Online health education aids AIP life quality, reduces attacks: Study
Researchers see use for broader application of strategy
An online health education program significantly reduced acute attacks, boosted mental health, and improved quality of life for people with acute intermittent porphyria (AIP), a study reported. The researchers said the findings “hold important clinical significance for broader application.”
The study, “Effects of internet-based health education on patients with acute intermittent porphyria,” was published in the Orphanet Journal of Rare Diseases.
“Health education can significantly enhance patients’ understanding of the disease and their self-management abilities,” the researchers wrote, adding that the technique “has been extensively applied in the prevention and management of chronic diseases.”
Because there is limited evidence of the benefits of health education to people with AIP, a team of scientists at The Second Hospital of Hebei Medical University, in China, assessed the impact of a tailored health education program on AIP patients’ symptoms and quality of life.
Porphyrias are a collection of genetic conditions characterized by abnormalities in the production of heme, a component of iron-containing proteins such as hemoglobin, which binds oxygen in red blood cells. Impaired heme production causes the buildup of intermediary molecules called porphyrins, which ultimately act as the drivers of porphyria symptoms.
AIP is caused by mutations in the HMBS gene, which encodes an enzyme essential for the third step in heme production. AIP symptoms may include abdominal pain, gastrointestinal and urinary issues. Apart from physical symptoms, AIP also affects patients’ mental health, with 50% to 60% experiencing anxiety and depression.
Program includes counseling, lectures
The one-year online program was developed by a multidisciplinary team of physicians and a psychologist at the researchers’ hospital. All had experience managing AIP patients.
The program was crafted based on results from a patient survey, and included educational lectures and psychological counseling. Sessions aimed at educating patients and families on the causes of AIP, its clinical manifestations, treatment, and prevention measures were delivered every two months. One- to two-hour psychological counseling sessions were designed to help patients understand, articulate, and regulate their negative feelings, and to allow regular assessments of patients’ mental health issues so they could be tailored and managed offline.
Patients were followed via an interactive WeChat platform designed to facilitate patients’ understanding of potential attack triggers and strategies to avoid them.
Fifty-two AIP patients (96.2% women; mean age 27.4) treated at the researchers’ hospital from September 2021 to May 2023 participated in the 12-month program. Assessments given before and after the intervention showed that the annual frequency of AIP acute attacks, including severe attacks, was significantly reduced after the health education program.
The proportion of patients who were free from relapses increased from 7.7% in the year before the intervention to 23.1% after the program. The proportion of patients experiencing four or more attacks dropped from 55.8% to 23.1%.
Meanwhile, the proportion of patients who did not experience a severe attack increased from 28.8% to 69.2%, while the proportion of patients experiencing three or more severe attacks dropped from 17.3% to 0%.
The education program was also associated with a significant increase in scores for positive emotions and no changes in negative emotions, as assessed in the Positive and Negative Affect Schedule scale. Both anxiety and stress, assessed with the Depression Anxiety Stress Scales-21, were significantly eased with the health program. “Anxiety, depression, and stress are not only common triggers of AIP acute attacks but also form an integral part of their clinical symptoms,” the researchers wrote.
Data from the 36-Item Short Form Health Survey, which measures quality of life, showed that the intervention significantly improved physical health, reduced pain, and improved mental health.
“This study indicated that internet-based health education effectively reduced the frequency and severity of acute attacks in AIP patients, significantly improved their mental health, and enhanced their [quality of life],” the researchers wrote, adding that the findings hold “significant clinical value.” They said further studies involving more patients as well as control groups are needed to confirm the benefits of the approach for AIP patients.
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