Perspectives on Parkinson disease care in Dutch nursing homes.

INTRODUCTION: Parkinson's disease (PD) is a complex and disabling disorder. Ultimately, 20% to 40% of patients are admitted to a nursing home, and neurologists often lose track of these patients. Care and treatment of these institutionalized patients have not been addressed comprehensively, but anecdotal reports suggest it is suboptimal. We conducted a qualitative study to analyze the quality of PD care in Dutch nursing homes from the perspective of residents, caregivers, and health care workers. METHODS: Experiences and (unmet) needs of 15 nursing home residents with PD and parkinsonism (90% Hoehn and Yahr stage 4 and 5) and 15 informal caregivers were assessed using semistructured interviews. Furthermore, 5 focus group discussions were organized with 13 nurses and 22 other health care professionals to explore the experiences and barriers of PD care. RESULTS: Three core unmet needs were identified: (1) unsatisfactory empathy and emotional support, according to residents and informal caregivers; (2) insufficient staff knowledge on PD-related issues, such as motor fluctuations, leading to poorly timed administration of levodopa; (3) suboptimal organization of care with limited access to neurologists and specialized PD nurses. CONCLUSIONS: PD care in Dutch nursing homes is suboptimal according to residents, informal caregivers, and health care workers. Three core areas for improvement were identified, including greater attention for psychosocial problems, improved PD-specific knowledge among nursing home staff, and better collaboration with hospital staff trained in movement disorders.

Parkinson disease in long term care facilities: a review of the literature.

Parkinson disease (PD) is common in long term care (LTC) facilities. The number of institutionalized patients with PD will rise sharply in the coming decades because of 2 concurrent phenomena: aging of the population leads to an increased PD prevalence and improved quality of care has led to a prolonged survival in advanced disease stages. Only a few studies have investigated the prevalence and clinical characteristics of patients with PD in LTC facilities. Even fewer studies have addressed the treatment strategies used to support these institutionalized patients, who are mostly in advanced stages of the disease. The available evidence suggests that current management of patients with PD in LTC facilities is less than optimal. In the Netherlands, and we suspect in many other countries, there are no formal guidelines for treating patients with PD who have been admitted to a LTC facility. In this review, we describe the epidemiology, clinical characteristics, and clinical management of patients with PD in LTC settings. We also address potentially modifiable elements of care and provide several recommendations to improve the management of PD in these facilities. We conclude by suggesting a possible guide for future research in this area.

Nonmotor symptoms in nursing home residents with Parkinson's disease: prevalence and effect on quality of life.

OBJECTIVES: To determine the prevalence of nonmotor symptoms (NMS) in nursing home (NH) residents with Parkinson's disease (PD) and to establish the association with quality of life. DESIGN: Cross-sectional. SETTING: Nursing homes in the southeast of the Netherlands. PARTICIPANTS: Nursing home residents with PD and a Mini-Mental State Examination score of 18 or greater (N = 73; mean age 78.7, disease duration 10 years, mainly Hoehn and Yahr Stages 4 (38%) and 5 (49%)) underwent detailed examination to determine the prevalence of NMS. MEASUREMENTS: Validated instruments for PD-related NMS were used to examine the NH residents with PD. The overall burden of NMS, and autonomic problems in particular, were measured using the Non-Motor Symptoms Scale (NMSS). Depression, neuropsychiatric symptoms, sleep problems, cognitive dysfunction, and motor impairments were focused on in further detail using established clinimetric tests. Linear regression analysis was used to examine the relationship between these symptoms and quality of life, which was measured using the Parkinson's Disease Questionnaire (PDQ-8). RESULTS: The NMSS revealed a mean of nearly 13 different NMS per resident. Autonomic problems (constipation, urinary urgency) were particularly prevalent (48-75% of residents). Depressive symptoms were present in 45%. The most prevalent neuropsychiatric symptoms other than depression were irritability and apathy. The most common sleep problems were overall poor nighttime sleep quality, daytime sleepiness, and nocturia. Cognitive problems were highly prevalent, and 77% of the residents met the criteria for PD-related dementia. High scores were also obtained for motor impairments. Mean PDQ-8 score was high, indicating poor quality of life. Poor quality of life was most strongly associated with the prevalence and severity of overall NMS burden (coefficient of determination = 0.45). CONCLUSION: Nonmotor symptoms were highly prevalent in NH residents with PD. Quality of life was poor, largely because of NMS. Because many NMS are potentially treatable, diagnosis and treatment of these severely affected individuals deserve more attention.

Motor profile and drug treatment of nursing home residents with Parkinson's disease.

OBJECTIVES: To examine the clinical characteristics, motor impairments, and drug treatments of nursing home residents with Parkinson's disease (PD). DESIGN: Cross-sectional study. SETTING: Nursing homes in the southeast of the Netherlands. PARTICIPANTS: Nursing home residents with PD and a Mini-Mental State Examination score of 18 or greater seen by a physician with experience in movement disorders. MEASUREMENTS: Participant characteristics, motor function, and dopaminergic medications were assessed. The Short Parkinson's Evaluation Scale/SCales for Outcomes in Parkinson's disease (SPES-SCOPA) was used to assess motor impairments and disabilities. RESULTS: Seventy-three nursing home residents with PD (mean age 78.7; 45% male; mean disease duration 10.1 years; Hoehn and Yahr 4 (38%) and 5 (49%)) were included. Most residents were severely disabled, 49% being wheelchair bound. According to the SPES-SCOPA, 44% of residents were "off" (in a motor state in which they are slow and stiff) most of the time. Dyskinesias were encountered infrequently. Most residents were mainly treated with levodopa monotherapy, and daily doses varied widely (20-1,600 mg, mean 673 mg); 25% of residents were treated with less than 400 mg levodopa daily, and 8% received no levodopa at all. The movement disorders specialist considered 32 residents to be possibly undertreated. CONCLUSION: These findings show that PD in nursing home residents is characterized by severe motor impairment and a high proportion of daily "off" time, which underscores the need for better management of PD in nursing homes, for example within specialized institutions or with periodic consultations by a movement disorders expert.

Clinical and pharmacogenetic determinants for the discontinuation of non-ergoline dopamine agonists in Parkinson's disease.

OBJECTIVE: To identify determinants for the discontinuation of non-ergoline dopamine agonist (DA) treatment in patients with Parkinson's disease (PD) and to identify genetic determinants in genes encoding dopamine receptor (DR)D2 and DRD3 in a exploratory analysis. METHODS: Patients included were first-time users of the non-ergoline DA ropinirole or pramipexole who had been diagnosed with PD before 2005. Treatment discontinuation was defined as a gap of 180 days or more between two refills of the DA. Non-genetic determinants for discontinuation were studied in the overall population, and genetic determinants [DRD2 141C Ins/Del, DRD2 (CA)n STR, DRD2 TaqIA, DRD3 MscI single nucleotide polymorphism (SNP) and DRD3 MspI SNP] were studied in a subgroup. Cox proportional hazard analysis was used to estimate the hazard ratios (HR) for the discontinuation of non-ergoline DA treatment. RESULTS: The study population comprised 90 patients. Apomorphine use was associated with non-ergoline DA discontinuation, although the apomorphine group consisted only of three patients [HR 6.26; 95% confidence interval (CI) 1.85­21.2]. Daily levodopa dosages between 500 and 1000 mg were positively associated with discontinuation (HR 2.31; 95% CI 1.08­4.93). Included in the exploratory pharmacogenetic analysis were 38 patients. The absence of a 15× DRD2 CA repeat allele was significantly related with a decreased discontinuation of non-ergoline treatment (HR 0.23; 95% CI 0.07­0.81). The DRD3 MspI polymorphism showed a non-significant allele dose effect, suggestive of a causal relationship. CONCLUSION: This study identified apomorphine use and levodopa dosages between 500 and 1000 mg as non-genetic and the 15× DRD2 CA repeat allele as genetic determinants for the discontinuation of non-ergoline DA treatment in patients with PD. More research is needed to replicate these findings.

Discontinuation of ropinirole and pramipexole in patients with Parkinson's disease: clinical practice versus clinical trials.

OBJECTIVE: To compare characteristics and incidence of discontinuation of Parkinson's disease (PD) patients starting ropinirole or pramipexole in clinical practice with data from randomised controlled clinical trials (RCTs). METHODS: Included in the retrospective clinical-practice cohort were first-time users of ropinirole or pramipexole diagnosed with PD before 2005. Baseline characteristics and incidence of discontinuation were compared between the clinical-practice cohort and RCTs. Treatment discontinuation was defined as more than 180 days between two refills of ropinirole or pramipexole. The incidence of discontinuation in RCTs was based on the reported rate of discontinuation for any cause. RESULTS: Included were 45 patients who started with ropinirole and 59 patients who started with pramipexole. Treatment was discontinued within 3 years in 51% (ropinirole) and 60% (pramipexole) of the patients. Ten RCTs with ropinirole and 12 with pramipexole were identified. Baseline characteristics did not differ between the clinical-practice cohort and RCTs. RCTs reported discontinuation rates comparable with those at the same timepoint in the clinical practice until 1 year of follow-up. CONCLUSION: This study shows that the overall incidence of discontinuation of ropinirole and pramipexole between the patients in our clinical-practice cohort and patients in the RCTs was comparable for the short term. However for the long term, discontinuation in practice is possibly higher.