Duchenne and Becker muscular dystrophy in adolescents: current perspectives

References

• US National Library of MedicineGenetics Home Reference: DMD gene2017 Available from: https://ghr.nlm.nih.gov/gene/DMDAccessed June 1, 2017
   Google Scholar
• RomittiPAZhuYPuzhankaraSPrevalence of Duchenne and Becker muscular dystrophies in the United StatesPediatrics2015135351352125687144
   PubMed Web of Science ®Google Scholar
• MahJKKorngutLDykemanJDayLPringsheimTJetteNA systematic review and meta-analysis on the epidemiology of Duchenne and Becker muscular dystrophyNeuromuscul Disord201424648249124780148
   PubMed Web of Science ®Google Scholar
• MoxleyRTPandyaSCiafaloniEFoxDJCampbellKChange in natural history of Duchenne muscular dystrophy with long-term corticosteroid treatment: implications for managementJ Child Neurol20102591116112920581335
   PubMed Web of Science ®Google Scholar
• EagleMBaudouinSVChandlerCGiddingsDRBullockRBushbyKSurvival in Duchenne muscular dystrophy: improvements in life expectancy since 1967 and the impact of home nocturnal ventilationNeuromuscul Disord2002121092692912467747
   PubMed Web of Science ®Google Scholar
• PassamanoLTagliaAPalladinoAImprovement of survival in Duchenne muscular dystrophy: retrospective analysis of 835 patientsActa Myol201231212112523097603
   PubMedGoogle Scholar
• ConnuckDMSleeperLAColanSDCharacteristics and outcomes of cardiomyopathy in children with Duchenne or Becker muscular dystrophy: a comparative study from the Pediatric Cardiomyopathy RegistryAm Heart J20081556998100518513510
   PubMed Web of Science ®Google Scholar
• AshwathMLJacobsIBCroweCAAshwathRCSuperDMBahlerRCLeft ventricular dysfunction in Duchenne muscular dystrophy and genotypeAm J Cardiol2014114228428910.1016/j.amjcard.2014.04.03824878125
   PubMed Web of Science ®Google Scholar
• BirnkrantDJAraratEMhannaMJCardiac phenotype determines survival in Duchenne muscular dystrophyPediatr Pulmonol2016511707626097149
   PubMed Web of Science ®Google Scholar
• FlaniganKMDuchenne and Becker muscular dystrophiesNeurol Clin201432367168825037084
   PubMed Web of Science ®Google Scholar
• LambMMWestNAOuyangLCorticosteroid treatment and growth patterns in ambulatory males with Duchenne muscular dystrophyJ Pediatr2016173207213.e327039228
   PubMed Web of Science ®Google Scholar
• WoodCLStraubVGuglieriMBushbyKCheethamTShort stature and pubertal delay in Duchenne muscular dystrophyArch Dis Child2016101110110626141541
   PubMed Web of Science ®Google Scholar
• SarrazinEvon der HagenMScharaUvon AuKKaindlAMGrowth and psychomotor development of patients with Duchenne muscular dystrophyEur J Paediatr Neurol2014181384424100172
   PubMed Web of Science ®Google Scholar
• WestNAYangMLWeitzenkampDAPatterns of growth in ambulatory males with Duchenne muscular dystrophyJ Pediatr2013163617591763.e124103921
   PubMed Web of Science ®Google Scholar
• MartigneLSalleronJMayerMNatural evolution of weight status in Duchenne muscular dystrophy: a retrospective auditBr J Nutr2011105101486149121272404
   PubMed Web of Science ®Google Scholar
• van BruggenHWvan de Engel-HoekLSteenksMHPredictive factors for masticatory performance in Duchenne muscular dystrophyNeuromuscul Disord201424868469224969130
   PubMed Web of Science ®Google Scholar
• van den Engel-HoekLde GrootIJSieLTDystrophic changes in masticatory muscles related chewing problems and malocclusions in Duchenne muscular dystrophyNeuromuscul Disord201626635436027132120
   PubMed Web of Science ®Google Scholar
• YamadaYKawakamiMWadaAOtsukaTMuraokaKLiuMA comparison of swallowing dysfunction in Becker muscular dystrophy and Duchenne muscular dystrophyDisabil Rehabil Epub2017313
   Web of Science ®Google Scholar
• ToussaintMDavidsonZBouvoieVEvenepoelNHaanJSoudonPDysphagia in Duchenne muscular dystrophy: practical recommendations to guide managementDisabil Rehabil201638202052206226728920
   PubMed Web of Science ®Google Scholar
• DavidsonZERoddenGMázalaDAPractical nutrition guidelines for individuals with Duchenne muscular dystrophyChildersMKRegenerative Medicine for Degenerative Muscle DiseasesHeidelbergSpringer2016225279
   Google Scholar
• BushbyKFinkelRBirnkrantDJDiagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary careLancet Neurol20109217718919945914
   PubMed Web of Science ®Google Scholar
• Lo CascioCMGoetzeOLatshangTDBluemelSFrauenfelderTBlochKEGastrointestinal dysfunction in patients with Duchenne muscular dystrophyPLoS One20161110e016377927736891
   PubMed Web of Science ®Google Scholar
• HyzewiczJRueggUTTakedaSComparison of experimental protocols of physical exercise for mdx mice and Duchenne muscular dystrophy patientsJ Neuromuscul Dis20152432534227858750
   PubMedGoogle Scholar
• BushbyKFinkelRBirnkrantDJDiagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial managementLancet Neurol201091779319945913
   PubMed Web of Science ®Google Scholar
• BalabanBMatthewsDJClaytonGHCarryTCorticosteroid treatment and functional improvement in Duchenne muscular dystrophyAm J Phys Med Rehabil2005841184385016244521
   PubMed Web of Science ®Google Scholar
• YoungHKBartonBAWaisbrenSCognitive and psychological profile of males with Becker muscular dystrophyJ Child Neurol200823215516218056690
   PubMed Web of Science ®Google Scholar
• RicottiVMandyWPScotoMNeurodevelopmental, emotional, and behavioural problems in Duchenne muscular dystrophy in relation to underlying dystrophin gene mutationsDev Med Child Neurol2016581778426365034
   PubMed Web of Science ®Google Scholar
• BanihaniRSmileSYoonGCognitive and Neurobehavioral profile in boys with Duchenne muscular dystrophyJ Child Neurol201530111472148225660133
   PubMed Web of Science ®Google Scholar
• SnowWMAndersonJEJakobsonLSNeuropsychological and neurobehavioral functioning in Duchenne muscular dystrophy: a reviewNeurosci Biobehav Rev201337574375223545331
   PubMed Web of Science ®Google Scholar
• AstreaGBattiniRLenziSLearning disabilities in neuromuscular disorders: a springboard for adult lifeActa Myol2016352909528344438
   PubMedGoogle Scholar
• NigroGComiLIPolitanoLBainRJThe incidence and evolution of cardiomyopathy in Duchenne muscular dystrophyInt J Cardiol19902632712772312196
   PubMed Web of Science ®Google Scholar
• PalladinoAD’AmbrosioPPapaAAManagement of cardiac involvement in muscular dystrophies: paediatric versus adult formsActa Myol201635312813428484313
   PubMedGoogle Scholar
• PapaAAD’AmbrosioPPetilloRPalladinoAPolitanoLHeart transplantation in patients with dystrophinopathic cardiomyopathy: review of the literature and personal seriesIntractable Rare Dis Res2017629510128580208
   PubMed Web of Science ®Google Scholar
• GargSManagement of scoliosis in patients with Duchenne muscular dystrophy and spinal muscular atrophy: a literature reviewJ Pediatr Rehabil Med201691232926966797
   PubMed Web of Science ®Google Scholar
• ArcherJEGardnerACRoperHPChikermaneAATatmanAJDuchenne muscular dystrophy: the management of scoliosisJ Spine Surg20162318519427757431
   PubMedGoogle Scholar
• CheukDWongVWraigeEBaxterPColeASurgery for scoliosis in Duchenne muscular dystrophyCochrane Database Syst Rev201510CD00537526423318
   PubMed Web of Science ®Google Scholar
• MayerOHFinkelRSRummeyCCharacterization of pulmonary function in Duchenne muscular dystrophyPediatr Pulmonol201550548749425755201
   PubMed Web of Science ®Google Scholar
• BirnkrantDJBushbyKMAminRSThe respiratory management of patients with Duchenne muscular dystrophy: a DMD Care Considerations Working Group specialty articlePediatr Pulmonol201045873974820597083
   PubMed Web of Science ®Google Scholar
• FinderJDBirnkrantDCarlJRespiratory care of the patient with Duchenne muscular dystrophy: ATS consensus statementAm J Respir Crit Care Med2004170445646515302625
   PubMed Web of Science ®Google Scholar
• RyderSLeadleyRMArmstrongNThe burden, epidemiology, costs and treatment for Duchenne muscular dystrophy: an evidence reviewOrphanet J Rare Dis20171217928446219
   PubMed Web of Science ®Google Scholar
• ThayerSBellCMcDonaldCMThe direct cost of managing a rare disease: assessing medical and pharmacy costs associated with Duchenne muscular dystrophy in the United StatesJ Manag Care Spec Pharm201723663364128530521
   PubMed Web of Science ®Google Scholar
• CavazzaMKodraYArmeniPSocial/economic costs and health-related quality of life in patients with Duchenne muscular dystrophy in EuropeEur J Health Econ201617Suppl 1192927038625
   PubMed Web of Science ®Google Scholar
• LandfeldtELindgrenPBellCFQuantifying the burden of caregiving in Duchenne muscular dystrophyJ Neurol2016263590691526964543
   PubMed Web of Science ®Google Scholar
• MaglianoLD’AngeloMGVitaGPsychological and practical difficulties among parents and healthy siblings of children with Duchenne vs. Becker muscular dystrophy: an Italian comparative studyActa Myol201433313614325873782
   PubMedGoogle Scholar
• LandfeldtELindgrenPBellCFHealth-related quality of life in patients with Duchenne muscular dystrophy: a multinational, cross-sectional studyDev Med Child Neurol201658550851526483095
   PubMed Web of Science ®Google Scholar
• TravlosVPatmanSWilsonASimcockGDownsJQuality of life and psychosocial well-being in youth with neuromuscular disorders who are wheelchair users: a systematic reviewArch Phys Med Rehabil201798510041017.e127840132
   PubMed Web of Science ®Google Scholar
• VuillerotCHodgkinsonIBisseryASelf-perception of quality of life by adolescents with neuromuscular diseasesJ Adolesc Heal20104617076
   Web of Science ®Google Scholar
• OttoCSteffensenBFHøjbergALPredictors of health-related quality of life in boys with Duchenne muscular dystrophy from six European countriesJ Neurol2017264470972328175989
   PubMed Web of Science ®Google Scholar
• UzarkKKingECripeLHealth-related quality of life in children and adolescents with Duchenne muscular dystrophyPediatrics20121306e1559e156623129083
   PubMed Web of Science ®Google Scholar
• SamsonATomiakEDimilloJThe lived experience of hope among parents of a child with Duchenne muscular dystrophy: perceiving the human being beyond the illnessChronic Illn20095210311419474233
   PubMedGoogle Scholar
• MoranFCSpittleAJDelanyCLifestyle implications of home mechanical insufflation-exsufflation for children with neuromuscular disease and their familiesRespir Care201560796797425516994
   PubMed Web of Science ®Google Scholar
• BrayPBundyACRyanMMNorthKNBurnsJHealth status of boys with Duchenne muscular dystrophy: a parent’s perspectiveJ Paediatr Child Health201147855756221392149
   PubMed Web of Science ®Google Scholar
• DavisSEHynanLSLimbersCAThe PedsQL in pediatric patients with Duchenne muscular dystrophy: feasibility, reliability, and validity of the Pediatric Quality of Life Inventory Neuromuscular Module and Generic Core scalesJ Clin Neuromuscul Dis20101139710920215981
   PubMedGoogle Scholar
• HuntACarterBAbbottJParkerASpintySdeGoedeCPain experience, expression and coping in boys and young men with Duchenne muscular dystrophy: a pilot study using mixed methodsEur J Paediatr Neurol201620463063827053141
   PubMed Web of Science ®Google Scholar
• LagerCKroksmarkAKPain in adolescents with spinal muscular atrophy and Duchenne and Becker muscular dystrophyEur J Paediatr Neurol201519553754625978940
   PubMed Web of Science ®Google Scholar
• AriasRAndrewsJPandyaSPalliative care services in families of males with Duchenne muscular dystrophyMuscle Nerve20114419310121674523
   PubMed Web of Science ®Google Scholar
• HendriksenJGPoyskyJTSchransDGSchoutenEGAldenkampAPVlesJSPsychosocial adjustment in males with Duchenne muscular dystrophy: psychometric properties and clinical utility of a parent-report questionnaireJ Pediatr Psychol2009341697818650207
   PubMed Web of Science ®Google Scholar
• ElsenbruchSSchmidJLutzSGeersBScharaUSelf-reported quality of life and depressive symptoms in children, adolescents, and adults with Duchenne muscular dystrophy: a cross-sectional survey studyNeuropediatrics201344525726423794445
   PubMed Web of Science ®Google Scholar
• LatimerRStreetNConwayKCSecondary conditions among males with Duchenne or Becker muscular dystrophyJ Child Neurol201732766367028393671
   PubMed Web of Science ®Google Scholar
• FujinoHIwataYSaitoTMatsumuraTFujimuraHImuraOThe experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditionsInt J Qual Stud Health Well-being2016113204527712620
   PubMed Web of Science ®Google Scholar
• HamdaniYMistryBGibsonBETransitioning to adulthood with a progressive condition: best practice assumptions and individual experiences of young men with Duchenne muscular dystrophyDisabil Rehabil201537131144115125190331
   PubMed Web of Science ®Google Scholar
• JohnstonBJindal-SnapeDPringleJLife transitions of adolescents and young adults with life-limiting conditionsInt J Palliat Nurs2016221260861727992275
   PubMedGoogle Scholar
• SkyrmeSLiving with Duchenne muscular dystrophy: relational autonomy and decision-makingChild Soc2016303220229
   Web of Science ®Google Scholar
• DreyerPSSteffensenBFPedersenBDLiving with severe physical impairment, Duchenne’s muscular dystrophy and home mechanical ventilationInt J Qual Stud Health Well-being2010535388
   PubMed Web of Science ®Google Scholar
• YamaguchiMSuzukiMBecoming a back-up carer: parenting sons with Duchenne muscular dystrophy transitioning into adulthoodNeuromuscul Disord2015251859325435264
   PubMed Web of Science ®Google Scholar
• AbbottDCarpenterJ“Wasting precious time”: young men with Duchenne muscular dystrophy negotiate the transition to adulthoodDisabil Soc201429811921205
   Web of Science ®Google Scholar
• PlumridgeGMetcalfeACoadJGillPFamily communication about genetic risk information: particular issues for Duchenne muscular dystrophyAm J Med Genet A2010152512251232
   Google Scholar
• GibsonBEMistryBSmithBBecoming men: gender, disability, and transitioning to adulthoodHealth (London)20141819511423456143
   PubMed Web of Science ®Google Scholar
• PehlerSRCraft-RosenbergMLonging: the lived experience of spirituality in adolescents with Duchenne muscular dystrophyJ Pediatr Nurs200924648149419931146
   PubMedGoogle Scholar
• GibsonBEYoungNLUpshurREMcKeeverPMen on the margin: a Bourdieusian examination of living into adulthood with muscular dystrophySoc Sci Med200765350551717482331
   PubMed Web of Science ®Google Scholar
• RahbekJWergeBMadsenAMarquardtJSteffensenBFJeppesenJAdult life with Duchenne muscular dystrophy: observations among an emerging and unforeseen patient populationPediatr Rehabil200581172815799132
   PubMedGoogle Scholar
• PangalilaRFvan den BosGABartelsBQuality of life of adult men with Duchenne muscular dystrophy in the Netherlands: implications for careJ Rehabil Med201547216116625502505
   PubMed Web of Science ®Google Scholar
• AbbottDPrescottHForbesKFraserJMajumdarAMen with Duchenne muscular dystrophy and end of life planningNeuromuscul Disord2017271384427816330
   PubMed Web of Science ®Google Scholar
• CarterGTJoyceNCAbreschALSmithAEVandeKeiftGKUsing palliative care in progressive neuromuscular disease to maximize quality of lifePhys Med Rehabil Clin N Am201223490390923137745
   PubMed Web of Science ®Google Scholar
• CohnRDBest practice in Duchenne dystrophyNeuromuscul Disord201020429220371092
   PubMed Web of Science ®Google Scholar
• RushtonCHIntegrating palliative care in life-limiting pediatric neuromuscular conditions: the case of SMA-type 1 and Duchene muscular dystrophyJ Palliat Care Med201321103
   Google Scholar
• DaviesBSehringSAPartridgeJCBarriers to palliative care for children: perceptions of pediatric health care providersPediatrics2008121228228818245419
   PubMed Web of Science ®Google Scholar
• ParkerDMaddocksISternLMThe role of palliative care in advanced muscular dystrophy and spinal muscular atrophyJ Paediatr Child Health199935324525010404443
   PubMed Web of Science ®Google Scholar
• WangCHBonnemannCGRutkowskiAConsensus statement on standard of care for congenital muscular dystrophiesJ Child Neurol201025121559158121078917
   PubMed Web of Science ®Google Scholar
• HiscockAKuhnIBarclaySAdvance care discussions with young people affected by life-limiting neuromuscular diseases: a systematic literature review and narrative synthesisNeuromuscul Disord201727211511927916344
   PubMed Web of Science ®Google Scholar
• CohenEMackenzieRGYatesGLHEADSS, a psychosocial risk assessment instrument: implications for designing effective intervention programs for runaway youthJ Adolesc Health19911275395441772892
   PubMed Web of Science ®Google Scholar
• BermanHSTalking HEADS: interviewing adolescentsHMO Pract198711311
   Google Scholar
• KatzenellenbogenRHEADSS: the “review of systems” for adolescentsAMA J Ethics200573197201
   Google Scholar
• LandfeldtELindgrenPBellCFHealth-related quality of life in patients with Duchenne muscular dystrophy: a multinational, cross-sectional studyDev Med Child Neurol201658550851526483095
   PubMed Web of Science ®Google Scholar
• MaglianoLPatalanoMSagliocchiA“I have got something positive out of this situation”: psychological benefits of caregiving in relatives of young people with muscular dystrophyJ Neurol2014261118819524202786
   PubMed Web of Science ®Google Scholar
• European School Survey Project on Alcohol and Other DrugsESPAD Report 2015: Results from the European School Survey Project on Alcohol and Other DrugsLisbonEuropean Monitoring Centre for Drugs and Drug Addiction2015
   Google Scholar