Aaron Yarlas
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View article: Development of a user guide to support administration of the MRC Prion Disease Rating Scale in research and clinical settings for prion diseases
Development of a user guide to support administration of the MRC Prion Disease Rating Scale in research and clinical settings for prion diseases Open
The final User Guide was designed to accompany the MRC Scale and assist with rater decisions related to which response option most accurately describes a patient's health status. Conclusions: The User Guide is expected to be a valuable com…
View article: Internal consistency, construct validity, and responsiveness of the MRC Prion Disease Rating Scale
Internal consistency, construct validity, and responsiveness of the MRC Prion Disease Rating Scale Open
Background The Medical Research Council-Prion Disease Rating Scale (MRC-PDRS) is a 20-point clinician-reported outcome scale to assess disease progression in patients with prion disease, an invariably fatal neurodegenerative disease caused…
View article: Estimating Meaningful Differences in Measures of Neuropathic Impairment, Health‐Related Quality of Life, and Nutritional Status in Patients With Hereditary Transthyretin Amyloidosis
Estimating Meaningful Differences in Measures of Neuropathic Impairment, Health‐Related Quality of Life, and Nutritional Status in Patients With Hereditary Transthyretin Amyloidosis Open
Introduction/Aims The degree of change in neuropathic impairment and quality of life (QoL) that is clinically meaningful to patients with hereditary transthyretin amyloidosis with polyneuropathy (ATTRv‐PN) is not established. This study ai…
View article: Cross-Sectional Quantitative Evaluation of a Novel Patient-Reported Outcome Measure in Familial Chylomicronemia Syndrome
Cross-Sectional Quantitative Evaluation of a Novel Patient-Reported Outcome Measure in Familial Chylomicronemia Syndrome Open
BACKGROUND: Familial chylomicronemia syndrome (FCS) is a rare metabolic disorder that impacts physical, emotional, social, and cognitive functioning. The FCS-Symptom and Impact Scale (FCS-SIS) patient-reported outcome (PRO) measure assesse…
View article: Systematic Literature Review: Ability of the IBDQ-32 to Detect Meaningful Change in Ulcerative Colitis Health Indicators
Systematic Literature Review: Ability of the IBDQ-32 to Detect Meaningful Change in Ulcerative Colitis Health Indicators Open
Purpose Previous reviews produced weak evidence regarding the responsiveness of the Inflammatory Bowel Disease Questionnaire (IBDQ-32) to changes in ulcerative colitis (UC) health indicators. This systematic review and meta-analysis provid…
View article: Patient-Reported Outcomes Measures, Polycystic Kidney Disease Burden, and Outcomes in Autosomal Dominant Polycystic Kidney Disease
Patient-Reported Outcomes Measures, Polycystic Kidney Disease Burden, and Outcomes in Autosomal Dominant Polycystic Kidney Disease Open
View article: The impact of inotersen on Neuropathy Impairment Score in patients with hereditary transthyretin amyloidosis with polyneuropathy
The impact of inotersen on Neuropathy Impairment Score in patients with hereditary transthyretin amyloidosis with polyneuropathy Open
View article: Changes in Clinical Management of Patients with Schizophrenia Treated with Long-Acting Injectable Antipsychotics (LAIs), Including Telepsychiatry Use, During the COVID-19 Pandemic
Changes in Clinical Management of Patients with Schizophrenia Treated with Long-Acting Injectable Antipsychotics (LAIs), Including Telepsychiatry Use, During the COVID-19 Pandemic Open
Changes made by sites after the pandemic onset were viewed by almost all participants as satisfactory for maintaining standard of care. Almost all participants thought that the use of telepsychiatry services would continue after the pandem…
View article: Validation of the PROFAD-SSI-SF in Patients with Primary Sjögren's Syndrome with Organ Involvement: Results of Qualitative Interviews and Psychometric Analyses
Validation of the PROFAD-SSI-SF in Patients with Primary Sjögren's Syndrome with Organ Involvement: Results of Qualitative Interviews and Psychometric Analyses Open
View article: Considerations When Selecting Patient-Reported Outcome Measures for Assessment of Health-Related Quality of Life in Patients With Pulmonary Hypertension
Considerations When Selecting Patient-Reported Outcome Measures for Assessment of Health-Related Quality of Life in Patients With Pulmonary Hypertension Open
It is well established that pulmonary hypertension (PH) places a substantial burden on patients' health-related quality of life (HRQoL). As more effective treatments have been developed for this condition, evaluating treatment benefit base…
View article: Early Data on Long-term Impact of Inotersen on Quality-of-Life in Patients with Hereditary Transthyretin Amyloidosis Polyneuropathy: Open-Label Extension of NEURO-TTR
Early Data on Long-term Impact of Inotersen on Quality-of-Life in Patients with Hereditary Transthyretin Amyloidosis Polyneuropathy: Open-Label Extension of NEURO-TTR Open
View article: Responder analysis for neuropathic impairment and quality-of-life assessment in patients with hereditary transthyretin amyloidosis with polyneuropathy in the NEURO-TTR study
Responder analysis for neuropathic impairment and quality-of-life assessment in patients with hereditary transthyretin amyloidosis with polyneuropathy in the NEURO-TTR study Open
View article: The development and validation of a revised version of the Medical Outcomes Study Sleep Scale (MOS Sleep-R)
The development and validation of a revised version of the Medical Outcomes Study Sleep Scale (MOS Sleep-R) Open
Background The 12-item Medical Outcomes Study Sleep Scale (MOS Sleep Scale) has been used to capture patient-reported sleep problems in hundreds of studies. A revised version of the MOS Sleep Scale (MOS Sleep-R) was developed that uses sim…
View article: The impact of clinical symptoms and endoscopic and histologic disease activity on health-related quality of life in patients with ulcerative colitis following treatment with multimatrix mesalazine
The impact of clinical symptoms and endoscopic and histologic disease activity on health-related quality of life in patients with ulcerative colitis following treatment with multimatrix mesalazine Open
Purpose Studies of patients with ulcerative colitis (UC) report that reduced clinical symptoms and endoscopic activity predict better health-related quality of life (HRQoL). However, no study has examined the joint and unique associations …
View article: Rate of neuropathic progression in hereditary transthyretin amyloidosis with polyneuropathy and other peripheral neuropathies: a systematic review and meta-analysis
Rate of neuropathic progression in hereditary transthyretin amyloidosis with polyneuropathy and other peripheral neuropathies: a systematic review and meta-analysis Open
View article: Antipsychotic treatment experiences of people with bipolar I disorder: patient perspectives from an online survey
Antipsychotic treatment experiences of people with bipolar I disorder: patient perspectives from an online survey Open
View article: The Inflammatory Bowel Disease Questionnaire in Randomized Controlled Trials of Treatment for Ulcerative Colitis: Systematic Review and Meta-Analysis
The Inflammatory Bowel Disease Questionnaire in Randomized Controlled Trials of Treatment for Ulcerative Colitis: Systematic Review and Meta-Analysis Open
These analyses found that IBDQ-32 scores are sensitive to treatment. The results provided here support the use of the IBDQ-32 to capture treatment benefits on quality of life for patients with ulcerative colitis.
View article: Inotersen preserves or improves quality of life in hereditary transthyretin amyloidosis
Inotersen preserves or improves quality of life in hereditary transthyretin amyloidosis Open
View article: Burden of hereditary transthyretin amyloidosis on quality of life
Burden of hereditary transthyretin amyloidosis on quality of life Open
Introduction Hereditary transthyretin (hATTR) amyloidosis is a progressive, degenerative disease, with peripheral neuropathy, cardiomyopathy, and other clinical manifestations. In this study we examine the impact of hATTR amyloidosis on qu…
View article: Psychometric validation of the work productivity and activity impairment questionnaire in ulcerative colitis: results from a systematic literature review
Psychometric validation of the work productivity and activity impairment questionnaire in ulcerative colitis: results from a systematic literature review Open
View article: Tofacitinib in Patients with Ulcerative Colitis: Health-Related Quality of Life in Phase 3 Randomised Controlled Induction and Maintenance Studies
Tofacitinib in Patients with Ulcerative Colitis: Health-Related Quality of Life in Phase 3 Randomised Controlled Induction and Maintenance Studies Open
View article: Psychometric validation of the Perceived Deficits Questionnaire-Depression (PDQ-D) instrument in US and UK respondents with major depressive disorder
Psychometric validation of the Perceived Deficits Questionnaire-Depression (PDQ-D) instrument in US and UK respondents with major depressive disorder Open
The PDQ-D provides a reliable and valid measure of subjective cognitive dysfunction in patients with MDD.
View article: PND152 - IMPACT OF INOTERSEN ON GENERIC HEALTH-RELATED QUALITY OF LIFE FOR PATIENTS WITH HATTR AMYLOIDOSIS: RESULTS FROM A DOUBLE-BLIND PLACEBO-CONTROLLED TRIAL
PND152 - IMPACT OF INOTERSEN ON GENERIC HEALTH-RELATED QUALITY OF LIFE FOR PATIENTS WITH HATTR AMYLOIDOSIS: RESULTS FROM A DOUBLE-BLIND PLACEBO-CONTROLLED TRIAL Open
View article: The Burden of Hereditary Transthyretin Amyloidosis on Health-Related Quality of Life
The Burden of Hereditary Transthyretin Amyloidosis on Health-Related Quality of Life Open
View article: Changes in health-related quality of life and work-related outcomes for patients with mild-to-moderate ulcerative colitis receiving short-term and long-term treatment with multimatrix mesalamine: a prospective, open-label study
Changes in health-related quality of life and work-related outcomes for patients with mild-to-moderate ulcerative colitis receiving short-term and long-term treatment with multimatrix mesalamine: a prospective, open-label study Open
View article: Burden of Ulcerative Colitis on Functioning and Well-being: A Systematic Literature Review of the SF-36® Health Survey
Burden of Ulcerative Colitis on Functioning and Well-being: A Systematic Literature Review of the SF-36® Health Survey Open
Patients with active UC experience a clinically meaningful burden of disease across most aspects of quality of life. Patients with inactive UC exhibit negligible disease burden and are comparable to the general population on most quality-o…
View article: Health-Related Quality of Life and Work-Related Outcomes for Patients With Mild-to-Moderate Ulcerative Colitis and Remission Status Following Short-Term and Long-Term Treatment With Multimatrix Mesalamine: A Prospective, Open-Label Study
Health-Related Quality of Life and Work-Related Outcomes for Patients With Mild-to-Moderate Ulcerative Colitis and Remission Status Following Short-Term and Long-Term Treatment With Multimatrix Mesalamine: A Prospective, Open-Label Study Open
Patients in partial remission following multimatrix mesalamine treatment had HRQL and work-related outcomes equivalent to patients in complete remission. Achievement and maintenance of partial remission may be sufficient for improvements i…
View article: Tofacitinib in Patients with Ulcerative Colitis: Health-Related Quality of Life in Phase 3 Randomised Controlled Induction and Maintenance Studies
Tofacitinib in Patients with Ulcerative Colitis: Health-Related Quality of Life in Phase 3 Randomised Controlled Induction and Maintenance Studies Open
NCT01465763, NCT01458951 and NCT01458574.
View article: P558 The SF-36® Health Survey distinguishes disease burden on functioning and well-being between patients with active vs inactive ulcerative colitis
P558 The SF-36® Health Survey distinguishes disease burden on functioning and well-being between patients with active vs inactive ulcerative colitis Open
Background: Active ulcerative colitis (UC) is characterised by symptoms of fatigue, abdominal pain and increased stool frequency, which directly affect how patients feel and function, but even inactive disease may adversely affect p…
View article: P229. Evidence of content validity and psychometric properties of SF-36 for measuring health-related quality of life of patients with Crohn’s disease
P229. Evidence of content validity and psychometric properties of SF-36 for measuring health-related quality of life of patients with Crohn’s disease Open
Conclusions:The prevalence of malnutrition in IBD patients was high.Clinical activity was associated with an increased risk of malnutrition.More than half of patients believed that certain foods might trigger IBD flare.The majority of pati…