ArticleMolecular genetics and metabolism reports2018
Reproductive experience of women living with phenylketonuria.
Article in Molecular genetics and metabolism reports, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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Who cites it
14 citing papers in PubMed, 18 citations in OpenAlex.
- A pioneering transition program for adults with phenylketonuria - initial findings from a single-center one-year experience from Poland.Clinics (Sao Paulo, Brazil) · 2026Article
- Sexual and reproductive life in adolescents and young adults with phenylketonuria: a cross-sectional study.Orphanet journal of rare diseases · 2026Article
- Psychometric properties of perceived barriers to PKU treatment inventory in a Brazilian national sample.Orphanet journal of rare diseases · 2025Observational
- The Prevention of Maternal Phenylketonuria (PKU) Syndrome: The Development and Evaluation of a Specific Training Program.Nutrients · 2024Article
- Assessing the lived experiences of females with phenylketonuria in their health management.Molecular genetics and metabolism reports · 2024Article
- Characteristics and outcomes of pregnancies among women with phenylketonuria from the NBS Connect registry.Molecular genetics and metabolism reports · 2024Article
- Navigating phenylketonuria management to improve it in Latin America: a systematic literature review and applicability analysis.Frontiers in nutrition · 2024Review
- Health-related quality of life in a european sample of adults with early-treated classical PKU.Orphanet journal of rare diseases · 2023Article
- Life story of Iranian parents of a child with phenylketonuria: a qualitative study.Journal of community genetics · 2023Article
- The Impact of the Quality of Nutrition and Lifestyle in the Reproductive Years of Women with PKU on the Long-Term Health of Their Children.Nutrients · 2022Review
- Moving through adulthood: The lived experience of Irish adults with PKU.Frontiers in psychology · 2022Article
- Observational
- Comparison of phenylalanine tolerance in singleton and twin pregnancies in patients with phenylketonuria.The Journal of international medical research · 2020Article
- PLASMA PHENYLALANINE DETERMINATION BY QUANTITATIVE DENSITOMETRY OF THIN LAYER CHROMATOGRAMS AND BY HIGH PERFORMANCE LIQUID CHROMATOGRAPHY IN RELATION WITH MODERN MANAGEMENT OF PHENYLKETONURIA.Acta endocrinologica (Bucharest, Romania : 2005)Article
Corrections and comments
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Authors and funding
3 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionMany women with PKU are well-informed about the risks of maternal PKU but there are several barriers to achieving satisfactory metabolic control before and during pregnancy. Many studies have documented the outcome of maternal PKU infants, but very little has been reported about the experiences of women of reproductive age with PKU, particularly about their psychosexual development, pre-conception, pregnancy and postnatal experience.
methodsIn the UK, in a subsection of an online questionnaire conducted by the National Society for PKU (NSPKU) about living with PKU, women aged 18 years and over completed 9 closed questions about their pre-conception, pregnancy and post-natal experiences and an open-ended question on their reproductive health.
results300 women aged 18 years and over with PKU completed this questionnaire with 37% (
conclusionsMany women with PKU have unmet sexual and reproductive health needs. Pregnancy fears are prominent from adolescence onwards and for some women overarching concerns about their ability to cope with pregnancy led to a decision not to have children. Interventions are needed to reduce the psychological impact of the risk of maternal PKU syndrome and assist with safe pregnancies. Post-natal experiences of women with PKU give rise to concern.
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Registered trials
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