Abstract Details

Title Health-Related Quality of Life in a Cohort of Children with Acquired Demyelinating Diseases

Topic MS and Related Diseases

Presentation(s) P02 - (-)

Poster/Presentation
Number 120

Objective

Background BACKGROUND: Knowledge about multiple sclerosis and other demyelinating diseases in children is rapidly expanding. Identifying the clinical determinants of quality of life in those patients will help guide therapy to obtain the greatest benefits.

Design/Methods DESIGN/METHODS: A prospective cohort of patients with acquired demyelinating syndromes (ADS) age 16 years or younger at diagnosis were recruited via the Canadian Pediatric Demyelinating Network (over 23 sites distributed across Canada), with comprehensive clinical data gathered at diagnosis and at follow-up visits at 3, 6 and 12 months, and annually thereafter. Health-related quality of life was evaluated using the PedsQL 4.0 Pediatric Quality of Life Inventory self-reported questionnaire as well as relevant additional modules (Multidimensional Fatigue Scale and Family Impact Module). The caretaker-reported version of the questionnaire was used for patients 2 to 5 years old, for which a self-reported questionnaire is not available. Quality of life questionnaires were distributed from 2011 onward, and the first evaluation for each patient was used to obtain a cross-sectional overview of the patient population, correlating with relevant clinical and demographic variables.

Results RESULTS: Appropriate quality of life data was available for 106 patients with ADS (23 optic neuritis, 20 transverse myelitis, 33 acute disseminated encephalomyelitis, 22 relapsing-remitting multiple sclerosis, 8 unclassified ADS). HRQoL was not below the previously described threshold for at-risk status and did not differ significantly between diagnostic categories. Fatigue (as assessed by the Multidimensional Fatigue Scale) and impaired mobility were the strongest predictors of a lower HRQoL score. None of the other clinical variables evaluated demonstrated a significant association with HRQoL.

Conclusions CONCLUSIONS: Fatigue and impaired mobility correlated with a worse health-related quality of life in children with acquired demyelinating syndromes and potentially represent resource-effective therapeutic targets.

Authors/Disclosures
David Dufresne, MD (Universite De Sherbrooke) PRESENTER	No disclosure on file
Brenda L. Banwell, MD, FAAN (Johns Hopkins University)	Dr. Banwell has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Novartis. Dr. Banwell has received personal compensation in the range of $0-$499 for serving as a Consultant for UCB. Dr. Banwell has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Roche. Dr. Banwell has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Janssen. Dr. Banwell has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Genentech. Dr. Banwell has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis. The institution of Dr. Banwell has received research support from National MS Society. The institution of Dr. Banwell has received research support from NIH.
Marie-Emmanuelle Dilenge, MD	No disclosure on file
Douglas L. Arnold, MD, FAAN (Montreal Neurological Institute, McGill Univ)	Dr. Arnold has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Biogen. Dr. Arnold has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for BMS. Dr. Arnold has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Frequency Therapeutics. Dr. Arnold has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Merck. Dr. Arnold has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Novartis. Dr. Arnold has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Roche. Dr. Arnold has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Sanofi. Dr. Arnold has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Shionogi. Dr. Arnold has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Xfacto communications. Dr. Arnold has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Eli Lilly. Dr. Arnold has received personal compensation in the range of $500-$4,999 for serving as a Consultant for EMD Serono. Dr. Arnold has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biohaven. Dr. Arnold has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Find therapeutics. Dr. Arnold has received personal compensation in the range of $500-$4,999 for serving as a Consultant for GSK. Dr. Arnold has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Idorsia. Dr. Arnold has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Kiniksa. Dr. Arnold has received personal compensation in the range of $100,000-$499,999 for serving as a Consultant for Clario.

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