Orphanet Journal of Rare Diseases (Nov 2024)
Effects of internet-based health education on patients with acute intermittent porphyria
Abstract
Abstract Background Acute intermittent porphyria (AIP) is a rare genetic metabolic disorder characterized by acute attacks of neurovisceral symptoms. This disease not only poses a threat to patients’ physical and mental well-being, but its frequent acute attacks also have a profound impact on patients’ mental state and overall quality of life (QoL). Objective This study aimed to explore the impact of internet-based health education on the acute attacks, mental health, and QoL of patients with AIP. Methods This study employed a pre-post comparison design, recruiting 52 patients diagnosed with AIP and treated at the Second Hospital of Hebei Medical University between September 2021 and May 2023 as the subjects of investigation. All participants underwent a 12-month internet-based health education intervention. Quantitative assessments of the intervention’s efficacy in reducing acute attacks, enhancing mental health status, and improving QoL among AIP patients were conducted using various instruments, including measures of acute episode frequency and severity, the Depression Anxiety Stress Scales-21 (DASS-21), the Positive and Negative Affect Schedule (PANAS), and the MOS 36-Item Short Form Health Survey (SF-36). Data were collected at two distinct time points: pre- and post-health education interventions, which were then subjected to comparative analysis. Results Compared to pre-health education, the frequency of acute attacks among patients with AIP significantly decreased post-health education intervention (p < 0.05). Furthermore, notable improvements were observed in the severity of acute attacks, PANAS scores, DASS-21 scores, and SF-36 scores (p < 0.05). Conclusions This study validated that health education effectively reduced the frequency and severity of acute attacks in AIP patients while enhancing their mental health status and quality of life. Internet-based health education emerges as a practical and productive strategy for AIP patients.
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