Literature DB >> 29398641

Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan.

David J Birnkrant1, Katharine Bushby2, Carla M Bann3, Susan D Apkon4, Angela Blackwell3, Mary K Colvin5, Linda Cripe6, Adrienne R Herron7, Annie Kennedy8, Kathi Kinnett8, James Naprawa9, Garey Noritz6, James Poysky10, Natalie Street11, Christina J Trout12, David R Weber13, Leanne M Ward14.   

Abstract

Improvements in the function, quality of life, and longevity of patients with Duchenne muscular dystrophy (DMD) have been achieved through a multidisciplinary approach to management across a range of health-care specialties. In part 3 of this update of the DMD care considerations, we focus on primary care, emergency management, psychosocial care, and transitions of care across the lifespan. Many primary care and emergency medicine clinicians are inexperienced at managing the complications of DMD. We provide a guide to the acute and chronic medical conditions that these first-line providers are likely to encounter. With prolonged survival, individuals with DMD face a unique set of challenges related to psychosocial issues and transitions of care. We discuss assessments and interventions that are designed to improve mental health and independence, functionality, and quality of life in critical domains of living, including health care, education, employment, interpersonal relationships, and intimacy.
Copyright © 2018 Elsevier Ltd. All rights reserved.

Entities:  

Mesh:

Year:  2018        PMID: 29398641      PMCID: PMC5902408          DOI: 10.1016/S1474-4422(18)30026-7

Source DB:  PubMed          Journal:  Lancet Neurol        ISSN: 1474-4422            Impact factor:   44.182


  41 in total

1.  Are males with Duchenne muscular dystrophy at risk for reading disabilities?

Authors:  Jos G M Hendriksen; Johan S H Vles
Journal:  Pediatr Neurol       Date:  2006-04       Impact factor: 3.372

2.  The Strengths and Difficulties Questionnaire: a research note.

Authors:  R Goodman
Journal:  J Child Psychol Psychiatry       Date:  1997-07       Impact factor: 8.982

3.  The PHQ-9: validity of a brief depression severity measure.

Authors:  K Kroenke; R L Spitzer; J B Williams
Journal:  J Gen Intern Med       Date:  2001-09       Impact factor: 5.128

4.  Becoming a back-up carer: parenting sons with Duchenne muscular dystrophy transitioning into adulthood.

Authors:  Miku Yamaguchi; Machiko Suzuki
Journal:  Neuromuscul Disord       Date:  2014-09-10       Impact factor: 4.296

5.  Functional status II(R). A measure of child health status.

Authors:  R E Stein; D J Jessop
Journal:  Med Care       Date:  1990-11       Impact factor: 2.983

Review 6.  Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care.

Authors:  Katharine Bushby; Richard Finkel; David J Birnkrant; Laura E Case; Paula R Clemens; Linda Cripe; Ajay Kaul; Kathi Kinnett; Craig McDonald; Shree Pandya; James Poysky; Frederic Shapiro; Jean Tomezsko; Carolyn Constantin
Journal:  Lancet Neurol       Date:  2009-11-27       Impact factor: 44.182

7.  Men on the margin: a Bourdieusian examination of living into adulthood with muscular dystrophy.

Authors:  Barbara E Gibson; Nancy L Young; Ross E G Upshur; Patricia McKeever
Journal:  Soc Sci Med       Date:  2007-05-04       Impact factor: 4.634

8.  Neurodevelopmental, emotional, and behavioural problems in Duchenne muscular dystrophy in relation to underlying dystrophin gene mutations.

Authors:  Valeria Ricotti; William P L Mandy; Mariacristina Scoto; Marika Pane; Nicolas Deconinck; Sonia Messina; Eugenio Mercuri; David H Skuse; Francesco Muntoni
Journal:  Dev Med Child Neurol       Date:  2015-09-14       Impact factor: 5.449

9.  Burden, professional support, and social network in families of children and young adults with muscular dystrophies.

Authors:  Lorenza Magliano; Melania Patalano; Alessandra Sagliocchi; Marianna Scutifero; Antonella Zaccaro; Maria Grazia D'angelo; Federica Civati; Erika Brighina; Giuseppe Vita; Gian Luca Vita; Sonia Messina; Maria Sframeli; Marika Pane; Maria Elena Lombardo; Roberta Scalise; Adele D'amico; Giulia Colia; Michela Catteruccia; Umberto Balottin; Angela Berardinelli; Maria Chiara Motta; Corrado Angelini; Alessandra Gaiani; Claudio Semplicini; Luca Bello; Roberta Battini; Guja Astrea; Luisa Politano
Journal:  Muscle Nerve       Date:  2015-04-22       Impact factor: 3.217

10.  206th ENMC International Workshop: Care for a novel group of patients - adults with Duchenne muscular dystrophy Naarden, The Netherlands, 23-25 May 2014.

Authors:  Jes Rahbek; Birgit F Steffensen; Kate Bushby; Imelda J M de Groot
Journal:  Neuromuscul Disord       Date:  2015-05-27       Impact factor: 4.296

View more
  76 in total

1.  High prevalence of plasma lipid abnormalities in human and canine Duchenne and Becker muscular dystrophies depicts a new type of primary genetic dyslipidemia.

Authors:  Zoe White; Chady H Hakim; Marine Theret; N Nora Yang; Fabio Rossi; Dan Cox; Gordon A Francis; Volker Straub; Kathryn Selby; Constadina Panagiotopoulos; Dongsheng Duan; Pascal Bernatchez
Journal:  J Clin Lipidol       Date:  2020-05-29       Impact factor: 4.766

2.  Two-Year Longitudinal Changes in Lower Limb Strength and Its Relation to Loss in Function in a Large Cohort of Patients With Duchenne Muscular Dystrophy.

Authors:  Abhinandan Batra; Ann Harrington; Donovan J Lott; Rebecca Willcocks; Claudia R Senesac; William McGehee; Dandan Xu; Sunita Mathur; Michael J Daniels; William D Rooney; Sean C Forbes; William Triplett; Jasjit K Deol; Ishu Arpan; Roxanne Bendixen; Richard Finkel; Erika Finanger; Gihan Tennekoon; Barry Byrne; Barry Russman; H Lee Sweeney; Glenn Walter; Krista Vandenborne
Journal:  Am J Phys Med Rehabil       Date:  2018-10       Impact factor: 2.159

Review 3.  Genetic neuromuscular disorders: living the era of a therapeutic revolution. Part 2: diseases of motor neuron and skeletal muscle.

Authors:  Giuseppe Vita; Gian Luca Vita; Olimpia Musumeci; Carmelo Rodolico; Sonia Messina
Journal:  Neurol Sci       Date:  2019-02-25       Impact factor: 3.307

Review 4.  Clinical management of Duchenne muscular dystrophy: the state of the art.

Authors:  Sonia Messina; Gian Luca Vita
Journal:  Neurol Sci       Date:  2018-09-14       Impact factor: 3.307

Review 5.  Emerging Strategies in the Treatment of Duchenne Muscular Dystrophy.

Authors:  Perry B Shieh
Journal:  Neurotherapeutics       Date:  2018-10       Impact factor: 7.620

6.  Using an Online, Modified Delphi Approach to Engage Patients and Caregivers in Determining the Patient-Centeredness of Duchenne Muscular Dystrophy Care Considerations.

Authors:  Dmitry Khodyakov; Sean Grant; Brian Denger; Kathi Kinnett; Ann Martin; Marika Booth; Courtney Armstrong; Emily Dao; Christine Chen; Ian Coulter; Holly Peay; Glen Hazlewood; Natalie Street
Journal:  Med Decis Making       Date:  2019-11-13       Impact factor: 2.583

Review 7.  [Transition from neuropediatrics to neurology in neuromuscular diseases].

Authors:  U Schara; G R Fink; A von Moers
Journal:  Nervenarzt       Date:  2018-10       Impact factor: 1.214

8.  Evaluating Implementation of the Updated Care Considerations for Duchenne Muscular Dystrophy.

Authors:  Katherine S Ong; Kathi Kinnett; Rieza Soelaeman; Lauren Webb; Jennifer S Bain; Ann S Martin; Christina Westfield; Julie Bolen; Natalie Street
Journal:  Pediatrics       Date:  2018-10       Impact factor: 7.124

9.  Bone Health and Endocrine Care of Boys with Duchenne Muscular Dystrophy: Data from the MD STARnet.

Authors:  David R Weber; Shiny Thomas; Stephen W Erickson; Deborah Fox; Joyce Oleszek; Shree Pandya; Yedatore Venkatesh; Christina Westfield; Emma Ciafaloni
Journal:  J Neuromuscul Dis       Date:  2018

10.  Palliative care services in families of males with muscular dystrophy: Data from MD STARnet.

Authors:  Jennifer G Andrews; Shree Pandya; Christina Trout; Treeva Jaff; Dennis Matthews; Christopher Cunniff; F John Meaney
Journal:  SAGE Open Med       Date:  2019-03-27
View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.