scholarly journals Preliminary Evaluation of Clinician Rated Outcome Measures in Mitochondrial Disease

2015 ◽  
Vol 2 (2) ◽  
pp. 151-155 ◽  
Author(s):  
Jane Newman ◽  
Brook Galna ◽  
Djordje G. Jakovljevic ◽  
Matthew G. Bates ◽  
Andrew M. Schaefer ◽  
...  
2017 ◽  
Vol 27 ◽  
pp. S3
Author(s):  
S. Koene ◽  
I. de Groot ◽  
M. de Vries ◽  
L. de Boer ◽  
M.C.H. Janssen ◽  
...  

2013 ◽  
Vol 84 (11) ◽  
pp. e2.111-e2
Author(s):  
Jane Newman ◽  
Brook Galna ◽  
Djordje Jakovljevic ◽  
Matthew Bates ◽  
Andrew Schaefer ◽  
...  

Author(s):  
Peggy M.J. Bergs ◽  
Daphne M. Maas ◽  
Mirian C.H. Janssen ◽  
Jan T. Groothuis

2018 ◽  
Vol 41 (6) ◽  
pp. 1267-1273 ◽  
Author(s):  
Saskia Koene ◽  
Lara van Bon ◽  
Enrico Bertini ◽  
Cecilia Jimenez-Moreno ◽  
Lianne van der Giessen ◽  
...  

2017 ◽  
Vol 41 (3) ◽  
pp. 246-250 ◽  
Author(s):  
Stefania Fatone ◽  
Ryan Caldwell

Background:Current transfemoral prosthetic sockets are problematic as they restrict function, lack comfort, and cause residual limb problems. Development of a subischial socket with lower proximal trim lines is an appealing way to address this problem and may contribute to improving quality of life of persons with transfemoral amputation.Objectives:The purpose of this study was to illustrate the use of a new subischial socket in two subjects.Study design:Case series.Methods:Two unilateral transfemoral prosthesis users participated in preliminary socket evaluations comparing functional performance of the new subischial socket to ischial containment sockets. Testing included gait analysis, socket comfort score, and performance-based clinical outcome measures (Rapid-Sit-To-Stand, Four-Square-Step-Test, and Agility T-Test).Results:For both subjects, comfort was better in the subischial socket, while gait and clinical outcomes were generally comparable between sockets.Conclusion:While these evaluations are promising regarding the ability to function in this new socket design, more definitive evaluation is needed.Clinical relevanceUsing gait analysis, socket comfort score and performance-based outcome measures, use of the Northwestern University Flexible Subischial Vaccum Socket was evaluated in two transfemoral prosthesis users. Socket comfort improved for both subjects with comparable function compared to ischial containment sockets.


2021 ◽  
Vol 2021 ◽  
pp. 1-10
Author(s):  
Aleksandra R. Budarick ◽  
Emily L. Bishop ◽  
Marcia L. Clark ◽  
Christopher D. Cowper-Smith

Purpose. Traditional knee osteoarthritis (OA) braces are usually indicated for a minority of patients with knee OA, as they are only suitable for those with unicompartmental disease affecting the tibiofemoral joint. A new assistive brace design is intended for use in a wider range of knee OA patients with heterogeneous symptoms characteristic of patellofemoral, tibiofemoral, or multicompartmental knee OA. The purpose of this case series was to explore whether the use of this novel “tricompartment offloader” (TCO) brace was associated with clinically relevant improvements in pain and function. Materials and Methods. A retrospective analysis of individuals with knee OA ( n = 40 ) was conducted to assess pain, function, physical activity, and use of medication and other treatments before and after brace use. Validated outcome measures including the Visual Analog Scale (VAS) and Lower Extremity Functional Scale (LEFS) were used to assess pain and physical function (primary outcome measures). Exploratory measures were used to quantify physical activity levels and use of medication and other treatments (secondary outcome measures). Results. Average total pain (VAS) scores decreased by 36.6 mm and physical function (LEFS) scores increased by 16.0 points following the use of the TCO brace. Overall, 70% of the participants indicated increased weekly physical activity and 60% reported a decrease in their use of at least one other treatment. Conclusions. Results from this case series suggest that the TCO brace shows strong potential to fill a conservative treatment gap for patients with heterogeneous symptoms of knee OA that are characteristic of patellofemoral or multicompartment disease. Further investigation is warranted.


2018 ◽  
Vol 46 (5) ◽  
pp. 1247-1261 ◽  
Author(s):  
Caterina Garone ◽  
Carlo Viscomi

Preclinical work aimed at developing new therapies for mitochondrial diseases has recently given new hopes and opened unexpected perspectives for the patients affected by these pathologies. In contrast, only minor progresses have been achieved so far in the translation into the clinics. Many challenges are still ahead, including the need for a better characterization of the pharmacological effects of the different approaches and the design of appropriate clinical trials with robust outcome measures for this extremely heterogeneous, rare, and complex group of disorders. In this review, we will discuss the most important achievements and the major challenges in this very dynamic research field.


1998 ◽  
Vol 12 (3) ◽  
pp. 271-282 ◽  
Author(s):  
Daniel S. Kirschenbaum ◽  
DeDe Owens ◽  
Edmund A. O’Connor

Smart Golf is a comprehensive approach to improving and scoring the mental game in golf. The five components are preparation, positive focusing (positive self-monitoring), plan, apply, and react. The acronym PAR summarizes the latter three components. A simple scoring system encourages golfers to self-monitor their use of the Smart Golf approach. In this preliminary evaluation of the efficacy of the approach, five experienced golfers (M years of playing = 17.8) participated in a 4-week seminar. Process measures indicated the extent to which participants used the approach. Outcome measures included golf scores at pre- and postintervention and at a 3-month follow-up. Psychological skills were also assessed at pre- and postintervention. Process analyses revealed that participants used the approach consistently during the seminar and follow-up period. All participants improved two critical psychological skills (emotional control and positive self-talk) as well as their average scores (at postintervention) and handicaps (at follow-up).


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Maggie E. Horn ◽  
Emily K. Reinke ◽  
Richard C. Mather ◽  
Jonathan D. O’Donnell ◽  
Steven Z. George

Abstract Background The integration of Patient Reported Outcome Measures (PROMs) into clinical care presents many challenges for health systems. PROMs provide quantitative data regarding patient-reported health status. However, the most effective model for collecting PROMs has not been established. Therefore the purpose of this study is to report the development and preliminary evaluation of the standardized collection of PROMs within a department of orthopedic surgery at a large academic health center. Methods We utilized the Users’ Guide to Integrating Patient-Reported Outcomes in Electronic Health Records by Gensheimer et al., 2018 as a framework to describe the development of PROMs collection initiative. We framed our initiative by operationalizing the three aspects of PROM collection development: Planning, Selection, and Engagement. Next, we performed a preliminary evaluation of our initiative by assessing the response rate of patients completing PROMs (no. of PROMs completed/no. of PROMs administered) across the entire department (18 clinics), ambulatory clinics only (14 clinics), and hospital-based clinics only (4 clinics). Lastly, we reported on the mean response rates for the top 5 and bottom 5 orthopaedic providers to describe the variability across providers. Results We described the development of a fully-integrated, population health based implementation strategy leveraging the existing resources of our local EHR to maximize clinical utility of PROMs and routine collection. We collected a large volume of PROMs over a 13 month period (n = 10,951) across 18 clinical sites, 7 clinical specialties and over 100 providers. The response rates varied across the department, ranging from 29 to 42%, depending on active status for the portal to the electronic health record (MyChart). The highest single provider mean response rate was 52%, and the lowest provider rate was 13%. Rates were similar between hospital-based (26%) and ambulatory clinics (29%). Conclusions We found that our standardized PROMs collection initiative, informed by Gensheimer et al., achieved scope and scale, but faced challenges in achieving a high response rate commensurate with existing literature. However, most studies reported a targeted recruitment strategy within a narrow clinical population. Further research is needed to elucidate the trade-off between scalability and response rates in PROM collection initiatives.


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