المؤلفون: Antonini, Angelo, Pahwa, Rajesh, Odin, Per, Henriksen, Tove, Soileau, Michael J., Rodriguez-Cruz, Ramon, Isaacson, Stuart H., Merola, Aristide, Lindvall, Susanna, Domingos, Josefa, Alobaidi, Ali, Jalundhwala, Yash J., Kandukuri, Prasanna L., Parra, Juan Carlos, Kukreja, Pavnit K., Onuk, Koray, Bergmann, Lars, Pike, James, Ray Chaudhuri, K.

المصدر: Neurology and Therapy MultiPark: Multidisciplinary research focused on Parkinson´s disease. 11(1):303-318

مصطلحات موضوعية: Accuracy, Advanced Parkinson’s disease, Clinical indicators, Device-aided therapy eligibility, Validity, Medicin och hälsovetenskap, Klinisk medicin, Neurologi, Medical and Health Sciences, Clinical Medicine, Neurology

الوصف: Introduction: Standardized and validated criteria to define advanced Parkinson’s disease (PD) or identify patient eligibility for device-aided therapy are needed. This study assessed the psychometric properties of clinical indicators of advanced PD and eligibility for device-aided therapy in a large population. Methods: This retrospective analysis of the Adelphi Parkinson’s Disease Specific Programme collected data from device-aided therapy-naïve people with PD in G7 countries. We assessed the presence of 15 clinical indicators of advancing PD and seven indicators of eligibility for device-aided therapy in patients classified with advanced PD or as eligible for device-aided therapy by the treating physician. Accuracy was assessed using area under the curve (AUC) and multivariable logistic regression models. Construct validity was examined via known-group comparisons of disease severity and burden among patients with and without each clinical indicator. Results: Of 4714 PD patients, 14.9% were classified with advanced PD and 17.5% as eligible for device-aided therapy by physician judgment. The presence of each clinical indicator was 1.9- to 7.3-fold more likely in patients classified with advanced PD. Similarly, the presence of device-aided therapy eligibility indicators was 1.8- to 5.5-fold more likely in patients considered eligible for device-aided therapy. All indicators demonstrated high clinical screening accuracy for identifying advanced PD (AUC range 0.84–0.89) and patients eligible for device-aided therapy (AUC range 0.73–0.80). The Unified Parkinson’s Disease Rating Scale (UPDRS) score, cognitive function, quality of life, and caregiver burden were significantly worse in indicator-positive patients. Conclusion: Specific clinical indicators of advanced PD and eligibility for device-aided therapy demonstrated excellent psychometric properties in a large sample, and thus may provide an objective and reliable approach for patient identification and treatment optimization.

الوصول الحر: https://lup.lub.lu.se/record/9aa67bf7-1fad-4a4e-a174-9b03c117e1e5Test
http://dx.doi.org/10.1007/s40120-021-00313-9Test

المؤلفون: Fernandez, Hubert H., Odin, Per, Standaert, David G., Henriksen, Tove, Jimenez-shahed, Joohi, Metz, Sharon, Alobaidi, Ali, Yan, Connie H., Kukreja, Pavnit, Parra, Juan Carlos, Zamudio, Jorge, Onuk, Koray, Wright, Jack, Antonini, Angelo

المصدر: Parkinsonism and Related Disorders MultiPark: Multidisciplinary research focused on Parkinson´s disease. 116

مصطلحات موضوعية: Device-aided therapy, Healthcare resource utilization, MANAGE-PD, Parkinson's disease, Quality of life, Symptom control, Medicin och hälsovetenskap, Klinisk medicin, Neurologi, Medical and Health Sciences, Clinical Medicine, Neurology

الوصف: Introduction: Device-aided therapy may improve the quality of life (QoL) for people with advanced Parkinson's disease (PD) and poorly controlled symptoms with oral therapy. MANAGE-PD is a validated tool classifying patients based on symptom control and advanced treatment eligibility. This study focused on patient/caregiver reported outcomes and healthcare resource utilization among patients grouped by MANAGE-PD categories. Methods: Device-aided therapy-naïve patients receiving oral treatments were identified from the Adelphi Parkinson's Disease Programme. Patients were categorized (category 1 to 3) using MANAGE-PD. PD-specific QoL (PDQ-39), care partner burden (ZBI), satisfaction with current treatment, healthcare resource utilization, associated healthcare costs, and future treatment discussion with providers were measured. Categories were compared using ANOVA, t-test, chi square and adjusted regression analyses. Results: Of the analytical sample (n = 2709), 18.9% were inadequately controlled on current therapy and potentially eligible for device-aided therapies (category 3). As expected, they had worse patient/caregiver reported outcomes versus patients in categories 1 or 2. However, the degree of difference in healthcare resource utilization, including: greater number of hospitalizations, emergency room (ER) visits and consultations, higher likelihood of being recipients of respite care, and greater PD treatment burden, was unexpected. Importantly, of patients in category 3 and their care partners, >40% did not report discussions with providers about device-aided therapies. Conclusion: MANAGE-PD category 3 patients had significantly higher burden on healthcare resources versus patients well-controlled with oral treatment or requiring only oral medication adjustments; yet almost half had no discussion on device-aided therapies with providers. Device-aided therapies may be considered in these patients.

الوصول الحر: https://lup.lub.lu.se/record/2bb7b44a-0cb2-44e4-ba13-abf9dbf7f2bfTest
http://dx.doi.org/10.1016/j.parkreldis.2023.105514Test

المؤلفون: Antonini, Angelo, Odin, Per, Schmidt, Peter, Cubillos, Fernando, Standaert, David G., Henriksen, Tove, Jimenez-Shahed, Joohi, Alobaidi, Ali, Jalundhwala, Yash J., Bao, Yanjun, Zamudio, Jorge, Parra, Juan Carlos, Kukreja, Pavnit, Onuk, Koray, Skalicky, Anne M., Kleinman, Leah, Jones, Eddie, Metz, Sharon, Fernandez, Hubert H.

المصدر: Parkinsonism and Related Disorders MultiPark: Multidisciplinary research focused on Parkinson´s disease. 92:59-66

مصطلحات موضوعية: Clinician decision-making, Clinician-reported, Continuous subcutaneous apomorphine infusion (CSAI), Deep brain stimulation (DBS), Dyskinesia, Levodopa-carbidopa intestinal gel (LCIG), MANAGE-PD, Motor fluctuations, Parkinson disease, Patient identification, Wearing-off, Medicin och hälsovetenskap, Klinisk medicin, Neurologi, Medical and Health Sciences, Clinical Medicine, Neurology

الوصف: Introduction: Making Informed Decisions to Aid Timely Management of Parkinson's Disease (MANAGE-PD) is a clinician-reported tool designed to facilitate timely identification and management of patients with advancing Parkinson's disease (PD) with suboptimal symptom control while on standard therapy. The objective of this study was to evaluate the validity and clinical value of the tool. Methods: Driven by structured inputs from a steering committee and panel of PD experts, the tool was developed to classify patients into 3 categories. Validity and clinical value were elucidated using a two-pronged approach: (i) hypothetical patient vignettes (n = 10) developed based on the MANAGE-PD tool and rated by 17 PD specialists and 400 general neurologists (GN) and (ii) patients with PD (n = 2546) managed in real-world clinical settings. Vignette validity was based on concordance between PD experts’ clinical judgement and MANAGE-PD vignette categorization. Patient-level data was used for known-group comparisons (validity) and discordant pair analysis (clinical value). Results: The tool demonstrated strong validity and clinical value among PD specialists (intraclass coefficient [ICC] 0.843; Fleiss weighted kappa [ƙweighted] 0.79) and GN (ICC 0.690; ƙweighted 0.65) using patient vignettes. MANAGE-PD also demonstrated real-world validity and clinical value based on ability to identify patients with incrementally higher clinical, economic, and humanistic PD burden across categories of the tool (p < 0.01). Conclusions: MANAGE-PD demonstrated robust validity and clinical value in identifying patients with suboptimal PD symptom control. Clinical use of MANAGE-PD may complement treatment decision-making and facilitate timely and comprehensive management of patients with advancing PD.

الوصول الحر: https://lup.lub.lu.se/record/cf15f09a-fa25-42e0-8dfb-81101f7f06f2Test
http://dx.doi.org/10.1016/j.parkreldis.2021.10.009Test

المؤلفون: Hultqvist, Jenny, Sahlström, Thomas, Timpka, Jonathan, Henriksen, Tove, Nyholm, Dag, Odin, Per, Eklund, Mona

المصدر: Occupational Therapy in Health Care MultiPark: Multidisciplinary research focused on Parkinson´s disease. 34(1):1-18

مصطلحات موضوعية: Device-aided therapy, everyday occupations, health, mental well-being, occupational therapy, Parkinson’s disease, Medicin och hälsovetenskap, Hälsovetenskap, Arbetsterapi, Medical and Health Sciences, Health Sciences, Occupational Therapy, Samhällsvetenskap, Sociologi, Socialt arbete, Social Sciences, Sociology, Social Work

الوصف: This cross-sectional study investigated performed activities and the level of satisfaction with everyday occupations among people (n = 67) with advanced Parkinson’s disease (PD), and how these factors and experiences of social relationships were related to mental well-being. Managing one’s hygiene and physical exercises were activities that the majority still performed, whereas few were engaged in work or other productive occupations. Perceived health problems and satisfaction with everyday occupations were important factors for mental well-being since satisfaction with everyday occupations may be an important focus for occupational therapists and other health professionals when supporting mental well-being among persons with advanced PD.

الوصول الحر: https://lup.lub.lu.se/record/013ea28d-3490-45b2-8b7e-04ca701619fcTest
http://dx.doi.org/10.1080/07380577.2019.1692269Test

المؤلفون: Van Laar, Teus, Chaudhuri, K. Ray, Antonini, Angelo, Henriksen, Tove, Trošt, Maja

المصدر: Van Laar , T , Chaudhuri , K R , Antonini , A , Henriksen , T & Trošt , M 2023 , ' Infusion Therapies in the Treatment of Parkinson's Disease ' , Journal of Parkinson's Disease , vol. 13 , no. 5 , pp. 641-657 . https://doi.org/10.3233/JPD-225112Test

مصطلحات موضوعية: apomorphine, carbidopa, Continuous subcutaneous infusion, implantable infusion pumps, levodopa drug combination, Parkinson's disease

الوصف: Oral levodopa is the gold-standard therapy for treating Parkinson's disease (PD) but after a few years of treatment the therapeutic window narrows, and patients often experience various treatment-related complications. Patients in this advanced PD stage may benefit from alternative therapy, such as continuous intrajejunal delivery of levodopa-carbidopa intestinal gel (LCIG; or carbidopa-levodopa enteral suspension), continuous intrajejunal delivery of levodopa-carbidopa-entacapone intestinal gel, or continuous subcutaneous apomorphine infusion. Consideration and initiation of infusion therapies in advanced PD are suggested before the onset of major disability. The present review summarizes clinical evidence for infusion therapy in advanced PD management, discusses available screening tools for advanced PD, and provides considerations around optimal use of infusion therapy.

وصف الملف: application/pdf

العلاقة: https://research.rug.nl/en/publications/0a45e714-90d8-4f68-97e4-1b5257e49df5Test

الإتاحة: https://doi.org/10.3233/JPD-225112Test
https://hdl.handle.net/11370/0a45e714-90d8-4f68-97e4-1b5257e49df5Test
https://research.rug.nl/en/publications/0a45e714-90d8-4f68-97e4-1b5257e49df5Test
https://pure.rug.nl/ws/files/857344877/Infusion_Therapies_in_the_Treatment_of_Parkinson_s_Disease.pdfTest
http://www.scopus.com/inward/record.url?scp=85165896933&partnerID=8YFLogxKTest

المؤلفون: Moes, Harmen R., Henriksen, Tove, Sławek, Jarosław, Phokaewvarangkul, Onanong, Buskens, Erik, van Laar, Teus

المصدر: Moes , H R , Henriksen , T , Sławek , J , Phokaewvarangkul , O , Buskens , E & van Laar , T 2023 , ' Tools and criteria to select patients with advanced Parkinson’s disease for device-aided therapies : a narrative review ' , Journal of Neural Transmission , vol. 130 , no. 11 , pp. 1359-1377 . https://doi.org/10.1007/s00702-023-02656-zTest

مصطلحات موضوعية: CSAI, DBS, Device-aided therapies, LCIG, Parkinson’s disease, Screening tools

الوصف: This article provides an overview of the various screening and selection tools which have been developed over the past 25 years to identify patients with Parkinson’s disease (PD) possibly eligible for device-aided therapies (DATs). For the available screening tools, we describe the target therapies (subtypes of DAT), development methods, validation data, and their use in clinical practice. In addition, the historical background and potential utility of these screening tools are discussed. The challenges in developing and validating these tools are also addressed, taking into account the differences in population, the local health care organization, and resource availability.

وصف الملف: application/pdf

العلاقة: https://research.rug.nl/en/publications/c24526cc-756c-4d32-bd3b-5f8cc7ba147eTest

الإتاحة: https://doi.org/10.1007/s00702-023-02656-zTest
https://hdl.handle.net/11370/c24526cc-756c-4d32-bd3b-5f8cc7ba147eTest
https://research.rug.nl/en/publications/c24526cc-756c-4d32-bd3b-5f8cc7ba147eTest
https://pure.rug.nl/ws/files/857343709/Tools_and_criteria_to_select_patients_with_advanced_Parkinson_s_disease_for_device_aided_therapies-_a_narrative_review.pdfTest
http://www.scopus.com/inward/record.url?scp=85165915532&partnerID=8YFLogxKTest

المؤلفون: Henriksen, Tove, Katzenschlager, Regina, Bhidayasiri, Roongroj, Staines, Harry, Lockhart, Donna, Lees, Andrew

المصدر: Journal of Neural Transmission ; volume 130, issue 11, page 1475-1484 ; ISSN 0300-9564 1435-1463

مصطلحات موضوعية: Biological Psychiatry, Psychiatry and Mental health, Neurology (clinical), Neurology

الوصف: Subcutaneous apomorphine infusion is a device-aided therapy for Parkinson’s disease that can be considered when motor fluctuations become persistent and are no longer adequately controlled by oral/transdermal medication. Apomorphine infusion is less invasive than enteral levodopa, deep brain stimulation or focused ultrasound, and is often indicated even when neurosurgical approaches are contraindicated. This article aims to provide practical guidance for doctors and nurses initiating and treating patients with apomorphine infusion, and is based on both trial data and clinical experience from movement disorders specialists. A post hoc analysis of data from the TOLEDO randomized clinical trial of apomorphine infusion was conducted along with an analysis of ‘real world’ experience from 13 movement disorders specialists using a questionnaire that focused on starting patients on apomorphine infusion. Practical guidelines for starting treatment with apomorphine infusion are provided taking into consideration the regional disparities in healthcare. Apomorphine infusion is straightforward to administer but to be successful it requires concordance from the patient and family, and clinical support from an experienced team of doctors and nurses, particularly in the early months of treatment.

الإتاحة: https://doi.org/10.1007/s00702-023-02686-7Test

المؤلفون: Martinez-Martin, Pablo, Skorvanek, Matej, Henriksen, Tove, Lindvall, Susanna, Domingos, Josefa, Alobaidi, Ali, Kandukuri, Prasanna L., Chaudhari, Vivek S., Patel, Apeksha B., Parra, Juan Carlos, Pike, James, Antonini, Angelo

المساهمون: AbbVie

المصدر: Journal of Neurology ; volume 270, issue 4, page 2162-2173 ; ISSN 0340-5354 1432-1459

مصطلحات موضوعية: Neurology (clinical), Neurology

الوصف: Background Caring for a partner or family member with Parkinson’s disease (PD) negatively affects the caregiver’s own physical and emotional well-being, especially those caring for people with advanced PD (APD). This study was designed to examine the impact of APD on caregiver perceived burden, quality of life (QoL), and health status. Methods Dyads of people with PD and their primary caregivers were identified from the Adelphi Parkinson’s Disease Specific Program (DSP™) using real-world data from the United States, Japan and five European countries. Questionnaires were used to capture measures of clinical burden (people with PD) and caregiver burden (caregivers). Results Data from 721 patient-caregiver dyads in seven countries were captured. Caregivers had a mean age 62.6 years, 71.6% were female, and 70.4% were a spouse. Caregivers for people with APD had a greater perceived burden, were more likely to take medication and had lower caregiver treatment satisfaction than those caring for people with early or intermediate PD; similar findings were observed for caregivers of people with intermediate versus early PD. Caregivers for people with intermediate PD were also less likely to be employed than those with early PD (25.3% vs 42.4%) and spent more time caring (6.6 vs 3.2 h/day). Conclusions This real-world study demonstrates that caregivers of people with APD experience a greater burden than those caring for people with early PD. This highlights the importance of including caregiver-centric measures in future studies, and emphasizes the need for implementing treatments that reduce caregiver burden in APD. Trial registration: N/A.

الإتاحة: https://doi.org/10.1007/s00415-022-11546-5Test

المؤلفون: Scharfenort, Monica, Timpka, Jonathan, Sahlström, Thomas, Henriksen, Tove, Nyholm, Dag, Odin, Per

المصدر: Brain and Behavior MultiPark: Multidisciplinary research focused on Parkinson´s disease. 11(6)

مصطلحات موضوعية: advanced Parkinson´s disease, apomorphine infusion, attachment theory, deep brain stimulation, device-aided treatment, levodopa infusion, relationship satisfaction, Medicin och hälsovetenskap, Klinisk medicin, Neurologi, Medical and Health Sciences, Clinical Medicine, Neurology

الوصف: 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.

الوصول الحر: https://lup.lub.lu.se/record/0bcdfe0f-7ca3-489a-91ba-bb2d3fbf3a5bTest
http://dx.doi.org/10.1002/brb3.2102Test

المؤلفون: Odin, Per, Chaudhuri, K Ray, Volkmann, Jens, Antonini, Angelo, Storch, Alexander, Dietrichs, Espen, Pirtošek, Zvezdan, Henriksen, Tove, Horne, Malcolm, Devos, David, Bergquist, Filip

المصدر: npj Parkinson's Disease MultiPark: Multidisciplinary research focused on Parkinson´s disease. 4:1-7

مصطلحات موضوعية: Medicin och hälsovetenskap, Klinisk medicin, Neurologi, Medical and Health Sciences, Clinical Medicine, Neurology

الوصف: Motor aspects of Parkinson's disease, such as fluctuations and dyskinesia, can be reliably evaluated using a variety of "wearable" technologies, but practical guidance on objective measurement (OM) and the optimum use of these devices is lacking. Therefore, as a first step, a panel of movement disorder specialists met to provide guidance on how OM could be assessed and incorporated into clinical guidelines. A key aspect of the incorporation of OM into the management of Parkinson's disease (PD) is defining cutoff values that separate "controlled" from "uncontrolled" symptoms that can be modified by therapy and that relate to an outcome that is relevant to the person with PD (such as quality of life). Defining cutoffs by consensus, which can be subsequently tested and refined, is the first step to optimizing OM in the management of PD. OM should be used by all clinicians that treat people with PD but the least experienced may find the most value, but this requires guidance from experts to allow non-experts to apply guidelines. While evidence is gained for devices that produce OM, expert opinion is needed to supplement the evidence base.

الوصول الحر: https://lup.lub.lu.se/record/85131b45-cd64-4b05-9f13-d82934822becTest
http://dx.doi.org/10.1038/s41531-018-0051-7Test