Quality of life improves after diagnoses in cofactor-dependent wheat allergy
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Key takeaways:
- Patients experienced a median delay of 5 years between their first allergic reaction and final diagnosis.
- Quality-of-life scores after diagnosis were comparable with scores before initial reactions.
Oral challenges confirmed cofactor-dependent wheat allergies, restored quality of life and reduced fear of future reactions, according to a study published in Annals of Allergy, Asthma & Immunology.
Education about cofactor-dependent wheat allergy (CDWA) — an IgE-mediated food allergy that involves reactions in the presence of other factors such as exercise, stress or alcohol — benefitted these patients as well, Valentina Faihs, MD, of the department of dermatology and allergy Biederstein at Technical University of Munich School of Medicine, and colleagues wrote.
“In many cases, reactions occur infrequently and irregularly, making the diagnosis a challenge and resulting in a delay of many years until patients get correctly diagnosed,” Faihs and colleagues wrote.
To better understand the health-related quality of life caused by these diagnosis delays, Faihs and colleagues evaluated data of 22 adults (median age, 53.5 years; 59% men) with CDWA who completed an oral challenge test (OCT) for wheat allergy, followed by a post-challenge questionnaire. Also, 20 of these patients completed the Food Allergy Quality of Life Questionnaire—Adult Form (FAQLQ-AF).
All these patients reported that they had regularly tolerated wheat products alone and had consumed wheat in combination with cofactors before experiencing allergic reactions. These cofactors included exercise (91%), alcohol (45%), nonsteroidal anti-inflammatory drugs (36%), stress (14%), temperature extremes (14%), infections (5%) and the menstrual cycle (5%).
Patients experienced a median delay of 5 years between their first allergic reaction and their final diagnosis, including delays of 10 years or more for eight patients (36%). Also, 18 patients (82%) had experienced systemic anaphylaxis with life-threatening symptoms.
During the 3-day stepwise OCT, nine patients (41%) reacted to pure wheat gluten in supraphysiological doses on the first day. The addition of acetylic salicylic acid as a cofactor led to diagnosis for 10 patients (45%). Additional alcohol and exercise elicited objective reactions for three more patients (13.6%).
All the patients received dietary counseling upon diagnosis and decided to follow situational avoidance, including small amounts of wheat in their diets in the absence of cofactors.
The cohort had a mean FAQLQ-AF score of 3.65, which was lower than the mean scores for cohorts from China (4.7; P = .002) and Australia (4.2; P = .08) that were diagnosed with CDWA without OCT. These differences persisted across all four domains on the FAQLQ-AF, most particularly in emotional impact (P < .001 for both), the researchers found.
After experiencing their first allergic reaction, patients reported a significant drop in overall quality of life (P < .001), but their quality of life significantly improved after diagnosis via OCT and receiving education about CDWA (P < .05).
Additionally, patients reported significantly less fear of having another allergic reaction after they received the challenge-confirmed diagnosis (P < .01), with 86% reporting moderate or low fear of the OCT.
There was no correlation between fear and the severity of prior reactions, the researchers found, but there was a significant correlation between self-reported fear or allergic reactions before the diagnosis and scores in the emotional impact domain of the FAQLQ-AF (r = 0.716; P < .001).
Researchers also found significant correlations between self-reported confidence in dealing with allergy and the years until CDWA diagnosis (r = 0.601; P = .003) and feeling well-informed about CDWA (r = 0.624; P = .002). The was a negative correlation between confidence in dealing with CDWA and fear of future reactions after diagnosis (r = –0.661; P < .001) as well.
All the patients only experienced skin symptoms with the OCT, including urticaria for everyone and one patient with eyelid edema, with rapid regression with antiallergic treatment. Most of the patients agreed that the OCT was not stressful, with a median of 2 points out of 10 on a Likert scale.
After the diagnosis and consultation, the patients reported that they felt well-informed about the current state of research and that they felt confident in dealing with their CDWA, including 100% rating their confidence at 6 or higher out of 10 on a Likert scale. Additionally, 50% rated the benefits of OCT at 10 out of 10.
Based on these findings, the researchers concluded that CDWA has a negative impact on quality of life, but diagnosis with OCT and counseling can restore their quality of life to levels experienced before the onset of their CDWA.
These findings also suggest that perceived disease burden may be more strongly correlated with patient education or the ability to cope with anxiety than with levels of sensitization, the researchers continued.
Perspective
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Cofactor-dependent food allergies including CDWA are clinically different and therefore have the potential to affect the patients’ burden differently than “normal” food allergies.
Given the long journey to an accurate diagnosis, which includes multiple reactions and a large amount of uncertainty and ambiguity, it makes sense that a challenge-confirmed diagnosis that included educational counseling was able to restore patients’ quality of life to similar levels as before the onset of CDWA.
Uncertainty, unpredictability and ambiguity are common anxiety triggers, so I can imagine those with CDWA might experience high levels of distress while trying to gain a solid understanding of their diagnosis. The lack of specific information about reaction triggers might even lead to control-focused behaviors such as over-avoidance in service of providing a sense of safety, security and certainty.
Therefore, I am not surprised that overall, patients in this study felt the OCT was not stressful, reported a high level of benefit from it, and considered the stepwise design of the OCT protocol helpful.
First, this suggests that most study participants were open-minded about the perceived benefits that OCT could provide, and they likely even felt a sense of relief about the information they would receive. After all, mindset is an important factor impacting the perception of the OCT experience.
Secondly, this reinforces the concept that gaining certainty through information-gathering positively impacts one’s mindset about effectively managing their diagnosis. Finally, the OCT experience itself likely helped participants learn to challenge their catastrophic beliefs about their allergic reactions, providing insights into their own thresholds and bodily responses that could be utilized outside of the study setting.
From a psychological standpoint, practical takeaways from this study might include:
- the usefulness of OCTs (or oral food challenges), which can provide increased certainty through personalized insights to help patients effectively manage their allergy and positively impact health-related quality of life;
- the importance of explicitly explaining to patients the potential benefits of undergoing an OCT in order to help encourage open-mindedness and motivation to follow through;
- the impact that uncertainty, unpredictability and ambiguity have on both patients’ ability to effectively adapt to and manage their allergy and to their allergy management mindset and perceptions of risk; and
- the importance of providing robust patient education focused on understanding, managing and developing skills that allow for a balanced approach to living with their allergy diagnosis.
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