Concordance between severity of disease, prevalence of nonmotor symptoms, patient-reported quality of life and disability and use of medication in Parkinson’s disease

The aim of this study was to test the concordance between disease severity, prevalence of nonmotor symptoms, age, health-related quality of life (HRQoL), disability and medication use in patients with Parkinson's disease (PD). Severity was classified with the Hoehn and Yahr (HY) scale and Levodopa Equivalent Daily Dose (LEDD) calculated. HRQoL was evaluated with the SF-36, disability with the WHO-DAS II and nonmotor symptoms with the NMSQuest. Patients were clustered using SF-36 and WHO-DAS II into three groups covering the continuum from low disability and HRQoL, to severe disability and HRQoL decrement. Contingency Coefficient were used to verify the relationships between clusters and HY stage; ANOVA to evaluate differences in NMS, age and LEDD between clusters; odds ratio to test the likelihood of taking levodopa or dopamine agonist and being member of the three clusters; t test to evaluate differences in LEDD between patients with HY ≥3 or ≤2. Eighty-six patients were clustered: 48 had low disability and HRQoL decrement, 18 intermediate disability and HRQoL decrement and 20 high disability and HRQoL decrement. A significant relationship was found between PD severity groups, HRQoL and disability profiles. No differences for age and LEDD were observed in the three groups, and those with more disability and lower HRQoL reported a higher number of nonmotor symptoms; patients in HY ≥3 were prescribed higher doses of drugs. In conclusion, we found a substantial concordance between PD staging, prevalence of nonmotor symptoms and patient-reported HRQoL and disability measures. In our opinion, the SF-36 and the WHO-DAS II can be used for profiling patients.     

The relationship between health, disability and quality of life in Myasthenia Gravis: results from an Italian study

Myasthenia gravis (MG) produces long term disability and affects health-related quality of life (HRQoL). This paper reports the relationship between HRQoL and disability in a group of patients with MG. Adult patients with MG were consecutively enrolled at the Neurological Institute “Carlo Besta”. The World Health Organization Disability Assessment Schedule II (WHO-DAS II) and the Medical Outcome Survey 36-Item Short-Form Health Survey (SF-36) were employed, and non-parametric analysis (Spearman’s rank correlation and Mann–Whitney U test) performed. One hundred and two consecutive adult patients with MG (70 female; mean age 47.2, sd 15.7) were recruited. The majority of WHO-DAS II and SF-36 scales were significantly correlated; WHO-DAS II summary score correlated better with SF-36 Physical Composite Score (PCS), than with mental composite score (MCS). Significant differences are also reported between patients with different muscle involvement in PCS and WHO-DAS II scores, while no difference was observed in MCS. The impact of MG on disability and HRQoL increases consistently with the disease’s severity. Our study highlights that measurements of HRQoL and disability in patients with MG are correlated and sensitive enough to capture different clinical profiles’ features. They measure different clinical and psychosocial facets, therefore we recommend employing specific assessments both for quality of life and disability in public health and clinical research on myasthenia gravis.     

Value and utility of disease-specific and generic instruments for assessing disability in patients with migraine,and their relationships with health-related quality of life

The aim of this paper is to explore the relationships between health-related quality of life (HRQoL), assessed with the Short Form-36 (SF-36), and disability in adult migraineurs using both disease-specific and generic tools, the WHO Disability Assessment Schedule II (WHO-DAS II) and with the Migraine Disability Assessment questionnaire (MIDAS). Significant differences were observed between patients with minimal/mild and moderate/severe MIDAS disability grades for Role Physical, Bodily Pain, General Health, Vitality, Social Functioning and Physical Composite Score of the SF-36; in the WHO-DAS II for household activities, participation in society and for summary score. WHO-DAS II and MIDAS provide complementary information on the intensity and the frequency of problems in performing daily activities, and could be used jointly. Our findings indicate that these issues are relevant for patients’ health status and should be taken into account in future research on migraine as important secondary outcomes of treatment interventions.     

A longitudinal evaluation of changes in disability and quality of life in a sample of women with migraine

Migraine’s high prevalence, which rises up to 25% among women in the productive age, determines a strong reduction in health-related quality of life (HRQoL) and increased disability. Aim of this study is to longitudinally describe disability and HRQoL in a sample of adult women with migraine attending to a specialty centre. HRQoL was measured with the SF-36 and disability with the WHO-DAS II. One-sample t test was used to assess deterioration in disability and HRQoL scales compared to normative scores; effect size was calculated to describe magnitude of change after 3 months. Majority of scales were significantly deteriorated, and changes between baseline and follow-up were negligible to small for most of SF-36 scales, and small to moderate for WHO-DAS II scales. In conclusion, women with migraine showed pervasive deterioration in disability and HRQoL. Wider improvements were observed at follow-up for activities in which relational skills are relevant, while those with a physical component, or that are predominantly performed autonomously, remained almost unchanged.     

The EQ-5D--a generic quality of life measure-is a useful instrument to measure quality of life in patients with Parkinson's disease

OBJECTIVE: To test the feasibility and validity of the EQ-5D (a widely used generic (disease non-specific) quality of life (QoL) instrument which allows comparisons between different patient groups and the general population) to assess QoL in patients with Parkinson's disease. METHODS: All 124 patients with Parkinson's disease seen in a community based study on the prevalence of parkinsonism were asked to complete a QoL battery comprising the EQ-5D, the medical outcome study short form (SF-36), the PDQ-39, a disease specific instrument to assess QoL in PD, and the Beck depression inventory. A structured questionnaire interview and a complete neurological examination including the Hoehn and Yahr stage of illness scale, the Schwab and England disability scale, the motor section of the unified Parkinson's disease rating scale (UPDRS), and the mini mental state examination (MMSE) were performed on the same day. RESULTS: The response rate was 78% and the completion rate of the EQ-5D among responders was 96%. The EQ-5D summary index correlated strongly with the PDQ-39 (r=-0.75, p<0.0001) as well as the physical score of the SF-36 (r=0.61, p<0.0001). There was a significant correlation of the EQ-5D summary index with disease severity, as measured by the Hoehn and Yahr stage of illness, the Schwab and England disability scale, the motor section of the UPDRS, and the depression score. The EQ-5D summary index also distinguished between patients with and without depression, falls, postural instability, cognitive impairment hallucinations, and those with deterioration of health over the previous year. CONCLUSION: The EQ-5D is a feasible and valid instrument to measure QoL in Parkinson's disease and reflects the severity and complications of the disease.     

Determinants of quality of life in Brazilian patients with Parkinson's disease.

Our objective was to identify determinants of health-related quality of life (HRQoL) in a cohort of Brazilian patients with Parkinson's disease (PD). Patients were evaluated by means of the Hoehn and Yahr staging (H&Y), Unified Parkinson's Disease Rating Scale (UPDRS), Schwab and England scale (S&E), Mini-Mental State Exam, Geriatric Depression Scale, and Hospital Anxiety and Depression Scale (HADS). HRQol was assessed using the MOS-Short-Form 36 (SF-36), the Parkinson's disease Questionnaire (PDQ-39), and the Scales for Outcomes in Parkinson's Disease-Psychosocial Questionnaire (SCOPA-PS). 144 patients were evaluated (mean age 62 years; 53.5% men; mean duration of illness 6.6 years; median H&Y, 2 (range: 1-4). Mean SCOPA-PS and PDQ-39 Summary Index (SI) were 39.2 and 40.7, respectively. Both, PDQ-39 and SCOPA-PS SIs correlated at a moderate level (r = 0.30-0.50) with H&Y, S&E, total UPDRS, HADS subscales, and SF-36 Physical and Mental Components. PDQ-39 and SCOPA-PS were closely associated (r = 0.73). HRQoL significantly deteriorated as H&Y progressed, as a whole. Mood disturbances, disability, motor complications, and education were independent predictors of HRQoL in the multivariate analysis model. In PD Brazilian patients, HRQoL correlated significantly with diverse measures of severity. Depression showed to be the most consistent determinant of HRQoL, followed by disability, motor complications, and education years. There was a close association between the PDQ-39 and SCOPA-PS summary scores.     

Prevalence of non motor features in a cohort of Parkinson's disease patients

Background

There is a lack of awareness among physicians of the considerable disability caused by non-motor symptoms (NMS) in PD. The aim of this work is to estimate the prevalence of NMS in a series of patients with Parkinson's disease (PD).

Materials and methods

We studied 112 patients with Parkinson's disease. Motor symptoms were scored on the Unified Parkinson's Disease Rating Scale (UPDRS) part III and the Hoehn and Yahr (HY) Scale. Other symptoms were quantified with the Non-Motor Symptom Questionnaire and Scale (NMSQuest and NMSS) as well as Minimental State Examination (MNSE).

Results

Analysis of the data from the NMSS showed that mood/cognition was the most commonly affected domain (prevalence rate = 87.5%), followed by sleep disturbance/fatigue second (78.6%). However, all other non-motor symptoms scored highly: gastrointestinal and urinary (76.8% for both), sexual dysfunction (73%), cardiovascular (70.5%) with significantly higher percentage in predominantly akinetic/rigid patients. Perceptual problems/hallucinations (9.9%) were infrequent in this population. Dementia was recorded in 22.3% of patients, most of them having a mild degree of dementia. UPDRS scores were correlated with total scores in both NMSQuest and NMSS.

Conclusions

Mood/cognition, sleep disorders, GIT, and sexual disorders were common non motor manifestations in this population of PD patients.     

The quality of life in Parkinson's disease.

The objective of this study was to examine the quality of life in patients with Parkinson's disease (PD) in a community-based sample (n = 228 patients) using a Medical Outcomes Study 36-Item Short Form Health Survey (SF-36) as a measure. Associations to the variables age, age at onset, duration, clinical stage (Hoehn and Yahr), depression (Zung), and dementia (MMSE) were studied. Women scored significantly lower on five of the eight dimensions of SF-36. Depression, as measured in this study, was more common among parkinsonian women than men. Depression was the factor that was associated most significantly with the experienced quality of life, according to SF-36. With physical functioning, only the clinical stage had a more significant association than depression. To improve the quality of life in patients with PD, it is necessary to make every effort to recognize and relieve the depression of patients with PD.     

Factors affecting the quality of life of patients with idiopathic Parkinson's disease--a cross-sectional study in an outpatient clinic attendees

PURPOSE: To determine the factors associated with poor quality of life (QoL) in patients with idiopathic Parkinson's disease (PD) in a clinic-based sample. SCOPE: One hundred patients were included in this study. To assess the quality of life the Parkinson's Disease Questionnaire (PDQ-39) was used. A structured questionnaire interview and a complete neurological examination, including the Hoehn and Yahr scale (H-Y), the Schwab and England disability scale, II, III, IV parts of the unified Parkinson's disease rating scale (UPDRS part II, III, IV), Montgomery-Asberg depression rating scale (MADRS) and the Mini-Mental state examination (MMSE) were performed. RESULTS AND CONCLUSIONS: The most important predictive factor was MADRS score, followed by clinical fluctuations as measured by UPDRS part IVB and the H-Y stage of disease, which account for 79% of the variance of QoL scores. Therefore, recognition of depression should become an important part of treatment of PD.     

The influence of fatigue on health-related quality of life in patients with Parkinson's disease

OBJECTIVE: To examine the correlation between fatigue and health-related quality of life (HRQL) in patients with Parkinson's disease (PD). PATIENTS AND METHODS: Sixty-six patients with idiopathic PD. The patients did not have a depressive mood disorder or cognitive impairment. Fatigue was measured by the Fatigue Severity Scale (FSS). HRQL was measured by the Parkinson's Disease Questionnaire (PDQ-39) and the Short-Form 36 (SF-36). RESULTS: Thirty-three (50%) of the patients had significant fatigue. Patients with fatigue had a more advanced disease than those without fatigue, measured by the UPDRS scale, including a higher Hoehn and Yahr stage and lower Schwab and England score. Patients with fatigue reported more distress in the dimensions of emotional well-being and mobility (PDQ-39) and also had a significantly higher PDQ summary index. On the SF-36 patients with fatigue reported more problems in the areas of physical functioning, role limitation (physical), social functioning and vitality. Correlations between the FSS and the HRQL scales were highest for the summary index of PDQ-39 and in the dimensions of ADL, mobility and emotional well-being (PDQ-39) and physical functioning, role limitation (physical), social functioning, general health and vitality (SF-36). CONCLUSIONS: PD has a substantial negative impact on HRQL. We found a strong correlation between fatigue and high distress scores on HRQL scales in a population of patients with PD who were not depressed or demented. The diversity of symptoms and high prevalence of non-motor features, including fatigue, is important to take into account in our efforts to optimize treatment and care for this patient group.     

Prevalence of nonmotor symptoms in Parkinson's disease in an international setting; study using nonmotor symptoms questionnaire in 545 patients.

2006, there was, no single instrument (questionnaire or scale) for attempting a comprehensive assessment of the wide range of nonmotor symptoms (NMS) of Parkinson's disease (PD). The PD nonmotor group, a multidisciplinary group of experts including patient group representatives developed and validated the NMS screening questionnaire (NMSQuest) comprising 30 items. The NMSQuest is a self completed screening tool designed to draw attention to the presence of NMS. In this paper, we present the results gathered from 545 patients using the definitive version of the NMSQuest highlighting the prevalence of the wide range of NMS flagged in the NMSQuest from consecutive PD patients in an international setting.     

What contributes to quality of life in patients with Parkinson's disease?

OBJECTIVE: To identify the factors that determine quality of life (QoL) in patients with idiopathic Parkinson's disease in a population based sample. Quality of life (QoL) is increasingly recognised as a critical measure in health care as it incorporates the patients' own perspective of their health. METHODS: All patients with Parkinson's disease seen in a population based study on the prevalence of parkinsonism were asked to complete a disease-specific QoL questionnaire (PDQ-39) and the Beck depression inventory. A structured questionnaire interview and a complete neurological examination, including the Hoehn and Yahr scale, the Schwab and England disability scale, the motor part of the unified Parkinson's disease rating scale (UPDRS part III), and the mini mental state examination were performed by a neurologist on the same day. RESULTS: The response rate was 78%. The factor most closely associated with QoL was the presence of depression, but disability, as measured by the Schwab and England scale, postural instability, and cognitive impairment additionally contributed to poor QoL. Although the UPDRS part III correlated significantly with QoL scores, it did not contribute substantially to predicting their variance once depression, disability, and postural instability had been taken into account. In addition, patients with akinetic rigid Parkinson's disease had worse QoL scores than those with tremor dominant disease, mainly due to impairment of axial features. CONCLUSION: Depression, disability, postural instability, and cognitive impairment have the greatest influence on QoL in Parkinson's disease. The improvement of these features should therefore become an important target in the treatment of the disease.     

Quality of life in patients with Parkinson's disease

We evaluated the quality of life (QoL) in 278 Indian patients with Parkinson's disease (PD) using PDQL questionnaire, with measures various aspects of health status in PD patients including parkinsonian symptoms, systemic symptoms, social and emotional functions. Apart from demographic and treatment details parkinsonian disability and stage was assessed by Hoehn and Yahr stage, Schwab and England scale and UPDRS scores. We conclude that female gender, presence of depression, low degree of independence, higher levodopa dose (>400 mg/day) and higher UPDRS activity of daily living score have the most detrimental impact on QoL in patients with Parkinson's disease. Depression was the most significant factor impairing the QoL and it needs to be treated.     

Interobserver reliability between neurologists in training of Parkinson's disease rating scales. A multicenter study.

A multicenter study has been conducted to determine the interobserver reproducibility of four of the most frequently used rating scales for Parkinson's disease: the Columbia University Rating Scale (CURS) and the Webster Rating Scale (WRS), both for assessing clinical signs; the Northwestern University Disability Scale (NUDS); and the Hoehn and Yahr staging. Four resident neurologists, inexperienced in the use of the four scales, independently examined 48 parkinsonian patients. The extent to which their assessments agreed was determined by calculating the Cohen k index after the scores had been recodified. The physicians' scores agreed substantially for the CURS and the Hoehn and Yahr scale, while those for the NUDS and the WRS agreed only moderately. Analysis of individual item scores within the scales suggests improvements that would offer greater interobserver consistency.     

Influence of sensory manipulation on postural control in Parkinson''s disease.

Postural control was assessed on a tilting platform system in 20 patients with idiopathic Parkinson's disease and 20 age-matched controls. The amount of information provided by vision and lower limb proprioception was varied during the experiment to investigate the influence of changes in sensory cues on postural control. The patient group with clinical evidence of impaired postural control (Hoehn and Yahr III) had significantly higher sway scores over all sensory conditions than either the Hoehn and Yahr II group or controls. The pattern of sway scores indicated that no obvious deficit in the quality, or processing, of sensory information was responsible for the postural instability observed in this group. The patients in both Hoehn and Yahr groups were also able to respond appropriately to potentially destabilising sensory conflict situations and significantly improved their sway scores when provided with visual feedback of body sway. The results indicate that in Parkinson's disease, the main site of dysfunction in postural control is likely to be at a central motor level.     

Quantitation of non-motor symptoms in Parkinson's disease

Background:  Disabling non-motor symptoms (NMS) associated with Parkinson's disease (PD), such as dementia and loss of balance, do not respond well to levodopa therapy and can lead to eventual death in patients with the disease. In 2006, a multidisciplinary group of experts and patient representatives developed an NMS screening questionnaire (NMSQuest) and a unified Non-Motor Symptoms Scale (NMSS) to address the need for simple identification and comprehensive assessment of NMS in patients with PD.
Methods and Results:  An international pilot study of 96 healthy controls and 123 patients with various stages of treated and untreated PD was conducted to demonstrate that the NMSQuest is a feasible, valid, and accepted tool.
Conclusion:  The majority of patients and caregivers felt that the questionnaire was clear and relevant to their daily lives. Data from 242 PD patients with no dementia were analysed in a pilot study on the clinimetric validation of NMSS. Similar to the NMSQuest study, the NMSS study revealed a significant correlation between progression of PD and increasing NMS burden. These studies suggest that the NMSQuest accurately detects the NMS, and that the NMSS closely correlates with quality of life for PD patients.     

Parkinson's disease: the non-motor issues

Non-motor symptoms (NMS) of Parkinson's disease remain the most under-appreciated and under-researched when taken as a whole. Data is emerging that it is the "totaL" burden of NMS that is the major determinant of quality of life not a single NMS such as depression for instance. Only recently validated tools such as the NMSQuest which empowers patients to declare NMS and the NMS scale, the SCOPA scales, and the modified version of the MDS-UPDRS have become available and validated for bedside clinical assessment of NMS. For the first time clinical trials have been incorporating non-motor measures as outcome measures and clinical recommendations for treatment of non-motor symptoms of PD are being published. This review aims to address some of these topical and "real life" aspects of modern day management of Parkinson's.     

Caregiver burden in Parkinson's disease.

Parkinson's disease (PD) is a neurodegenerative disorder that imposes an important burden upon the patient's caregiver. This study aims at assessing caregiver burden (CB) and analyzing its relationship with sociodemographic, emotional, and functional factors, as well as health-related quality of life (HRQoL). The following measures were applied to 80 patients with PD: the Hospital Anxiety and Depression Scale (HADS); the EuroQoL (for HRQoL); and PD-specific measures (Hoehn and Yahr staging and SCOPA-Motor ADL subscale). Patients' main caregivers completed the HADS, SF-36, EuroQoL, and Zarit CB Inventory (ZCBI). The ZCBI was found to be a valid and reliable measure in the context of PD. There was a significant association between CB and caregivers' HRQoL (r = -0.29 to -0.64). Mental aspects of caregivers' HRQoL and burden were affected by disability and disease severity. The presence of caregivers' depression had a significant negative effect on both CB and HRQoL. The main predictors of CB were caregivers' psychological well-being, patients' mood and clinical aspects of PD (disability and severity), and HRQoL of patients and caregivers. This study underscores the need to consider the impact of PD on caregivers' well-being.     

Clinical problems in non-fluctuating patients with Parkinson's disease: a community-based study.

OBJECTIVE: To investigate the frequency of nonfluctuators in a community-based prevalence study of Parkinson's disease (PD) and to describe disability, non-motor problems, and health-related quality of life in patients with PD with and without motor fluctuations, and compare the findings to those of two control groups. METHODS: The study involved 245 patients with PD who were participating in a prevalence study and two control groups (100 healthy elderly individuals and 100 patients with diabetes mellitus [DM]). Data were obtained through neurologic examination and a semistructured interview, and by the use of several questionnaires. RESULTS: In this group of unselected patients with PD, 78% did not experience motor fluctuations. Mean duration of treatment with levodopa was 6.3 years. Patients with motor fluctuations had a lower age at onset of disease, longer duration of disease, and a higher daily levodopa dose than patients without fluctuations. Among the non-fluctuating patients, we found more dementia and a higher age at prevalence day. Disability (assessed by the Unified Parkinson's Disease Rating Scale subscales for activities of daily living and motor function and the Hoehn and Yahr stage) was similar in fluctuators and nonfluctuators. Depression, sleep disturbances, and fatigue were equally frequent in both patient groups. The occurrence of these difficulties was clearly more frequent among non-fluctuating patients with PD than among the control subjects. CONCLUSION: Most patients in the general population who have PD do not experience dose-dependent motor fluctuations. Severity of motor disability and neuropsychiatric manifestations are as important in non-fluctuators as in fluctuators. Patients without motor fluctuations have more depression, sleep disturbances, fatigue, and a poorer health-related quality of life than patients with DM and healthy elderly individuals. This also underlines the importance of developing better management and treatment strategies for this group of patients with PD.     

首发精神分裂症患者的生活质量评估

目的评估首发分裂症患者的生活质量，及生活质量与精神症状的相关性。方法评估447例患者基线、随访6个月、随访1年时阳性和阴性症状量表（PANSS）、健康状况调查问卷（SF-36）、社会功能缺陷筛选量表（SDSS）、生活满意度量表（LSR）。主要根据SF-36评估首发分裂症患者的生活质量，并将SF-36与PANSS、SDSS、LSR作相关分析。结果首发精神分裂症患者在躯体角色功能（RP）、社会功能（SF）、情绪角色功能（RE）3个维度平均分显著低于杭州市居民的数据。除精力（VT）外，其余7个维度与PANSS的阳性症状分、阴性症状分、一般精神病理分以及SDSS均呈负相关，与LSR呈正相关。而VT与PANSS的阴性症状分及LSR呈负相关。随访1年问躯体健康（PF）、躯体角色功能（RP）、躯体疼痛（BP）、总体健康（GH）、社会功能（SF）、情绪角色功能（RE）、心理健康（MH）等7个维度得分显著提高。结论首发分裂症患者的情绪角色功能、躯体角色功能和社会功能受损明显，经1年治疗后上述功能均能明显改善。除精力感外，精神症状缓解越明显，生活质量越高，提示了早期治疗的重要性。同时也表明SF-36可适用于评估分裂症患者的生活质量。