Association of Progressive Supranuclear Palsy Rating Scale with Progressive Supranuclear Palsy Quality of Life Scale

2021 ◽  
pp. 1-8
Author(s):  
Alexander Pantelyat ◽  
Lenora Higginbotham ◽  
Liana Rosenthal ◽  
Diane Lanham ◽  
Vanessa Nesspor ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Trials ◽  
Progressive Supranuclear Palsy ◽  
Rating Scale ◽  
Linear Regression Analysis ◽  
Disease Evolution ◽  
Quality Of Life Scale ◽  
Patient Reported ◽  
Scale Scores

<b><i>Introduction:</i></b> There is growing interest in using patient-reported outcomes as end points in clinical trials, such as the progressive supranuclear palsy quality of life (PSP-QoL) scale. However, this tool has not been widely validated and its correlation with validated motor scales has not been explored. To evaluate the potential utility of using PSP-QoL as an outcome, it is important to examine its relationship with a standard scale used to evaluate neurologic parameters, such as the PSP Rating Scale. <b><i>Methods:</i></b> PSP-QoL and PSP Rating Scale scores were gathered from 60 clinically diagnosed PSP patients, including patients with Richardson syndrome PSP (PSP-RS, <i>n</i> = 43) and those with non-RS PSP variants (<i>n</i> = 17). Linear regression analysis adjusted for age, sex, and disease duration was used to evaluate the cross-sectional relationship between the total and subscale scores of the 2 instruments. <b><i>Results:</i></b> Among 60 PSP patients, there was a significant correlation between total PSP-QoL and PSP Rating Scale scores. The physical and mentation subscales of each instrument also demonstrated significant correlations. Comparisons among PSP subtypes indicated that worsening PSP-QoL Total and Physical subscale scores correlated with worsening PSP Rating Scale gait subscale scores more strongly for the non-RS PSP variants than for PSP-RS. <b><i>Discussion:</i></b> There is a significant association between the total scores and many of the subscale scores of the PSP-QoL and the PSP Rating Scale. Additionally, the relationship between these measures may differ for PSP-RS and non-RS variants. These findings suggest that the PSP-QoL may be useful in clinical trials as a patient-reported outcome measure. Large prospective multicenter studies utilizing the PSP-QoL are necessary to examine its relationship to disease evolution and changes in the PSP Rating Scale.

Estimating minimal important differences for several scales assessing function and quality of life in patients with attention-deficit/hyperactivity disorder

CNS Spectrums ◽  
2016 ◽  
Vol 22 (1) ◽  
pp. 31-40 ◽  
Author(s):  
Paul Hodgkins ◽  
Andrew Lloyd ◽  
M. Haim Erder ◽  
Juliana Setyawan ◽  
Margaret D. Weiss ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Attention Deficit Hyperactivity Disorder ◽  
Clinical Trials ◽  
Attention Deficit ◽  
Total Sample ◽  
Parent Report ◽  
Hyperactivity Disorder ◽  
Quality Of Life Scale ◽  
Patient Reported

ObjectiveDefining minimal important difference (MID) is critical to interpreting patient-reported outcomes data and treatment efficacy in clinical trials. This study estimates the MID for the Weiss Functional Impairment Rating Scale–Parent Report (WFIRS-P) and the Child Health and Illness Profile–Parent Report (CHIP-CE-PRF76) among parents of young people with attention-deficit/hyperactivity disorder (ADHD) in the UK.MethodsParents of children (6–12 years; n=100) and adolescents (13–17 years; n=117) with ADHD completed a socio-demographic form, the CHIP-CE-PRF76, the WFIRS-P, and the Pediatric Quality of Life scale at baseline and 4 weeks later. At follow-up, a subset of parents completed anchor questions measuring change in the child/adolescent from baseline. MIDs were estimated using anchor-based and distribution-based methods, and separately for children and adolescents.ResultsThe MID estimates for overall change in the WFIRS-P total score ranged from 11.31 (standard error of measurement) to 13.47 (anchor) for the total sample. The range of MID estimates for the CHIP-CE-PRF76 varied by domain: 6.80–7.41 (satisfaction), 6.18–7.34 (comfort), 5.60–6.72 (resilience), 6.06–7.57 (risk avoidance), and 4.00–5.63 (achievement) for the total sample. Overall, MID estimates for WFIRS-P MID and CHIP-CE-PRF76 were slightly higher for adolescents than for children.ConclusionThis study estimated MIDs for these instruments using several methods. The observed convergence of the MID estimates increases confidence in their reliability and could assist clinicians and decision makers in deriving meaningful interpretations of observed changes in the WFIRS-P and CHIP-CE in clinical trials and practice.

Progressive Supranuclear Palsy Quality of Life Scale

2006 ◽  
Author(s):  
A. Schrag ◽  
C. Selai ◽  
N. Quinn ◽  
A. Lees ◽  
I. Litvan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Progressive Supranuclear Palsy ◽  
Quality Of Life Scale ◽  
Life Scale

scholarly journals Predictors of deterioration of symptoms and quality of life in patients with sarcoidosis

2013 ◽  
Vol 66 (suppl. 1) ◽  
pp. 77-83
Author(s):  
Branislav Gvozdenovic ◽  
Violeta Mihailovic-Vucinic ◽  
Mira Vukovic ◽  
Aleksandar Gvozdenovic ◽  
Aleksandra Dudvarski-Ilic ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Body Mass Index ◽  
Body Mass ◽  
Linear Regression Analysis ◽  
Forced Expiratory Volume ◽  
Measuring Instruments ◽  
Multivariate Linear Regression Analysis ◽  
Everyday Functioning ◽  
Patient Reported

Introduction. The most frequent clinical outcomes in sarcoidosis patients are typically focused on the objective measurements of functions of the involved organs, but, generally, they do not take into account the individual perception of patients? everyday functioning. The aim of this study was to determine the type of association between the subjective disease outcomes and other objective conventional parameters in patients with sarcoidosis. Material and Methods. In the cross-sectional study including 172 sarcoidosis patients (122 females), quality of life was measured by a generic instrument, i.e. fifteen-dimensional measure of health-related quality of life together with a respiratory specific instrument, i.e. St George?s Respiratory Questionnaire; symptoms of fatigue were measured by Fatigue Scale and dyspnea was measured by the Basal Dyspnea Index. Body-mass index and the course of the disease (acute vs. chronic) were also evaluated. Pulmonary function was assessed by spirometry. Results. Acute sarcoidosis was present in 48 (28%) patients. Mean body mass index was 27.01?5.2. Only 20 (12%) patients had lower forced expiratory volume in one second values (<80%) that indicated the existance of obstructive ventilatory impairment. Multivariate linear regression analysis revealed that body mass index, clinical course of disease and spirometric parameter forced expiratory volume in one second were the significant predictors (R2=0.929, p<0.01) of sarcoidosis related fatigue (B=0.061, B=0.406, B=0.452; respectively). Body mass index and forced expiratory volume in one second were the only parameters that significantly predicted both patients? quality of life (R2=0.932; B=0.017, B=0.263) and dyspnea (R2=0.847; B=0.025, B=0.668). Conclusions. It is important to measure both subjective patient-reported outcomes and objective disease parameters in sarcoidosis since they represent different aspects of the disease. All applied measuring instruments for the examined subjective outcomes demonstrated good measuring properties.

The Menopause Rating Scale (MRS): comparison with Kupperman index and quality-of-life scale SF-36

Climacteric ◽  
2000 ◽  
Vol 3 (1) ◽  
pp. 50-58 ◽  
Author(s):  
H. P. G. Schneider ◽  
L. A. J. Heinemann ◽  
H.-P. Rosemeier ◽  
P. Potthoff ◽  
H. M. Behre
Keyword(s):  
Quality Of Life ◽  
Rating Scale ◽  
Kupperman Index ◽  
Sf 36 ◽  
Quality Of Life Scale ◽  
Life Scale ◽  
Menopause Rating Scale

scholarly journals Toward Patient-Centered Innovation

2020 ◽  
Vol 15 (10) ◽  
pp. 1522-1530
Author(s):  
Jennifer E. Flythe ◽  
Tandrea S. Hilliard ◽  
Kourtney Ikeler ◽  
San Keller ◽  
Debbie S. Gipson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Trials ◽  
Conceptual Framework ◽  
Drug Administration ◽  
Food And Drug Administration ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Individuals with dialysis-dependent kidney failure experience considerable disease- and treatment-related decline in functional status and overall well-being. Despite these experiences, there have been few substantive technological advances in KRT in decades. As such, new federal initiatives seek to accelerate innovation. Historically, integration of patient perspectives into KRT product development has been limited. However, the US Food and Drug Administration recognizes the importance of incorporating patient perspectives into the total product life cycle (i.e., from product conception to postmarket surveillance) and encourages the consideration of patient-reported outcomes in regulatory-focused clinical trials when appropriate. Recognizing the significance of identifying patient-reported outcome measures (PROMs) that capture contemporary patient priorities, the Kidney Health Initiative, a public–private partnership between the American Society of Nephrology and US Food and Drug Administration, convened a workgroup to (1) develop a conceptual framework for a health-related quality of life PROM; (2) identify and map existing PROMs to the conceptual framework, prioritizing them on the basis of their supporting evidence for use in the regulatory environment; and (3) describe next steps for identifying PROMs for use in regulatory clinical trials of transformative KRT devices. This paper summarizes the proposed health-related quality-of-life PROM conceptual framework, maps and prioritizes PROMs, and identifies gaps and future needs to advance the development of rigorous, meaningful PROMS for use in clinical trials of transformative KRT devices.

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.

Correlation between patient-reported fatigue and hemoglobin (Hgb) levels in metastatic renal cell carcinoma (mRCC) patients (pts) receiving sunitinib (SU).

2014 ◽  
Vol 32 (4_suppl) ◽  
pp. 418-418
Author(s):  
Mellar P. Davis ◽  
Ewa M. Matczak ◽  
Connie Chen ◽  
Beata Korytowsky ◽  
Helen Bhattacharyya ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Renal Cell Carcinoma ◽  
Clinical Trials ◽  
Cell Carcinoma ◽  
Renal Cell ◽  
Randomized Clinical Trials ◽  
Dosing Schedule ◽  
Patient Reported ◽  
The Relationship

418 Background: Low Hgb is linked with fatigue in cancer pts; however, the onset and severity of fatigue is multifactorial. The approved SU dosing schedule in mRCC is 4 weeks on treatment, 2 weeks off, and quality of life (QoL) when examined on day 28 is significantly worse than on day 1 of each cycle. The relationship between pt-reported fatigue and Hgb levels with SU in mRCC was investigated. Methods: Two randomized clinical trials of SU were combined to examine the pt-reported fatigue item from FKSI-15 which asks pts to indicate their level of fatigue on a 5-point Likert scale from 0=“not at all” to 4=“very much”. Data were collected at baseline (BL; cycle 1, day 1) and on days 28 and 42 of each 42-day cycle. For each visit, only pts who had data for both fatigue and Hgb at BL were included in the analysis. Results: 481 pts were included. Fatigue and Hgb levels at BL and over cycles 1–6 are shown in the table. Pts reported worse fatigue (higher score) at day 28 of each cycle than on day 42. Fatigue scores typically ranged from 1= “a little bit” to 2=“somewhat”. Changes in Hgb levels, however, were modest and opposite to fatigue changes i.e. were higher on day 28 of each cycle and lower on day 42. Findings were similar beyond cycle 6. Conclusions: Pts indicated less fatigue on day 42, after the 2-week break, than on day 28 of each cycle, consistent with previous overall QoL findings. Low Hgb is not associated with worse fatigue in mRCC pts receiving SU.This may be due to the multifactorial nature of fatigue. The ‘on’ and ‘off’ periods in intermittent dosing are important considerations of patients’ full experience of QoL. [Table: see text]

Compliance of subjects using electronic patient-reported outcomes (ePRO) in multinational prostate trials.

2014 ◽  
Vol 32 (4_suppl) ◽  
pp. 232-232
Author(s):  
Susan M. Dallabrida
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Clinical Trials ◽  
Patient Reported Outcomes ◽  
Short Form ◽  
Quality Data ◽  
Data Set ◽  
Patient Reported ◽  
Clinic Visits

232 Background: Patient Reported Outcomes (PRO) and electronic PRO (ePRO) are increasingly becoming an important aspect of cancer clinical trials and patient care, especially with regard to measuring drug efficacy, patient quality of life and drug safety. Subject compliance with completion of PRO/ePRO assessments is an important component for obtaining accurate and high-quality data when conducting clinical trials. It has been hypothesized that patient health status, length of time in a trial and country of origin, may affect compliance. Methods: To address this hypothesis, an operational analysis was conducted to assess oncology subject completion compliance of PRO reports using an electronic tablet to determine its suitability and performance in use. Toward this objective, the compliance of prostate cancer patients in completing three electronic questionnaires that were administered at clinic visits was evaluated. Subjects were asked to complete the Brief Pain Inventory – Short Form (BPI-SF) at every clinic visit. At some clinic visits, subjects were asked to additionally complete the Functional Assessment of Cancer Therapy – Prostate (FACT-P) and the Euro Quality of Life 5 Dimensions (EQ-5D). Questionnaires were completed electronically on the tablet. Percent completion was calculated as the number of questionnaires completed divided by the number of questionnaires expected, based on attended clinic visits compiled for this review and the administration schedule for the questionnaires. Results: This review draws on the experience of over 1,000 subjects from 21 countries, and describes the individual and overall compliance with the expected questionnaire completion, the variance between subsequent visits, and compliance by country. Conclusions: The collection of ePRO using a clinic-based tablet yielded a highly complete data set in prostate cancer subjects demonstrating that this is an effective and feasible approach for recording symptoms and quality of life assessments.

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