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- Scharfenort, Monica, et al.
(författare)
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Close relationships in Parkinson ' s disease patients with device-aided therapy
- 2021
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Ingår i: Brain and Behavior. - : John Wiley & Sons. - 2162-3279 .- 2162-3279. ; 11:6
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: Deep brain stimulation, continuous subcutaneous apomorphine infusion, and levodopa-carbidopa intestinal gel infusion, together called device-aided therapies (DAT), are introduced when oral and transdermal pharmacotherapy are not enough for a satisfactory control of Parkinson's disease (PD) symptoms. Solid relationships are central to an individual's well-being, but the impact of close relationships in advanced PD remains underexplored. The aim of this study was to investigate the development of close relationships between PD patients and their partners following the initiation of DAT and to examine the relationship structures in these relationships.Materials and Methods: This was a retrospective quantitative multicenter pilot study wherein 41 couples, patients with advanced PD and their partners, retrospectively rated their relationship satisfaction before the start of DAT, after one year of DAT and at the time of the interview. The couples also answered the Experiences in Close Relationships-Questionnaire of Relational Structures (ECR-RS).Results: Partners more often report changes in relationship satisfaction than patients between baseline and both 1 year after start of DAT (p = .049) and last evaluation (p = .041). The ECR-RS data reported significantly higher avoidance score for partners (p = .005) and significantly higher anxiety score for patients (p = .024).Conclusions: The close relationship wherein one part has PD and receives DAT has a high risk of being unequal. Prospective studies are needed for further clarification of the interplay between advanced PD, DAT, and close relationships, this in order to improve pre- and postinterventional support for PD patients receiving DAT, as well as their partners.
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| 2. |
- Timpka, Jonathan
(författare)
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Parkinson's Disease with Device, Diary, or in Disguise. Dyskinesia reduction, motor state evaluation, and workforce participation among persons with Parkinson's disease.
- 2021
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- INTRODUCTION: In the wait for disease-modifying treatment for Parkinson’s disease (PD), efforts towards improved symptom control and reduced negative effects of PD can result in meaningful change patients. The general efficacy of levodopa-carbidopa intestinal gel (LCIG) in advanced PD has been established, but its effects on dyskinesia need more investigation. The PD Home Diary has been used in clinical trials to evaluate treatment effects for almost 20 years, but needs to be validated. As treatments improve, it is vital to understand how PD affects workforce participation to further reduce the personal and societal effects of PD.AIMS: The overarching aim of this thesis is to increase the knowledge on how health services can support persons with PD. The thesis has two main themes: motor fluctuations and workforce participation. Firstly, the aim was to contribute to a better understanding and utilization of existing tools in the treatment and evaluation of motor fluctuations in PD: LCIG and the PD Home Diary. Secondly, the aim was to improve our understanding of the impact of PD on workforce participation.METHODS: Two clinical observational studies were used to investigate the effects of LCIG on dyskinesia and to validate the PD Home Diary, while one cross-sectional and one longitudinal registry study was designed to investigate workforce participation among persons with PD.RESULTS: LCIG was found to reduce dyskinesia among persons with advanced PD and troublesome dyskinesia at baseline. Motor state assessments from the patient-reported PD Home Diary and those by an experienced observer were found to be in fair agreement. Workforce unavailability was found to be associated with anxiety among working-age persons with PD. Persons with a first sick-leave due to PD exhibited increased sickness absence in the preceding five-year period compared to controls, particularly due to musculoskeletal diagnoses.CONCLUSIONS AND IMPLICATIONS: LCIG is a feasible treatment also for persons with advanced PD and troublesome dyskinesia. The PD Home Diary should not be regarded as interchangeable with the observer assessment gold standard. The association between workforce unavailability and anxiety needs further investigation, but anxiety should nonetheless be treated when identified. Musculoskeletal sickness absence is significantly increased in prodromal and early PD, which emphasizes that functioning and workforce participation is likely to be affected already at the time of diagnosis and thus demands immediate attention.
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