scholarly journals PND87 PARKINSON'S DISEASE EXPERIENCE FROM A PATIENT'S PERSPECTIVE: SYSTEMATIC REVIEW ON PATIENT REPORTED OUTCOMES

2020 ◽  
Vol 23 ◽  
pp. S276
Author(s):  
P. Shah ◽  
J. Yuan
2020 ◽  
Vol 7 (1) ◽  
Author(s):  
Luba Smolensky ◽  
◽  
Ninad Amondikar ◽  
Karen Crawford ◽  
Scott Neu ◽  
...  

2013 ◽  
Vol 29 (4) ◽  
pp. 539-545 ◽  
Author(s):  
Fuzhong Li ◽  
Peter Harmer ◽  
Yu Liu ◽  
Elizabeth Eckstrom ◽  
Kathleen Fitzgerald ◽  
...  

2020 ◽  
Vol 10 (4) ◽  
pp. 1779-1786
Author(s):  
Christopher G. Tarolli ◽  
Kelly Andrzejewski ◽  
Grace A. Zimmerman ◽  
Michael Bull ◽  
Steven Goldenthal ◽  
...  

Background: There is rising interest in remote clinical trial assessments, particularly in the setting of the COVID-19 pandemic. Objective: To demonstrate the feasibility, reliability, and value of remote visits in a phase III clinical trial of individuals with Parkinson’s disease. Methods: We invited individuals with Parkinson’s disease enrolled in a phase III clinical trial (STEADY-PD III) to enroll in a sub-study of remote video-based visits. Participants completed three remote visits over one year within four weeks of an in-person visit and completed assessments performed during the remote visit. We evaluated the ability to complete scheduled assessments remotely; agreement between remote and in-person outcome measures; and opinions of remote visits. Results: We enrolled 40 participants (mean (SD) age 64.3 (10.4), 29% women), and 38 (95%) completed all remote visits. There was excellent correlation (ICC 0.81–0.87) between remote and in-person patient-reported outcomes, and moderate correlation (ICC 0.43–0.51) between remote and in-person motor assessments. On average, remote visits took around one quarter of the time of in-person visits (54 vs 190 minutes). Nearly all participants liked remote visits, and three-quarters said they would be more likely to participate in future trials if some visits could be conducted remotely. Conclusion: Remote visits are feasible and reliable in a phase III clinical trial of individuals with early, untreated Parkinson’s disease. These visits are shorter, reduce participant burden, and enable safe conduct of research visits, which is especially important in the COVID-19 pandemic.


2019 ◽  
Author(s):  
Luba Smolensky ◽  
Ninad Amondikar ◽  
Karen Crawford ◽  
Scott Neu ◽  
Catherine M. Kopil ◽  
...  

AbstractFox Insight is an online, longitudinal health study of people with and without Parkinson’s disease with targeted enrollment set to at least 125,000 individuals. Fox Insight data is a rich data set facilitating discovery, validation, and reproducibility in Parkinson’s disease research. The dataset is generated through routine longitudinal assessments (health and medical questionnaires evaluated at regular cycles), one-time questionnaires about environmental exposure and healthcare preferences, and genetic data collection.Qualified Researchers can explore, analyze, and download patient-reported outcomes (PROs) data and Parkinson’s disease-related genetic variants at https://foxden.michaeljfox.org. The full Fox Insight genetic data set, including approximately 600,000 single nucleotide polymorphisms (SNPs), can be requested separately with institutional review and are described outside of this data descriptor.Fox Insight is sponsored by The Michael J. Fox Foundation for Parkinson’s Research.


Author(s):  
Muath Alturkistani ◽  
Ali Alahmari ◽  
Hussam Alhumaidi ◽  
Mohammed Alharbi ◽  
Alhanouf Alqernas ◽  
...  

2019 ◽  
Vol 30 (3) ◽  
pp. 405-413 ◽  
Author(s):  
Brittany E. Haws ◽  
Benjamin Khechen ◽  
Mundeep S. Bawa ◽  
Dil V. Patel ◽  
Harmeet S. Bawa ◽  
...  

OBJECTIVEThe Patient-Reported Outcomes Measurement Information System (PROMIS) was developed to provide a standardized measure of clinical outcomes that is valid and reliable across a variety of patient populations. PROMIS has exhibited strong correlations with many legacy patient-reported outcome (PRO) measures. However, it is unclear to what extent PROMIS has been used within the spine literature. In this context, the purpose of this systematic review was to provide a comprehensive overview of the PROMIS literature for spine-specific populations that can be used to inform clinicians and guide future work. Specifically, the authors aimed to 1) evaluate publication trends of PROMIS in the spine literature, 2) assess how studies have used PROMIS, and 3) determine the correlations of PROMIS domains with legacy PROs as reported for spine populations.METHODSStudies reporting PROMIS scores among spine populations were identified from PubMed/MEDLINE and a review of reference lists from obtained studies. Articles were excluded if they did not report original results, or if the study population was not evaluated or treated for spine-related complaints. Characteristics of each study and journal in which it was published were recorded. Correlation of PROMIS to legacy PROs was reported with 0.1 ≤ |r| < 0.3, 0.3 ≤ |r| < 0.5, and |r| ≥ 0.5 indicating weak, moderate, and strong correlations, respectively.RESULTSTwenty-one articles were included in this analysis. Twelve studies assessed the validity of PROMIS whereas 9 used PROMIS as an outcome measure. The first study discussing PROMIS in patients with spine disorders was published in 2012, whereas the majority were published in 2017. The most common PROMIS domain used was Pain Interference. Assessments of PROMIS validity were most frequently performed with the Neck Disability Index. PROMIS domains demonstrated moderate to strong correlations with the legacy PROs that were evaluated. Studies assessing the validity of PROMIS exhibited substantial variability in PROMIS domains and legacy PROs used for comparisons.CONCLUSIONSThere has been a recent increase in the use of PROMIS within the spine literature. However, only a minority of studies have incorporated PROMIS for its intended use as an outcomes measure. Overall, PROMIS has exhibited moderate to strong correlations with a majority of legacy PROs used in the spine literature. These results suggest that PROMIS can be effective in the assessment and tracking of PROs among spine populations.


2021 ◽  
Vol 5 (1) ◽  
pp. 5
Author(s):  
Josefa Domingos ◽  
Tamine Capato ◽  
Catarina Godinho

Exercise is widely recommended for people with Parkinson (PD). Boxing is a popular mode of training. However, including individuals with less favorable profiles may have a negative impact on participation. We performed a systematic review to study the patient characteristics that were included in boxing exercise programs research and reflect on the possible inclusion criteria that professionals can use for boxing exercise programs. Indications for the best profiles were limited due to the small number of studies. Boxing programs should include people with the diagnosis of PD in earlier stages, independently ambulatory, and without current severe musculoskeletal or cardiovascular conditions.


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