Abstract ID: 26-309
Impact of Neurofibromatosis Type 1 with Plexiform Neurofibromas on Health-Related Quality of Life (HRQoL) and Work Productivity: A Cross-Sectional Study of Patients and Caregivers in Saudi Arabia
Author: Albanderi H Base Hospital / Institution: dhahran eye specialist hospital
Presentation Type: ePoster Presentation
Purpose
This study evaluated the impact of NF1-PN on health-related quality of life (HRQoL) and work productivity among patients and caregivers in Saudi Arabia. Assessed the impact of the disease on work productivity and daily activity for both patients and their caregivers, and highlighted a broader caregiver burden.
Methods
This cross-sectional study utilized the PedsQL™ 3.0 NF1 Module and the Work Productivity and Activity Impairment (WPAI) questionnaire. To ensure cultural and linguistic relevance, the study employed the cross-culturally validated Arabic version of the PedsQL™ 4.0 Generic Core Scale. While 47 patients and 33 caregivers were initially identified as eligible, the final analysis included 28 patients and 15 caregivers who completed all study requirements. This sample served as a pilot cohort for a larger, forthcoming national investigation in Saudi Arabia.
Results
Among the 31 patients, 38.7% (n=12) reported moderate-to-extreme pain or discomfort, and 87.1% (n=27) experienced anxiety or depression. Low HRQoL was strongly associated with poor acceptance of physical appearance, which affected 34 participants across the cohort. Caregivers faced a severe, multifaceted burden: 20% (n=3) reported serious personal health issues, 33% (n=5) had missed work in the seven days before the study, and 73% (n=11) reported that caregiving had negatively impacted their work productivity. Additionally, 13% (n=2) had difficulty performing daily activities, while 46.7% (n=7) faced significant financial issues coupled with a lack of family support.
Conclusion
NF1-PN exerts a profound multi-dimensional burden on patients and their caregivers in Saudi Arabia, characterized by high psychological distress, physical pain, and significant socioeconomic strain. The link between poor HRQoL and body image concerns highlights a critical need for targeted psychological support. These pilot findings underscore the urgent necessity for a national multidisciplinary framework that provides clinical, social, and economic assistance to families managing the complex, long-term impacts of NF1-PN.
Additional Authors
| First name | Last name | Base Hospital / Institution |
|---|---|---|
| Fatimah | Alhammad | dhahran eye specialist hospital |