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In the treatment era, a holistic patient-centred approach that looks beyond outcomes of survival and motor function is critical and must incorporate everyday functioning (\u201cadaptive functioning\u201d) and participation.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A literature review was conducted using PubMed, drawing on articles published until 2025. Keywords included: \u201cspinal muscular atrophy\u201d, \u201cadaptive function\u201d, \u201cadaptive behaviour\u201d, \u201cthe International Classification of Functioning, Disability and Health\u201d, \u201cfunction\u201d, \u201cparticipation\u201d and \u201cpatient-reported outcome measures\u201d. Articles were screened and included on the basis of their contextual relevance to the current SMA care paradigm, with preference given to studies providing insights into the application of the International Classification of Functioning, Disability and Health (ICF), and adaptive functioning.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>This review highlights the growing importance of everyday functioning and participation within the contemporary SMA treatment paradigm. Current evidence suggests that adaptive functioning is affected across mobility, self-care, social, and neurodevelopmental domains. The ICF provides a practical and multidimensional framework that supports a holistic assessment approach, extending beyond traditional performance-based and motor-focused outcomes to better capture capabilities in everyday functioning, including outcomes that directly influence independence, participation, and quality of life for children with SMA and their families. Furthermore, the ICF may assist in identifying treatment goals, guiding personalised management, and facilitating multidisciplinary collaboration. A limitation of current evidence is that thus far studies have predominately been completed prior to the advent of SMN\u00a0augmenting therapies, emphasising the necessity of assessing adaptive functioning, especially in the domain of patient-reported outcome measures, to support personalised care and meaningful long-term outcome assessment.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>The ICF is highly applicable for applying a holistic management approach for SMA in the treatment era, enabling SMA to be conceptualised through a multidimensional lens. Developing a minimum set of core SMA outcomes which incorporate the ICF framework and aim to understand and improve outcomes is a priority and of practical relevance to people with SMA, families and clinicians. This approach promotes an essential paradigm shift by emphasising functioning and participation as key focuses within clinical care and research.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1007\/s12519-026-01063-0","type":"journal-article","created":{"date-parts":[[2026,7,22]],"date-time":"2026-07-22T15:52:09Z","timestamp":1784735529000},"page":"728-740","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Strengthening adaptive functioning and participation in the contemporary spinal muscular atrophy paradigm: clinical perspectives and future directions"],"prefix":"10.1007","volume":"22","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2092-3596","authenticated-orcid":false,"given":"Emily E.","family":"Farah","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle A.","family":"Farrar","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Didu S.","family":"Kariyawasam","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah-Grace","family":"Paguinto","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,7,22]]},"reference":[{"key":"1063_CR1","doi-asserted-by":"publisher","first-page":"27","DOI":"10.1038\/ejhg.2011.134","volume":"20","author":"EA Sugarman","year":"2012","unstructured":"Sugarman EA, Nagan N, Zhu H, Akmaev VR, Zhou Z, Rohlfs EM, et al. 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Other declarations: FEE: scholarship from UNSW for research in an area of developmental birth defects. FMA: site principal investigator for Roche, and Novartis Gene Therapies, Inc., SMA clinical trials, and the institution has received funds for contract research related to the conduct of these trials. FMA has received honoraria for advisory board participation and participation in educational events from Biogen, Novartis, and Roche, speaker\u2019s fees from Biogen and Novartis. FMA serves as a medical director on the board of Muscular Dystrophy NSW (not-for-profit). KDS has received honoraria for advisory board participation from Biogen and speaker\u2019s fees from Biogen, Novartis and Roche. PSG has received honoraria for education event participation from Biogen.","order":1,"name":"Ethics","label":"Conflict of interest","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Ethical approval was not required for this study.","order":2,"name":"Ethics","label":"Ethical approval","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Not applicable.","order":3,"name":"Ethics","label":"Consent to participate","group":{"name":"EthicsHeading","label":"Declarations"}}]}}