Perceived stress affects how patients manage their care and influences their mental health, according to a study in people with hereditary angioedema (HAE) with C1 inhibitor (C1-INH) deficiency.
Therefore, psychological interventions could increase the interest and involvement of these patients in their own care and help to improve their well-being, the investigators noted.
“This result suggests a possible therapeutic target for clinical psychologists dealing with this uncommon chronic condition,” they wrote.
In addition to physical discomfort, HAE can cause emotional distress about potential episodes, affecting the mental well-being of patients and their quality of life. Emotional stress is a common trigger of angioedema attacks and may worsen disease activity, at least in children.
In the new study, researchers in Italy investigated whether psychological factors also play a role in HAE severity in adult patients and how these factors affect the patients’ ability to manage the disease.
The study enrolled 28 adults with HAE with C1-INH deficiency (C1-INH-HAE), ages 18 and older. Participants were evaluated using the Patient Health Engagement (PHE) scale, which measures psychological features of patients’ health engagement with four increasing levels of engagement: blackout, arousal, adhesion, and eudaimonic project (subjective happiness or fulfillment through experiences of meaning and purpose).
Of the 28 participants, 20 (71%) were female, the mean age was 45, the mean time from diagnosis was 20 years, and the mean disease severity score was 6.4 (on a scale of 1–10, where 10 is most severe).
Alexithymia — difficulty recognizing emotions — was low in these patients, with it being present in three (11%) patients, absent in 22 (78%), and possible in three (11%).
Perceived stress was generally moderate, with a mean score of 18.2 (on a scale of 0–40). Seven (25%) patients had low perceived stress, 17 (61%) had moderate perceived stress, and four (14%) had high perceived stress.
PHE was generally high, with no patient in the lowest engagement position (blackout), 29% of patients in the second-lowest (arousal), 57% in the adhesion position, and 14% in the highest position (eudaimonic project). While all patients with a PHE in arousal had at least moderate perceived stress, 75% of patients in the highest PHE had no perceived stress, suggesting that PHE is linked to levels of perceived stress.
A total of 25 patients were assessed for global mental health. Among them, 28% reported no general psychological distress, 24% had normal distress, 36% had moderate-high distress, and three (12%) had distress beyond the clinical threshold. The researchers found that stress level was associated with moderate-high psychological distress.
Medium to high psychoticism, which was reported in half of the 25 patients, was also associated with stress level. However, psychological distress, psychoticism, stress, and health engagement were not significantly associated with disease severity in patients, the researchers found.
“Psychological attitude toward the disease seems to be more relevant for patients’ wellness than the disease severity itself,” they wrote.
The small sample size due to the rarity of C1-INH-HAE was a limitation of this study. However, the results provide insight into how psychological well-being and patient engagement are impacted by stress.
“It seems important that psychologists caring for patients with C1-INH-HAE would attentively evaluate levels of health engagement and of stress to provide targeted interventions aiming to improve patients’ management and adaptation to the disease,” the researchers concluded.
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