Weaning practices in phenylketonuria vary between health professionals in Europe.

Infant Phe-free infant formula Phenylalanine Phenylketonuria Weaning

Journal

Molecular genetics and metabolism reports
ISSN: 2214-4269
Titre abrégé: Mol Genet Metab Rep
Pays: United States
ID NLM: 101624422

Informations de publication

Date de publication:
Mar 2019
Historique:
received: 12 10 2018
revised: 14 11 2018
accepted: 14 11 2018
entrez: 2 2 2019
pubmed: 2 2 2019
medline: 2 2 2019
Statut: epublish

Résumé

In phenylketonuria (PKU), weaning is considered more challenging when compared to feeding healthy infants. The primary aim of weaning is to gradually replace natural protein from breast milk or standard infant formula with solids containing equivalent phenylalanine (Phe). In addition, a Phe-free second stage L-amino acid supplement is usually recommended from around 6 months to replace Phe-free infant formula. Our aim was to assess different weaning approaches used by health professionals across Europe. A cross sectional questionnaire (survey monkey®) composed of 31 multiple and single choice questions was sent to European colleagues caring for inherited metabolic disorders (IMD). Centres were grouped into geographical regions for analysis. Weaning started at 17-26 weeks in 85% ( Weaning strategies vary throughout European PKU centres. There is evidence to suggest that different infant weaning strategies may influence longer term adherence to the PKU diet or acceptance of Phe-free L-amino acid supplements; rendering prospective long-term studies important. It is essential to identify an effective weaning strategy that reduces caregiver burden but is associated with acceptable dietary adherence and optimal infant feeding development.

Sections du résumé

BACKGROUND BACKGROUND
In phenylketonuria (PKU), weaning is considered more challenging when compared to feeding healthy infants. The primary aim of weaning is to gradually replace natural protein from breast milk or standard infant formula with solids containing equivalent phenylalanine (Phe). In addition, a Phe-free second stage L-amino acid supplement is usually recommended from around 6 months to replace Phe-free infant formula. Our aim was to assess different weaning approaches used by health professionals across Europe.
METHODS METHODS
A cross sectional questionnaire (survey monkey®) composed of 31 multiple and single choice questions was sent to European colleagues caring for inherited metabolic disorders (IMD). Centres were grouped into geographical regions for analysis.
RESULTS RESULTS
Weaning started at 17-26 weeks in 85% (
CONCLUSIONS CONCLUSIONS
Weaning strategies vary throughout European PKU centres. There is evidence to suggest that different infant weaning strategies may influence longer term adherence to the PKU diet or acceptance of Phe-free L-amino acid supplements; rendering prospective long-term studies important. It is essential to identify an effective weaning strategy that reduces caregiver burden but is associated with acceptable dietary adherence and optimal infant feeding development.

Identifiants

pubmed: 30705824
doi: 10.1016/j.ymgmr.2018.11.003
pii: S2214-4269(18)30115-0
pmc: PMC6349955
doi:

Types de publication

Journal Article

Langues

eng

Pagination

39-44

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Auteurs

A Pinto (A)

Birmingham Women's and Children's Hospital, Birmingham, UK.

S Adams (S)

Royal Victoria Infirmary, Newcastle, UK.

K Ahring (K)

Department of PKU, Kennedy Centre, Department of Paediatrics and Adolescents Medicine, Copenhagen University Hospital, Glostrup, Denmark.

H Allen (H)

Sheffield Children's NHS Foundation Trust, UK.

M F Almeida (MF)

Centro de Genética Médica, Centro Hospitalar Universitário do Porto (CHP), Porto, Portugal.
Unit for Multidisciplinary Research in Biomedicine, Abel Salazar Institute of Biomedical Sciences, University of Porto-UMIB/ICBAS/UP, Porto, Portugal.
Centro de Referência na área de Doenças Hereditárias do Metabolismo, Centro Hospitalar Universitário do Porto - CHP, Porto, Portugal.

D Garcia-Arenas (D)

Congenital and Metabolic Disease Unit, Gastroenterology, Hepatology and Pediatric Nutrition Unit, Sant Joan de Déu Hospital, Barcelona, Spain.

N Arslan (N)

Division of Pediatric Metabolism and Nutrition, Dokuz Eylul University Faculty of Medicine, Izmır, Turkey.

M Assoun (M)

Hôpital Necker enfants Malades, Centre de référence des maladies héréditaires du métabolisme, Paris, France.

Y Atik Altınok (Y)

Pediatric Metabolism Department, Ege University Medical Faculty, Izmir, Turkey.

D Barrio-Carreras (D)

Servicio de Pediatria, Unidad de Enfermedades Mitocondriales-Metabolicas Hereditarias, Hospital 12 de Octubre, Madrid, Spain.

A Belanger Quintana (A)

Servicio de Pediatria, Hospital Ramon y Cajal Madrid, Unidad de Enfermedades Metabolicas, Spain.

S M Bernabei (SM)

Division of Artificial Nutrition, Children's Hospital Bambino Gesù, Rome, Italy.

C Bontemps (C)

CHRU Clocheville Tours, France.

F Boyle (F)

National Centre for Inherited Metabolic Disorders, Temple Street Children's University Hospital, Italy.

G Bruni (G)

Meyer Children's hospital, Florence, Italy.

M Bueno-Delgado (M)

Children's Hospital Virgen del Rocío, Seville, Spain.

G Caine (G)

Mid Yorks NHS Trust, UK.

R Carvalho (R)

Hospital Divino Espírito Santo, Ponta Delgada, Portugal.

A Chrobot (A)

Children Voievodship Hospital, Bydgoszcz, Poland.

K Chyż (K)

Institute of Mother and Child, Warsaw, Poland.

B Cochrane (B)

Royal Hospital for Children, Glasgow, UK.

C Correia (C)

CHLC- Hospital Dona Estefânia, Lisboa, Portugal.

K Corthouts (K)

University hospital Leuven, Belgium.

A Daly (A)

Birmingham Women's and Children's Hospital, Birmingham, UK.

S De Leo (S)

Department of Human Neuroscience, Sapienza University of Rome - Policlinico Umberto I of Rome, Italy.

A Desloovere (A)

University hospital Ghent, Belgium.

A De Meyer (A)

Center of Metabolic Diseases, University Hospital, Antwerp, Belgium.

A De Theux (A)

IPG (Institut de Pathologie et de Genetique), Charleroi, Belgium.

B Didycz (B)

University Children's Hospital, Cracow, Poland.

M E Dijsselhof (ME)

AMC Amsterdam/Emma Children's Hospital, Netherlands.

K Dokoupil (K)

Dr. von Hauner Children's Hospital of the University of Munich, Germany.

J Drabik (J)

University Clinical Center in Gdansk, Poland.

C Dunlop (C)

Royal Hospital for Children Edinburgh, UK.

W Eberle-Pelloth (W)

Universitäts-Kinderklinik Würzburg, Germany.

K Eftring (K)

Queen Silivia's Children's Hospital Gothenburg, Sweden.

J Ekengren (J)

Queen Silivia's Children's Hospital Gothenburg, Sweden.

I Errekalde (I)

Hospital Universitario de Cruces, Vizcaya, Spain.

S Evans (S)

Birmingham Women's and Children's Hospital, Birmingham, UK.

A Foucart (A)

Cliniques universitaires Saint-Luc, Belgium.

L Fokkema (L)

UMC Utrecht Wilhelmina Children's Hospital, Netherlands.

L François (L)

centre de référence des maladies héréditaires du métabolisme, Hôpital Universitaire Robert-Debré, Paris, France.

M French (M)

University Hospitals of Leicester NHS Trust, UK.

E Forssell (E)

Karolinska University Hospital, Stockholm, Sweden.

C Gingell (C)

Nottingham Children's Hospital, UK.

C Gonçalves (C)

Hospital Central do Funchal, Portugal.

H Gökmen Özel (H)

İhsan Doğramacı Children's Hospital, Hacettepe University, Turkey.

A Grimsley (A)

Royal Belfast Hospital for Sick Children, Northern Ireland, UK.

G Gugelmo (G)

Department of Pediatrics, Inherited Metabolic Diseases Unit, University Hospital of Verona, Italy.

E Gyüre (E)

Albert Szent-Györgyi Clinical Centre, Hungary.

C Heller (C)

Kinder- und Jugendklinik Erlangen, Germany.

R Hensler (R)

Klinikum Stuttgart Olgahospital, Germany.

I Jardim (I)

Centro Hospitalar Lisboa Norte - H. Sta Maria - Unidade de Doenças Metabólicas, Portugal.

C Joost (C)

University Children's Hospital, University Medical Center Hamburg Eppendorf, Germany.

M Jörg-Streller (M)

Universitätsklinik Innsbruck department für Kinder- und Jugendheilkunde, Austria.

C Jouault (C)

CHU, Angers, France.

A Jung (A)

Charite, Virchow Klinikum Berlin, Germany.

M Kanthe (M)

Skane University Hospital, Sweden.

N Koç (N)

Child's Health and Diseases Hematology Oncology Training and Research Hospital, University of Health Sciences, Ankara, Turkey.

I L Kok (IL)

UMC Utrecht Wilhelmina Children's Hospital, Netherlands.

T Kozanoğlu (T)

İstanbul University İstanbul Faculty of Medicine, Turkey.

B Kumru (B)

Cengiz Gökçek Maternity and Children's Hospital, Gaziantep, Turkey.

F Lang (F)

University Hospital Mainz, Villa metabolica, Germany.

K Lang (K)

Ninewells Hospital, Dundee, Scotland, UK.

I Liegeois (I)

CHRU, Hospital D'enfants, Nancy, France.

A Liguori (A)

Division of Artificial Nutrition, Children's Hospital Bambino Gesù, Rome, Italy.

R Lilje (R)

Oslo University Hospital, Norway.

O Ļubina (O)

Children's Clinical University Hospital, Riga, Latvia.

P Manta-Vogli (P)

Agia Sophia Childrens' Hospital, Athens, Greece.

D Mayr (D)

Universitätsklinik für Jugend und Kinderheilkunde, Müllner Hauptstr, Salzburg, Austria.

C Meneses (C)

Hospital de Santo Espírito da Ilha Terceira, EPER, Portugal.

C Newby (C)

Bristol Royal Hospital for Children, UK.

U Meyer (U)

Clinic for Paediatric Kidney-, Liver and Metabolic Diseases, Medical School Hannover, Germany.

S Mexia (S)

Centro Hospitalar Lisboa Norte - H. Sta Maria - Unidade de Doenças Metabólicas, Portugal.

C Nicol (C)

Royal Victoria Infirmary, Newcastle, UK.

U Och (U)

Metabolic Department, University Hospital Muenster, Center for Pediatrics, Germany.

S M Olivas (SM)

Congenital and Metabolic Disease Unit, Gastroenterology, Hepatology and Pediatric Nutrition Unit, Sant Joan de Déu Hospital, Barcelona, Spain.

C Pedrón-Giner (C)

Hospital Infantil Universitario Niño Jesús, Madrid, Spain.

R Pereira (R)

Norfolk & Norwich hospital, UK.

K Plutowska-Hoffmann (K)

The Independent Public Clinical Hospital, Medical University of Silesia in Katowice John Paul II Upper Silesian Child Health Centre, Poland.

J Purves (J)

Royal Hospital for Children Edinburgh, UK.

A Re Dionigi (A)

Department of Pediatrics, San Paolo Hospital, ASST Santi Paolo e Carlo, University of Milan, Italy.

K Reinson (K)

Tartu University Hospital, United Laboratories, Department of Genetics, Italy.

M Robert (M)

Hôpital Universitaire des Enfants, Reine Fabiola, Bruxelles, Belgium.

L Robertson (L)

Royal Hospital for Children Edinburgh, UK.

J C Rocha (JC)

Centro de Genética Médica, Centro Hospitalar Universitário do Porto (CHP), Porto, Portugal.
Centro de Referência na área de Doenças Hereditárias do Metabolismo, Centro Hospitalar Universitário do Porto - CHP, Porto, Portugal.
Centre for Health Technology and Services Research (CINTESIS), Portugal.

C Rohde (C)

Hospital for Children and Adolescents, Department of Women and Child Health, University Hospitals, University of Leipzig, Germany.

S Rosenbaum-Fabian (S)

Department of General Pediatrics, Adolescent Medicine and Neonatology, Medical Center - University of Freiburg, Faculty of Medicine, Freiburg, Germany.

A Rossi (A)

Division of Inherited Metabolic Diseases, Reference Centre Expanded Newborn Screening, Department of Woman's and Child's Health, University Hospital of Padua, Italy.

M Ruiz (M)

Hospital Universitario Nuestra Señora de Candelaria, Tenerife, Spain.

J Saligova (J)

Children's Faculty Hospital, Kosice, Slovakia.

A Gutiérrez-Sánchez (A)

Congenital and Metabolic Disease Unit, Gastroenterology, Hepatology and Pediatric Nutrition Unit, Sant Joan de Déu Hospital, Barcelona, Spain.

A Schlune (A)

Department of General Pediatrics, Neonatology and Pediatric Cardiology, University Children's Hospital Duesseldorf, Heinrich Heine University, Düsseldorf, Germany.

K Schulpis (K)

Agia Sophia Childrens' Hospital, Athens, Greece.

J Serrano-Nieto (J)

HRU, Málaga, Spain.

A Skarpalezou (A)

Institute of Child Health, "A. Sophia" Children's Hospital, Athens.

R Skeath (R)

Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.

A Slabbert (A)

Evelina Children's Hospital, Guy's & St. Thomas' NHS Foundation Trust, London, UK.

K Straczek (K)

Department of Pediatrics, Endocrinology, Diabetology, Metabolic Diseases and Cardiology of the Developmental Age Pomeranian Medica University, Poland.

M Giżewska (M)

Department of Pediatrics, Endocrinology, Diabetology, Metabolic Diseases and Cardiology of the Developmental Age Pomeranian Medica University, Poland.

A Terry (A)

Alder Hey Children's NHS Foundation Trust, Liverpool, UK.

R Thom (R)

Royal Belfast Hospital for Sick Children, Northern Ireland, UK.

A Tooke (A)

Nottingham Children's Hospital, UK.

J Tuokkola (J)

Clinical Nutrition Unit, Internal Medicine and Rehabilitation and Pediatric Hospital, Helsinki University Hospital and University of Helsinki, Helsinki, Finland.

E van Dam (E)

University of Groningen, University Medical Center Groningen, Beatrix Children's Hospital, Department of Dietetics, Groningen, the Netherlands.

T A M van den Hurk (TAM)

UMC Utrecht Wilhelmina Children's Hospital, Netherlands.

E M C van der Ploeg (EMC)

Maastricht University Medical Centre, Maastricht, Netherlands.

K Vande Kerckhove (K)

University hospital Leuven, Belgium.

M Van Driessche (M)

University hospital Ghent, Belgium.

A M J van Wegberg (AMJ)

Department of Gastroenterology and Hepatology - Dietetics, Radboud University Medical Centre, Nijmegen, Netherlands.

K van Wyk (K)

Manchester University NHS Foundation Trust, UK.

C Vasconcelos (C)

Centro Hospitalar São João, Porto, Portugal.

V Velez García (V)

Unit of Nutrition and Metabolopathies, Hospital La Fe, Valencia, Spain.

J Wildgoose (J)

Bradford Teaching Hospitals St Lukes, UK.

T Winkler (T)

Klinik für Kinder- und Jugendmedizin, Carl-Thiem-Klinikum gGmbH Cottbus, Germany.

J Żółkowska (J)

Institute of Mother and Child, Warsaw, Poland.

J Zuvadelli (J)

Department of Pediatrics, San Paolo Hospital, ASST Santi Paolo e Carlo, University of Milan, Italy.

A MacDonald (A)

Birmingham Women's and Children's Hospital, Birmingham, UK.

Classifications MeSH