Assessing the Lived Experiences of Female Patients with Phenylketonuria in Managing their Health Open Access

Abstract

The present study is a mixed-methods exploratory study aiming to understand the lived experiences of female patients 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. 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. In total, 25 participants were included in analysis (adults, n=20; adolescents, n=5). In the IIRS survey, diet had the highest average impact score of 5.74 (SD=2.05) and religious expression had the lowest average impact score of 1.74 (SD=1.65). The most salient themes that arose from the qualitative interviews were related to concerns of pregnancy (n=25), interactions with health care providers relative to PKU care (n=23) and independent of PKU care (n=21), social support (n=21) and isolation (n=12), financial issues (n=22), and illness intrusiveness on general health management (n=22). Adolescent and adult female patients 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 female patients with PKU and potential interventions to better address these barriers.

Table of Contents

I. Introduction

1.1. Problem Statement

1.2. Theoretical Framework

1.4. Research Question

1.5. Significance Statement

1.6. Definition of Terms

II. Literature Review

2.1. Introduction

2.2. Review of Literature

2.2.1. Significance of Rare Diseases

2.2.2. PKU Dietary Management

2.2.3. Significance of the Health Problem

2.2.4. Individual-Level Influences of PKU Management

2.2.5. Interpersonal Influences of PKU Management

2.2.6. Environmental Influences of PKU management

2.3. Application to Theoretical Framework

2.4. Summary of Current Issue

III. Student Contribution

3.1. Student Contribution

3.2. Methods Introduction

3.3. Population and Sample

3.4. Recruitment Procedures

3.5. Data Collection Procedures and Measures

3.6. Data Analysis

3.7. Positionality

IV. Manuscript

4.1. Introduction

4.2. Materials and Methods

4.2.1. Participants

4.2.2. Recruitment

4.2.3. Data Collection

4.2.4. Statistical Analysis

4.3. Results

4.3.1. Demographic Characteristics

4.3.2. Illness Intrusiveness

4.3.3. Qualitative Interview Key Findings

4.4. Discussion

4.4.1. Maternal PKU

4.4.2. Knowledge & Self-Efficacy

4.4.3. Interactions with Health Care Providers

4.4.4. Social Issues and Support

4.4.5. Insurance & Out-of-Pocket Costs

4.4.6. General Health Implications

4.4.7. Limitations

4.5. Conclusion

4.6. References

V. Discussion, Conclusions, Implications, Recommendations

5.1. Maternal PKU

5.2. Knowledge & Self-Efficacy

5.3. Interactions with Health Care Providers

5.4. Social Issues & Support

5.5. Insurance & Out-of-Pocket Costs

5.6. General Health Implications

5.7. Strengths

5.8. Limitations

5.9. Conclusion

VI. References

VII. Appendices

About this Master's Thesis

Rights statement

• Permission granted by the author to include this thesis or dissertation in this repository. All rights reserved by the author. Please contact the author for information regarding the reproduction and use of this thesis or dissertation.

School	Rollins School of Public Health
Department	Behavioral Sciences and Health Education
Degree	M.P.H.
Submission	Master's Thesis
Language	English
Research Field	Health Sciences, Public Health Health Sciences, General Health Sciences, Nutrition
Keyword	MPKU health management phenylketonuria illness intrusiveness
Committee Chair / Thesis Advisor	Guan, Yue, Emory University
Committee Members	Gurung, Saran, Emory University Comeau, Dawn, Emory University

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