to findings of the Nocturnal Akinesia Dystonia and Cramp Score (NADCS) where patients with advanced disease had significantly higher NADCS scores than early/moderate disease (p < 0.001). There was a significant correlation of total MPDSS scores with the total scores of the 9-item Wearing-Off Questionnaire (WOQ-9); (r = -0.43, p < 0.05) [motor (r = -0.35, p < 0.05) and nonmotor subscores (r = -0.43, p < 0.05)]; total nonmotor symptoms (NMS) scores (r = -0.55, p < 0.05); Parkinson's Disease Questionnaire-8 Summary Index (PDQ-8 SI) (r = -0.52, p < 0.05); and the total NADCS (r = -0.35, p < 0.05). Multiple regression analysis identified PDQ-8 SI (ß = -0.27, p = 0.005) as the most significant predictor of nocturnal manifestations of PD, followed by the nonmotor subscore of WOQ (ß = -0.24, p = 0.006), and the NMS item 20 (feeling light-headed, dizzy, or weak when standing from sitting or lying) (ß = -0.22, p = 0.003). Our study found that nocturnal symptoms of PD are very common and we suggest that good clinical practice should include a comprehensive review of nighttime manifestations, particularly for those patients who already experience "wearing-off" symptoms.

The impact of the nocturnal disabilities of Parkinson's disease on caregivers' burden: implications for interventions.

Parkinson's disease (PD) imposes a burden on those who care for the person afflicted. The objective of this study was to assess and analyze the main determinants of caregivers' burden, especially the nocturnal manifestations of PD. This multi-center, national, cross-sectional study included 89 patient-caregiver pairs. Caregiver self-assessments were performed with Hospital Anxiety and Depression Scale (HADS) and Zarit Caregiver Burden Interview (ZCBI). Patient self-assessments were performed with Modified Parkinson's Disease Sleep Scale (MPDSS), Nocturnal Akinesia Dystonia and Cramp Score (NADCS), HADS and Parkinson's Disease Quality of Life Questionnaire (PDQ-8). Most of the caregivers were employed women, and the majority had been permanently taking care of the patient for 6.8 ± 5.4 years. The study found that the ZCBI mean score of the caregivers significantly worsened as patients became more dependent (HY: 4-5, p = 0.036), and the mean ZCBI score of spousal caregivers (19.4; SD 15.5) was significantly higher than that of the offspring group (11.7; SD 7.9) (p = 0.008). Disease duration (r = 0.22), NADCS (r = 0.38), MPDSS (r = -0.36), PDQ-8 SI (r = 0.39) and HADS (total, anxiety and depression) scores (r = 0.46-0.49), and HADS (total, anxiety and depression scores (r = 0.37-0.52), had significant negative effect on caregivers' burden. Moderate association was found on MPDSS item 14 (r = 0.38) and NADCS akinesia score (r = 0.37). Patients' anxiety, nocturnal akinesia and the feeling of tiredness and sleepiness upon awakening in the morning were independent predictors of caregivers' burden (adjusted R2 = 0.46). Based on these findings, treatment of early mood symptoms of the patients and caregivers at risk may be helpful for the effective management of PD and it is also important to have well-designed psycho-educational and multicomponent interventions in the community for caregivers of persons with PD.

Nocturnal manifestations of atypical and vascular parkinsonism: how do they differ from Parkinson's disease?

While nocturnal disturbances of Parkinson's disease (PD) are increasingly recognized as being part of a continuum that includes daytime manifestations, there is still little analysis in the medical literature that assesses these complex phenomena in patients with atypical (AP) and vascular parkinsonisms (VP). The objective of our study was to determine the prevalence of these disturbances in patients with AP and VP and to determine the range of nighttime symptoms that occur compared with those in patients with PD. This comparison was done using a semi-structured interview and self-rated questionnaires in 63 AP and VP patients (PSP 24, MSA 24, CBD 5, and VP 10), and 208 PD patients. 61 AP and VP patients (96.8%) and 201 PD patients (96.6%) reported at least one nocturnal symptom with a score of less than 6 on the Modified Parkinson's Disease Sleep Scale (MPDSS). Nocturnal akinesia, as measured on the Nocturnal Akinesia, Dystonia, and Cramp Score, was found to be significantly greater in patients with PSP (p = 0.006), MSA (p = 0.002), and CBD (p = 0.012) than PD patients, but not VP patients (p = 0.428). Like those with PD, patients with AP and VP identified the problem of getting up at night to urinate (MPDSS item 8) as being the most frequent and troublesome nocturnal symptom. MSA and PSP patients reported more frequent (p = 0.001) and troublesome (p < 0.001) urinary incontinence (MPDSS item 9) than PD patients and MSA patients had more severe problems with unexpectedly falling asleep during the day (MPDSS item 15) than PD patients (p = 0.003). In summary, our study determined that nocturnal manifestations are commonly experienced by patients with AP and VP and highlighted specific nocturnal symptoms, which are more prevalent and troublesome in certain AP syndromes. The concept of 24-h control of symptoms should not be limited to only PD and we recommend that all who are involved in the care of AP and VP patients should realize that many nocturnal symptoms are experienced by these patients and a multidisciplinary approach should be utilized to address these problems.