ArticleMolecular genetics and metabolism2026
Finding comfort in complexity: The role of palliative care in children with leukodystrophy.
Article in Molecular genetics and metabolism, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
introductionChildren with leukodystrophy experience progressive physical and cognitive decline, which can lead to suffering. Palliative care consultation can help with multimodal symptom management, building trust with medical teams, and managing advanced care planning in children with severe neurological impairment.
objectivesTo evaluate palliative care's role, timing, and impact on end-of-life for children with leukodystrophy.
methodsSingle-center retrospective chart review conducted on patients (0-18 years) with leukodystrophy at Children's Healthcare of Atlanta from 2016 to 2023.
results206 patient charts were included. Of all patients with leukodystrophy, 26% (53/206) had a palliative care consultation. It took average interval of 2.4 years from date of diagnosis to palliative care consultation. The hospitalist team (38%) and ICU team (26%) placed most referrals. Of the cohort, 20% (41/206) of the patients had died, average age of death 5.2 years. Of deceased, 63% (27/41) had a palliative care consult. 54% (22/41) of the deceased were enrolled in hospice. 29% (11/41) of deceased had full code status, 42% (16/41) were DNR/DNI, and 29% (11/41) were exclusively DNR. Most patients with leukodystrophy who died did so in the hospital, 37% (n = 13) of whom died in the ICU and 17% (n = 6) on the acute care floors. More than a quarter of those that died, 40% (n = 14), died at home. In the deceased, those enrolled in hospice were more likely DNR/DNI and to die at home instead of the hospital (p = 0.019, p < 0.001). In the deceased, there was no statistical difference in number of days admitted nor in number of hospitalizations in the last year of life between those enrolled and not enrolled in hospice (p = 0.871, p = 0.077).
conclusionPediatric patients and caregivers can benefit from goals of care conversations and advanced care planning while navigating the neurodegenerative disease process. There are unique psychosocial and medical needs in leukodystrophy population, and many opportunities to improve neuro-palliative integration early in the disease course for children with leukodystrophy.
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