| Title |
Management of adult patients with phenylketonuria: survey results from 24 countries
|
|---|---|
| Published in |
European Journal of Pediatrics, December 2014
|
| DOI | 10.1007/s00431-014-2458-4 |
| Pubmed ID | |
| Authors |
Friedrich K. Trefz, Francjan J. van Spronsen, Anita MacDonald, François Feillet, Ania C. Muntau, Amaya Belanger-Quintana, Alberto Burlina, Mübeccel Demirkol, Marcello Giovannini, Christoph Gasteyger |
| Abstract |
Phenylketonuria (PKU) is no longer considered merely a pediatric concern; current guidelines recommend life-long treatment. However, information on the adult PKU patient population is scarce. A survey was initiated on behalf of the European PKU Group (EPG) that focused specifically on early-treated adult patients diagnosed by neonatal screening. The online survey was sent via email to 204 healthcare professionals (HCPs) in 33 countries. Eighty-one HCPs from 24 countries responded. The main findings were that the majority of adult patients with PKU in active follow-up are under 30 years of age and are managed in centers that also treat children. Seventy-eight percent of adult PKU patients in follow-up receive treatment, mainly by diet (71 %), with BH4 treatment rarely used in adulthood. Only 26 % of responding HCPs perform routine neurocognitive testing in all their adult patients. There was little consensus regarding target blood phenylalanine (Phe) concentrations, although the majority of respondents reported that their patients achieved blood Phe concentrations below 1200 μmol/l. |
X Demographics
The data shown below were collected from the profiles of 3 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United States | 1 | 33% |
| United Kingdom | 1 | 33% |
| Unknown | 1 | 33% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 2 | 67% |
| Scientists | 1 | 33% |
Mendeley readers
The data shown below were compiled from readership statistics for 53 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Denmark | 1 | 2% |
| Unknown | 52 | 98% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Ph. D. Student | 10 | 19% |
| Researcher | 10 | 19% |
| Student > Master | 7 | 13% |
| Other | 5 | 9% |
| Student > Bachelor | 5 | 9% |
| Other | 6 | 11% |
| Unknown | 10 | 19% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 17 | 32% |
| Agricultural and Biological Sciences | 11 | 21% |
| Pharmacology, Toxicology and Pharmaceutical Science | 4 | 8% |
| Nursing and Health Professions | 4 | 8% |
| Biochemistry, Genetics and Molecular Biology | 2 | 4% |
| Other | 8 | 15% |
| Unknown | 7 | 13% |
Attention Score in Context
This research output has an Altmetric Attention Score of 3. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 29 May 2015.
All research outputs
#14,590,129
of 24,598,501 outputs
Outputs from European Journal of Pediatrics
#2,620
of 4,154 outputs
Outputs of similar age
#187,677
of 370,151 outputs
Outputs of similar age from European Journal of Pediatrics
#18
of 41 outputs
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