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We evaluated factors influencing QOL in individuals with developmental and epileptic encephalopathy (DEE) and other severe neurodevelopmental encephalopathy conditions using hypothesis-free regression tree analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      A questionnaire was completed by 242 caregivers of individuals two years or older. QOL was measured using the Quality of Life Inventory-Disability (QI-Disability). Independent variables described health, functional abilities and daily activities. The R package\n                      <jats:italic>rpart<\/jats:italic>\n                      was used to build the regression trees to explore the most influential factors associated with QOL.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Median age was 8.8y (interquartile range 4.6\u201314.9 y). Mean total QI-Disability score was 60.2 \u00b1 14.1 out of a total possible score of 100. The subgroup with the lowest QOL scores comprised individuals with low (raw score\u2009&lt;\u20094) cognition scores measured with the Developmental Profile-4 (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200952, mean score 46.4) whereas higher QOL scores were achieved by individuals with higher cognition scores and capacity to engage actively when using a touchscreen (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u2009123, mean score 67.5).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Regression tree analysis suggests that cognition and use of touchscreens were important factors for QOL. Findings suggest small neurodevelopmental and functional gains may meaningfully improve quality of life for individuals with severe neurodevelopmental encephalopathy.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1007\/s11136-025-04153-0","type":"journal-article","created":{"date-parts":[[2026,1,14]],"date-time":"2026-01-14T12:39:24Z","timestamp":1768394364000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Caregiver-reported quality of life in individuals with developmental and epileptic encephalopathy and other severe neurodevelopmental encephalopathies"],"prefix":"10.1007","volume":"35","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8934-7267","authenticated-orcid":false,"given":"Natasha N.","family":"Ludwig","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3705-5323","authenticated-orcid":false,"given":"Melissa K.","family":"Licari","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-5595-0419","authenticated-orcid":false,"given":"Mary","family":"Wojnaroski","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3274-0292","authenticated-orcid":false,"given":"Gabrielle","family":"Conecker","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0001-2704-5044","authenticated-orcid":false,"given":"JayEtta","family":"Hecker","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0005-4800-6182","authenticated-orcid":false,"given":"Rebecca","family":"Hommer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5307-0692","authenticated-orcid":false,"given":"Kelly","family":"Muzyczka","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5092-7697","authenticated-orcid":false,"given":"Peter","family":"Jacoby","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7358-9037","authenticated-orcid":false,"given":"Jenny","family":"Downs","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,1,14]]},"reference":[{"issue":"1","key":"4153_CR1","doi-asserted-by":"publisher","first-page":"250","DOI":"10.1111\/jar.12803","volume":"34","author":"B Maes","year":"2021","unstructured":"Maes, B., Nijs, S., Vandesande, S., Van Keer, I., Arthur-Kelly, M., Dind, J., Goldbart, J., Petitpierre, G., & Van der Putten, A. 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Any remuneration has been made to her department. The remaining authors have no conflict of interest to disclose.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"This study was performed in line with the principles of the Declaration of Helsinki. The study protocol was reviewed and determined to be exempt by the North Star Ethics Review Board (protocol # NB300112), with acknowledgement from the institution review boards of the Johns Hopkins School of Medicine and Nationwide Children\u2019s Hospital. 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