Disease Burden in Patients with X-linked Hypophosphatemia in Korea: A Survey with Interview Study

• 발행기관: 대한약학회
• 저자명: Subhin Lee Hyun Jin Han Hae Sun Suh
• 간행물 정보: 『약학회지』제68권 제6호(2024년), 509~519쪽, 전체 11쪽
• 주제분류: 의약학 > 기타의약학
• 파일형태: PDF
• 발행일자: 2024.12.31

국문 초록

This study aimed to assess the disease burden in Korean patients with X-linked hypophosphatemia (XLH) by combining quantitative and qualitative data. A cross-sectional study was conducted using patient-reported outcome measures, including EuroQol 5 Dimension (EQ-5D), 36-item Short Form (SF-36), and the Work Productivity and Activity Impairment questionnaire (WPAI). Open-ended interviews were also held to explore personal and social dimensions of living with XLH. The study included twelve participants: four adult patients and eight caregivers of pediatric patients. Utility scores from EQ-5D were lower in adults (mean: 0.65, standard deviation [SD]: 0.21) compared to pediatric patients (mean: 0.73, SD: 0.21). Health-related quality of life (HRQoL), measured by SF-36, was significantly lower in adults, especially in general health (mean: 26.25, SD: 16.52) compared to pediatric patients (mean: 51.25, SD: 26.29). Interview results revealed challenges related to symptoms, financial burden, social impacts, treatment, and emotional distress. The study highlights the significant burden of XLH on patients and caregivers in Korea, emphasizing the need for targeted interventions to improve pain management, quality of life, and productivity, along with addressing the broader social and emotional impacts of the disease.

목차

Introduction

Methods

Results

Discussion

Conclusion

Acknowledgment

Conflict of Interest

References

키워드

Patient Reported Outcomes Rare Disease Disease Burden Familial Hypophosphatemic Rickets Quality of Life

참고문헌

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