Burden,perceived health status,and mood among caregivers of Parkinson's disease patients

The objective of this study is to describe the characteristics of the caregivers of patients with Parkinson's disease (PD) and to analyze the association between these characteristics and caregiver burden, perceived health and mood status, and identify their predictors. A multicenter, nationwide, observational, cross‐sectional study that included 289 patient–caregiver pairs was conducted. Caregiver self‐assessments were the Hospital Anxiety and Depression Scale (HADS), EuroQol (EQ), and Zarit Caregiver Burden Inventory (ZCBI). Most caregivers in the study were women aged 60 years or thereabouts. Over two thirds were gainfully employed or housewives, 75% were patients' spouses, and the majority (96.5%) had been permanently taking care of the patient for 6 ± 5.4 years. Less than 5% of patients were in the most advanced stages of disease, and direct costs were 6,350 euros per patient per year. Caregivers had more mood disorders and worse health‐related quality of life (HRQol; EQ‐Tariff) than did the general population. Caregiver HADS and EuroQol scores displayed a weak correlation (r_S = 0.01–0.28) with patient‐related variables (disease duration, HY, SCOPA‐Motor, SCOPA‐AUT, HADS, PPRS, and CISI‐PD) whereas the ZCBI correlated moderately (r_S = 0.27–0.47). Among caregivers, the EQ‐Tariff was significantly lower and the HADS‐Anxiety scores significantly higher for women. ZCBI and HADS‐depression, though not EuroQol and HADS‐anxiety, scores significantly increased with increasing PD severity levels. Caregivers' affective status proved the most important factor influencing their burden and perceived health, whereas patient‐related variables influenced caregiver burden and mood but not health status. In PD, prevalence of affective disorders among patients' caregivers is high and influences both burden and HRQoL. © 2008 Movement Disorder Society     

Long-term exposure to duodenal levodopa/carbidopa infusion therapy improves quality of life in relation especially to mobility, activities of daily living, and emotional well-being

Santos‐García D, Sanjurjo LF, Macías M, Llaneza M, Carpintero P, de la Fuente‐Fernández R. Long‐term exposure to duodenal levodopa/carbidopa infusion therapy improves quality of life in relation especially to mobility, activities of daily living, and emotional well‐being.
Acta Neurol Scand: 2012: 125: 187–191.
© 2011 John Wiley & Sons A/S. Background – Continuous duodenal levodopa infusion (DLI) is an effective therapy that improves quality of life (QoL) in advanced Parkinson′s disease (PD). However, in which aspects improve the patients their QoL has been poorly documented. Methods – We evaluated 39‐item Parkinson′s disease Quality of Life Questionnaire Summary Index score (PDQ‐39SI) changes analyzing its different domains in nine patients with advanced PD treated with DLI. Results – All the patients (64.7 ± 11.1 years, 55.5% men) improved PDQ‐39SI 6 months after beginning with DLI (29.7 ± 8.6, P = 0.008) and after median duration infusion of 25.3 ± 8.8 months (34.8 ± 11.2, P = 0.008) compared with baseline (55.6 ± 11.5). All domains except social support improved significantly at 6 months. Mobility (P = 0.012), activities of daily living (P = 0.015), and emotional well‐being (P = 0.008) improved significantly at the end of the follow‐up. Conclusions– DLI improves QoL in patients with advanced PD after short‐ and long‐term exposure. Whereas all domains except social support improve after 6 months under DLI, only mobility, activities of daily living and emotional well‐being improve significantly after long‐term exposure to DLI.     

Exploring the burden of the primary family caregivers of schizophrenia patients in Taiwan

Aim: The purpose of the present study was to investigate the burden of the primary family caregivers of schizophrenia patients and the factors that affect caregiver burden. Methods: A total of 126 pairs of patients and their primary family caregivers were recruited from the day care and acute wards of two teaching general hospitals. Demographic information was collected. All patients went through an interview with a senior psychiatrist using the Brief Psychiatric Rating Scale (BPRS). The Caregiver Burden Inventory–Brief Version and the Chinese Health Questionnaire (CHQ) were used to assess the caregiver burden and the caregivers' health condition. One‐way analysis of variance and Pearson correlation were used to analyze the relationship between demographic factors and caregiver burden. Multiple regression was used to analyze predictors of burden of caregivers. Statistical significance in this study was defined as P ≤ 0.05. Results: The caregiver burden scores (25.9 ± 10.7; range, 3–61) indicated a moderate burden level. Among the five dimensions of burden, caregiver anxiety (2.13 ± 0.86) was the highest, followed by dependency of the patient (1.85 ± 1.02), feeling shame and guilt (1.56 ± 1.02), and family interference (1.43 ± 0.83). The burden level of stigmata (1.32 ± 1.24) was the lowest. The first three rankings of burden were ‘I worry about his/her safety when he/she is alone’ (2.26 ± 1.15), ‘I worry that she/he will become sick at any time’ (2.23 ± 1.10), and ‘I feel he/she depends on me very much’ (2.02 ± 1.29). Patient satisfaction with medical staff support (P = 0.00), CHQ scores of the caregivers (P = 0.00), and the BPRS scores of the patients (P = 0.01) were significantly associated with the caregiver burden scores. Conclusions: The physical and mental health condition of the primary family caregiver of schizophrenia patients was the most important factor determining the caregiver burden level. Comprehensive multidisciplinary care of chronic schizophrenia patients is needed, care that supports the needs and improves the psychiatric symptoms of the patients, helps to decrease the caregiver burden level, and facilitates family participation in treatment.     

Nonmotor symptoms are independently associated with impaired health‐related quality of life in Chinese patients with Parkinson's disease

We performed a cross‐sectional study of 82 Chinese patients with Parkinson's disease (PD) enrolled during an 18‐month period using a clinical interview to assess the prevalence of nonmotor symptoms (NMS), the association with disease severity and motor status, and the impact on patients' health‐related quality of life (Hr‐QoL). The patients' NMS, Hr‐QoL, disease severity, and motor status were assessed by the Nonmotor Symptoms Scale (NMSS), the 39‐item Parkinson's Disease Questionnaire (PDQ‐39), the modified Hoehn and Yahr staging scale (H&Y) and the Unified Parkinson's Disease Rating Scale part III (UPDRS III), respectively. We found that 100% of patients with PD presented with NMS. The NMSS significantly correlated with disease duration (Spearman's r_S = 0.276, P = 0.012), H&Y (r_S = 0.230, P = 0.038), and UPDRS III (r_S = 0.350, P = 0.001). Similarly, the PDQ‐39 SI significantly associated with the disease duration (r_S = 0.258, P = 0.019), H&Y (r_S = 0.340, P = 0.002), and UPDRS III (r_S = 0.453, P < 0.001). NMS domains that influenced the PDQ‐39 SI were sleep/fatigue, mood, gastrointestinal, urinary, and miscellaneous symptoms. This strongly suggested that the five domains played a key role in the manifestation of Hr‐QoL. NMSS explains more of the variability in Hr‐QoL than UPDRS III, when both are the model (stepwise multiple linear regression analysis R² change, 47.8% vs. 5.87%, respectively). Therefore, these findings demonstrate that NMS are independently and negatively associated with Hr‐QoL in PD and that improving NMS should be viewed as an important part in the management of PD. © 2010 Movement Disorder Society     

Psychometric properties of the SCOPA‐AUT Brazilian Portuguese version

Cross‐cultural adaptation and psychometric assessment of the Scales for Outcomes in Parkinson's Disease‐Autonomic questionnaire (SCOPA‐AUT) Brazilian Portuguese version. 150 consecutive Parkinson's disease (PD) patients were evaluated by means of the SCOPA‐motor scale (SCOPA‐M), SCOPA‐cognition (SCOPA‐COG), Hoehn and Yahr staging (H&Y), nonmotor symptoms scale (NMSS), PD questionnaire (PDQ‐39), and SCOPA‐AUT. The following psychometric attributes were explored: acceptability, scaling assumptions, reliability, precision, and construct validity. Patients' age (mean ± standard deviation) was 63.1 ± 11.1 years (56.7% men; duration of disease, 8.7 ± 5.3 years; median H&Y, 2). Mean SCOPA‐AUT was 23.0 ± 11.2. SCOPA‐AUT did not show floor or ceiling effect. As a whole, the SCOPA‐AUT item‐domain correlation was satisfactory, except for items 2 (Saliva), 7 (Faecal incontinence), 16 (Syncope), and 19 (Cold intolerance) (|r_S| = 0.03–0.32). Internal consistency was adequate, except for thermoregulatory and cardiovascular domains (alpha coefficients, 0.56 and 0.63, respectively). Intraclass correlation coefficient for the total score was 0.71, whereas weighted kappa for individual items ranged from 0.15 to 0.71 (only items 4 and 7 were <0.40). Standard error of measurement was 6.04. The SCOPA‐AUT total score correlated closely with the NMSS total score (r_S = 0.65) and PDQ‐39 Summary Index (r_S = 0.61) and at a moderate level with H&Y staging (r_S = 0.35) and SCOPA‐MS total score (r_S = 0.39) (all r_S values, P < 0.0001). Correlation of SCOPA‐AUT with SCOPA‐COG was weak. SCOPA‐AUT significantly increased as the H&Y stage increased (Kruskal‐Wallis, P < 0.0001). The SCOPA‐AUT Brazilian Portuguese version is an acceptable, reliable, and valid questionnaire to evaluate autonomic dysfunction in PD. © 2009 Movement Disorder Society     

Impact of donepezil hydrochloride on the care burden of family caregivers of patients with Alzheimer's disease

Background: To evaluate the impact of donepezil hydrochloride on the care burden on family members of patients with Alzheimer's disease (AD). At present, donepezil is the only drug approved for the treatment of AD in Japan. Although the care burden on primary caregivers of AD patients comprises both physical and psychological burdens and donepezil is recognized to improve cognitive dysfunction and associated symptoms, there are few data on the effects of the drug on the care burden. Methods: Of the uninstitutionalized AD patients who visited a dementia clinic between June 2008 and May 2009 with their primary family caregivers, 416 subjects who satisfied the enrollment criteria were registered for the study. All participants provided informed consent. Assessment included changes in scores on the Japanese version of the Zarit Caregiver Burden Interview (J‐ZBI) and the Mini‐Mental State Examination (MMSE), as well as the presence of behavioral and psychological symptoms of dementia (BPSD). Caregivers answered the questionnaires at baseline and after 12 weeks treatment with donepezil (starting dose 3 mg, p.o., once daily, followed by 5 mg after 1 or 2 weeks). Results: There were significant changes in mean scores on the J‐ZBI (?1.9 ± 9.5; P < 0.01) and MMSE (+0.9 ± 2.9; P < 0.01) from baseline to Week 12, without significant correlation between these two scores. In patients with BPSD, there was a significant decrease in J‐ZBI scores over the 12 weeks (P = 0.013); in contrast, in patients without BPSD, the decrease in the J‐ZBI score did not reach statistical significance (P = 0.418). Conclusions: The results indicate that donepezil improves cognitive function and some of the BPSD. As a possible consequence of improvements in BPSD, donepezil may also reduce caregivers' burden.     

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.     

A pilot study of the reliability and validity of the Caregiver Activity Survey – Intellectual Disability (CAS-ID)

Background People with Down's syndrome (DS) are at increased risk of Alzheimer‐type dementia (AD) when compared to the general population. Despite AD being a serious progressive disorder, little attention has been paid to the impact of the illness on formal caregivers. In the general population, the Caregiver Activity Survey (CAS) is used to measure time spent by family caregivers assisting people with AD in their day‐to‐day activities of living. In order to plan appropriate models of health and social care effectively for people with AD and DS, it is imperative that the care requirements of individuals at different stages of dementia are realized. An amended version of this survey, the Caregiver Activity Survey – Intellectual Disability (CAS‐ID), was developed and tested for use by professional caregivers in the present study. Methods The CAS‐ID was administered to 30 people with DS and their caregivers. Convergent validity was tested by comparing the results of the CAS‐ID to other validated tests for cognitive and functional impairment in individuals with DS. Test–retest and inter‐rater reliability were investigated. Results The final version of the CAS‐ID consists of eight items: dressing, bathing/showering, grooming, toileting, eating and drinking, housekeeping, nursing care‐related activities, and supervision/ behaviour management. The scale had excellent test–retest reliability, and correlated strongly with the Down Syndrome Mental Status Examination (DSMSE; r = ?0.770), the Test for Severe Impairment (TSI; r = ?0.881) and the Daily Living Skills Questionnaire (DLSQ; r = ?0.855). Conclusions The present authors provide preliminary evidence for the validity and reliability of the CAS‐ID. This instrument offers a means of identifying and measuring care and resources requirements as this population experiences symptoms of dementia. Such information may help assist healthcare professionals in planning supports and services to address the care challenges evidenced at different stages of the disease process.     

The relationship between quality of life and swallowing in Parkinson's disease

Few studies exist in the literature investigating the impact of idiopathic Parkinson's Disease (IPD) on swallow‐related quality of life. We therefore aimed in this project to: (1) evaluate swallow‐specific quality of life in IPD; (2) delineate potential relationships between IPD duration and severity with swallow‐specific quality of life; (3) investigate relationships between swallow‐specific quality of life and general health‐related quality of life; and (4) investigate relationships between swallow‐specific quality of life and depression. Thirty‐six patients diagnosed with IPD with and without dysphagia filled out self‐report assessments of the SWAL‐QOL, Parkinson's Disease Questionnaire‐39 (PDQ‐39), and Beck Depression Inventory (BDI). A series of Mann Whitney U tests were performed between non‐dysphagic and dysphagic groups for the total SWAL‐QOL score and the 10 SWAL‐QOL domains. Spearman's Rho correlation analyses were performed between the SWAL‐QOL and (1) PDQ‐39; (2) Hoehn and Yahr stage; (3) PD disease duration; (4) UPDRS “on” score; and (5) the BDI. The dysphagia swallowing group reported significant reductions compared to the non‐dysphagic group for the total SWAL‐QOL score (P = 0.02), mental health domain score (P = 0.002) and social domain score (P = 0.002). No relationships existed between swallow‐specific quality of life and disease duration or severity. Significant relationships existed between swallow‐specific quality of life and general health‐related quality of life (r_s =?0.56, P = 0.000) and depression (r_s = ?0.48, P = 0.003). These exploratory data highlight the psychosocial sequelae that swallowing impairment can have in those with IPD and suggest a possible association between swallowing, social function, and depression. © 2009 Movement Disorder Society     

A double‐blind,placebo‐controlled trial of rosiglitazone for clozapine‐induced glucose metabolism impairment in patients with Schizophrenia

Objective: The primary purpose of this 8‐week double‐blind, placebo‐controlled trial of rosiglitazone 4 mg/day was to examine its effect on insulin sensitivity index (SI) and glucose utilization (SG) in clozapine‐treated subjects with schizophrenia with insulin resistance. Method: Eighteen subjects were randomized and accessed with a Frequently Sampled Intravenous Glucose Tolerance Test (FSIVGTT) at baseline and at week 8 to estimate SG and SI. Results: Controlling for the baseline, comparing the rosiglitazone group with placebo group, there was a non‐significant improvement in SG (0.016 ± 0.006–0.018 ± 0.008, effect size = 0.23, P = 0.05) with a trend of improvement in SI in the rosiglitazone group (4.6 ± 2.8–7.8 ± 6.7, effect size = 0.18, P = 0.08). There was a significant reduction in small low‐density lipoprotein cholesterol (LDL‐C) particle number (987 ± 443–694 ± 415, effect size = 0.30, P = 0.04). Conclusion: Rosiglitazone may have a role in addressing insulin resistance and lipid abnormalities associated with clozapine.     

Functional dependence and caregiver burden in Alzheimer's disease: a controlled trial on the benefits of motor intervention

Background: Cognitive decline has a negative impact on functional activities in Alzheimer's disease. Investigating the effects of motor intervention with the intent to reduce the decline in functionality is an expected target for patients and caregivers. The aim of this study was to verify if a 6‐month motor intervention programme promoted functionality in Alzheimer's patients and attenuated caregivers' burden. Methods: The sample comprised 32 community patients with Alzheimer's disease and their 32 respective caregivers. Patients were divided into two groups: 16 participated in the motor intervention programme and 16 controls. Subjects performed 60 minutes of exercises, three times per week during the 6‐month period, to improve flexibility, strength, agility and balance. Caregivers followed the procedures with their patients during this period. Functionality was evaluated by the Berg Functional Balance Scale and the Functional Independence Measure. Caregivers completed the Neuropsychiatric Inventory Caregiver Distress Scale and the Zarit Carer Burden Scale. Two‐way ANOVA was used to verify the interaction between time (pre‐ and post‐intervention) and the motor intervention program. Results: While patients in the motor programme preserved their functionality, as assessed by the Functional Independence Measure, the controls suffered a relative decline (motor intervention group: from 109.6 to 108.4 vs controls: from 99.5 to 71.6; P= 0.01). Patients from motor intervention also had better scores than the controls on functional balance assessed by Berg scale (F: 22.2; P= 0.001). As assessed by the Neuropsychiatric Inventory and Zarit scale, burden was reduced among caregivers whose patients participated in the motor intervention programme compared with caregivers whose patients did not participate in this programme (Neuropsychiatric Inventory, caregiver's part: F: 9.37; P= 0.01; Zarit: F: 11.28; P= 0.01). Conclusion: Patients from the motor intervention group showed reduced functional decline compared to the controls, and there was an associated decrease in caregivers' burden.     

Restless legs syndrome in Parkinson's disease

We aimed to investigate the prevalence of restless legs syndrome (RLS) according to essential diagnostic criteria, and to explore potential associations with clinical features, especially motor fluctuations, in a cohort of 113 patients with idiopathic Parkinson's disease (PD). Twenty‐eight (24%) fulfilled essential diagnostic criteria for RLS. They were younger (63.1 ± 8.6 vs. 68.8 ± 9.0 years; P = 0.004), had an earlier onset of PD (54.1 ± 9.5 vs. 59.2 ± 10.3 years; P = 0.018), and received lower levodopa equivalent doses (578.4 ± 382.2 vs. 779.1 ± 459.6 mg/day; P = 0.04) than patients with PD who scored negative for RLS. In 23 patients (82%), RLS symptom onset was after PD onset (mean interval, 4.5 ± 3.7 years). The majority (n = 17, 61%) who scored positive for RLS reported that the urge to move the legs and unpleasant sensations were associated with wearing off, raising the possibility of RLS mimics in fluctuating patients with PD. © 2009 Movement Disorder Society     

The Caregiver Activity Survey (CAS): development and validation of a new measure for caregivers of persons with Alzheimer's disease

Background. Most instruments that measure the impairments associated with Alzheimer's disease assess symptom severity. Little attention has been paid to the illness's impact on the time formal and informal caregivers spend caring for Alzheimer's individuals. A tool that measures the time spent caregiving would help to determine the economic impact of the illness. The Caregiver Activity Survey (CAS) was developed to measure the time caregivers spend aiding Alzheimer's patients with their day-to-day activities. Methods. The test–retest reliability of the CAS was assessed during a 3-week study with 42 Alzheimer's patients and their caregivers. The CAS was validated with the Alzheimer's Disease Assessment Scale Cognitive Subscale (ADAS-Cog), the Mini Mental State Exam (MMSE) and the Physical Self Maintenance Scale (PSMS). Results. The final version of the CAS consists of six items (communicating with the person, using transportation, eating, dressing, looking after one's appearance and supervising the person). The six-item CAS total score has high test–retest reliability, with ICC = 0.88 between weeks 1 and 3. The scale has strong convergent validity with the ADAS-Cog (r = 0.61), MMSE (r = −0.57) and PSMS (r = 0.43). Efforts to include a dimension that reflects caregiver burden were not successful, in part due to the reluctance of caregivers to acknowledge that caregiving is bothersome. Conclusions. The CAS provides a new tool that measures time spent caring for Alzheimer's individuals. The instrument may be used to augment existing clinical assessments that measure the efficacy of potentially therapeutic agents for persons with Alzheimer's disease. © 1997 John Wiley & Sons, Ltd.     

Amantadine extended release for levodopa‐induced dyskinesia in Parkinson's disease (EASED Study)

ADS‐5102 is a long‐acting, extended‐release capsule formulation of amantadine HCl administered once daily at bedtime. This study investigated the safety, efficacy, and tolerability of ADS‐5102 in Parkinson's disease (PD) patients with levodopa‐induced dyskinesia. This was a randomized, double‐blind, placebo‐controlled, parallel‐group study of 83 PD patients with troublesome dyskinesia assigned to placebo or one of three doses of ADS‐5102 (260 mg, 340 mg, 420 mg) administered daily at bedtime for 8 weeks. The primary efficacy analysis compared change from baseline to week 8 in Unified Dyskinesia Rating Scale (UDysRS) total score for 340 mg ADS‐5102 versus placebo. Secondary outcome measures included change in UDysRS for 260 mg, 420 mg, Fatigue Severity Scale (FSS), Movement Disorder Society Unified Parkinson's Disease Rating Scale (MDS‐UPDRS), patient diary, Clinician's Global Impression of Change, and Parkinson's Disease Questionnaire (PDQ‐39). ADS‐5102 340 mg significantly reduced dyskinesia versus placebo (27% reduction in UDysRS, P = 0.005). In addition, ADS‐5102 significantly increased ON time without troublesome dyskinesia, as assessed by PD patient diaries, at 260 mg (P = 0.004), 340 mg (P = 0.008) and 420 mg (P = 0.018). Adverse events (AEs) were reported for 82%, 80%, 95%, and 90% of patients in the placebo, 260‐mg, 340‐mg, and 420‐mg groups, respectively. Constipation, hallucinations, dizziness, and dry mouth were the most frequent AEs. Study withdrawal rates were 9%, 15%, 14%, and 40% for the placebo, 260‐mg, 340‐mg, and 420‐mg groups, respectively. All study withdrawals in the active treatment groups were attributable to AEs. ADS‐5102 was generally well tolerated and resulted in significant and dose‐dependent improvements in dyskinesia in PD patients. © 2015 Adamas Pharmaceuticals, Inc. Movement Disorders published by Wiley Periodicals, Inc. on behalf of International Parkinson and Movement Disorder Society.     

THE PRINCE HENRY HOSPITAL DEMENTIA CAREGIVERS’ TRAINING PROGRAMME

Objective. To describe the theory, elements and practice of a successful caregiver training programme; and report the 8-year outcome. Design. Prospective, randomized control trial and longitudinal follow-up over approximately 8 years. Setting. Psychiatry unit, general teaching hospital, Sydney, Australia. Participants. 96 persons less than 80 years old with mild to moderate dementia and their cohabiting caregivers. Interventions. All patients received a 10-day structured memory retraining and activity programme. Caregivers in the immediate and wait-list caregiver training groups received a structured, residential, intensive 10-day training programme, boosted by follow-ups and telephone conferences over 12 months. Those in the wait-list group entered the programme after waiting 6 months. The third group of caregivers received 10 days’ respite (while patients underwent their memory retraining programme) and 12 months booster sessions as for the other groups. Main outcome measures. Nursing home admission; time until patient death. Main results. 64% of patients whose caregivers were in the immediate training group, 53% of wait-list group patients and 70% of memory retraining patients had died. Nursing home admission had occurred in 79% of the immediate training, 83% of the delayed and 90% of the memory retraining group. Eight-year survival analysis indicated that patients whose caregivers received training stayed at home significantly longer (p = 0.037) and tended to live longer (p = 0.08). Conclusions. Caregiver training programmes demonstrably can delay institutionalization of people with dementia. © 1997 John Wiley & Sons, Ltd.     

Anger in Parkinson's disease: A case‐control study

Cognitive‐psychiatric features of Parkinson's disease (PD) are common and they may be as disabling as the motor features of the disease. PD has been associated with stoic and inflexible personality traits. While many features of personality have been studied in PD, a systematic study of anger trait and anger expression in PD has not been performed. We used the Spanish adapted version of the state–trait anger Expression Inventory‐2 (STAXI‐2), comprised of six scales and an anger expression index, to measure anger trait and anger expression. There were 126 PD patients with depressive symptoms and 126 age‐ and gender‐matched controls. PD patients had lower levels of state anger (15.8 ± 3.1 vs. 17.9 ± 5.3, P < 0.001), trait anger (19.2 ± 5.3 vs. 20.7 ± 6.0, P < 0.05), anger expression‐out (9.0 ± 2.5 vs. 10.5 ± 3.0, P < 0.001), and anger expression index (26.1 ± 8.8 vs. 29.6 ± 9.4, P = 0.002); and higher levels in anger expression‐in (14.0 ± 3.4 vs. 12.2 ± 3.2, P < 0.001), anger control‐out (18.6 ± 5.0 vs. 16.1 ± 5.0, P < 0.001), and anger control‐in (14.3 ± 4.7 vs. 13.0 ± 4.5, P < 0.05) than controls. These differences persisted in analyses adjusting for age, gender, and depressive symptoms. Conclusions: PD patients showed lower levels of external expression of anger and higher levels of control of anger. Our results demonstrate another dimension to the stoic personality trait seen in PD. © 2007 Movement Disorder Society     

Health‐related quality of life in early Parkinson's disease: The impact of nonmotor symptoms

Nonmotor symptoms (NMS) are common in patients with established Parkinson's disease (PD) and have a major impact upon quality of life. We investigated the significance of NMS in relation to health‐related quality of life (HRQoL) in patients with newly diagnosed PD. Patients and healthy controls were recruited as part of the Incidence of Cognitive Impairment in Cohorts with Longitudinal Evaluation in Parkinson's Disease Study. Prevalence of NMS was determined with the Non‐Motor Symptom Questionnaire. HRQoL was recorded with the 39‐item Parkinson's Disease Quality of Life Questionnaire (PDQ‐39). Further assessments included measures of motor disability, depression, sleep, and cognition. One hundred and fifty‐eight patients with newly diagnosed PD and 99 controls participated in this cross‐sectional study. Patients reported greater numbers of NMS than controls (mean 8.3 ± 4.3 versus 2.8 ± 2.5 symptoms; P < 0.001). Patients reported lowest HRQoL in the domains assessing bodily discomfort, mobility, and activities of daily living. Motor and nonmotor symptoms impacted negatively upon HRQoL scores. Patients with the postural instability and gait difficulty motor subtype reported worse HRQoL, compared with those with tremor‐dominant disease. Depression (P < 0.001), incomplete bowel emptying (P < 0.001), anxiety (P < 0.001), impaired concentration (P < 0.001), memory complaints (P < 0.001), and insomnia (P = 0.001) had the greatest negative impact upon HRQoL. NMS are common in patients with early PD and represent a significant cause of poorer health‐related quality of life. Cognitive, neuropsychiatric, and sleep disturbances are particularly associated with reduced well‐being. Screening and management of these symptoms should be prioritized at the time of diagnosis. © 2013 International Parkinson and Movement Disorder Society     

Neurobehavioral symptoms in ALS are negatively related to caregivers’ burden and quality of life

Objective: To evaluate the frequency of neurobehavioral symptoms related to FTLD in a consecutive series of amyotrophic lateral sclerosis (ALS) patients and to assess their influence on patients’ and caregivers’ mood, burden, and quality of life. Methods: A total of 70 couples of ALS patients and their caregivers consecutively seen in our ALS clinic were separately interviewed using a battery of tests assessing frontotemporal‐related neurobehavioral symptoms, emotional status, and quality of life. Patients’ behavioral abnormalities were assessed with the Frontal Systems Behavior Scale (FrSBe). Caregiver burden was assessed with the Caregiver Burden Inventory (CBI). Results: According to caregivers’ evaluations, 34 (48.6%) patients had FrSBe pathological scores at the time of the interview. According to patients’ evaluation, 9 (12.9%) patients had pathological scores at the time of the interview. In caregivers’ assessment, at the time of the interview the most commonly impaired neurobehavioral domain was apathy (39 patients, 55.7%), followed by executive dysfunction (32, 45.7%) and disinhibition (18, 25.7%). Neurobehavioral symptoms were related to the presence of bulbar symptoms at the time of the interview, but not to patients’ age, gender, or physical status (ALS‐FRS score). Patients’ neurobehavioral symptoms were significantly related to lower caregivers’ quality of life, highest depression, and highest burden, both in univariate and in multivariable analyses. Conclusions: Neurobehavioral symptoms were present in 50% of our ALS patients and were related to bulbar symptoms. They have a profound negative impact on caregivers’ psychological status and were highly related with caregivers’ burden.     

Effectiveness of multidisciplinary care for Parkinson's disease: A randomized,controlled trial

Multidisciplinary care is considered an optimal model to manage Parkinson's disease (PD), but supporting evidence is limited. We performed a randomized, controlled trial (RCT) to establish whether a multidisciplinary/specialist team offers better outcomes, compared to stand‐alone care from a general neurologist. Patients with PD were randomly allocated to an intervention group (care from a movement disorders specialist, PD nurses, and social worker) or a control group (care from general neurologists). Both interventions lasted 8 months. Clinicians and researchers were blinded for group allocation. The primary outcome was the change in quality of life (Parkinson's Disease Questionnaire; PDQ‐39) from baseline to 8 months. Other outcomes were the UPDRS, depression (Montgomery‐Asberg Depression Scale; MADRS), psychosocial functioning (Scales for Outcomes in Parkinson's disease‐Psychosocial; SCOPA‐PS), and caregiver strain (Caregiver Strain Index; CSI). Group differences were analyzed using analysis of covariance adjusted for baseline values and presence of response fluctuations. A total of 122 patients were randomized and 100 completed the study (intervention, n = 51; control, n = 49). Compared to controls, the intervention group improved significantly on PDQ‐39 (difference, 3.4; 95% confidence interval [CI]: 0.5–6.2) and UPDRS motor scores (4.1; 95% CI: 0.8–7.3). UPDRS total score (5.6; 95% CI: 0.9–10.3), MADRS (3.7; 95% CI: 1.4–5.9), and SCOPA‐PS (2.1; 95% CI: 0.5–3.7) also improved significantly. This RCT gives credence to a multidisciplinary/specialist team approach. We interpret these positive findings cautiously because of the limitations in study design. Further research is required to assess teams involving additional disciplines and to evaluate cost‐effectiveness of integrated approaches. © 2012 Movement Disorder Society