Hiroyasu Shiozu, Daisuke Kimura, Ryoichiro Iwanaga, Shigeki Kurasawa
Participation Strategies of Parents of Children with Neurodevelopmental Disorders: An Exploratory Study
Children (Basel, Switzerland)
phenylketonuria inherited metabolic disorder leads neurobehavioral dysfunction main treatment lowphenylalanine diet andor cofactor tetrahydrobiopterin regular outpatient followup care measurement phenylalanine levels blood required aimed analyze economic burden phenylketonuria families state patients phenylketonuria divided three groups according treatment lowphenylalanine diet group n 50 tetrahydrobiopterin group n 44 group taking tetrahydrobiopterin together diet n 25 comparative cost analysis carried annual economic burden state calculated average eur 18801 15345 lowest diet group tetrahydrobiopterin group highest tetrahydrobiopterin diet group p 0001 outofpocket costs amounted eur 1531 1173 per year indirect losses averaged eur 2125 1930 per year families economic loss significantly lower families taking tetrahydrobiopterin groups p 0001 combined use medical nutrition bh4 treatments shown increase economic burden state reimbursing lowprotein products increasing number patients eligible financial allowances may reduce economic burden families