Quality of life and resource utilization‐Swedish data from the Care of Late‐Stage Parkinsonism (CLaSP) study

Abstract

Netherlands: 733051003). The authors had full independence regarding data collection, manuscript preparation, decision to publish, study design, interpretation and analysis Background: Few studies have investigated the health-related quality of life (HRQoL), resource use and costs in patients with late-stage Parkinson's disease (PD), and data from the Swedish setting are scarce.Objectives: First, we analyse the HRQoL in late-stage PD in Sweden. Second, we analyse the resource use and costs per severity level. Third, we analyse the relationship between costs and physician-and patient reported-outcome measures. Materials and methods:The study was based on Swedish data from the Care of Late-Stage Parkinsonism (CLaSP) study. The costs of healthcare contacts, drugs, formal and informal care, and productivity loss were collected over three months. Assessments at baseline were used for outcomes (EQ-5D, Hoehn and Yahr (H&Y), Schwab and England Scale, Unified Parkinson's Disease Rating Scale subscales (UPDRS) and Non-Motor Symptoms Scale (NMSS)). Costs were estimated in € 2016. Results:In total, 106 patients were included. The mean EQ-5D score in the total group was 0.24 (±0.33). The mean total cost excluding informal care per patient in the three-month period was approximately €14,097 (BCa 95% CI €12,007 and €16,039).Professional care accounted for the largest share (75 percent) of the total costs. The EQ-5D, H&Y, Schwab and England Scale, and NMSS were statistically significant predicting factors for total costs. Conclusion:Patients with late-stage PD are a vulnerable patient group that is costly to society and the impairment in patients' HRQoL is immense. Thus, healthcare decision-makers should optimize the organization and provision of healthcare for these patients.

Levodopa–entacapone–carbidopa intestinal gel infusion in advanced Parkinson’s disease: real-world experience and practical guidance

“…Motor complications can arise from either inadequate dopaminergic stimulation resulting in substantial ‘OFF’ time or excess dopaminergic stimulation resulting in dyskinesias, 3 and if these are insufficiently treated, it can have a significant impact on patients’ quality of life, 4 – 6 that of their caregivers, 7 , 8 and also on healthcare system resources. 6 , 7 , 9 , 10 …”

“…Motor complications can arise from either inadequate dopaminergic stimulation resulting in substantial 'OFF' time or excess dopaminergic stimulation resulting in dyskinesias, 3 and if these are insufficiently treated, it can have a significant impact on patients' quality of life, [4][5][6] that of their caregivers, 7,8 and also on healthcare system resources. 6,7,9,10 Two recent studies undertaken in Sweden have highlighted the significant healthcare resource and societal costs of managing later stage and advanced PD, and importantly the detrimental effect on patients' health-related quality of life living with advancing disease. 6,10 With increasing OFF time, total care costs were found to increase while patients' productivity and ability to work decreased, 6 emphasising the importance of timely and effective symptom management.…”

“…Following a diagnosis of PD, there is generally a relatively short period where the effects of oral levodopa and adjunctive medications are stable; however, eventually motor complications (motor fluctuations and dyskinesias) can develop and the patient is considered to have 'advanced' disease 2 -this is generally the larger proportion of the patient's time living with PD. Motor complications can arise from either inadequate dopaminergic stimulation resulting in substantial 'OFF' time or excess dopaminergic stimulation resulting in dyskinesias, 3 and if these are insufficiently treated, it can have a significant impact on patients' quality of life, [4][5][6] that of their caregivers, 7,8 and also on healthcare system resources. 6,7,9,10 Two recent studies undertaken in Sweden have highlighted the significant healthcare resource and societal costs of managing later stage and advanced PD, and importantly the detrimental effect on patients' health-related quality of life living with advancing disease.…”

“…6,7,9,10 Two recent studies undertaken in Sweden have highlighted the significant healthcare resource and societal costs of managing later stage and advanced PD, and importantly the detrimental effect on patients' health-related quality of life living with advancing disease. 6,10 With increasing OFF time, total care costs were found to increase while patients' productivity and ability to work decreased, 6 emphasising the importance of timely and effective symptom management.…”

Quality of Life of People with Mobility-Related Disabilities in Sweden: A Comparative Cross-Sectional Study

“…Little is known about the QoL and how QoL is influenced by the social and economic situation of people with mobility-related disabilities in Sweden. Only a few studies on mobility-related disability and QoL in the Swedish context have been published within the last ten years [ 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 ]. International data have found a relationship between the perceived QoL and the level of disability [ 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 ], interaction and social activity [ 24 , 25 , 33 , 34 ], and increased age [ 24 , 30 , 35 , 36 ].…”