ArticleMolecular genetics and metabolism reports2024
Assessing the lived experiences of females with phenylketonuria in their health management.
Article in Molecular genetics and metabolism reports, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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Who cites it
3 citing papers in PubMed.
- Sexual and reproductive life in adolescents and young adults with phenylketonuria: a cross-sectional study.Orphanet journal of rare diseases · 2026Article
- Navigating Adolescence with PKU: Adherence, Metabolic Control, and Wellbeing in a UK Clinical Centre.Nutrients · 2025Article
- How perceived risk of recurrence strengthens health management awareness in stroke patients: the chain mediating role of risk fear and health literacy.Frontiers in public health · 2025Article
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Introduction: The present study is a mixed-methods exploratory study aiming to understand the lived experiences of females with phenylketonuria (PKU) in managing their health. The study aims to identify what individual, interpersonal, and environmental factors serve as facilitators and inhibitors, and how PKU intrudes on different realms of health. Methods: Attendees of Emory's Metabolic Camp and female users of Medical Nutrition Therapy for Prevention (MNT4P) were recruited. Participants were administered the Illness Intrusiveness Ratings Scale (IIRS) survey and qualitatively interviewed. The IIRS survey was analyzed using descriptive statistics and the interviews were coded and assessed using inductive and deductive analysis. Results: In total, 25 participants were included in analysis (adults, Discussion: Adolescent and adult female participants with PKU identified significant concerns in individual, interpersonal, and environmental factors affecting the management of their health. Additionally, the illness intrusiveness of PKU impacted their physical, mental, and gynecological health. Future research should further assess the unique challenges faced by females with PKU and potential interventions to better address these barriers.
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