scholarly journals A post pandemic roadmap toward remote assessment for neuromuscular disorders: limitations and opportunities

2022 ◽  
Vol 17 (1) ◽  
Author(s):  
Jacqueline Montes ◽  
Katy J. Eichinger ◽  
Amy Pasternak ◽  
Cara Yochai ◽  
Kristin J. Krosschell
Keyword(s):  
Virtual Environment ◽  
Patient Reported Outcomes ◽  
Neuromuscular Disorders ◽  
Patient Reported ◽  
Remote Assessment ◽  
Disease Impact ◽  
Clinical Outcome Assessments ◽  
And Function ◽  
Patient Burden

AbstractRecent advances in technology and expanding therapeutic opportunities in neuromuscular disorders has resulted in greater interest in and development of remote assessments. Over the past year, the rapid and abrupt COVID-19 shutdowns and stay-at-home orders imposed challenges to routine clinical management and clinical trials. As in-person services were severely limited, clinicians turned to remote assessments through telehealth to allow for continued care. Typically, disease-specific clinical outcome assessments (COAs) for neuromuscular disorders (NMD) are developed over many years through rigorous and iterative processes to fully understand their psychometric properties. While efforts were underway towards developing remote assessments for NMD before the pandemic, few if any were fully developed or validated. These included assessments of strength, respiratory function and patient-reported outcomes, as well as wearable technology and other devices to quantify physical activity and function. Without many choices, clinicians modified COAs for a virtual environment recognizing it was not yet known how they compared to standard in-person administration. Despite being able to quickly adapt to the demands of the COVID-19 pandemic, these experiences with remote assessments uncovered limitations and opportunities. It became clear that existing COAs required modifications for use in a virtual environment limiting the interpretation of the information gathered. Still, the opportunity for real-world evaluation and reduced patient burden were clear benefits to remote assessment and may provide a more robust understanding and characterization of disease impact in NMD. Hence, we propose a roadmap navigating an informed post-pandemic path toward development and implementation of safe and successful use of remote assessments for patients with NMD.

scholarly journals Within-subjects Effects of Standardized Prosthetic Socket Modifications on Physical Function and Patient-Reported Outcomes

2021 ◽  
Author(s):  
William Anderst ◽  
Goeran Fiedler ◽  
Kentaro Onishi ◽  
Gina McKernan ◽  
Tom Gale ◽  
...  
Keyword(s):  
Physical Function ◽  
Patient Reported Outcomes ◽  
Design Method ◽  
Pressure Sensors ◽  
Residual Limb ◽  
Prosthetic Socket ◽  
Large Patient ◽  
Increased Risk ◽  
Patient Reported ◽  
And Function

Abstract • Background: Among the challenges of living with lower limb loss is the increased risk of long-term health problems that can be either attributed directly to the amputation surgery and/or prosthetic rehabilitation or indirectly to a disability-induced sedentary lifestyle. These problems are exacerbated by poorly fit prosthetic sockets. There is a knowledge gap regarding how the socket design affects in-socket mechanics, and how in-socket mechanics affect patient-reported comfort and function. The objectives of this study are: 1) to gain a better understanding of how in-socket mechanics of the residual limb in transfemoral amputees are related to patient-reported comfort and function, 2) to identify clinical tests that can streamline the socket design process, and 3) to evaluate the efficacy and cost of a novel, quantitatively informed socket optimization process.• Methods: Users of transfemoral prostheses will be asked to walk on a treadmill wearing their current socket plus 8 different check sockets with designed changes in different structural measurements that are likely to induce changes in residual limb motion, skin strain, and pressure distribution within the socket. Dynamic biplane radiography and pressure sensors will be used to measure in-socket residual limb mechanics. Patient-reported outcomes will also be collected after wearing each socket. The effects of in-socket mechanics on both physical function and patient-reported outcomes (aim 1) will be assessed using a generalized linear model. Partial correlation analysis will be used to examine the association between research grade measurements and readily available clinical measurements (aim 2). In order to compare the new quantitative design method to the Standard of Care, patient reported outcomes and cost will be compared between the two methods, utilizing the Wilcoxon Mann-Whitney non-parametric test (aim 3).• Discussion: Knowledge on how prosthetic socket modifications affect residual bone and skin biomechanics itself can be applied to devise future socket designs, and the methodology can be used to investigate and improve such designs, past and present. Apart from saving time and costs, this may result in better prosthetic socket fit for a large patient population, thus increasing their mobility, participation, and overall health-related quality of life. • Trial registration: clinicaltrials.gov: NCT05041998

scholarly journals Comparison of patient reported outcomes after Triathlon® and Kinemax Plus prostheses

2014 ◽  
Vol 96 (1) ◽  
pp. 61-66 ◽  
Author(s):  
S Dixon ◽  
AW Blom ◽  
MR Whitehouse ◽  
V Wylde
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Postal Questionnaire ◽  
Satisfaction Scale ◽  
Quality Of Life Scale ◽  
Patient Reported ◽  
Related Quality ◽  
One Year ◽  
And Function

INTRODUCTION The Triathlon® (Stryker, Kalamazoo, MI, US) total knee replacement was designed to improve patient function and survivorship. The aim of this study was to determine whether the Triathlon® prosthesis produces better patient reported outcomes than a previous design by the same manufacturer, the Kinemax Plus. METHODS The outcome of 233 knees of patients with a mean age of 68 years (range: 40–80 years) who received the Kinemax Plus prosthesis were compared with the outcomes of 220 knees of patients with a mean age of 70 years (range: 42–90 years) who received the Triathlon® prosthesis. Data were collected via postal questionnaire prior to surgery as well as at 8–12 weeks and at 1 year following surgery. Validated questionnaires were used including the WOMAC® (Western Ontario and McMaster Universities) pain and function scales, the Knee injury and Osteoarthritis Outcome Score quality of life scale and the self-administered patient satisfaction scale. RESULTS This study found that patients who had the Triathlon® prosthesis had significantly better pain relief (p<0.0001), function (p=0.028), knee related quality of life (p<0.0001) and satisfaction (p=0.0003) at three months after surgery than those who received the Kinemax Plus prosthesis. In addition, knee related quality of life (p=0.002) and satisfaction (p=0.021) were significantly higher at one year after surgery in Triathlon® patients. CONCLUSIONS The findings suggest that return to function and reduction in pain may occur more quickly in patients with a Triathlon® prosthesis than in those with the Kinemax Plus.

scholarly journals Pain Assessment in Foot and Ankle Patients

2018 ◽  
Vol 3 (3) ◽  
pp. 2473011418S0006
Author(s):  
Meghan Kelly ◽  
David Bernstein ◽  
Ashlee MacDonald ◽  
John Ketz ◽  
Adolph Flemister ◽  
...  
Keyword(s):  
Pain Management ◽  
Physical Function ◽  
Patient Reported Outcomes ◽  
Pearson Correlation ◽  
Pain Level ◽  
Foot And Ankle ◽  
Moderate Correlation ◽  
Patient Reported ◽  
And Function

Category: Other Introduction/Purpose: The ability to accurately quantify a patient’s pain pre-operatively is advantageous in the preparation of post-operative expectations and pain management. The Numeric Pain Rating Scale (NPRS) is a popular method to identify patient pain level. Other patient reported outcomes are being collected, such as the Patient Reported Outcomes Measurement Information System (PROMIS) and has been suggested to be more accurate in measuring pain as well as physical function. The aim of this study was to 1) determine whether NPRS or PROMIS Pain Interference (PI) demonstrates a stronger association with physical function as determined by PROMIS Physical Function (PF) and 2) to determine which method better predicts post-surgical pain in a population of elective surgical foot and ankle patients. Methods: Prospective PROMIS PF, PI and NPRS (0-10) data was obtained for common foot and ankle elective surgical procedures (CPT codes 27698, 27870, 28285, 28289, 28300, 28705, 28730, 28750) from a multi-surgeon foot and ankle clinic between February 2015 until November 2017. Pearson correlation coefficients were used to determine the relationship between NPRS (0-10) and PROMIS domains (PI, PF) pre and post-operatively. Correlations were considered high (> 0.7), high moderate (0.6-0.69), moderate (0.4-0.6) or weak (<0.4). Results: A total of 502 patients found to have complete data sets and > 6 month follow up were evaluated (74% women, mean age 54+/- SD, mean follow-up 14.4 months, range 6-34 months). Pearson correlation evaluation of NPRS and PI revealed a moderate correlation in the pre- and postoperative setting. There was a high moderate negative correlation between PI and PF t-scores pre and postoperatively suggesting more pain and less function. However, the negative correlation between NPRS and PF pre- and postoperatively was weak indicating a poor relationship between NPRS pain assessment and function. There was a moderate correlation between pre- and postoperative scores in all domains of PROMIS while the correlation between pre- and postoperative NPRS scores was weak. Conclusion: In a population of elective surgical foot and ankle patients, the use of both NPRS and PROMIS can be utilized to assess pain level, however the PROMIS PI domain demonstrated a stronger relationship with PROMIS PF than NPRS. Furthermore, only the PROMIS domains demonstrated at least a moderate correlation between pre- and post-operative scores. PROMIS PI provides superior assessment of pre- and post-operative physical function and prediction of post-operative pain. PROMIS PI can be used to gauge a patient’s pre-operative level of pain and function and aid the surgeon in guiding post-operative patient expectations and pain management.

Toward the use of proxy reports for estimating long-term patient-reported outcomes in multiple sclerosis

2014 ◽  
Vol 21 (14) ◽  
pp. 1865-1871 ◽  
Author(s):  
Judith M Sonder ◽  
Lisanne J Balk ◽  
Femke AH van der Linden ◽  
Libertje VAE Bosma ◽  
Chris H Polman ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Patient Reported Outcomes ◽  
Baseline Score ◽  
Impact Scale ◽  
Physical Scale ◽  
Patient Reported ◽  
Disease Impact ◽  
Physical Impact

Background: Assessment of disease impact in multiple sclerosis (MS) is usually driven by information obtained directly from patients using patient-reported outcomes. However, when patients’ response in longitudinal studies is less reliable or missing, proxy respondents may be used. Objective: The objective of this paper is to evaluate whether long-term patient scores can be reliably estimated using scores obtained from proxies. Methods: Baseline, six-month and two-year data were collected from 155 patients and proxies on the physical scale of the Multiple Sclerosis Impact Scale (MSIS-29). Linear regression analyses were performed with the patient two-year scores as outcome, proxy two-year scores as predictor and other variables that could contribute to a better prediction of the patient follow-up score. Results: The patient follow-up score could be predicted rather accurately ( R2 = 0.74) using the patient baseline score and the proxy follow-up score. The correlation between observed and predicted scores was 0.86. The model performed well in different follow-up durations and even better in an external cohort. Conclusion: A simple model of a constant value (intercept), the patient baseline score and the proxy follow-up score can predict patients’ follow-up score on the physical impact of MS.

scholarly journals Characterization of Patient Activation, Clinical Assessments, and Patient Reported Outcomes in T2DM Patients

2018 ◽  
Vol 21 ◽  
pp. S77
Author(s):  
L Lamerato ◽  
Y Harris ◽  
A Bissoonauth ◽  
CA Patel ◽  
M Durkin ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Patient Activation ◽  
Clinical Assessments ◽  
Patient Reported

Characterization of Patient-Reported Outcomes in Moderate to Severe Psoriasis

Dermatology ◽  
2011 ◽  
Vol 223 (1) ◽  
pp. 80-86 ◽  
Author(s):  
Stefanie Krenzer ◽  
Marc Radtke ◽  
Karlheinz Schmitt-Rau ◽  
Matthias Augustin
Keyword(s):  
Patient Reported Outcomes ◽  
Severe Psoriasis ◽  
Patient Reported

scholarly journals One and Two Year Postoperative Patient Reported Outcomes of Robotic-Assisted Total Knee Arthroplasty

10.29007/n4qv ◽  
2019 ◽  
Author(s):  
Christopher Blum ◽  
Christopher Plaskos ◽  
Adil Hussein ◽  
Jan A Koenig
Keyword(s):  
Total Knee Arthroplasty ◽  
Knee Arthroplasty ◽  
Patient Reported Outcomes ◽  
Computer Assisted ◽  
Robotic Assisted ◽  
Post Surgery ◽  
Patient Reported ◽  
National Cohort ◽  
Total Knee ◽  
And Function

Total knee arthroplasty is a successful procedure. However, there is still area for improvement as up to 15-20% of patients remain unsatisfied. Robotic-assisted surgery (RAS) may improve patient outcomes by providing a reproducible way of obtaining neutral mechanical alignment of the limb, which has been shown to reduce early revisions and correlate with patient reported outcomes after surgery.We prospectively enrolled 106 patients undergoing robotic-assisted TKA by a single surgeon performing a measured-resection femur-first technique using the OMNIBotic system. Patients completed a KOOS and New Knee Society Score (KSS) pre-operatively and at 3, 6, 12, and 24 months (M) postoperatively. Changes in the five KOOS sub-scales were compared to available literature data from the FORCE – TJR cohort, as well as to individual studies reporting on conventional and computer-assisted TKA.When compared to FORCE-TJR 6-month (M) and 2-year (Y) data, the RAS cohort had significantly higher improvements at 6M for pain (40.5 vs. 31.1, p&lt;.001) and at 2Y for all five KOOS sub-scores. The larger improvement was due to the RAS cohort having lower baseline KOOS scores than the FORCE-TJR cohort, except for the Sports-Recreation sub-score, which was similar pre- operatively but significantly higher post-operatively for the robotic cohort. Rates of dissatisfaction with knee pain level and function using the KSS after RAS were 3.0%, 1.0%, and 2.7% at 6, 12, and 24M postoperatively, respectively.Despite having poorer joint function and higher pain pre-operatively, robotic-assisted TKA patients achieved excellent self-reported outcomes, with significantly higher levels of improvement through two years post-surgery when compared with large national cohort studies. Further controlled clinical studies are warranted to determine if these results translate to other groups of surgeons, centers and patients.

scholarly journals A new indicator to measure discordance between patient reported outcomes and traditional disease activity holds promise to advance care trajectories improve care in patients with early Rheumatoid Arthritis

2021 ◽  
Author(s):  
Sofia Pazmino ◽  
Anikó Lovik ◽  
Annelies Boonen ◽  
Diederik De Cock ◽  
Veerle Stouten ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disease Activity ◽  
Disease Control ◽  
Patient Reported Outcomes ◽  
Sustained Remission ◽  
List Type ◽  
Factor Scores ◽  
Patient Reported ◽  
Disease Impact

ABSTRACTObjectiveTo unravel disease impact in early RA patients by separately quantifying patient reported (PRF), clinical (CF) and laboratory (LF) factors. We put forward a new indicator, the discordance score (DS), for early identification and prediction of unmet patient outcomes in terms of future achievement of sustained remission and RA-related quality of life (QoL).MethodsWe obtained factor scores via factor analysis in the CareRA trial, then calculated the DS between PRF and the mean of the other scores. We computed the improvement from baseline to week 104 (%) and area-under-the-curve (AUC) across time-points per factor score and compared these between patients achieving or not achieving sustained (week 16 to 104) remission (DAS28CRP<2.6) with ANOVA. Logistic and linear regressions respectively were used to predict SR based on previous factor and discordance scores, and QoL at year 1 and 2 based on DS at week 16.ResultsPRF, CF and LF scores improved rapidly within 8 weeks. In patients achieving SR; PRF improved 57%, CF 90% and LF 27%, compared to 32% PRF (p=0.13), 77% CF (p<0.001) and 9% LF (p=0.36) score improvement in patients not achieving SR. Patients achieving SR had an AUC of 15.7, 3.4 and 4.8 for PRF, CF and LF respectively, compared to 33.2, 10.1, and 7.2 in participants not achieving SR (p<0.001 for all). Early factor and discordance scores were associated with later stage factor scores as well as QoL and PRF scores predicted SR (p<0.005 for PRF and DS).ConclusionsAll factor scores improved rapidly, especially in patients achieving SR. Patient-reported burden improved less extensively. Discordance scores could help in predicting the need for additional non-pharmacological interventions to achieve SR and decrease disease impact.KEY MESSAGESWhat is already known about this subject?Early and intensive RA drug-treatment using disease activity as a target allows rapid disease control and prevents joint destruction.Including pain, fatigue and physical function when assessing patients with early RA broadens the evaluation of disease impact.What does this study add?Leveraging patient reported outcomes (pain, fatigue and physical function) and traditional disease activity measures, we introduce a new indicator (named discordance score) for unraveling disease impact and treatment efficacy.We show how the discordance score stands for current unmet patient reported outcomes and could be used to predict future sustained disease contol and quality of life (1 and 2 years after baseline).We demonstrate this effect both in patients with and without sustained remissionHow might this impact on clinical practice or future developments?The earlier detection of unmet needs despite good disease control could allow to perform timely interdisciplinary interventions other than medication adaptations and could promote psychosocial wellbeing for patients.

Sign in / Sign up

Export Citation Format

Share Document