ArticleOrphanet journal of rare diseases2024
Effects of internet-based health education on patients with acute intermittent porphyria.
Article in Orphanet journal of rare diseases, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
1 citing paper in PubMed, 1 synthesis or guideline pooled it.
- An Evidence Summary of Health Education in Chronic Obstructive Pulmonary Disease: A Practice-Oriented Assessment with Inter-Rater Reliability.International journal of chronic obstructive pulmonary disease · 2026Pooled it
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAcute 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).
objectiveThis study aimed to explore the impact of internet-based health education on the acute attacks, mental health, and QoL of patients with AIP.
methodsThis 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.
resultsCompared 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).
conclusionsThis 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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