Cognitive and patient-reported outcomes in adults with pediatric-onset multiple sclerosis

2015 ◽  
Vol 22 (3) ◽  
pp. 354-361 ◽  
Author(s):  
Natalie F Baruch ◽  
Ellen H O’Donnell ◽  
Bonnie I Glanz ◽  
Ralph HB Benedict ◽  
Alexander J Musallam ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Patient Reported Outcomes ◽  
Disease Duration ◽  
Age Of Onset ◽  
Information Processing Speed ◽  
Patient Reported ◽  
Related Quality ◽  
Using Data ◽  
Patient Reported Measures ◽  
Pediatric Onset

Background: Little is known about long-term cognitive and patient-reported outcomes of pediatric-onset multiple sclerosis (POMS). Objective: The objective of this paper is to compare cognitive and patient-reported outcomes in adults with POMS vs. adult-onset MS (AOMS). Methods: We compared standardized patient-reported measures MSQOL54, MFIS, CES-D and SDMT in adult patients with MS onset prior to and after age 18, using data gathered in the Comprehensive Longitudinal Investigations in MS at Brigham and Women’s Hospital (CLIMB) study. Results: Fifty-one POMS and 550 AOMS patients were compared. SDMT scores were significantly lower in POMS after adjusting for age (−7.57 (−11.72, −3.43; p < 0.001), but not after adjusting for disease duration. Estimated group difference demonstrated lower normative z scores in POMS vs. AOMS in unadjusted analysis (−0.74 (95% CI: −1.18, −0.30; p = 0.0009) and after adjusting for disease duration (−0.60; 95%CI: −1.05, −0.15; p = 0.0097). Findings were unchanged in a subset of POMS diagnosed prior to age 18. In unadjusted and adjusted analyses, no significant differences were observed in health-related quality-of-life, fatigue, depression or social support between POMS and AOMS. Conclusions: Younger age of onset was associated with more impairment in information-processing speed in adults with POMS compared to AOMS, and remained significant when controlling for disease duration in age-normed analysis. The two groups were similar in terms of patient-reported outcomes, suggesting similar qualitative experiences of MS.

scholarly journals haMSter: a smartphone application for tracking patient reported outcomes in people with multiple sclerosis: protocol for a pilot study (Preprint)

2020 ◽  
Author(s):  
Patrick Altmann ◽  
Werner Hinterberger ◽  
Fritz Leutmezer ◽  
Markus Ponleitner ◽  
Tobias Monschein ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Clinical Practice ◽  
Pilot Study ◽  
Mobile Health ◽  
Patient Reported Outcomes ◽  
Smartphone Application ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Individual

BACKGROUND Treatment and monitoring decisions in people with multiple sclerosis (MS) are based commonly on clinician reported outcomes (CROs). These reflect physical and radiological disease activity and are the most relevant endpoints in clinical trials. Over the past few years, the number of studies evaluating so-called patient reported outcomes (PROs) has been increasing. PROs are reports from patients concerning their own health perception. They are typically obtained by means of questionnaires and aim to quantify symptoms such as fatigue, depression or sexual dysfunction. The emergence of PROs has made a tremendous contribution to understanding the individual impact of disease in people with MS (pwMS) and their health-related quality of life. However, the assessment of PROs consumes resources of time and personnel. Thus, useful ways to conveniently introduce PROs into clinical practice are needed. OBJECTIVE To provide a rationale and pilot study protocol for a mobile health solution named “haMSter” that allows for remote monitoring of PROs in pwMS. METHODS The core function of haMSter is to provide three scientifically validated PROs relevant to MS for patients to fill out at home once a month. Thereby, longitudinal and remote documentation of PROs is enabled. A scoring algorithm graphically plots PRO scores over time and makes them available at the next visit. RESULTS A pilot study is currently ongoing and will evaluate adherence to this mobile-health (m-health) solution in 50 patients using haMSter over a period of six months. CONCLUSIONS haMSter is a novel m-health based solution to modern PRO research which may constitute a first step in achieving to integrate PROs in clinical practice. This allows for a more problem-oriented approach in monitoring visits that addresses the patient’s needs and, ultimately, saves time. CLINICALTRIAL ClinicalTrials.gov Identifier: NCT04555863.

Assessing Quality of Life in Patients with Multiple Sclerosis

2010 ◽  
Vol 12 (1) ◽  
pp. 34-41 ◽  
Author(s):  
Daniel S. Bandari ◽  
Timothy L. Vollmer ◽  
Bhupendra O. Khatri ◽  
Tuula Tyry
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Quality Of Life Inventory ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Patient Reported Measures ◽  
The Relationship ◽  
Life Inventory

Health-related quality of life (HRQOL) is an important consideration for patients with a chronic disease such as multiple sclerosis (MS). We conducted a review of published articles and conference proceedings to evaluate the use of patient-reported measures of HRQOL in MS. A variety of HRQOL measures are used in MS research and clinical practice settings. Generic HRQOL instruments lack domains considered important to MS patients and are subject to significant floor and ceiling effects when used in MS patients. MS-specific instruments, including the Multiple Sclerosis Quality of Life–54, Multiple Sclerosis Quality of Life Inventory, and Multiple Sclerosis International Quality of Life, offer both advantages and limitations in assessing HRQOL in MS patients. Only a few reports on the use of these instruments to assess HRQOL outcomes in clinical studies have been published. MS-specific instruments hold the most promise in the assessment of the relationship between disease-modifying drug treatment and HRQOL in MS patients. Further research is needed to better understand the limitations of MS-specific HRQOL instruments in clinical research and practice. Future MS drug therapy trials should include the use of MS-specific instruments to prospectively assess HRQOL as a study outcome.

scholarly journals Serum neurofilament levels and patient‐reported outcomes in multiple sclerosis

2021 ◽  
Author(s):  
Kristin Galetta ◽  
Chinmay Deshpande ◽  
Brian C. Healy ◽  
Bonnie Glanz ◽  
Marina Ziehn ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Patient Reported Outcomes ◽  
Patient Reported

scholarly journals POS0830 FACTORS INFLUENCING PATIENT-REPORTED OUTCOMES IN ANCA-ASSOCIATED VASCULITIS

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 668.2-669
Author(s):  
S. Monti ◽  
P. Delvino ◽  
C. Klersy ◽  
G. Coppa ◽  
A. Milanesi ◽  
...  
Keyword(s):  
Disease Activity ◽  
Global Assessment ◽  
Patient Reported Outcomes ◽  
Granulomatosis With Polyangiitis ◽  
Disease Duration ◽  
Eosinophilic Granulomatosis With Polyangiitis ◽  
Anca Associated Vasculitis ◽  
Organ Systems ◽  
Damage Accrual ◽  
Patient Reported

Background:Patient-reported outcomes (PROs) are currently poorly integrated in the clinical evaluation of disease activity in patients with ANCA-associated vasculitis (AAV).Objectives:To assess the distribution of the Patient Global Assessment (PtGA) in patients with AAV in stable remission, and to identify correlates of PtGA; to assess the discordance between PtGA score and PhGA.Methods:Patients with a diagnosis of AAV [eosinophilic granulomatosis with polyangiitis, granulomatosis with polyangiitis, microscopic polyangiitis] in stable, complete remission (defined by a BVAS=0) and with a Physician Global Assessment (PhGA)=0 were included. A questionnaire including several aspects of disease captured by PROs was collected. PtGA on a 0-100 mm visual analogue scale (VAS) was assessed, with higher scores representing higher/worse levels of disease activity. Similarly, VAS for pain, chronic damage according to the patient’s opinion, general health (GH), fatigue, and sleep quality were collected. The worst symptom in the patient’s opinion affecting the overall assessment of disease activity was recorded. The Cragg Hurdle model was used to assess the predictors of PtGA.Results:65 patients were included, female 57%, mean age 61±12 years. Mean disease duration at enrollment was 8±6 years. Mean vasculitis damage index (VDI) was 4.4 ±2.3, with 45% of patients having a VDI ≥ 5. Despite having been classified as being in remission, PtGA was elevated in 37% of patients. We explored several correlates of PtGA. Higher degree of damage accrual (VDI) did not influence the patient’s evaluation of current disease activity. Similarly, we did not identify a correlation between older age, educational level, number of organ-systems involved, number of comorbidities, the number of previous major or minor relapses, higher disease duration, nor the type of AAV diagnosis (figure 1, panel A). Only sex significantly correlated with PtGA scores: 19 (51%) of female patients reported an elevated PtGA compared to only 5 (18%) of male (p=0.009). PtGA resulted to be significantly correlated with other (mostly modifiable) PROs including VAS pain, perception of the level of chronic damage accrual, GH, and fatigue (figure 1, panel B). The agreement between patients’ and physicians’ assessments of disease activity was 63%. Patients reported pain, followed by chronic respiratory symptoms to be the worst-experienced ongoing manifestations affecting their evaluation of disease activity.Conclusion:A significant proportion of patients with AAV considered to be in remission by the physician still declares to have persistent aspects of uncontrolled disease. PtGA is significantly influenced by persistent pain and fatigue, which warrant better assessment in the future.Disclosure of Interests:None declared

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