{"id":"https://openalex.org/W4414801422","doi":"https://doi.org/10.1016/j.nmd.2025.105890","title":"256PSelf-reported activity levels and associated levels of personal meaning in adults with Duchenne muscular dystrophy: using the MAPA-F and EMAS to inform need for psychological intervention","display_name":"256PSelf-reported activity levels and associated levels of personal meaning in adults with Duchenne muscular dystrophy: using the MAPA-F and EMAS to inform need for psychological intervention","publication_year":2025,"publication_date":"2025-09-01","ids":{"openalex":"https://openalex.org/W4414801422","doi":"https://doi.org/10.1016/j.nmd.2025.105890"},"language":"en","primary_location":{"id":"doi:10.1016/j.nmd.2025.105890","doi":"https://doi.org/10.1016/j.nmd.2025.105890","is_oa":false,"landing_page_url":"https://doi.org/10.1016/j.nmd.2025.105890","pdf_url":null,"source":{"id":"https://openalex.org/S50004817","display_name":"Neuromuscular Disorders","issn_l":"0960-8966","issn":["0960-8966","1873-2364"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","russia-white-list-2","vabb-shw"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Neuromuscular Disorders","raw_type":"journal-article"},"volume":null,"type":"article","is_traditional":true,"indexed_in":["crossref"],"open_access":{"is_oa":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5119837962","display_name":"C. Bonney-Murrell","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I1340918713","display_name":"University College London Hospitals NHS Foundation Trust","ror":"https://ror.org/042fqyp44","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I1340918713"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"C. Bonney-Murrell","raw_affiliation_strings":["Univ College London Hospitals NHS Foundation Trust, London, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Univ College London Hospitals NHS Foundation Trust, London, UK","institution_ids":["https://openalex.org/I1340918713"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5021242945","display_name":"Linda Bouquillon","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I1340918713","display_name":"University College London Hospitals NHS Foundation Trust","ror":"https://ror.org/042fqyp44","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I1340918713"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"L. Bouquillon","raw_affiliation_strings":["Univ College London Hospitals NHS Foundation Trust, London, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Univ College London Hospitals NHS Foundation Trust, London, UK","institution_ids":["https://openalex.org/I1340918713"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5040853608","display_name":"Reid McDonald","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I1340918713","display_name":"University College London Hospitals NHS Foundation Trust","ror":"https://ror.org/042fqyp44","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I1340918713"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"R. McDonald","raw_affiliation_strings":["Univ College London Hospitals NHS Foundation Trust, London, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Univ College London Hospitals NHS Foundation Trust, London, UK","institution_ids":["https://openalex.org/I1340918713"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5028118504","display_name":"Talia Eilon","orcid":"https://orcid.org/0000-0001-5250-0806","observed_orcids":["https://orcid.org/0000-0001-5250-0806"]},"institutions":[{"id":"https://openalex.org/I1340918713","display_name":"University College London Hospitals NHS Foundation Trust","ror":"https://ror.org/042fqyp44","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I1340918713"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"T. Eilon","raw_affiliation_strings":["Univ College London Hospitals NHS Foundation Trust, London, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Univ College London Hospitals NHS Foundation Trust, London, UK","institution_ids":["https://openalex.org/I1340918713"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5060274042","display_name":"Chloe Geagan","orcid":"https://orcid.org/0009-0007-5393-8456","observed_orcids":["https://orcid.org/0009-0007-5393-8456"]},"institutions":[{"id":"https://openalex.org/I84884186","display_name":"Newcastle University","ror":"https://ror.org/01kj2bm70","country_code":"GB","type":"education","lineage":["https://openalex.org/I84884186"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"C. Geagan","raw_affiliation_strings":["John Walton Muscular Dystrophy Research Centre, Newcastle University, Newcastle, UK","Newcastle Hospitals NHS Foundation Trust, Newcastle, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"John Walton Muscular Dystrophy Research Centre, Newcastle University, Newcastle, UK","institution_ids":["https://openalex.org/I84884186"]},{"raw_affiliation_string":"Newcastle Hospitals NHS Foundation Trust, Newcastle, UK","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5090693335","display_name":"Rory Conn","orcid":"https://orcid.org/0009-0007-8612-4598","observed_orcids":["https://orcid.org/0009-0007-8612-4598"]},"institutions":[{"id":"https://openalex.org/I4405257583","display_name":"Royal Devon University Healthcare NHS Foundation Trust","ror":"https://ror.org/05e5ahc59","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I4405257583"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"R. Conn","raw_affiliation_strings":["Royal Devon Univ Healthcare NHS Foundation Trust, Devon, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Royal Devon Univ Healthcare NHS Foundation Trust, Devon, UK","institution_ids":["https://openalex.org/I4405257583"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5073047067","display_name":"S. Rodney","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I4210113488","display_name":"Duchenne Research Fund","ror":"https://ror.org/024wrmf62","country_code":"GB","type":"nonprofit","lineage":["https://openalex.org/I4210113488"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"S. Rodney","raw_affiliation_strings":["The Duchenne Research Fund, London, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"The Duchenne Research Fund, London, UK","institution_ids":["https://openalex.org/I4210113488"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5046976463","display_name":"C. Turner","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I84884186","display_name":"Newcastle University","ror":"https://ror.org/01kj2bm70","country_code":"GB","type":"education","lineage":["https://openalex.org/I84884186"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"C. Turner","raw_affiliation_strings":["John Walton Muscular Dystrophy Research Centre, Newcastle University, Newcastle, UK","Newcastle Hospitals NHS Foundation Trust, Newcastle, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"John Walton Muscular Dystrophy Research Centre, Newcastle University, Newcastle, UK","institution_ids":["https://openalex.org/I84884186"]},{"raw_affiliation_string":"Newcastle Hospitals NHS Foundation Trust, Newcastle, UK","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5012227405","display_name":"Michela Guglieri","orcid":"https://orcid.org/0000-0002-8455-0637","observed_orcids":["https://orcid.org/0000-0002-8455-0637"]},"institutions":[{"id":"https://openalex.org/I84884186","display_name":"Newcastle University","ror":"https://ror.org/01kj2bm70","country_code":"GB","type":"education","lineage":["https://openalex.org/I84884186"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"M. Guglieri","raw_affiliation_strings":["John Walton Muscular Dystrophy Research Centre, Newcastle University, Newcastle, UK","Newcastle Hospitals NHS Foundation Trust, Newcastle, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"John Walton Muscular Dystrophy Research Centre, Newcastle University, Newcastle, UK","institution_ids":["https://openalex.org/I84884186"]},{"raw_affiliation_string":"Newcastle Hospitals NHS Foundation Trust, Newcastle, UK","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5023248855","display_name":"Volker W. Straub","orcid":"https://orcid.org/0000-0001-9046-3540","observed_orcids":["https://orcid.org/0000-0001-9046-3540"]},"institutions":[{"id":"https://openalex.org/I84884186","display_name":"Newcastle University","ror":"https://ror.org/01kj2bm70","country_code":"GB","type":"education","lineage":["https://openalex.org/I84884186"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"V. Straub","raw_affiliation_strings":["John Walton Muscular Dystrophy Research Centre, Newcastle University, Newcastle, UK","Newcastle Hospitals NHS Foundation Trust, Newcastle, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"John Walton Muscular Dystrophy Research Centre, Newcastle University, Newcastle, UK","institution_ids":["https://openalex.org/I84884186"]},{"raw_affiliation_string":"Newcastle Hospitals NHS Foundation Trust, Newcastle, UK","institution_ids":[]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5087054041","display_name":"Rosaline C. M. Quinlivan","orcid":"https://orcid.org/0000-0002-2306-4782","observed_orcids":["https://orcid.org/0000-0002-2306-4782","https://orcid.org/0000-0001-5976-4708"]},"institutions":[{"id":"https://openalex.org/I1340918713","display_name":"University College London Hospitals NHS Foundation Trust","ror":"https://ror.org/042fqyp44","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I1340918713"]},{"id":"https://openalex.org/I45129253","display_name":"University College London","ror":"https://ror.org/02jx3x895","country_code":"GB","type":"education","lineage":["https://openalex.org/I124357947","https://openalex.org/I45129253"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"R. Quinlivan","raw_affiliation_strings":["Univ College London Hospitals NHS Foundation Trust, London, UK","Univ College London, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Univ College London Hospitals NHS Foundation Trust, London, UK","institution_ids":["https://openalex.org/I1340918713"]},{"raw_affiliation_string":"Univ College London, UK","institution_ids":["https://openalex.org/I45129253"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":5,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":{"value":3470,"currency":"USD","value_usd":3470},"apc_paid":null,"fwci":0.0,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":{"value":0.0,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":"53","issue":null,"first_page":"105890","last_page":"105890"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T12400","display_name":"Neurogenetic and Muscular Disorders Research","score":0.6133000254631042,"subfield":{"id":"https://openalex.org/subfields/2716","display_name":"Genetics (clinical)"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T12400","display_name":"Neurogenetic and Muscular Disorders Research","score":0.6133000254631042,"subfield":{"id":"https://openalex.org/subfields/2716","display_name":"Genetics (clinical)"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T11632","display_name":"Family and Disability Support Research","score":0.07450000196695328,"subfield":{"id":"https://openalex.org/subfields/3203","display_name":"Clinical Psychology"},"field":{"id":"https://openalex.org/fields/32","display_name":"Psychology"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T10441","display_name":"Muscle Physiology and Disorders","score":0.03689999878406525,"subfield":{"id":"https://openalex.org/subfields/1312","display_name":"Molecular Biology"},"field":{"id":"https://openalex.org/fields/13","display_name":"Biochemistry, Genetics and Molecular Biology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/duchenne-muscular-dystrophy","display_name":"Duchenne muscular dystrophy","score":1.0},{"id":"https://openalex.org/keywords/meaningful-activities","display_name":"meaningful activities","score":0.7409999966621399},{"id":"https://openalex.org/keywords/personal-meaning","display_name":"personal meaning","score":0.6830000281333923},{"id":"https://openalex.org/keywords/psychological-screening","display_name":"psychological screening","score":0.7310000061988831},{"id":"https://openalex.org/keywords/psychosocial-care","display_name":"psychosocial care","score":0.6949999928474426},{"id":"https://openalex.org/keywords/activity-frequency","display_name":"activity frequency","score":0.36800000071525574},{"id":"https://openalex.org/keywords/psychological-formulation","display_name":"psychological formulation","score":0.3310000002384186}],"concepts":[{"id":"https://openalex.org/C150966472","wikidata":"https://www.wikidata.org/wiki/Q3410145","display_name":"Psychosocial","level":2,"score":0.8062000274658203},{"id":"https://openalex.org/C2780665704","wikidata":"https://www.wikidata.org/wiki/Q959298","display_name":"Intervention (counseling)","level":2,"score":0.7186999917030334},{"id":"https://openalex.org/C2780876879","wikidata":"https://www.wikidata.org/wiki/Q3054749","display_name":"Meaning (existential)","level":2,"score":0.531499981880188},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.5224999785423279},{"id":"https://openalex.org/C2778943923","wikidata":"https://www.wikidata.org/wiki/Q1648484","display_name":"Duchenne muscular dystrophy","level":2,"score":0.4772999882698059},{"id":"https://openalex.org/C70410870","wikidata":"https://www.wikidata.org/wiki/Q199906","display_name":"Clinical psychology","level":1,"score":0.46720001101493835},{"id":"https://openalex.org/C27415008","wikidata":"https://www.wikidata.org/wiki/Q7256382","display_name":"Psychological intervention","level":2,"score":0.42800000309944153},{"id":"https://openalex.org/C169900460","wikidata":"https://www.wikidata.org/wiki/Q2200417","display_name":"Cognition","level":2,"score":0.40299999713897705},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.3767000138759613},{"id":"https://openalex.org/C16568411","wikidata":"https://www.wikidata.org/wiki/Q83042","display_name":"Neurology","level":2,"score":0.3472000062465668},{"id":"https://openalex.org/C1862650","wikidata":"https://www.wikidata.org/wiki/Q186005","display_name":"Physical therapy","level":1,"score":0.32350000739097595},{"id":"https://openalex.org/C163515075","wikidata":"https://www.wikidata.org/wiki/Q873512","display_name":"Psychological testing","level":2,"score":0.2955000102519989},{"id":"https://openalex.org/C2780378061","wikidata":"https://www.wikidata.org/wiki/Q25351891","display_name":"Service (business)","level":2,"score":0.2867000102996826},{"id":"https://openalex.org/C2779473830","wikidata":"https://www.wikidata.org/wiki/Q1540899","display_name":"MEDLINE","level":2,"score":0.2809000015258789},{"id":"https://openalex.org/C2779974597","wikidata":"https://www.wikidata.org/wiki/Q28448986","display_name":"Clinical Practice","level":2,"score":0.27459999918937683},{"id":"https://openalex.org/C113470044","wikidata":"https://www.wikidata.org/wiki/Q6056506","display_name":"Interpretative phenomenological analysis","level":3,"score":0.274399995803833},{"id":"https://openalex.org/C205545832","wikidata":"https://www.wikidata.org/wiki/Q17156455","display_name":"Young adult","level":2,"score":0.2612999975681305}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.1016/j.nmd.2025.105890","doi":"https://doi.org/10.1016/j.nmd.2025.105890","is_oa":false,"landing_page_url":"https://doi.org/10.1016/j.nmd.2025.105890","pdf_url":null,"source":{"id":"https://openalex.org/S50004817","display_name":"Neuromuscular Disorders","issn_l":"0960-8966","issn":["0960-8966","1873-2364"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","russia-white-list-2","vabb-shw"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Neuromuscular Disorders","raw_type":"journal-article"}],"best_oa_location":null,"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","score":1.0,"display_name":"Good health and well-being"}],"study_designs":[{"id":"https://openalex.org/study-designs/observational-study","display_name":"Observational Study"}],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W7222194548","https://openalex.org/W2513874224","https://openalex.org/W3209275225","https://openalex.org/W2097024559","https://openalex.org/W2560816310","https://openalex.org/W2084477427","https://openalex.org/W4403139875","https://openalex.org/W2022451074","https://openalex.org/W4220941266","https://openalex.org/W4387307781"],"abstract_inverted_index":null,"counts_by_year":[],"updated_date":"2026-11-10T11:39:43.021295","created_date":"2025-10-10T00:00:00"}