Publications by authors named "D Abeln"
Article Synopsis
- - The study highlights significant dissatisfaction among PKU patients and professionals with current home sampling methods, particularly regarding sample collection frequency and lengthy turn-around times.
- - A survey of 210 parents, 156 patients, and 95 professionals revealed that many patients take fewer samples than recommended, and there's a general sentiment of wanting better testing methods.
- - There is strong interest in point-of-care testing (POCT), with 97% of parents willing to use a device, though concerns regarding cost, accuracy, and other factors were raised.
Objectives: Dietary treatment in phenylketonuria (PKU) is known to cause eating problems, but knowledge of both prevalence and magnitude, especially for social restrictions, is scarce. Our aim was to evaluate the social restrictions and eating problems that children with PKU and their caregivers experience with dietary treatment.
Methods: A web-based questionnaire, based on the Behavioral Pediatrics Feeding Assessment Scale with additional PKU-specific questions, was developed in close collaboration with and distributed by the Dutch PKU Association, which sent an e-mail to its members containing a link to the questionnaire.
Patient's thoughts and expectations about centres of expertise for PKU.
Orphanet J Rare Dis
January 2021
Background: In the Netherlands (NL) the government assigned 2 hospitals as centres of expertise (CE) for Phenylketonuria (PKU), while in the United Kingdom (UK) and Germany no centres are assigned specifically as PKU CE's.
Methods: To identify expectations of patients/caregivers with PKU of CEs, a web-based survey was distributed through the national Phenylketonuria societies of Germany, NL and UK.
Results: In total, 105 responded (43 patients, 56 parents, 4 grandparents, 2 other) of whom 59 were from NL, 33 from UK and 13 from Germany.
Phenylketonuria and tyrosinemia type 1 are treated with dietary phenylalanine (Phe) restriction. Aspartame is a Phe-containing synthetic sweetener used in many products, including many 'regular' soft drinks. Its amount is (often) not declared; therefore, patients are advised not to consume aspartame-containing foods.
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