ArticleNeurology2015
Patient-Reported Impact of Symptoms in Myotonic Dystrophy Type 2 (PRISM-2).
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Article in Neurology, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 papers, 1 of them a synthesis that pooled it.
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30citing papers in PubMed, 1 pooled it
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Who cites it
30 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A systematic review of the frequency of sleep evaluations, sleep disorders, and treatments among individuals with muscular dystrophy.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2026Pooled it
- Exploring the impact of myotonia on daily functioning in myotonic dystrophy: a patient-reported survey.BMC neurology · 2026Article
- Development and Validation of the Inclusion Body Myositis-Health Index: A Disease-Specific Patient-Reported Outcome Measure for Use in Clinical Trials and Drug-Labeling Claims.Journal of clinical neuromuscular disease · 2026Article
- Sexual health in neuromuscular diseases: Neglected challenges revealed by a scoping review.Journal of neuromuscular diseases · 2026Review
- A 12-Week Strength Training Improves Mitochondrial Respiration, HActa physiologica (Oxford, England) · 2025Article
- Patient- and Caregiver-Reported Impact of Symptoms in Alzheimer Disease, Mild Cognitive Impairment, and Dementia.Neurology. Clinical practice · 2025Article
- The Limb Girdle Muscular Dystrophy Health Index (LGMD-HI).Neuromuscular disorders : NMD · 2024Article
- Patient-reported impact of symptoms in adrenoleukodystrophy (PRISM-ALD).Orphanet journal of rare diseases · 2024Article
- Characterization of the neuropathic pain component contributing to myalgia in patients with myotonic dystrophy type 1 and 2.Frontiers in neurology · 2024Article
- Patient-Reported Impact of Symptoms in Spinal and Bulbar Muscular Atrophy.Neurology. Clinical practice · 2023Article
- Patient-reported impact of symptoms in lung cancer (PRISM-LC).Translational lung cancer research · 2023Article
- Work participation in adults with rare genetic diseases - a scoping review.BMC public health · 2023Article
- Patient-Reported Impact of Symptoms in Friedreich Ataxia.Neurology · 2023Article
- Patient reported impact of symptoms in amyotrophic lateral sclerosis (PRISM-ALS): A national, cross-sectional study.EClinicalMedicine · 2023Article
- A Greek National Cross-Sectional Study on Myotonic Dystrophies.International journal of molecular sciences · 2022Article
- Patient reported quality of life in limb girdle muscular dystrophy.Neuromuscular disorders : NMD · 2022Article
- Transcriptome alterations in myotonic dystrophy frontal cortex.Cell reports · 2021Article
- Excessive daytime sleepiness and fatigue in neurological disorders.Sleep & breathing = Schlaf & Atmung · 2020Review
- Patient reported outcome measures (PROMs) in amyotrophic lateral sclerosis.Journal of neurology · 2020Article
- A role for cannabinoids in the treatment of myotonia? Report of compassionate use in a small cohort of patients.Journal of neurology · 2020Article
Corrections and comments
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Authors and funding
15 authors.
Chad HeatwoleFrom the Departments of Neurology (C.H., J.D., N.D., J.E.H., E.L., W.M., M.P.M., C.T., R.T.M.) and Biostatistics and Computational Biology (M.P.M.), and James P. Wilmot Cancer Institute (C.Q.), University of Rochester Medical Center, Rochester, NY; University of Utah (N.J.), Salt Lake City; Northwestern University Feinberg School of Medicine (R.B., N.R., D.V.), Chicago, IL; David Geffen School of Medicine (B.G.V.), UCLA Medical Center, Los Angeles; and Greater Los Angeles VA HealthCare System (B.G.V.), CA. Chad_Heatwole@urmc.rochester.edu.
Nicholas JohnsonFrom the Departments of Neurology (C.H., J.D., N.D., J.E.H., E.L., W.M., M.P.M., C.T., R.T.M.) and Biostatistics and Computational Biology (M.P.M.), and James P. Wilmot Cancer Institute (C.Q.), University of Rochester Medical Center, Rochester, NY; University of Utah (N.J.), Salt Lake City; Northwestern University Feinberg School of Medicine (R.B., N.R., D.V.), Chicago, IL; David Geffen School of Medicine (B.G.V.), UCLA Medical Center, Los Angeles; and Greater Los Angeles VA HealthCare System (B.G.V.), CA.
Rita BodeFrom the Departments of Neurology (C.H., J.D., N.D., J.E.H., E.L., W.M., M.P.M., C.T., R.T.M.) and Biostatistics and Computational Biology (M.P.M.), and James P. Wilmot Cancer Institute (C.Q.), University of Rochester Medical Center, Rochester, NY; University of Utah (N.J.), Salt Lake City; Northwestern University Feinberg School of Medicine (R.B., N.R., D.V.), Chicago, IL; David Geffen School of Medicine (B.G.V.), UCLA Medical Center, Los Angeles; and Greater Los Angeles VA HealthCare System (B.G.V.), CA.
Jeanne DekdebrunFrom the Departments of Neurology (C.H., J.D., N.D., J.E.H., E.L., W.M., M.P.M., C.T., R.T.M.) and Biostatistics and Computational Biology (M.P.M.), and James P. Wilmot Cancer Institute (C.Q.), University of Rochester Medical Center, Rochester, NY; University of Utah (N.J.), Salt Lake City; Northwestern University Feinberg School of Medicine (R.B., N.R., D.V.), Chicago, IL; David Geffen School of Medicine (B.G.V.), UCLA Medical Center, Los Angeles; and Greater Los Angeles VA HealthCare System (B.G.V.), CA.
Nuran DilekFrom the Departments of Neurology (C.H., J.D., N.D., J.E.H., E.L., W.M., M.P.M., C.T., R.T.M.) and Biostatistics and Computational Biology (M.P.M.), and James P. Wilmot Cancer Institute (C.Q.), University of Rochester Medical Center, Rochester, NY; University of Utah (N.J.), Salt Lake City; Northwestern University Feinberg School of Medicine (R.B., N.R., D.V.), Chicago, IL; David Geffen School of Medicine (B.G.V.), UCLA Medical Center, Los Angeles; and Greater Los Angeles VA HealthCare System (B.G.V.), CA.
James E HilbertFrom the Departments of Neurology (C.H., J.D., N.D., J.E.H., E.L., W.M., M.P.M., C.T., R.T.M.) and Biostatistics and Computational Biology (M.P.M.), and James P. Wilmot Cancer Institute (C.Q.), University of Rochester Medical Center, Rochester, NY; University of Utah (N.J.), Salt Lake City; Northwestern University Feinberg School of Medicine (R.B., N.R., D.V.), Chicago, IL; David Geffen School of Medicine (B.G.V.), UCLA Medical Center, Los Angeles; and Greater Los Angeles VA HealthCare System (B.G.V.), CA.
Elizabeth LuebbeFrom the Departments of Neurology (C.H., J.D., N.D., J.E.H., E.L., W.M., M.P.M., C.T., R.T.M.) and Biostatistics and Computational Biology (M.P.M.), and James P. Wilmot Cancer Institute (C.Q.), University of Rochester Medical Center, Rochester, NY; University of Utah (N.J.), Salt Lake City; Northwestern University Feinberg School of Medicine (R.B., N.R., D.V.), Chicago, IL; David Geffen School of Medicine (B.G.V.), UCLA Medical Center, Los Angeles; and Greater Los Angeles VA HealthCare System (B.G.V.), CA.
William MartensFrom the Departments of Neurology (C.H., J.D., N.D., J.E.H., E.L., W.M., M.P.M., C.T., R.T.M.) and Biostatistics and Computational Biology (M.P.M.), and James P. Wilmot Cancer Institute (C.Q.), University of Rochester Medical Center, Rochester, NY; University of Utah (N.J.), Salt Lake City; Northwestern University Feinberg School of Medicine (R.B., N.R., D.V.), Chicago, IL; David Geffen School of Medicine (B.G.V.), UCLA Medical Center, Los Angeles; and Greater Los Angeles VA HealthCare System (B.G.V.), CA.
Michael P McDermottFrom the Departments of Neurology (C.H., J.D., N.D., J.E.H., E.L., W.M., M.P.M., C.T., R.T.M.) and Biostatistics and Computational Biology (M.P.M.), and James P. Wilmot Cancer Institute (C.Q.), University of Rochester Medical Center, Rochester, NY; University of Utah (N.J.), Salt Lake City; Northwestern University Feinberg School of Medicine (R.B., N.R., D.V.), Chicago, IL; David Geffen School of Medicine (B.G.V.), UCLA Medical Center, Los Angeles; and Greater Los Angeles VA HealthCare System (B.G.V.), CA.
Christine QuinnFrom the Departments of Neurology (C.H., J.D., N.D., J.E.H., E.L., W.M., M.P.M., C.T., R.T.M.) and Biostatistics and Computational Biology (M.P.M.), and James P. Wilmot Cancer Institute (C.Q.), University of Rochester Medical Center, Rochester, NY; University of Utah (N.J.), Salt Lake City; Northwestern University Feinberg School of Medicine (R.B., N.R., D.V.), Chicago, IL; David Geffen School of Medicine (B.G.V.), UCLA Medical Center, Los Angeles; and Greater Los Angeles VA HealthCare System (B.G.V.), CA.
Nan RothrockFrom the Departments of Neurology (C.H., J.D., N.D., J.E.H., E.L., W.M., M.P.M., C.T., R.T.M.) and Biostatistics and Computational Biology (M.P.M.), and James P. Wilmot Cancer Institute (C.Q.), University of Rochester Medical Center, Rochester, NY; University of Utah (N.J.), Salt Lake City; Northwestern University Feinberg School of Medicine (R.B., N.R., D.V.), Chicago, IL; David Geffen School of Medicine (B.G.V.), UCLA Medical Center, Los Angeles; and Greater Los Angeles VA HealthCare System (B.G.V.), CA.
Charles ThorntonFrom the Departments of Neurology (C.H., J.D., N.D., J.E.H., E.L., W.M., M.P.M., C.T., R.T.M.) and Biostatistics and Computational Biology (M.P.M.), and James P. Wilmot Cancer Institute (C.Q.), University of Rochester Medical Center, Rochester, NY; University of Utah (N.J.), Salt Lake City; Northwestern University Feinberg School of Medicine (R.B., N.R., D.V.), Chicago, IL; David Geffen School of Medicine (B.G.V.), UCLA Medical Center, Los Angeles; and Greater Los Angeles VA HealthCare System (B.G.V.), CA.
Barbara G VickreyFrom the Departments of Neurology (C.H., J.D., N.D., J.E.H., E.L., W.M., M.P.M., C.T., R.T.M.) and Biostatistics and Computational Biology (M.P.M.), and James P. Wilmot Cancer Institute (C.Q.), University of Rochester Medical Center, Rochester, NY; University of Utah (N.J.), Salt Lake City; Northwestern University Feinberg School of Medicine (R.B., N.R., D.V.), Chicago, IL; David Geffen School of Medicine (B.G.V.), UCLA Medical Center, Los Angeles; and Greater Los Angeles VA HealthCare System (B.G.V.), CA.
David VictorsonFrom the Departments of Neurology (C.H., J.D., N.D., J.E.H., E.L., W.M., M.P.M., C.T., R.T.M.) and Biostatistics and Computational Biology (M.P.M.), and James P. Wilmot Cancer Institute (C.Q.), University of Rochester Medical Center, Rochester, NY; University of Utah (N.J.), Salt Lake City; Northwestern University Feinberg School of Medicine (R.B., N.R., D.V.), Chicago, IL; David Geffen School of Medicine (B.G.V.), UCLA Medical Center, Los Angeles; and Greater Los Angeles VA HealthCare System (B.G.V.), CA.
Richard T MoxleyFrom the Departments of Neurology (C.H., J.D., N.D., J.E.H., E.L., W.M., M.P.M., C.T., R.T.M.) and Biostatistics and Computational Biology (M.P.M.), and James P. Wilmot Cancer Institute (C.Q.), University of Rochester Medical Center, Rochester, NY; University of Utah (N.J.), Salt Lake City; Northwestern University Feinberg School of Medicine (R.B., N.R., D.V.), Chicago, IL; David Geffen School of Medicine (B.G.V.), UCLA Medical Center, Los Angeles; and Greater Los Angeles VA HealthCare System (B.G.V.), CA.
Funding
Training and Educational CoreU54NS048843 · NINDS · UNIVERSITY OF ROCHESTER · PI DIRKSEN, ROBERT T · 2003 to 2017
$21.9MUniversity of Utah Center for Clinical and Translational ScienceUL1TR001067 · NCATS · UNIVERSITY OF UTAH · PI DERE, WILLARD H., HESS, RACHEL · 2013 to 2017
$19.8MEXPERIMENTAL THERAPEUTICS IN NEUROLOGICAL DISEASET32NS007338 · NINDS · UNIVERSITY OF ROCHESTER · PI ROBERT G. HOLLOWAY, Michael P McDermott · 1990 to 2026
$6.4MUniversity of Utah Center for clinical and Translational ScienceKL2TR001065 · NCATS · UNIVERSITY OF UTAH · PI DERE, WILLARD H., HESS, RACHEL · 2013 to 2017
$1.1MThe Development and Use of a Disease-Specific Instrument for Myotonic DystophyK23AR055947 · NIAMS · UNIVERSITY OF ROCHESTER · PI HEATWOLE, CHAD RYDEL · 2008 to 2012
$648kNCATS NIH HHS KL2 TR001065NCATS NIH HHS UL1 TR001067NIAMS NIH HHS 1K23AR055947NINDS NIH HHS T32 NS007338NINDS NIH HHS U54 NS048843NINDS NIH HHS U54NS48843-01
Abstract
objectiveTo determine the frequency and relative importance of the most life-affecting symptoms in myotonic dystrophy type 2 (DM2) and to identify the factors that have the strongest association with these symptoms.
methodsWe conducted a cross-sectional study of adult patients with DM2 from a National Registry of DM2 Patients to assess the prevalence and relative importance of 310 symptoms and 21 symptomatic themes. Participant responses were compared by age categories, sex, educational attainment, employment status, and duration of symptoms.
resultsThe symptomatic themes with the highest prevalence in DM2 were the inability to do activities (94.4%), limitations with mobility or walking (89.2%), hip, thigh, or knee weakness (89.2%), fatigue (89.2%), and myotonia (82.6%). Participants identified the inability to do activities and fatigue as the symptomatic themes that have the greatest overall effect on their lives. Unemployment, a longer duration of symptoms, and less education were associated with a higher average prevalence of all symptomatic themes (p < 0.01). Unemployment, a longer duration of symptoms, sex, and increased age were associated with a higher average effect of all symptomatic themes among patients with DM2 (p < 0.01).
conclusionsThe lives of patients with DM2 are affected by a variety of symptoms. These symptoms have different levels of significance and prevalence in this population and vary across DM2 subgroups in different demographic categories.
Indexed as
RegistriesSelf ReportAdultAgedAged, 80 and overCross-Sectional StudiesFatigueFemaleHumansMaleMiddle AgedMobility LimitationMyotonic DystrophySickness Impact ProfileSleep Wake Disorders
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