{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,17]],"date-time":"2026-09-17T02:52:31Z","timestamp":1789613551732,"version":"build-2803163510"},"reference-count":68,"publisher":"Elsevier BV","issue":"7","license":[{"start":{"date-parts":[[2023,7,1]],"date-time":"2023-07-01T00:00:00Z","timestamp":1688169600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2023,7,1]],"date-time":"2023-07-01T00:00:00Z","timestamp":1688169600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","nmd-journal.com","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Neuromuscular Disorders"],"published-print":{"date-parts":[[2023,7]]},"DOI":"10.1016\/j.nmd.2023.03.012","type":"journal-article","created":{"date-parts":[[2023,3,28]],"date-time":"2023-03-28T13:35:56Z","timestamp":1680010556000},"page":"562-569","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":20,"title":["267th ENMC International workshop: psychological interventions for improving quality of life in slowly progressive neuromuscular disorders"],"prefix":"10.1016","volume":"33","author":[{"given":"Ronne","family":"Pater","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joana","family":"Garmendia","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Benjamin","family":"Gallais","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher","family":"Graham","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7381-2817","authenticated-orcid":false,"given":"Nicoline","family":"Voet","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nathalie","family":"Angeard","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hilde","family":"Braakman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marnix","family":"van Bruggen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cassiano Cesar de Carvalho","family":"Piccolo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tatiana de Carvalho","family":"Piccolo (sister of Cassiano)","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Florence","family":"Chanteux","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Grazia","family":"D'Angelo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Baziel","family":"van Engelen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Benjamin","family":"Gallais","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joana Garmendia","family":"Zaldua","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher","family":"Graham","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ingrid","family":"de Groot","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jos","family":"Hendriksen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sylvia","family":"Klinkenberg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Madelon","family":"Kroneman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Garazi","family":"Labayru","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Samar","family":"Muslemani","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria","family":"Nobile","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Luca","family":"Padua","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ronne","family":"Pater","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rosaline","family":"Quinlivan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael","family":"Rose","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carsten","family":"Schr\u00f6ter","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andone","family":"Sistiaga","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicoline","family":"Voet","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stefan","family":"Winblad","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Peter","family":"Young","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"key":"10.1016\/j.nmd.2023.03.012_bib0001","doi-asserted-by":"crossref","first-page":"1581","DOI":"10.1007\/s00415-011-6062-5","article-title":"A systematic review of quality of life in adults with muscle disease","volume":"258","author":"Graham","year":"2011","journal-title":"J Neurol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0002","doi-asserted-by":"crossref","first-page":"131","DOI":"10.1002\/mus.24487","article-title":"The potential of psychological interventions to improve quality of life and mood in muscle disorders: Psychological Interventions for Muscle Disorders","volume":"52","author":"Graham","year":"2015","journal-title":"Muscle Nerve"},{"key":"10.1016\/j.nmd.2023.03.012_bib0003","doi-asserted-by":"crossref","first-page":"64","DOI":"10.1111\/j.1529-8027.2008.00159.x","article-title":"Correlation between clinical\/neurophysiological findings and quality of life in charcot-marie-tooth type 1A","volume":"13","author":"Padua","year":"2008","journal-title":"J Peripher Nerv Syst"},{"key":"10.1016\/j.nmd.2023.03.012_bib0004","doi-asserted-by":"crossref","first-page":"508","DOI":"10.1177\/0269215513511340","article-title":"A multicentre postal survey investigating the contribution of illness perceptions, coping and optimism to quality of life and mood in adults with muscle disease","volume":"28","author":"Graham","year":"2014","journal-title":"Clin Rehabil"},{"key":"10.1016\/j.nmd.2023.03.012_bib0005","doi-asserted-by":"crossref","first-page":"210","DOI":"10.1037\/rep0000092","article-title":"The influence of psychological flexibility on life satisfaction and mood in muscle disorders","volume":"61","author":"Graham","year":"2016","journal-title":"Rehabil Psychol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0006","doi-asserted-by":"crossref","first-page":"405","DOI":"10.3109\/09638288.2012.694964","article-title":"Research priorities of patients with neuromuscular disease","volume":"35","author":"Nierse","year":"2013","journal-title":"Disabil Rehabil"},{"key":"10.1016\/j.nmd.2023.03.012_bib0007","doi-asserted-by":"crossref","first-page":"1155","DOI":"10.1016\/j.apmr.2004.11.028","article-title":"Chronic pain in persons with neuromuscular disease","volume":"86","author":"Jensen","year":"2005","journal-title":"Arch Phys Med Rehabil"},{"key":"10.1016\/j.nmd.2023.03.012_bib0008","doi-asserted-by":"crossref","first-page":"320","DOI":"10.1016\/j.apmr.2007.08.153","article-title":"Chronic pain in persons with myotonic dystrophy and facioscapulohumeral dystrophy","volume":"89","author":"Jensen","year":"2008","journal-title":"Arch Phys Med Rehabil"},{"key":"10.1016\/j.nmd.2023.03.012_bib0009","doi-asserted-by":"crossref","first-page":"397","DOI":"10.1016\/j.nmd.2009.03.007","article-title":"Fatigue and daytime sleepiness in patients with myotonic dystrophy type 1: to lump or split?","volume":"19","author":"Laberge","year":"2009","journal-title":"Neuromuscul Disord"},{"key":"10.1016\/j.nmd.2023.03.012_bib0010","doi-asserted-by":"crossref","first-page":"308","DOI":"10.1177\/1049909109335146","article-title":"Impact of biopsychosocial factors on chronic pain in persons with myotonic and facioscapulohumeral muscular dystrophy","volume":"26","author":"Mir\u00f3","year":"2009","journal-title":"Am J Hosp Palliat Care"},{"key":"10.1016\/j.nmd.2023.03.012_bib0011","doi-asserted-by":"crossref","first-page":"585","DOI":"10.2340\/16501977-2247","article-title":"Cognitive behavioural therapy for reducing fatigue in post-polio syndrome and in facioscapulohumeral dystrophy: a comparison","volume":"49","author":"Koopman","year":"2017","journal-title":"J Rehabil Med"},{"key":"10.1016\/j.nmd.2023.03.012_bib0012","doi-asserted-by":"crossref","first-page":"671","DOI":"10.1016\/S1474-4422(18)30203-5","article-title":"Cognitive behavioural therapy with optional graded exercise therapy in patients with severe fatigue with myotonic dystrophy type 1: a multicentre, single-blind, randomised trial","volume":"17","author":"Okkersen","year":"2018","journal-title":"Lancet Neurol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0013","doi-asserted-by":"crossref","first-page":"291","DOI":"10.1080\/0963828021000031188","article-title":"Views of health professionals on discussing sexual issues with patients","volume":"25","author":"Haboubi","year":"2003","journal-title":"Disabil Rehabil"},{"key":"10.1016\/j.nmd.2023.03.012_bib0014","doi-asserted-by":"crossref","first-page":"171","DOI":"10.1080\/01614576.1998.11074230","article-title":"Sexual function in people with disability and chronic illness: a health professional's guide","volume":"23","author":"Levine","year":"1998","journal-title":"J Sex Educ Ther"},{"key":"10.1016\/j.nmd.2023.03.012_bib0015","article-title":"Guide de pratique en ergoth\u00e9rapie \u2013 Favoriser la sexualit\u00e9 et la vie amoureuse des adultes pr\u00e9sentant une maladie neuromusculaire","author":"Muslemani","year":"2019","journal-title":"Groupe Rech Interdiscip Sur Mal Neuromusculaires (GRIMN)"},{"key":"10.1016\/j.nmd.2023.03.012_bib0016","doi-asserted-by":"crossref","first-page":"72","DOI":"10.1016\/S0960-8966(02)00155-4","article-title":"Report of the 95th European neuromuscular centre (ENMC) sponsored International workshop cognitive impairment in neuromuscular disorders, Naarden, The Netherlands, 13-15 July 2001","volume":"13","author":"D'Angelo","year":"2003","journal-title":"Neuromuscul Disord"},{"key":"10.1016\/j.nmd.2023.03.012_bib0017","doi-asserted-by":"crossref","first-page":"350","DOI":"10.1212\/01.wnl.0000225180.27833.c1","article-title":"Subtle cognitive dysfunction in adult onset myotonic dystrophy type 1 (DM1) and type 2 (DM2)","volume":"67","author":"Gaul","year":"2006","journal-title":"Neurology"},{"key":"10.1016\/j.nmd.2023.03.012_bib0018","doi-asserted-by":"crossref","first-page":"813","DOI":"10.1016\/S0960-8966(03)00137-8","article-title":"Executive dysfunction and avoidant personality trait in myotonic dystrophy type 1 (DM-1) and in proximal myotonic myopathy (PROMM\/DM-2)","volume":"13","author":"Meola","year":"2003","journal-title":"Neuromuscul Disord"},{"key":"10.1016\/j.nmd.2023.03.012_bib0019","doi-asserted-by":"crossref","first-page":"3530","DOI":"10.1093\/brain\/awr299","article-title":"The brain in myotonic dystrophy 1 and 2: evidence for a predominant white matter disease","volume":"134","author":"Minnerop","year":"2011","journal-title":"Brain"},{"key":"10.1016\/j.nmd.2023.03.012_bib0020","doi-asserted-by":"crossref","DOI":"10.1001\/archneur.61.12.1943","article-title":"Characterization of the pattern of cognitive impairment in myotonic dystrophy type 1","volume":"61","author":"Modoni","year":"2004","journal-title":"Arch Neurol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0021","doi-asserted-by":"crossref","first-page":"143","DOI":"10.1016\/j.cortex.2017.08.008","article-title":"The cognitive profile of myotonic dystrophy type 1: a systematic review and meta-analysis","volume":"95","author":"Okkersen","year":"2017","journal-title":"Cortex"},{"key":"10.1016\/j.nmd.2023.03.012_bib0022","doi-asserted-by":"crossref","first-page":"142","DOI":"10.1007\/s00415-014-7545-y","article-title":"Frontostriatal dysexecutive syndrome: a core cognitive feature of myotonic dystrophy type 2","volume":"262","author":"Peric","year":"2015","journal-title":"J Neurol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0023","doi-asserted-by":"crossref","first-page":"1246","DOI":"10.1007\/s00415-010-5498-3","article-title":"Brain involvement in myotonic dystrophies: neuroimaging and neuropsychological comparative study in DM1 and DM2","volume":"257","author":"Romeo","year":"2010","journal-title":"J Neurol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0024","doi-asserted-by":"crossref","first-page":"487","DOI":"10.1017\/S0033291709990602","article-title":"Cognitive\/personality pattern and triplet expansion size in adult myotonic dystrophy type 1 (DM1): CTG repeats, cognition and personality in DM1","volume":"40","author":"Sistiaga","year":"2010","journal-title":"Psychol Med"},{"key":"10.1016\/j.nmd.2023.03.012_bib0025","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1371\/journal.pone.0204227","article-title":"Social cognition in myotonic dystrophy type 1: specific or secondary impairment?","volume":"13","author":"Labayru","year":"2018","journal-title":"PLoS One"},{"key":"10.1016\/j.nmd.2023.03.012_bib0026","doi-asserted-by":"crossref","first-page":"313","DOI":"10.1016\/j.nmd.2022.02.004","article-title":"Instrumental activities of daily living in adults with the DM1 childhood phenotype: going beyond motor impairments","volume":"32","author":"Muslemani","year":"2022","journal-title":"Neuromuscul Disord"},{"key":"10.1016\/j.nmd.2023.03.012_bib0027","doi-asserted-by":"crossref","first-page":"56","DOI":"10.1186\/s40359-021-00562-1","article-title":"Accomplishment of instrumental activities of daily living and its relationship with cognitive functions in adults with myotonic dystrophy type 1 childhood phenotype: an exploratory study","volume":"9","author":"Tremblay","year":"2021","journal-title":"BMC Psychol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0028","doi-asserted-by":"crossref","first-page":"370","DOI":"10.1016\/j.nmd.2013.01.003","article-title":"Illuminating CNS and cognitive issues in myotonic dystrophy: workshop report","volume":"23","author":"Axford","year":"2013","journal-title":"Neuromuscul Disord"},{"key":"10.1016\/j.nmd.2023.03.012_bib0029","doi-asserted-by":"crossref","first-page":"445","DOI":"10.1016\/j.nmd.2014.01.013","article-title":"Consensus on cerebral involvement in myotonic dystrophy. workshop report: May 24-27, 2013, Ferrere (AT), Italy","volume":"24","author":"Bugiardini","year":"2014","journal-title":"Neuromuscul Disord"},{"key":"10.1016\/j.nmd.2023.03.012_bib0030","doi-asserted-by":"crossref","first-page":"61","DOI":"10.1016\/j.nmd.2016.10.003","article-title":"Cognitive decline over time in adults with myotonic dystrophy type 1: A 9-year longitudinal study","volume":"27","author":"Gallais","year":"2017","journal-title":"Neuromuscul Disord"},{"key":"10.1016\/j.nmd.2023.03.012_bib0031","doi-asserted-by":"crossref","first-page":"1471","DOI":"10.1111\/ene.13062","article-title":"Cognition in myotonic dystrophy type 1: a 5-year follow-up study","volume":"23","author":"Winblad","year":"2016","journal-title":"Eur J Neurol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0032","doi-asserted-by":"crossref","first-page":"121","DOI":"10.1111\/jnp.12192","article-title":"Age-related cognitive decline in myotonic dystrophy type 1: An 11-year longitudinal follow-up study","volume":"14","author":"Labayru","year":"2020","journal-title":"J Neuropsychol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0033","doi-asserted-by":"crossref","first-page":"148","DOI":"10.1186\/s12883-015-0401-6","article-title":"Prevalence and correlates of apathy in myotonic dystrophy type 1","volume":"15","author":"Gallais","year":"2015","journal-title":"BMC Neurol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0034","doi-asserted-by":"crossref","first-page":"260","DOI":"10.1016\/j.jad.2019.03.036","article-title":"Affective symptoms and apathy in myotonic dystrophy type 1 a systematic review and meta-analysis","volume":"250","author":"van der Velden","year":"2019","journal-title":"J Affect Disord"},{"key":"10.1016\/j.nmd.2023.03.012_bib0035","doi-asserted-by":"crossref","first-page":"742","DOI":"10.1002\/mus.26022","article-title":"Cognitive impairment and quality of life in patients with myotonic dystrophy type 1","volume":"57","author":"Fujino","year":"2018","journal-title":"Muscle Nerve"},{"key":"10.1016\/j.nmd.2023.03.012_bib0036","doi-asserted-by":"crossref","first-page":"205","DOI":"10.3233\/JND-170246","article-title":"Participation and the role of neuropsychological functioning in myotonic dystrophy type 1","volume":"5","author":"Van Heugten","year":"2018","journal-title":"JND"},{"key":"10.1016\/j.nmd.2023.03.012_bib0037","doi-asserted-by":"crossref","first-page":"1205","DOI":"10.1093\/jpepsy\/jsz062","article-title":"Instruments for the assessment of behavioral and psychosocial functioning in duchenne and becker muscular dystrophy; a systematic review of the literature","volume":"44","author":"Hellebrekers","year":"2019","journal-title":"J Pediatr Psychol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0038","doi-asserted-by":"crossref","first-page":"1126","DOI":"10.1111\/dmcn.14194","article-title":"A neurodevelopmental approach to myotonic dystrophy type 1","volume":"61","author":"Angeard","year":"2019","journal-title":"Dev Med Child Neurol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0039","doi-asserted-by":"crossref","first-page":"451","DOI":"10.1016\/j.nmd.2007.02.012","article-title":"Cognitive profile in childhood myotonic dystrophy type 1: is there a global impairment?","volume":"17","author":"Angeard","year":"2007","journal-title":"Neuromuscul Disord"},{"key":"10.1016\/j.nmd.2023.03.012_bib0040","doi-asserted-by":"crossref","first-page":"e852","DOI":"10.1212\/WNL.0000000000006948","article-title":"A large multicenter study of pediatric myotonic dystrophy type 1 for evidence-based management","volume":"92","author":"Lagrue","year":"2019","journal-title":"Neurology"},{"key":"10.1016\/j.nmd.2023.03.012_bib0041","doi-asserted-by":"crossref","first-page":"1214","DOI":"10.1111\/dmcn.14161","article-title":"Cognitive and adaptive functioning in congenital and childhood forms of myotonic dystrophy type 1: a longitudinal study","volume":"61","author":"Lindeblad","year":"2019","journal-title":"Dev Med Child Neurol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0042","doi-asserted-by":"crossref","first-page":"468","DOI":"10.1016\/j.nmd.2011.04.009","article-title":"A new window on neurocognitive dysfunction in the childhood form of myotonic dystrophy type 1 (DM1)","volume":"21","author":"Angeard","year":"2011","journal-title":"Neuromuscul Disord"},{"key":"10.1016\/j.nmd.2023.03.012_bib0043","doi-asserted-by":"crossref","first-page":"905","DOI":"10.1111\/j.1469-8749.2012.04379.x","article-title":"Psychiatric and cognitive phenotype of childhood myotonic dystrophy type 1","volume":"54","author":"Douniol","year":"2012","journal-title":"Dev Med Child Neurol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0044","doi-asserted-by":"crossref","first-page":"1369","DOI":"10.3390\/brainsci12101369","article-title":"Clinical utility of eye tracking in assessing distractibility in children with neurological disorders or ADHD: a cross-sectional study","volume":"12","author":"Sweere","year":"2022","journal-title":"Brain Sci"},{"key":"10.1016\/j.nmd.2023.03.012_bib0045","doi-asserted-by":"crossref","first-page":"1122","DOI":"10.1007\/s00415-012-6771-4","article-title":"Diffusion tensor imaging reveals widespread white matter abnormalities in children and adolescents with myotonic dystrophy type 1","volume":"260","author":"Wozniak","year":"2013","journal-title":"J Neurol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0046","doi-asserted-by":"crossref","first-page":"216","DOI":"10.1016\/j.nmd.2017.12.006","article-title":"Childhood-onset form of myotonic dystrophy type 1 and autism spectrum disorder: Is there comorbidity?","volume":"28","author":"Angeard","year":"2018","journal-title":"Neuromuscul Disord"},{"key":"10.1016\/j.nmd.2023.03.012_bib0047","doi-asserted-by":"crossref","first-page":"389","DOI":"10.1016\/j.cortex.2021.05.004","article-title":"Social cognition in type 1 myotonic dystrophy - a mini review","volume":"142","author":"Leddy","year":"2021","journal-title":"Cortex"},{"key":"10.1016\/j.nmd.2023.03.012_bib0048","doi-asserted-by":"crossref","first-page":"918","DOI":"10.1002\/ajmg.b.30698","article-title":"Autism spectrum conditons in myotonic dystrophy type 1: a study on 57 individuals with congenital and childhood forms","volume":"147B","author":"Ekstr\u00f6m","year":"2008","journal-title":"Am J Med Genet"},{"key":"10.1016\/j.nmd.2023.03.012_bib0049","doi-asserted-by":"crossref","first-page":"443","DOI":"10.1212\/CPJ.0000000000000646","article-title":"Consensus-based care recommendations for congenital and childhood-onset myotonic dystrophy type 1","volume":"9","author":"Johnson","year":"2019","journal-title":"Neurol Clin Pract"},{"key":"10.1016\/j.nmd.2023.03.012_bib0050","doi-asserted-by":"crossref","first-page":"845","DOI":"10.1016\/S0140-6736(12)61897-2","article-title":"Muscular dystrophies","volume":"381","author":"Mercuri","year":"2013","journal-title":"Lancet"},{"key":"10.1016\/j.nmd.2023.03.012_bib0051","doi-asserted-by":"crossref","first-page":"111","DOI":"10.1016\/j.nmd.2015.11.012","article-title":"Where do we stand in trial readiness for autosomal recessive limb girdle muscular dystrophies?","volume":"26","author":"Straub","year":"2016","journal-title":"Neuromuscul Disord"},{"key":"10.1016\/j.nmd.2023.03.012_bib0052","doi-asserted-by":"crossref","first-page":"663","DOI":"10.1177\/0883073817701368","article-title":"Secondary conditions among males with duchenne or becker muscular dystrophy","volume":"32","author":"Latimer","year":"2017","journal-title":"J Child Neurol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0053","first-page":"136","article-title":"Psychological and practical difficulties among parents and healthy siblings of children with Duchenne vs. Becker muscular dystrophy: an Italian comparative study","volume":"33","author":"Magliano","year":"2014","journal-title":"Acta Myol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0054","doi-asserted-by":"crossref","first-page":"352","DOI":"10.1016\/S0960-8966(99)00006-1","article-title":"Cognitive and psychological profile of a Tunisian population of limb girdle muscular dystrophy","volume":"9","author":"Miladi","year":"1999","journal-title":"Neuromuscul Disord"},{"key":"10.1016\/j.nmd.2023.03.012_bib0055","doi-asserted-by":"crossref","first-page":"e11039","DOI":"10.1097\/MD.0000000000011039","article-title":"Determining the burden of the family caregivers of people with neuromuscular diseases who use a wheelchair","volume":"97","author":"Pousada","year":"2018","journal-title":"Medicine"},{"key":"10.1016\/j.nmd.2023.03.012_bib0056","doi-asserted-by":"crossref","first-page":"639","DOI":"10.1016\/j.ejpn.2017.02.007","article-title":"Assessing mental health in boys with Duchenne muscular dystrophy: emotional, behavioural and neurodevelopmental profile in an Italian clinical sample","volume":"21","author":"Colombo","year":"2017","journal-title":"Eur J Paediatr Neurol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0057","doi-asserted-by":"crossref","first-page":"2054","DOI":"10.1007\/s00415-020-09792-6","article-title":"Mental health and coping strategies in families of children and young adults with muscular dystrophies","volume":"267","author":"Tesei","year":"2020","journal-title":"J Neurol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0058","doi-asserted-by":"crossref","first-page":"987","DOI":"10.1111\/dmcn.13934","article-title":"Duchenne muscular dystrophy and caregiver burden: a systematic review","volume":"60","author":"Landfeldt","year":"2018","journal-title":"Dev Med Child Neurol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0059","doi-asserted-by":"crossref","first-page":"710","DOI":"10.1002\/mus.27057","article-title":"Cognition of the mothers of patients with Duchenne muscular dystrophy","volume":"62","author":"Demirci","year":"2020","journal-title":"Muscle Nerve"},{"key":"10.1016\/j.nmd.2023.03.012_bib0060","article-title":"Strength training and aerobic exercise training for muscle disease","volume":"12","author":"Voet","year":"2019","journal-title":"Cochrane Database Syst Rev"},{"key":"10.1016\/j.nmd.2023.03.012_bib0061","doi-asserted-by":"crossref","first-page":"1914","DOI":"10.1212\/WNL.0000000000001008","article-title":"Both aerobic exercise and cognitive-behavioral therapy reduce chronic fatigue in FSHD: an RCT","volume":"83","author":"Voet","year":"2014","journal-title":"Neurology"},{"key":"10.1016\/j.nmd.2023.03.012_bib0062","doi-asserted-by":"crossref","first-page":"56","DOI":"10.1186\/1471-2377-10-56","article-title":"Effect of aerobic exercise training and cognitive behavioural therapy on reduction of chronic fatigue in patients with facioscapulohumeral dystrophy: protocol of the FACTS-2-FSHD trial","volume":"10","author":"Voet","year":"2010","journal-title":"BMC Neurol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0063","first-page":"1","article-title":"A randomised controlled trial of acceptance and commitment therapy for improving quality of life in people with muscle diseases","author":"Rose","year":"2022","journal-title":"Psychol Med"},{"key":"10.1016\/j.nmd.2023.03.012_bib0064","doi-asserted-by":"crossref","first-page":"221","DOI":"10.1016\/j.jpain.2013.10.014","article-title":"The psychological flexibility model: a basis for integration and progress in psychological approaches to chronic pain management","volume":"15","author":"McCracken","year":"2014","journal-title":"J Pain"},{"key":"10.1016\/j.nmd.2023.03.012_bib0065","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2018-022083","article-title":"Acceptance and commitment therapy for muscle disease (ACTMus): protocol for a two-arm randomised controlled trial of a brief guided self-help ACT programme for improving quality of life in people with muscle diseases","volume":"8","author":"Rose","year":"2018","journal-title":"BMJ Open"},{"key":"10.1016\/j.nmd.2023.03.012_bib0066","doi-asserted-by":"crossref","first-page":"578","DOI":"10.1111\/ene.13246","article-title":"Meditation training for people with amyotrophic lateral sclerosis: a randomized clinical trial","volume":"24","author":"Pagnini","year":"2017","journal-title":"Eur J Neurol"},{"key":"10.1016\/j.nmd.2023.03.012_bib0067","series-title":"Doing contextual therapy: An integrated model for working with individuals, couples, and families","author":"Goldenthal","year":"1996"},{"key":"10.1016\/j.nmd.2023.03.012_bib0068","doi-asserted-by":"crossref","first-page":"17","DOI":"10.1111\/1467-9752.3701002","article-title":"Amartya Sen's capability approach to education: a critical exploration","volume":"37","author":"Saito","year":"2003","journal-title":"J Philos Educ"}],"container-title":["Neuromuscular Disorders"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0960896623000962?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0960896623000962?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,10,18]],"date-time":"2025-10-18T08:13:32Z","timestamp":1760775212000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0960896623000962"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,7]]},"references-count":68,"journal-issue":{"issue":"7","published-print":{"date-parts":[[2023,7]]}},"alternative-id":["S0960896623000962"],"URL":"https:\/\/doi.org\/10.1016\/j.nmd.2023.03.012","relation":{},"ISSN":["0960-8966"],"issn-type":[{"value":"0960-8966","type":"print"}],"subject":[],"published":{"date-parts":[[2023,7]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"267th ENMC International workshop: psychological interventions for improving quality of life in slowly progressive neuromuscular disorders","name":"articletitle","label":"Article Title"},{"value":"Neuromuscular Disorders","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.nmd.2023.03.012","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"simple-article","name":"content_type","label":"Content Type"},{"name":"copyright","label":"Copyright"}]}}