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• W4367304437 abstract "<h3>Objective:</h3> To quantify healthcare resource use (HRU) and mortality associated with adrenomyeloneuropathy (AMN) in X-linked Adrenoleukodystrophy (ALD). <h3>Background:</h3> AMN is a neurodegenerative disease caused by mutations in <i>ABCD1</i> resulting in progressive myeloneuropathy causing spastic paraparesis, sensory ataxia, loss of mobility, incontinence, and sexual dysfunction. AMN’s impact on HRU and mortality is unknown. <h3>Design/Methods:</h3> HRU was assessed using commercial insurance claims from IQVIA’s PharMetrics Plus database (1/01/2006–6/30/2021). The AMN cohort comprised men 18–64y with ≥1 inpatient or ≥2 outpatient claims containing an AMN diagnosis (ICD-10-CM: E71.52x; ICD-9-CM 277.86) and no evidence of childhood cerebral adrenoleukodystrophy or other peroxisomal disorders. AMN patients were 1:4 matched and compared to non-AMN individuals. Separately, mortality rates and age at death were assessed in the Medicare Limited Dataset (all ages). <h3>Results:</h3> We identified 303 AMN men with mean age 35.1±13.8y, followed for average 29 months. Per year, AMN men had greater inpatient admissions (0.39 vs. 0.04); outpatient clinic (8.76 vs. 4.11), hospital (5.32 vs. 0.88) and home healthcare visits (4.57 vs. 0.24); and more durable medical equipment claims (0.70 vs. 0.13). Length-of-stay (8.78 vs. 4.32 days) was longer in AMN and they utilized more prescription medications (18.1 vs 5.4 pharmacy fills/year) than non-AMN. Comorbidities were more common in AMN compared to controls, including peripheral vascular disease (4.6%), chronic pulmonary disease (6.3%), and liver disease (5.6%). Mortality rates among male AMN Medicare enrollees were 5.3x higher for ages 18–64y (39.3% vs. 7.4%) and 2.2x for ≥65y (48.6% vs. 22.4%), both p<0.001). Age at death was younger for male AMN enrollees 18–64y (47.0±11.3 vs. 56.5±7.8, p<0.001). <h3>Conclusions:</h3> AMN imposes a substantial and previously under-recognized health burden for men with ALD, including more medical comorbidities, more healthcare use, higher mortality rates, and, in some subgroups, younger age at death. Further research to fully elucidate these findings is needed. <b>Disclosure:</b> Dr. Bonkowsky has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Bluebird bio. Dr. Bonkowsky has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Neurogene. Dr. Bonkowsky has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Passage Bio. Dr. Bonkowsky has received personal compensation in the range of $0-$499 for serving as a Consultant for Takeda. Dr. Bonkowsky has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Autobahn. Dr. Bonkowsky has received stock or an ownership interest from Orchard. The institution of Dr. Bonkowsky has received research support from NIH. An immediate family member of Dr. Bonkowsky has received intellectual property interests from a discovery or technology relating to health care. Dr. Bonkowsky has received publishing royalties from a publication relating to health care. Ms. Healey has received personal compensation for serving as an employee of PrecisionHEOR. Naomi Sacks has nothing to disclose. Ms. McLin has received personal compensation for serving as an employee of Precision Medicine Group. Philip Cyr has received personal compensation for serving as an employee of PRECISIONheor. Eileen Sawyer has received personal compensation for serving as an employee of uniQure Inc. Eileen Sawyer has received stock or an ownership interest from uniQure Inc. Dr. Stephen has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for SwanBio Therapeutics. The institution of Dr. Stephen has received research support from Sanofi. Dr. Stephen has received research support from National Institutes of Health. An immediate family member of Dr. Eichler has received personal compensation for serving as an employee of UpToDate. Dr. Eichler has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for SwanBio Therapeutics. Dr. Eichler has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Alnylam. Dr. Eichler has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Origin Biosciences. Dr. Eichler has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Orchard Therapeutics. Dr. Eichler has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Autobahn Therapeutics. Dr. Eichler has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Bluebird Bio. Dr. Eichler has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for UpToDate. Dr. Eichler has received stock or an ownership interest from SwanBio Therapeutics. The institution of Dr. Eichler has received research support from Bluebird Bio. The institution of Dr. Eichler has received research support from Minoryx Therpeutics. The institution of Dr. Eichler has received research support from Sio Therapeutics. Dr. Eichler has received intellectual property interests from a discovery or technology relating to health care." @default.
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• W4367304437 date "2023-04-25" @default.
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• W4367304437 title "Substantial Burden of Illness and Mortality in Adult Men with Adrenomyeloneuropathy: A Retrospective Study of Real World Data (P12-4.004)" @default.
• W4367304437 doi "https://doi.org/10.1212/wnl.0000000000202528" @default.
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