{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,16]],"date-time":"2026-09-16T02:05:54Z","timestamp":1789524354100,"version":"build-2803163510"},"reference-count":70,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2024,4,29]],"date-time":"2024-04-29T00:00:00Z","timestamp":1714348800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,4,29]],"date-time":"2024-04-29T00:00:00Z","timestamp":1714348800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100012032","name":"Fondazione Romeo ed Enrica Invernizzi","doi-asserted-by":"publisher","award":["LIB_BANDI_COVID_19_03"],"award-info":[{"award-number":["LIB_BANDI_COVID_19_03"]}],"id":[{"id":"10.13039\/501100012032","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100003196","name":"Ministero della Salute","doi-asserted-by":"publisher","award":["RC 2021-2023"],"award-info":[{"award-number":["RC 2021-2023"]}],"id":[{"id":"10.13039\/501100003196","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Psychol"],"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>The COVID-19 pandemic substantially affected the lives of persons with inherited neuromuscular disorders (INMD), causing disruption in clinical and support services. While several studies have investigated mental health, distress and psychosocial resources in the general population during the pandemic, little is known about the experience of persons with INMD.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>This study was aimed to fill this gap by jointly investigating both psychopathological symptoms and psychosocial resources \u2013 specifically, resilience and perceived social support \u2013 among persons with INMD during the pandemic, taking into account demographic and clinical factors. Between April and December 2020, 59 participants with INMD (aged 15\u201359, 71.2% M) completed a questionnaire collecting demographic and clinical data, the Multidimensional Scale of Perceived Social Support, the Resilience Scale for Adults, and the Achenbach System of Empirically Based Assessment.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Overall, participants showed good levels of resilience and perceived social support. A minority of participants reported clinically relevant psychopathological symptoms, 28.81% for anxiety and depression. Most psychopathological symptoms were negatively correlated with resilience (-0.347\u2009&lt;\u2009<jats:italic>r<\/jats:italic>\u2009&lt;\u2009\u2212\u2009.420), but not significantly associated with social support. Consistent with previous studies, regression analyses highlighted that participants with Duchenne muscular dystrophy were more prone to report anxious and depressive symptoms (B\u2009=\u20091.748, <jats:italic>p<\/jats:italic>\u2009=\u2009.028, OR\u2009=\u20095.744), and participants with myotonic dystrophy, attention problems (B\u2009=\u20092.339, <jats:italic>p<\/jats:italic>\u2009=\u2009.006, OR\u2009=\u200910.376). Resilience emerged as a potential predictor of lower anxious-depressive symptoms (B=-1.264, <jats:italic>p<\/jats:italic>\u2009=\u2009.012, OR\u2009=\u20090.283).<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>The findings suggest the importance to investigate psychosocial resources in addition to psychopathology among persons with INMD, and to design interventions supporting resilience as a protective factor for mental health promotion.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s40359-024-01742-5","type":"journal-article","created":{"date-parts":[[2024,4,29]],"date-time":"2024-04-29T13:03:32Z","timestamp":1714395812000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Psychosocial resources and psychopathology among persons with neuromuscular disorders during the COVID-19 pandemic"],"prefix":"10.1186","volume":"12","author":[{"given":"Silvia","family":"Sanzo\u2019","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Federica","family":"Tizzoni","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stefano C.","family":"Previtali","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angela","family":"Berardinelli","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria","family":"Nobile","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Massimo","family":"Molteni","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martina","family":"Manzoni","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Arianna","family":"Tarabelloni","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annamaria","family":"Russo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Antonella","family":"Delle Fave","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria Grazia","family":"D\u2019Angelo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,4,29]]},"reference":[{"key":"1742_CR1","doi-asserted-by":"publisher","DOI":"10.1787\/5bb1946e-en","volume-title":"Country Health Profile 2021. State health EU","author":"OECD\/European Observatory on Health Systems and Policies","year":"2021","unstructured":"OECD\/European Observatory on Health Systems and Policies. Country Health Profile 2021. State health EU. Italy: OECD Publishing, Paris.; 2021. https:\/\/doi.org\/10.1787\/5bb1946e-en"},{"key":"1742_CR2","unstructured":"Ministero della Salute. Covid-19 Italia- desktop- Situazione in Italia. https:\/\/opendatamds.maps.arcgis.com\/apps\/dashboards\/0f1c9a02467b45a7b4ca12d8ba296596. Accessed 16 March 2023."},{"issue":"2","key":"1742_CR3","doi-asserted-by":"publisher","first-page":"57","DOI":"10.36185\/2532-1900-008","volume":"39","author":"E Mauri","year":"2020","unstructured":"Mauri E, Abati E, Musumeci O, Rodolico C, D\u2019Angelo MG, Comi GP, et al. Italian Association of Myology. Estimating the impact of COVID-19 pandemic on services provided by Italian neuromuscular centers: an Italian Association of Myology survey of the acute phase. Acta Myol. 2020;39(2):57\u201366. https:\/\/doi.org\/10.36185\/2532-1900-008","journal-title":"Acta Myol"},{"issue":"7","key":"1742_CR4","doi-asserted-by":"publisher","first-page":"562","DOI":"10.1016\/j.nmd.2023.03.012","volume":"33","author":"P Pater","year":"2023","unstructured":"Pater P R, Garmendia J, Gallais B, Graham C, Voet N, Young P, et al. 267th ENMC International workshop: psychological interventions for improving quality of life in slowly progressive neuromuscular disorders. Neuromuscul Disord. 2023;33(7):562\u20139. https:\/\/doi.org\/10.1016\/j.nmd.2023.03.012","journal-title":"Neuromuscul Disord"},{"key":"1742_CR5","doi-asserted-by":"publisher","first-page":"2054","DOI":"10.1007\/s00415-020-09792-6","volume":"267","author":"A Tesei","year":"2020","unstructured":"Tesei A, Nobile M, Colombo P, Civati F, Gandossini S, D\u2019Angelo G, et al. Mental health and coping strategies in families of children and young adults with muscular dystrophies. J Neurol. 2020;267:2054\u201369. https:\/\/doi.org\/10.1007\/s00415-020-09792-6","journal-title":"J Neurol"},{"issue":"4","key":"1742_CR6","doi-asserted-by":"publisher","first-page":"639","DOI":"10.1016\/j.ejpn.2017.02.007","volume":"21","author":"P Colombo","year":"2017","unstructured":"Colombo P, Nobile M, Tesei A, Civati F, Gandossini S, D\u2019Angelo G, et al. Assessing mental health in boys with Duchenne muscular dystrophy: emotional, behavioural and neurodevelopmental profile in an Italian clinical sample. Eur J Paediatr Neurol. 2017;21(4):639\u201347. https:\/\/doi.org\/10.1016\/j.ejpn.2017.02.007","journal-title":"Eur J Paediatr Neurol"},{"issue":"1","key":"1742_CR7","doi-asserted-by":"publisher","first-page":"77","DOI":"10.1111\/dmcn.12922","volume":"58","author":"V Ricotti","year":"2016","unstructured":"Ricotti V, Mandy WP, Scoto M, Pane M, Deconinck N, Muntoni F, et al. Neurodevelopmental, emotional, and behavioural problems in Duchenne muscular dystrophy in relation to underlying dystrophin gene mutations. Dev Med Child Neurol. 2016;58(1):77\u201384. https:\/\/doi.org\/10.1111\/dmcn.12922","journal-title":"Dev Med Child Neurol"},{"issue":"12","key":"1742_CR8","doi-asserted-by":"publisher","first-page":"2444","DOI":"10.1016\/j.apmr.2022.05.015","volume":"103","author":"C Pascual-Morena","year":"2022","unstructured":"Pascual-Morena C, Cavero-Redondo I, Reina-Guti\u00e9rrez S, Saz-Lara A, L\u00f3pez-Gil JF, Mart\u00ednez-Vizca\u00edno V. Prevalence of neuropsychiatric disorders in Duchenne and Becker muscular dystrophies: a systematic review and Meta-analysis. Arch Phys Med Rehabil. 2022;103(12):2444\u201353. https:\/\/doi.org\/10.1016\/j.apmr.2022.05.015","journal-title":"Arch Phys Med Rehabil"},{"issue":"3","key":"1742_CR9","doi-asserted-by":"publisher","first-page":"279","DOI":"10.3233\/JND-180310","volume":"5","author":"L Minier","year":"2018","unstructured":"Minier L, Lignier B, Bouvet C, Gallais B, Camart N. A review of psychopathology features, personality, and coping in myotonic dystrophy type 1. J Neuromuscul Dis. 2018;5(3):279\u201394. https:\/\/doi.org\/10.3233\/JND-180310","journal-title":"J Neuromuscul Dis"},{"issue":"1","key":"1742_CR10","doi-asserted-by":"publisher","first-page":"34","DOI":"10.1037\/0003-066X.55.1.34","volume":"55","author":"E Diener","year":"2000","unstructured":"Diener E. Subjective well-being. The science of happiness and a proposal for a national index. Am Psychol. 2000;55(1):34\u201343. https:\/\/doi.org\/10.1037\/0003-066X.55.1.34","journal-title":"Am Psychol"},{"issue":"2","key":"1742_CR11","doi-asserted-by":"publisher","first-page":"121","DOI":"10.2307\/2787065","volume":"61","author":"CLM Keyes","year":"1998","unstructured":"Keyes CLM. Social well-being. Soc Psychol Q. 1998;61(2):121\u201340. https:\/\/doi.org\/10.2307\/2787065","journal-title":"Soc Psychol Q"},{"issue":"2","key":"1742_CR12","doi-asserted-by":"publisher","first-page":"207","DOI":"10.2307\/3090197","volume":"43","author":"CL Keyes","year":"2002","unstructured":"Keyes CL. The mental health continuum: from languishing to flourishing in life. J Health Soc Behav. 2002;43(2):207\u201322. https:\/\/doi.org\/10.2307\/3090197","journal-title":"J Health Soc Behav"},{"issue":"6","key":"1742_CR13","doi-asserted-by":"publisher","first-page":"1069","DOI":"10.1037\/0022-3514.57.6.1069","volume":"57","author":"CD Ryff","year":"1989","unstructured":"Ryff CD. Happiness is everything, or is it? Explorations on the meaning of psychological well-being. J Pers Soc Psychol. 1989;57(6):1069\u201381. https:\/\/doi.org\/10.1037\/0022-3514.57.6.1069","journal-title":"J Pers Soc Psychol"},{"issue":"7","key":"1742_CR14","doi-asserted-by":"publisher","first-page":"98","DOI":"10.3390\/children5070098","volume":"5","author":"AS Masten","year":"2018","unstructured":"Masten AS, Barnes AJ. Resilience in children: Developmental perspectives. Child (Basel). 2018;5(7):98. https:\/\/doi.org\/10.3390\/children5070098","journal-title":"Child (Basel)"},{"issue":"7","key":"1742_CR15","doi-asserted-by":"publisher","first-page":"620","DOI":"10.1016\/S2215-0366(20)30515-0","volume":"8","author":"D Smeeth","year":"2021","unstructured":"Smeeth D, Beck S, Karam EG, Pluess M. The role of epigenetics in psychological resilience. Lancet Psychiatry. 2021;8(7):620\u20139. https:\/\/doi.org\/10.1016\/S2215-0366(20)30515-0","journal-title":"Lancet Psychiatry"},{"key":"1742_CR16","doi-asserted-by":"publisher","first-page":"8","DOI":"10.1186\/1477-7525-9-8","volume":"9","author":"G Windle","year":"2011","unstructured":"Windle G, Bennett KM, Noyes J. A methodological review of resilience measurement scales. Health Qual Life Outcomes. 2011;9:8. https:\/\/doi.org\/10.1186\/1477-7525-9-8","journal-title":"Health Qual Life Outcomes"},{"issue":"4","key":"1742_CR17","doi-asserted-by":"publisher","first-page":"610","DOI":"10.1037\/a0025195","volume":"58","author":"WW Mak","year":"2011","unstructured":"Mak WW, Ng IS, Wong CC. Resilience: enhancing well-being through the positive cognitive triad. J Couns Psychol. 2011;58(4):610\u20137. https:\/\/doi.org\/10.1037\/a0025195","journal-title":"J Couns Psychol"},{"issue":"7","key":"1742_CR18","doi-asserted-by":"publisher","first-page":"809","DOI":"10.1080\/00223980.2016.1203276","volume":"150","author":"T Mayordomo","year":"2016","unstructured":"Mayordomo T, Viguer P, Sales A, Satorres E, Mel\u00e9ndez JC. Resilience and coping as predictors of well-being in adults. J Psychol. 2016;150(7):809\u201321. https:\/\/doi.org\/10.1080\/00223980.2016.1203276","journal-title":"J Psychol"},{"issue":"2","key":"1742_CR19","doi-asserted-by":"publisher","first-page":"561","DOI":"10.1007\/s11205-013-0361-4","volume":"117","author":"KL Siedlecki","year":"2014","unstructured":"Siedlecki KL, Salthouse TA, Oishi S, Jeswani S. The relationship between Social Support and Subjective Well-Being Across Age. Soc Indic Res. 2014;117(2):561\u201376. https:\/\/doi.org\/10.1007\/s11205-013-0361-4","journal-title":"Soc Indic Res"},{"key":"1742_CR20","first-page":"200","volume-title":"A handbook for the study of mental health, second edition: Social contexts, theories, and systems","author":"RJ Turner","year":"2010","unstructured":"Turner RJ, Brown RL. Social support and mental health. In: Scheid TL, Brown TN, editors. A handbook for the study of mental health, second edition: Social contexts, theories, and systems. Cambridge: Cambridge University Press; 2010. pp. 200\u201312."},{"issue":"5","key":"1742_CR21","doi-asserted-by":"publisher","first-page":"640","DOI":"10.1177\/1359105314532973","volume":"21","author":"AL Terrill","year":"2016","unstructured":"Terrill AL, Molton IR, Ehde DM, Amtmann D, Bombardier CH, Jensen MP, et al. Resilience, age, and perceived symptoms in persons with long-term physical disabilities. J Health Psychol. 2016;21(5):640\u20139. https:\/\/doi.org\/10.1177\/1359105314532973","journal-title":"J Health Psychol"},{"issue":"6","key":"1742_CR22","doi-asserted-by":"publisher","first-page":"1158","DOI":"10.1016\/j.apmr.2016.11.012","volume":"98","author":"SL Battalio","year":"2017","unstructured":"Battalio SL, Silverman AM, Ehde DM, Amtmann D, Edwards KA, Jensen MP. Resilience and function in adults with physical disabilities: an observational study. Arch Phys Med Rehabil. 2017;98(6):1158\u201364. https:\/\/doi.org\/10.1016\/j.apmr.2016.11.012","journal-title":"Arch Phys Med Rehabil"},{"issue":"2","key":"1742_CR23","doi-asserted-by":"publisher","first-page":"329","DOI":"10.1016\/j.apmr.2016.09.123","volume":"98","author":"KA Edwards","year":"2017","unstructured":"Edwards KA, Alschuler KA, Ehde DM, Battalio SL, Jensen MP. Changes in resilience predict function in adults with physical disabilities: a longitudinal study. Arch Phys Med Rehabil. 2017;98(2):329\u201336. https:\/\/doi.org\/10.1016\/j.apmr.2016.09.123","journal-title":"Arch Phys Med Rehabil"},{"issue":"5","key":"1742_CR24","doi-asserted-by":"publisher","first-page":"297","DOI":"10.1093\/abm\/kaz048","volume":"54","author":"SL Battalio","year":"2020","unstructured":"Battalio SL, Tang CL, Jensen MP. Resilience and function in adults with chronic physical disabilities: a Cross-lagged Panel Design. Ann Behav Med. 2020;54(5):297\u2013307. https:\/\/doi.org\/10.1093\/abm\/kaz048","journal-title":"Ann Behav Med"},{"issue":"2","key":"1742_CR25","doi-asserted-by":"publisher","first-page":"214","DOI":"10.1016\/j.dhjo.2018.09.005","volume":"12","author":"R de la Vega","year":"2019","unstructured":"de la Vega R, Molton IR, Mir\u00f3 J, Smith AE, Jensen MP. Changes in perceived social support predict changes in depressive symptoms in adults with physical disability. Disabil Health J. 2019;12(2):214\u20139. https:\/\/doi.org\/10.1016\/j.dhjo.2018.09.005","journal-title":"Disabil Health J"},{"issue":"2","key":"1742_CR26","doi-asserted-by":"publisher","first-page":"164","DOI":"10.1016\/j.dhjo.2013.11.001","volume":"7","author":"MP Jensen","year":"2014","unstructured":"Jensen MP, Smith AE, Bombardier CH, Yorkston KM, Mir\u00f3 J, Molton IR. Social support, depression, and physical disability: age and diagnostic group effects. Disabil Health J. 2014;7(2):164\u201372. https:\/\/doi.org\/10.1016\/j.dhjo.2013.11.001","journal-title":"Disabil Health J"},{"key":"1742_CR27","doi-asserted-by":"publisher","first-page":"567","DOI":"10.1016\/j.jad.2021.09.098","volume":"296","author":"E Robinson","year":"2022","unstructured":"Robinson E, Sutin AR, Daly M, Jones A. A systematic review and meta-analysis of longitudinal cohort studies comparing mental health before versus during the COVID-19 pandemic in 2020. J Affect Disord. 2022;296:567\u201376. https:\/\/doi.org\/10.1016\/j.jad.2021.09.098","journal-title":"J Affect Disord"},{"issue":"1","key":"1742_CR28","doi-asserted-by":"publisher","first-page":"291","DOI":"10.1038\/s41398-020-00982-4","volume":"10","author":"R Barzilay","year":"2020","unstructured":"Barzilay R, Moore TM, Greenberg DM, DiDomenico GE, Brown LA, Gur RE, Resilience, et al. COVID-19-related stress, anxiety and depression during the pandemic in a large population enriched for healthcare providers. Transl Psychiatry. 2020;10(1):291. https:\/\/doi.org\/10.1038\/s41398-020-00982-4","journal-title":"Transl Psychiatry"},{"key":"1742_CR29","doi-asserted-by":"publisher","first-page":"113452","DOI":"10.1016\/j.psychres.2020.113452","volume":"293","author":"I Grey","year":"2020","unstructured":"Grey I, Arora T, Thomas J, Saneh A, Tohme P, Abi-Habib R. The role of perceived social support on depression and sleep during the COVID-19 pandemic. Psychiatry Res. 2020;293:113452. https:\/\/doi.org\/10.1016\/j.psychres.2020.113452","journal-title":"Psychiatry Res"},{"issue":"10","key":"1742_CR30","doi-asserted-by":"publisher","first-page":"e29022","DOI":"10.1097\/MD.0000000000029022","volume":"101","author":"C Huang","year":"2022","unstructured":"Huang C, Feng Q, Zhang B, Ren H, Liu Z, Zhang F, et al. Income and social support related with mental health during COVID-19 outbreak in China. Med (Baltim). 2022;101(10):e29022. https:\/\/doi.org\/10.1097\/MD.0000000000029022","journal-title":"Med (Baltim)"},{"issue":"1","key":"1742_CR31","doi-asserted-by":"publisher","first-page":"16","DOI":"10.1186\/s12888-020-03012-1","volume":"21","author":"F Li","year":"2021","unstructured":"Li F, Luo S, Mu W, Li Y, Ye L, Chen X, et al. Effects of sources of social support and resilience on the mental health of different age groups during the COVID-19 pandemic. BMC Psychiatry. 2021;21(1):16. https:\/\/doi.org\/10.1186\/s12888-020-03012-1","journal-title":"BMC Psychiatry"},{"issue":"2","key":"1742_CR32","doi-asserted-by":"publisher","first-page":"490","DOI":"10.1111\/asap.12314","volume":"22","author":"Y Shu","year":"2022","unstructured":"Shu Y, Lin W, Yang J, Huang P, Li B, Zhang X. How social support predicts anxiety among university students during COVID-19 control phase: mediating roles of self-esteem and resilience. Anal Soc Issues Public Policy. 2022;22(2):490\u2013505. https:\/\/doi.org\/10.1111\/asap.12314","journal-title":"Anal Soc Issues Public Policy"},{"key":"1742_CR33","doi-asserted-by":"publisher","DOI":"10.1002\/jcop.22832","author":"T Schulder","year":"2022","unstructured":"Schulder T, Rudenstine S, Bhatt KJ, McNeal K, Ettman CK, Galea S. A multilevel approach to social support as a determinant of mental health during COVID-19. J Community Psychol. 2022. https:\/\/doi.org\/10.1002\/jcop.22832","journal-title":"J Community Psychol"},{"issue":"11","key":"1742_CR34","doi-asserted-by":"publisher","first-page":"5875","DOI":"10.3390\/ijerph18115875","volume":"18","author":"BHP Lau","year":"2021","unstructured":"Lau BHP, Cheung MKT, Chan LTH, Chan CLW, Leung PPY. Resilience in the storm: impacts of Changed Daily Lifestyles on Mental Health in persons with chronic illnesses under the COVID-19 pandemic. Int J Environ Res Public Health. 2021;18(11):5875. https:\/\/doi.org\/10.3390\/ijerph18115875","journal-title":"Int J Environ Res Public Health"},{"key":"1742_CR35","doi-asserted-by":"publisher","first-page":"567522","DOI":"10.3389\/fpsyg.2020.567522","volume":"11","author":"G Rapelli","year":"2020","unstructured":"Rapelli G, Lopez G, Donato S, Pagani AF, Parise M, Iafrate R, et al. A Postcard from Italy: challenges and Psychosocial resources of partners living with and without a chronic disease during COVID-19 epidemic. Front Psychol. 2020;11:567522. https:\/\/doi.org\/10.3389\/fpsyg.2020.567522","journal-title":"Front Psychol"},{"issue":"10","key":"1742_CR36","doi-asserted-by":"publisher","first-page":"3396","DOI":"10.1111\/ene.14697","volume":"28","author":"S Bonavita","year":"2021","unstructured":"Bonavita S, Sparaco M, Russo A, Borriello G, Lavorgna L. Perceived stress and social support in a large population of people with multiple sclerosis recruited online through the COVID-19 pandemic. Eur J Neurol. 2021;28(10):3396\u2013402. https:\/\/doi.org\/10.1111\/ene.14697","journal-title":"Eur J Neurol"},{"issue":"24","key":"1742_CR37","doi-asserted-by":"publisher","first-page":"3437","DOI":"10.1080\/09638288.2019.1597182","volume":"42","author":"E Koutsogeorgou","year":"2020","unstructured":"Koutsogeorgou E, Chiesi AM, Leonardi M. Social capital components and social support of persons with multiple sclerosis: a systematic review of the literature from 2000 to 2018. Disabil Rehabil. 2020;42(24):3437\u201349. https:\/\/doi.org\/10.1080\/09638288.2019.1597182","journal-title":"Disabil Rehabil"},{"issue":"6","key":"1742_CR38","doi-asserted-by":"publisher","first-page":"347","DOI":"10.1037\/hea0001079","volume":"40","author":"EB Davis","year":"2021","unstructured":"Davis EB, McElroy-Heltzel SE, Lemke AW, Cowden RG, VanderWeele TJ, Aten JD, et al. Psychological and spiritual outcomes during the COVID-19 pandemic: a prospective longitudinal study of adults with chronic disease. Health Psychol. 2021;40(6):347\u201356. https:\/\/doi.org\/10.1037\/hea0001079","journal-title":"Health Psychol"},{"issue":"1","key":"1742_CR39","doi-asserted-by":"publisher","first-page":"633","DOI":"10.1186\/s12888-022-04265-8","volume":"22","author":"L Tarsitani","year":"2022","unstructured":"Tarsitani L, Pinucci I, Tedeschi F, Patan\u00e8 M, Papola D, Barbui C, et al. Resilience of people with chronic medical conditions during the COVID-19 pandemic: a 1-year longitudinal prospective survey. BMC Psychiatry. 2022;22(1):633. https:\/\/doi.org\/10.1186\/s12888-022-04265-8","journal-title":"BMC Psychiatry"},{"issue":"3","key":"1742_CR40","doi-asserted-by":"publisher","first-page":"251","DOI":"10.1016\/S1474-4422(18)30024-3","volume":"17","author":"DJ Birnkrant","year":"2018","unstructured":"Birnkrant DJ, Bushby K, Bann CM, Apkon SD, Blackwell A, Weber DR, DMD Care Considerations Working Group, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management. Lancet Neurol. 2018;17(3):251\u201367. https:\/\/doi.org\/10.1016\/S1474-4422(18)30024-3","journal-title":"Lancet Neurol"},{"issue":"12","key":"1742_CR41","doi-asserted-by":"publisher","first-page":"1305","DOI":"10.1111\/j.1468-1331.2007.01979.x","volume":"14","author":"F Norwood","year":"2007","unstructured":"Norwood F, de Visser M, Eymard B, Lochm\u00fcller H, Bushby K. EFNS guideline on diagnosis and management of limb girdle muscular dystrophies. Eur J Neurol. 2007;14(12):1305\u201312. https:\/\/doi.org\/10.1111\/j.1468-1331.2007.01979.x","journal-title":"Eur J Neurol"},{"issue":"5","key":"1742_CR42","doi-asserted-by":"publisher","first-page":"599","DOI":"10.1097\/WCO.0000000000000128","volume":"27","author":"C Turner","year":"2014","unstructured":"Turner C, Hilton-Jones D. Myotonic dystrophy: diagnosis, management and new therapies. Curr Opin Neurol. 2014;27(5):599\u2013606. https:\/\/doi.org\/10.1097\/WCO.0000000000000128","journal-title":"Curr Opin Neurol"},{"issue":"4","key":"1742_CR43","doi-asserted-by":"publisher","first-page":"e41","DOI":"10.1212\/WNL.0000000000001865","volume":"85","author":"S Karceski","year":"2015","unstructured":"Karceski S. Diagnosis and treatment of facioscapulohumeral muscular dystrophy: 2015 guidelines. Neurology. 2015;85(4):e41\u20133. https:\/\/doi.org\/10.1212\/WNL.0000000000001865","journal-title":"Neurology"},{"issue":"5","key":"1742_CR44","doi-asserted-by":"publisher","first-page":"1224","DOI":"10.1212\/CON.0000000000000927","volume":"26","author":"CJ Klein","year":"2020","unstructured":"Klein CJ. Charcot-Marie-tooth disease and other Hereditary neuropathies. Continuum (Minneap Minn). 2020;26(5):1224\u201356. https:\/\/doi.org\/10.1212\/CON.0000000000000927","journal-title":"Continuum (Minneap Minn)"},{"issue":"3","key":"1742_CR45","first-page":"127","volume":"8","author":"A Di Fabio","year":"2015","unstructured":"Di Fabio A, Palazzeschi L. Multidimensional scale of Perceived Social Support (MSPSS): un contributo alla validazione italiana. [Multidimensional scale of Perceived Social Support (MSPSS): a contribution to Italian validation]. Counsel G Ital Ric Appl. 2015;8(3):127\u201340.","journal-title":"Counsel G Ital Ric Appl"},{"key":"1742_CR46","first-page":"193","volume-title":"Conoscere La comunit\u00e0","author":"M Prezza","year":"2002","unstructured":"Prezza M, Principato MC. La Rete Sociale E Il sostegno sociale. In: Prezza M, Santinello M, editors. Conoscere La comunit\u00e0. Bologna: Il Mulino; 2002. pp. 193\u2013233."},{"issue":"1","key":"1742_CR47","doi-asserted-by":"publisher","first-page":"30","DOI":"10.1207\/s15327752jpa5201_2","volume":"52","author":"GD Zimet","year":"1988","unstructured":"Zimet GD, Dahlem NW, Zimet SG, Farley GK. The multidimensional scale of perceived social support. J Pers Assess. 1988;52(1):30\u201341. https:\/\/doi.org\/10.1207\/s15327752jpa5201_2","journal-title":"J Pers Assess"},{"issue":"272","key":"1742_CR48","first-page":"16","volume":"63","author":"C Capanna","year":"2015","unstructured":"Capanna C, Stratta P, Hjemdal O, Collazzoni A, Rossi A. The Italian validation study of the resilience scale for adults (RSA). BPA Appl. Psychol. Bull. 2015;63(272):16\u201324.","journal-title":"Bull"},{"issue":"3","key":"1742_CR49","doi-asserted-by":"publisher","first-page":"194","DOI":"10.1002\/cpp.488","volume":"13","author":"O Hjemdal","year":"2006","unstructured":"Hjemdal O, Friborg O, Stiles TC, Rosenvinge JH, Martinussen M. Resilience predicting psychiatric symptoms: a prospective study of protective factors and their role in adjustment to stressful life events. Clin Psychol Psychother. 2006;13(3):194\u2013201. https:\/\/doi.org\/10.1002\/cpp.488","journal-title":"Clin Psychol Psychother"},{"key":"1742_CR50","volume-title":"Manual for the ASEBA school-age forms & profiles","year":"2001","unstructured":"Achenbach TM, Rescorla LA, editors. Manual for the ASEBA school-age forms & profiles. Burlington (VT): University of Vermont, Research Centre for Children, Youth and Families; 2001."},{"key":"1742_CR51","volume-title":"Manual for the ASEBA adult forms & profiles","year":"2003","unstructured":"Achenbach TM, Rescorla LA, editors. Manual for the ASEBA adult forms & profiles. Burlington (VT): University of Vermont, Research Center for Children, Youth, & Families; 2003."},{"key":"1742_CR52","doi-asserted-by":"publisher","unstructured":"Achenbach TM. International findings with the Achenbach System of empirically based Assessment (ASEBA): applications to clinical services, research, and training. Child Adolesc Psychiatry Ment Health. 2019;13(1). https:\/\/doi.org\/10.1186\/s13034-019-0291-2","DOI":"10.1186\/s13034-019-0291-2"},{"issue":"6","key":"1742_CR53","doi-asserted-by":"publisher","first-page":"832","DOI":"10.1016\/j.ejpn.2019.09.008","volume":"23","author":"V Gocheva","year":"2019","unstructured":"Gocheva V, Schmidt S, Orsini AL, Hafner P, Schaedelin S, Weber P, et al. Psychosocial adjustment and parental stress in Duchenne muscular dystrophy. Eur J Paediatr Neurol. 2019;23(6):832\u201341. https:\/\/doi.org\/10.1016\/j.ejpn.2019.09.008","journal-title":"Eur J Paediatr Neurol"},{"issue":"2","key":"1742_CR54","doi-asserted-by":"publisher","first-page":"403","DOI":"10.3390\/jcm12020403","volume":"12","author":"DPR Chieffo","year":"2023","unstructured":"Chieffo DPR, Moriconi F, Pane M, Lucibello S, Ferraroli E, Norcia G, et al. A Longitudinal Follow-Up study of intellectual function in Duchenne muscular dystrophy over age: is it really stable? J Clin Med. 2023;12(2):403. https:\/\/doi.org\/10.3390\/jcm12020403","journal-title":"J Clin Med"},{"key":"1742_CR55","doi-asserted-by":"publisher","first-page":"134","DOI":"10.1016\/j.ejpn.2020.10.008","volume":"30","author":"D Gosar","year":"2021","unstructured":"Gosar D, Ko\u0161mrlj L, Musek PL, Me\u0161ko T, Stropnik S, Krko\u010d V, et al. Adaptive skills and mental health in children and adolescents with neuromuscular diseases. Eur J Paediatr Neurol. 2021;30:134\u201343. https:\/\/doi.org\/10.1016\/j.ejpn.2020.10.008","journal-title":"Eur J Paediatr Neurol"},{"key":"1742_CR56","unstructured":"IBM Corp. Released 2021. IBM SPSS statistics for Windows, Version 28.0. Armonk, NY: IBM Corp."},{"key":"1742_CR57","volume-title":"Statistical power analysis for the behavioral sciences","author":"J Cohen","year":"1988","unstructured":"Cohen J. Statistical power analysis for the behavioral sciences. 2nd ed. New York: Routledge; 1988.","edition":"2"},{"issue":"1","key":"1742_CR58","doi-asserted-by":"publisher","first-page":"18","DOI":"10.1186\/s40359-015-0076-1","volume":"3","author":"O Hjemdal","year":"2015","unstructured":"Hjemdal O, Roazzi A, Dias Mda G, Friborg O. The cross-cultural validity of the resilience scale for adults: a comparison between Norway and Brazil. BMC Psychol. 2015;3(1):18. https:\/\/doi.org\/10.1186\/s40359-015-0076-1","journal-title":"BMC Psychol"},{"issue":"2","key":"1742_CR59","doi-asserted-by":"publisher","first-page":"280","DOI":"10.1027\/1015-5759\/a000509","volume":"36","author":"F Anyan","year":"2020","unstructured":"Anyan F, Hjemdal O, Bizumic B, Friborg O. Measuring resilience across Australia and Norway: validation and psychometric properties of the English version of the resilience scale for adults. Eur J Psychol Assess. 2020;36(2):280\u20138. https:\/\/doi.org\/10.1027\/1015-5759\/a000509","journal-title":"Eur J Psychol Assess"},{"issue":"1","key":"1742_CR60","doi-asserted-by":"publisher","first-page":"131","DOI":"10.1186\/s40359-020-00493-3","volume":"8","author":"IS Jakobsen","year":"2020","unstructured":"Jakobsen IS, Madsen LMR, Mau M, Hjemdal O, Friborg O. The relationship between resilience and loneliness elucidated by a Danish version of the resilience scale for adults. BMC Psychol. 2020;8(1):131. https:\/\/doi.org\/10.1186\/s40359-020-00493-3","journal-title":"BMC Psychol"},{"issue":"10","key":"1742_CR61","doi-asserted-by":"publisher","first-page":"e0258133","DOI":"10.1371\/journal.pone.0258133","volume":"16","author":"D Maison","year":"2021","unstructured":"Maison D, Jaworska D, Adamczyk D, Affeltowicz D. The challenges arising from the COVID-19 pandemic and the way people deal with them. A qualitative longitudinal study. PLoS ONE. 2021;16(10):e0258133. https:\/\/doi.org\/10.1371\/journal.pone.0258133","journal-title":"PLoS ONE"},{"issue":"14","key":"1742_CR62","doi-asserted-by":"publisher","first-page":"7630","DOI":"10.3390\/ijerph18147630","volume":"18","author":"SCM Tomaino","year":"2021","unstructured":"Tomaino SCM, Cipolletta S, Kostova Z, Todorova I. Stories of life during the First Wave of the COVID-19 pandemic in Italy: a qualitative study. Int J Environ Res Public Health. 2021;18(14):7630. https:\/\/doi.org\/10.3390\/ijerph18147630","journal-title":"Int J Environ Res Public Health"},{"issue":"2","key":"1742_CR63","doi-asserted-by":"publisher","first-page":"149","DOI":"10.3109\/09540261.2012.656306","volume":"24","author":"M Luciano","year":"2012","unstructured":"Luciano M, Sampogna G, del Vecchio V, Giacco D, Mul\u00e8 A, Maj M, et al. The family in Italy: cultural changes and implications for treatment. Int Rev Psychiatry. 2012;24(2):149\u201356. https:\/\/doi.org\/10.3109\/09540261.2012.656306","journal-title":"Int Rev Psychiatry"},{"issue":"3","key":"1742_CR64","doi-asserted-by":"publisher","first-page":"609","DOI":"10.1111\/jan.15063","volume":"78","author":"NG Rodrigues","year":"2022","unstructured":"Rodrigues NG, Han CQY, Su Y, Klainin-Yobas P, Wu XV. Psychological impacts and online interventions of social isolation amongst older adults during COVID-19 pandemic: a scoping review. J Adv Nurs. 2022;78(3):609\u201344. https:\/\/doi.org\/10.1111\/jan.15063","journal-title":"J Adv Nurs"},{"issue":"4","key":"1742_CR65","doi-asserted-by":"publisher","first-page":"677","DOI":"10.3233\/PRM-210002","volume":"15","author":"A St\u0119pie\u0144","year":"2022","unstructured":"St\u0119pie\u0144 A, Sobi\u0144ska M, Rekowski W, Krawczyk MJ. Pandemic decrease of in-person physiotherapy as a factor in parent perceived decline in function in children with neuromuscular disorders. J Pediatr Rehabil Med. 2022;15(4):677\u201389. https:\/\/doi.org\/10.3233\/PRM-210002","journal-title":"J Pediatr Rehabil Med"},{"issue":"2","key":"1742_CR66","doi-asserted-by":"publisher","first-page":"165","DOI":"10.1111\/1467-8578.12173","volume":"44","author":"J Hoskin","year":"2017","unstructured":"Hoskin J. Taking charge and letting go: exploring the ways a transition to Adulthood project for teenagers with Duchenne muscular dystrophy has supported parents to prepare for the future. Br J Spec Educ. 2017;44(2):165\u201385. https:\/\/doi.org\/10.1111\/1467-8578.12173","journal-title":"Br J Spec Educ"},{"key":"1742_CR67","doi-asserted-by":"publisher","first-page":"S43","DOI":"10.1016\/j.scispo.2014.08.086","volume":"29","author":"M Irmler","year":"2014","unstructured":"Irmler M, Gebhard B. Psychomotor intervention to enhance self-and body-concept in children with Duchenne muscular dystrophy. Sci Sports. 2014;29:S43\u20134. https:\/\/doi.org\/10.1016\/j.scispo.2014.08.086","journal-title":"Sci Sports"},{"issue":"7","key":"1742_CR68","doi-asserted-by":"publisher","first-page":"509","DOI":"10.1016\/S2215-0366(23)00175-X","volume":"10","author":"JM Armitage","year":"2023","unstructured":"Armitage JM, Kwong ASF, Tseliou F, Sellers R, Blakey R, Anthony R, et al. Cross-cohort change in parent-reported emotional problem trajectories across childhood and adolescence in the UK. Lancet Psychiatry. 2023;10(7):509\u201317. https:\/\/doi.org\/10.1016\/S2215-0366(23)00175-X","journal-title":"Lancet Psychiatry"},{"issue":"11","key":"1742_CR69","doi-asserted-by":"publisher","first-page":"e2345073","DOI":"10.1001\/jamanetworkopen.2023.45073","volume":"6","author":"S Collier Villaume","year":"2023","unstructured":"Collier Villaume S, Chen S, Adam EK. Age disparities in prevalence of anxiety and Depression among US adults during the COVID-19 pandemic. JAMA Netw Open. 2023;6(11):e2345073. https:\/\/doi.org\/10.1001\/jamanetworkopen.2023.45073","journal-title":"JAMA Netw Open"},{"issue":"2","key":"1742_CR70","doi-asserted-by":"publisher","first-page":"171","DOI":"10.1007\/s10862-014-9448-8","volume":"37","author":"MY Ivanova","year":"2015","unstructured":"Ivanova MY, Achenbach TM, Rescorla LA, Tumer LV, Ahmeti-Pronaj A, Au A, et al. Syndromes of self-reported psychopathology for Ages 18\u201359 in 29 societies. J Psychopathol Behav Assess. 2015;37(2):171\u201383. https:\/\/doi.org\/10.1007\/s10862-014-9448-8","journal-title":"J Psychopathol Behav Assess"}],"container-title":["BMC Psychology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40359-024-01742-5.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s40359-024-01742-5\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40359-024-01742-5.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,4,29]],"date-time":"2024-04-29T13:12:51Z","timestamp":1714396371000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmcpsychology.biomedcentral.com\/articles\/10.1186\/s40359-024-01742-5"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,4,29]]},"references-count":70,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2024,12]]}},"alternative-id":["1742"],"URL":"https:\/\/doi.org\/10.1186\/s40359-024-01742-5","relation":{},"ISSN":["2050-7283"],"issn-type":[{"value":"2050-7283","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,4,29]]},"assertion":[{"value":"6 November 2023","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"21 April 2024","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"29 April 2024","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The present study was approved by the local Ethics Committees of Scientific Institute IRCCS \u201cE. Medea\u201d, IRCCS \u201cOspedale San Raffaele\u201d, and IRCCS \u201cMondino Foundation\u201d Pavia. The study was carried out in accordance with the Helsinki Declaration. Informed consent was obtained for all participants or parents\/legal tutors of minors prior to participation.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"243"}}