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Muthu S, Vadranapu S. Variations in quantifying patient reported outcome measures to estimate treatment effect. World J Methodol 2025; 15:97078. [DOI: 10.5662/wjm.v15.i2.97078] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/22/2024] [Revised: 10/13/2024] [Accepted: 11/06/2024] [Indexed: 11/27/2024] Open
Abstract
In the practice of healthcare, patient-reported outcomes (PROs) and PRO measures (PROMs) are used as an attempt to observe the changes in complex clinical situations. They guide us in making decisions based on the evidence regarding patient care by recording the change in outcomes for a particular treatment to a given condition and finally to understand whether a patient will benefit from a particular treatment and to quantify the treatment effect. For any PROM to be usable in health care, we need it to be reliable, encapsulating the points of interest with the potential to detect any real change. Using structured outcome measures routinely in clinical practice helps the physician to understand the functional limitation of a patient that would otherwise not be clear in an office interview, and this allows the physician and patient to have a meaningful conversation as well as a customized plan for each patient. Having mentioned the rationale and the benefits of PROMs, understanding the quantification process is crucial before embarking on management decisions. A better interpretation of change needs to identify the treatment effect based on clinical relevance for a given condition. There are a multiple set of measurement indices to serve this effect and most of them are used interchangeably without clear demarcation on their differences. This article details the various quantification metrics used to evaluate the treatment effect using PROMs, their limitations and the scope of usage and implementation in clinical practice.
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Affiliation(s)
- Sathish Muthu
- Department of Orthopaedics, Orthopaedic Research Group, Coimbatore 641045, Tamil Nadu, India
- Department of Orthopaedics, Government Medical College, Karur 639004, Tamil Nadu, India
- Department of Biotechnology, Karpagam Academy of Higher Education, Coimbatore 641021, Tamil Nadu, India
| | - Srujun Vadranapu
- Department of Orthopaedics, Royal Care Super Speciality Hospital, Coimbatore 641062, Tamil Nadu, India
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Bhandari V, Abraham A, Lovblom LE, Bril V. Single simple question in axonal polyneuropathy. Muscle Nerve 2024; 70:824-830. [PMID: 39114923 DOI: 10.1002/mus.28209] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/11/2023] [Revised: 07/08/2024] [Accepted: 07/14/2024] [Indexed: 10/12/2024]
Abstract
INTRODUCTION/AIMS The single simple question (SSQ), "What percentage of normal (0%-100%) do you feel regarding your disease?" has proven feasible and valid in assessing myasthenia gravis and a heterogeneous spectrum of neuropathies. This study explores the utility of the SSQ in axonal polyneuropathies (PNPs), encompassing diabetic neuropathy, and evaluates its responsiveness to scale changes. METHODS A retrospective chart review of 150 patients with axonal PNP responding to the SSQ was performed. Patients underwent clinical and electrophysiological evaluations, and were evaluated by clinical and disability scales, including the Medical Research Council sum score, modified Toronto Clinical Neuropathy score (mTCNS), Overall Neuropathy Limitation Scale, and Rasch-built Overall Disability Scale (RODS). RESULTS The SSQ total scores correlated moderately with both the RODS score (r = .59, p < .001) and the mTCNS symptom score (r = -.43, p < .001), maintaining significance after adjustment for multiple comparisons. Longitudinally, after adjusting for multiple comparisons, the change in mTCNS symptom score retained statistical significance (adjusted p = .048). The SSQ did not show any association with electrophysiological parameters or sensory symptoms, other than a lower score in those with pain (100% with SSQ <40%, 85% with SSQ 40%-70%, and 34% with SSQ >70%). DISCUSSION The SSQ is a feasible, valid scale that may be utilized to assess and follow patients with length-dependent axonal PNPs. Given that the SSQ is not strongly associated with clinical and disability scales or electrophysiological findings, additional investigations are required for a comprehensive assessment of PNP.
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Affiliation(s)
- Vinaya Bhandari
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, Toronto General Hospital, University Health Network, University of Toronto, Toronto, Ontario, Canada
| | - Alon Abraham
- Neuromuscular Diseases Unit of the Department of Neurology, Tel Aviv Sourasky Medical Center, Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel
| | - Leif E Lovblom
- Department of Biostatistics, University Health Network, Toronto, Ontario, Canada
| | - Vera Bril
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, Toronto General Hospital, University Health Network, University of Toronto, Toronto, Ontario, Canada
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Bhandari V, Sivadasan A, Barnett-Tapia C, Katzberg H, Bril V. Using jitter analysis with concentric needle electrodes to assess disease status and treatment responses in myasthenia gravis. Clin Neurophysiol Pract 2024; 9:227-232. [PMID: 39224193 PMCID: PMC11366830 DOI: 10.1016/j.cnp.2024.06.004] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/25/2023] [Revised: 05/28/2024] [Accepted: 06/05/2024] [Indexed: 09/04/2024] Open
Abstract
Objective This study assesses the utility of jitter analysis with concentric needles to evaluate disease severity in myasthenia gravis (MG), correlate changes in jitter with clinical status as well as identify reasons for any discordance. Methods We performed a retrospective chart review of 82 MG patients and extracted data on demographics, MG subtype, antibody status, clinical scales, electrophysiology, and interventions at baseline and follow-up. Results Baseline MGII scores correlated with jitter (r = 0.25, p = 0.024) and abnormal pairs (r = 0.24, p = 0.03). After 28 months, MGII scores correlated with jitter (r = 0.31, p = 0.006), abnormal pairs (r = 0.29, p = 0.009), and pairs with blocks (r = 0.35, p = 0.001). Changes in MGII scores correlated with changes in jitter (r = 0.35, p = 0.002), abnormal pairs (r = 0.27, p = 0.014), and pairs with blocks (r = 0.36, p = 0.001). Conclusions Concentric needle jitter analysis may have the potential to evaluate baseline and sequential disease severity in MG. Significance This study highlights the potential for improved MG patient care through precise assessment and management using concentric needle jitter analysis to improve the accuracy of MG diagnosis and monitoring of disease activity.
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Affiliation(s)
- Vinaya Bhandari
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, Toronto General Hospital, University Health Network, University of Toronto, Toronto, ON, Canada
| | - Ajith Sivadasan
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, Toronto General Hospital, University Health Network, University of Toronto, Toronto, ON, Canada
| | - Carolina Barnett-Tapia
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, Toronto General Hospital, University Health Network, University of Toronto, Toronto, ON, Canada
| | - Hans Katzberg
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, Toronto General Hospital, University Health Network, University of Toronto, Toronto, ON, Canada
| | - Vera Bril
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, Toronto General Hospital, University Health Network, University of Toronto, Toronto, ON, Canada
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Meisel A, Saccà F, Spillane J, Vissing J, the MG Collegium Sub‐committee. Expert consensus recommendations for improving and standardising the assessment of patients with generalised myasthenia gravis. Eur J Neurol 2024; 31:e16280. [PMID: 38523419 PMCID: PMC11236001 DOI: 10.1111/ene.16280] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/02/2023] [Revised: 01/26/2024] [Accepted: 03/05/2024] [Indexed: 03/26/2024]
Abstract
BACKGROUND Regular and consistent disease assessment could provide a clearer picture of burden in generalised myasthenia gravis (gMG) and improve patient care; however, the use of assessment tools in practice lacks standardisation. This modified Delphi approach was taken to review current evidence on assessment tool use in gMG and develop expert-derived consensus recommendations for good practice. METHODS A European expert panel of 15 experienced gMG neurologists contributed to development of this consensus, four of whom formed a lead Sub-committee. The PICO (Population, Intervention, Control, Outcomes) framework was used to define six clinical questions on gMG assessment tools, a systematic literature review was conducted, and evidence-based statements were developed. According to a modified Delphi voting process, consensus was reached when ≥70% of the experts rated agreement with a statement as ≥8 on a scale of 1-10. RESULTS Eighteen expert- and evidence-based consensus statements based on six themes were developed. Key recommendations include: consistent use of the Myasthenia Gravis Activities of Daily Living score (MG-ADL) across clinical settings, followed by a simple question (e.g., Patient Acceptable Symptom State [PASS]) or scale to determine patient satisfaction in clinical practice; use of a Quantitative Myasthenia Gravis [QMG] or quality of life [QoL] assessment when the MG-ADL indicates disease worsening; and consideration of symptom state to determine the timing and frequency of recommended assessments. Expert panel consensus was reached on all 18 statements after two voting rounds. CONCLUSIONS This process provided evidence- and expert consensus-based recommendations for the use of objective and subjective assessment tools across gMG research and care to improve management and outcomes for patients.
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Affiliation(s)
- Andreas Meisel
- Department of Neurology with Experimental NeurologyNeuroscience Clinical Research CenterCharité Universitätsmedizin BerlinBerlinGermany
| | - Francesco Saccà
- GENESIS Department, Federico II University of NaplesNaplesItaly
| | - Jennifer Spillane
- National Hospital for Neurology and NeurosurgeryUCLH NHS Foundation TrustLondonUK
| | - John Vissing
- Copenhagen Neuromuscular CenterCopenhagen University Hospital RigshospitaletCopenhagenDenmark
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Martinez‐Harms R, Barnett C, Alcantara M, Bril V. Clinical characteristics and treatment outcomes in patients with double-seronegative myasthenia gravis. Eur J Neurol 2024; 31:e16022. [PMID: 37531447 PMCID: PMC11235949 DOI: 10.1111/ene.16022] [Citation(s) in RCA: 3] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/17/2023] [Revised: 07/07/2023] [Accepted: 07/30/2023] [Indexed: 08/04/2023]
Abstract
BACKGROUND AND PURPOSE Double-seronegative myasthenia gravis (dSNMG) is defined as myasthenia gravis (MG) without detectable or low affinity antibodies to acetylcholine receptor (AChR) and muscle-specific kinase (MuSK). There are limited data on detailed clinical features and outcomes after treatment in dSNMG patients. The aim was to describe the clinical characteristics and outcomes in dSNMG patients based on MG scales. METHODS A retrospective study was performed of patients diagnosed with MG who had negative AChR or MuSK antibodies and they were compared with an AChR-positive MG cohort. Correlations were made with data from the first and last clinic visits, between demographics, clinical characteristics, treatment and disease severity, based on the Myasthenia Gravis Foundation of America category, Myasthenia Gravis Impairment Index (MGII), Patient Acceptable Symptom State and simple single question (SSQ). RESULTS Eighty patients met the inclusion criteria for dSNMG. The baseline MGII and SSQ scores in the dSNMG cohort showed no significant differences from the AChR group (p = 0.94 and p = 0.46). The dSNMG cohort MGII and SSQ scores improved significantly at the last clinical evaluation (p = 0.001 and p = 0.047). The MGII improvement in the AChR cohort was significantly better (p = 0.003). CONCLUSIONS The initial severity of dSNMG based on clinical scores is similar to antibody-positive MG patients. There is significant clinical improvement in dSNMG patients after therapy, measured in the last clinical evaluation. This supports an immune pathophysiology of many dSNMG patients.
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Affiliation(s)
- Rodrigo Martinez‐Harms
- Ellen and Martin Prosserman Centre for Neuromuscular DiseasesToronto General HospitalTorontoOntarioCanada
- University Health NetworkUniversity of TorontoTorontoOntarioCanada
| | - Carolina Barnett
- Ellen and Martin Prosserman Centre for Neuromuscular DiseasesToronto General HospitalTorontoOntarioCanada
- University Health NetworkUniversity of TorontoTorontoOntarioCanada
| | - Monica Alcantara
- Ellen and Martin Prosserman Centre for Neuromuscular DiseasesToronto General HospitalTorontoOntarioCanada
- University Health NetworkUniversity of TorontoTorontoOntarioCanada
| | - Vera Bril
- Ellen and Martin Prosserman Centre for Neuromuscular DiseasesToronto General HospitalTorontoOntarioCanada
- University Health NetworkUniversity of TorontoTorontoOntarioCanada
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Martinez-Harms R, Barnett C, Bril V. Time to achieve a patient acceptable symptom state in myasthenia gravis. Front Neurol 2023; 14:1187189. [PMID: 37396757 PMCID: PMC10313102 DOI: 10.3389/fneur.2023.1187189] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/15/2023] [Accepted: 05/25/2023] [Indexed: 07/04/2023] Open
Abstract
Introduction The patient acceptable symptom state (PASS) is a reliable way to characterize a patient's satisfaction with their disease state in a "Yes"/"No" dichotomous manner. There is limited data on the time required to reach an acceptable state in Myasthenia Gravis (MG). We aimed to determine the time to reach a first PASS "Yes" response in patients at MG diagnosis and a PASS "No" status, and also to determine the influence of various factors on this time. Methods We performed a retrospective study of patients diagnosed with myasthenia gravis who had an initial PASS "No" response and defined the time to reach a first PASS "Yes" by Kaplan-Meier analysis. Correlations were made between demographics, clinical characteristics, treatment and disease severity, using the Myasthenia Gravis Impairment Index (MGII) and Simple Single Question (SSQ). Results In 86 patients meeting inclusion criteria, the median time to PASS "Yes" was 15 months (95% CI 11-18). Of 67 MG patients who achieved PASS "Yes," 61 (91%), achieved it by 25 months after diagnosis. Patients who required only prednisone therapy achieved PASS "Yes" in a shorter time with a median of 5.5 months (p = 0.01). Very-late-onset MG patients reached PASS "Yes" status in a shorter time (HR = 1.99, 95% CI 0.26-2.63; p = 0.001). Discussion Most patients reached PASS "Yes" by 25 months after diagnosis. MG patients who only required prednisone and those with very-late-onset MG reach PASS "Yes" in shorter intervals.
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Affiliation(s)
- Rodrigo Martinez-Harms
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, Toronto General Hospital, Toronto, ON, Canada
- Department of Medicine, University Health Network, University of Toronto, Toronto, ON, Canada
| | - Carolina Barnett
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, Toronto General Hospital, Toronto, ON, Canada
- Department of Medicine, University Health Network, University of Toronto, Toronto, ON, Canada
| | - Vera Bril
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, Toronto General Hospital, Toronto, ON, Canada
- Department of Medicine, University Health Network, University of Toronto, Toronto, ON, Canada
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Gilhus NE, Hovland SIB. User Involvement in Myasthenia Gravis Research. Front Neurol 2022; 13:839769. [PMID: 35720063 PMCID: PMC9202346 DOI: 10.3389/fneur.2022.839769] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/20/2021] [Accepted: 04/26/2022] [Indexed: 11/18/2022] Open
Affiliation(s)
- Nils Erik Gilhus
- Department of Clinical Medicine, University of Bergen, Bergen, Norway
- Department of Neurology, Haukeland University Hospital, Bergen, Norway
- *Correspondence: Nils Erik Gilhus
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Causes of symptom dissatisfaction in patients with generalized myasthenia gravis. J Neurol 2021; 269:3086-3093. [PMID: 34806129 DOI: 10.1007/s00415-021-10902-1] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/06/2021] [Revised: 11/08/2021] [Accepted: 11/10/2021] [Indexed: 10/19/2022]
Abstract
BACKGROUND Patient-centered assessments have attracted increasing attention in the last decade in clinics and research. The purpose of this study was to examine the association between patients' satisfaction with symptoms and several disease-specific and generic outcome measures in 100 patients with generalized myasthenia gravis (gMG). METHODS In this cross-sectional study, patients with gMG followed at the Copenhagen Neuromuscular Center from October 2019 to June 2020 participated in one test. The patients completed commonly used MG-specific outcome measures and generic questionnaires for depression (Major Depression Inventory), comorbidities (Charlson Comorbidity Index), fatigue (Multidimensional Fatigue Inventory), overall health state (EQ-5D-3L), and satisfaction with MG treatment. The analyses were anchored in the Patient Acceptable Symptom State (PASS). RESULTS N = 190 patients were screened for the study, and 100 patients were included. One-third of the patients reported dissatisfaction (negative PASS status) with the current symptom state. Increasing MG symptoms, fatigue, depression, low MG-related quality of life, and shorter disease duration were associated with negative PASS status. Age, sex, BMI, MG treatment, and comorbidity did not influence PASS status. CONCLUSIONS This study shows that dissatisfaction with the current symptom level is high in patients with gMG and that dissatisfaction is associated with disease severity, disease length, depression, fatigue, and lower MG-related quality of life. The results emphasize the importance of a patient-centered approach to MG treatment to optimize patient satisfaction. The PASS question was useful in this study to investigate the causes of symptom dissatisfaction in gMG.
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Gilhus NE, Verschuuren JJGM, Hovland SIB, Simmonds H, Groot F, Palace J. Myasthenia gravis: do not forget the patient perspective. Neuromuscul Disord 2021; 31:S0960-8966(21)00583-6. [PMID: 34635387 DOI: 10.1016/j.nmd.2021.07.396] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/17/2021] [Revised: 07/09/2021] [Accepted: 07/20/2021] [Indexed: 12/19/2022]
Affiliation(s)
- Nils Erik Gilhus
- Department of Clinical Medicine, University of Bergen, Norway; Department of Neurology, Haukeland University Hospital, Bergen, Norway.
| | | | | | - Huw Simmonds
- Myaware, College Business Centre, Derby, England
| | - Floor Groot
- Dutch Neuromuscular disease Association, Baarn, The Netherlands
| | - Jacqueline Palace
- Nuffield Department of Clinical Neurosciences, University of Oxford, Hospitals Trust, Oxford, England
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Atkins C, Barnett C. People With Myasthenia Are Getting Better, but Are They Doing Well? Neurology 2021; 97:663-664. [PMID: 34376510 DOI: 10.1212/wnl.0000000000012617] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/27/2021] [Accepted: 07/20/2021] [Indexed: 11/15/2022] Open
Affiliation(s)
- Chloë Atkins
- From the PROUD Project on Employment and Disability (C.A.), Department of Political Science, Scarborough College, and Institute of Health Policy, Management and Evaluation (C.B.), Dalla Lana School of Public Health, University of Toronto; Living With MG for 30+ Years (EOMG, Diagnostic Delay) (C.A.); and Ellen and Martin Prosseman Centre for Neuromuscular Disease (C.B.), University Health Network, Toronto, Ontario, Canada
| | - Carolina Barnett
- From the PROUD Project on Employment and Disability (C.A.), Department of Political Science, Scarborough College, and Institute of Health Policy, Management and Evaluation (C.B.), Dalla Lana School of Public Health, University of Toronto; Living With MG for 30+ Years (EOMG, Diagnostic Delay) (C.A.); and Ellen and Martin Prosseman Centre for Neuromuscular Disease (C.B.), University Health Network, Toronto, Ontario, Canada.
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Menon D, Alnajjar S, Barnett C, Vijayan J, Katzberg H, Fathi D, Alcantara M, Bril V. Telephone consultation for myasthenia gravis care during the COVID-19 pandemic: Assessment of a novel virtual myasthenia gravis index. Muscle Nerve 2021; 63:831-836. [PMID: 33792967 PMCID: PMC8251129 DOI: 10.1002/mus.27243] [Citation(s) in RCA: 8] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/30/2020] [Revised: 03/22/2021] [Accepted: 03/28/2021] [Indexed: 12/14/2022]
Abstract
INTRODUCTION/AIMS The aim of the study was to determine the association between the virtual Myasthenia Gravis Impairment Index (vMGII) with other patient-reported outcomes (PROs) of myasthenia gravis (MG) and its usefulness in telephone consultations with MG patients. METHODS This was a retrospective case series in which vMGII score along with virtual Single Simple Question (vSSQ), virtual Patient-Acceptable Symptom State PASS (vPASS) response, and patient disease status based on Myathenia Gravis Foundation of America postintervention status were collected during telephone consultation along with the MGII, SSQ, and PASS responses during the preceding in-person clinic visits. RESULTS In 214 patients, the mean difference of vMGII between the vPASS "Yes" and "No" groups was -14.2 ± 1.4 (95% confidence interval, -16.9 to -11.3; P < .001) with mean vMGII for vPASS "Yes" group being 6.4 ± 7.7 and vPASS "No" being 20.5 ± 11.5. A vMGII of 11.5 or higher predicted vPASS "yes" response with a sensitivity of 78.7% and specificity of 81.4%. A strong negative correlation was found between the vMGII and vSSQ (r = -.667; P < .001). The mean vMGII was 0.48 ± 1.42 for patients in remission, and 9.31 ± 10.93 for improved, 9.32 ± 8.79 for stable, and 22.58 ± 14.04 for worsened groups (P < .001). These associations were the same as those obtained during the preceding in-person clinic visit and the direction of change in MGII scores also indicated change in disease status. DISCUSSION vMGII is an effective measure to assess an MG patient's disease status in telephone consultations and relates well with other PRO measures. The vMGII remains reliable for assessing MG disease status even with removal of the physical examination component.
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Affiliation(s)
- Deepak Menon
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, University Health NetworkUniversity of TorontoTorontoOntarioCanada
| | - Sara Alnajjar
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, University Health NetworkUniversity of TorontoTorontoOntarioCanada
| | - Carolina Barnett
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, University Health NetworkUniversity of TorontoTorontoOntarioCanada
| | - Joy Vijayan
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, University Health NetworkUniversity of TorontoTorontoOntarioCanada
| | - Hans Katzberg
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, University Health NetworkUniversity of TorontoTorontoOntarioCanada
| | - Davood Fathi
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, University Health NetworkUniversity of TorontoTorontoOntarioCanada
| | - Monica Alcantara
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, University Health NetworkUniversity of TorontoTorontoOntarioCanada
| | - Vera Bril
- Ellen & Martin Prosserman Centre for Neuromuscular Diseases, University Health NetworkUniversity of TorontoTorontoOntarioCanada
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