Health‐Related Quality of Life in Children, 1–12 Years Old, With Food Allergy in Sweden

ABSTRACT

Aim

Food allergy in children is a potentially serious condition. Continuous allergen avoidance and risk of anaphylaxis can cause stress, fear and anxiety. The aim of this study was to describe health‐related quality of life (HRQoL) in children with food allergies in Sweden, and to examine the impact of age, sex, disease severity and the number of food allergies.

Methods

This cross‐sectional study included parents of children, 1–12 years old, with food allergies. Fifty‐two parents completed the Food Allergy Quality of Life Questionnaire—Parental Form (FAQLQ‐PF) online.

Results

Persistent food allergy was reported in 48 (92%) children. Those who had an epinephrine autoinjector, more than three allergies, symptoms affecting 4–6 organ systems, or an allergy to cow's milk reported worse health‐related quality of life (HRQoL) than those without. Age, sex and history of anaphylaxis did not significantly impact HRQoL.

Conclusion

Children with food allergies face reduced HRQoL when burdened by multiple allergens, widespread symptoms or cow's milk allergy, especially those prescribed epinephrine autoinjectors. Identifying and supporting these high‐risk groups is essential to improving their well‐being.

Abbreviations

EI

emotional impact

FA

food anxiety

FAQLQ‐PF

Food Allergy Quality of Life Questionnaire—Parental Form

HRQoL

health‐related quality of life

IgE

immunoglobulin E

IQR

interquartile range (25th to 75th percentile)

SDL

social and dietary limitations

Summary.

• Food allergies can significantly affect the emotional and social well‐being of children, especially in everyday situations involving food.

• This study found that children with cow's milk allergy, multiple allergens or widespread symptoms reported poorer quality of life.

• Children prescribed epinephrine autoinjectors were especially affected, highlighting the need for targeted support and further research into child‐centred interventions.

1. Introduction

Food allergy in children is a potentially serious condition, with its prevalence increasing over the past decades. Globally, the estimated prevalence is around 4% in children and 1% in adults [1]. In Western countries, the prevalence is higher, approximately 8% in young children and around 4%–5% in adults [1, 2]. Prevalence varies widely depending on geographic region, dietary habits, age, race and ethnicity [1]. Furthermore, there is a notable discrepancy between self‐reported food allergy and diagnoses confirmed through clinical evaluation or food challenge [3].

The most common foods in young children are cow's milk, hen's egg, peanut, wheat, soy, tree nuts, fish and shellfish. However, approximately 80% of early childhood allergies to milk, egg, soy and wheat resolve by school age, as children often develop clinical tolerance. In contrast, allergies to peanuts, tree nuts and seafood are generally considered lifelong [4].

Food allergy can cause stress, fear and anxiety in affected children and their parents, due to the constant need for allergen avoidance and the ever‐present risk of anaphylaxis. This, in turn, is associated with a significantly impaired quality of life [1, 5, 6]. The World Health Organization (WHO) defines quality of life as an individual's perception of their life situation in relation to cultural context, personal goals, expectations and concerns [7]. Health‐related quality of life (HRQoL) refers to the functional impact of disease or disability and its treatment on a patient's quality of life. It is a measure of the lived experience of illness rather than its clinical severity [5]. HRQoL is an increasingly important outcome measure, particularly in long‐term conditions such as food allergy, where no curative treatment currently exists.

Due to the need for constant allergen monitoring and the limitations of food restrictions, social events, such as family gatherings, restaurant visits, parties, travel and school, can become overwhelming. Eating out can cause anxiety and stress, as the child must rely on others' understanding of label reading and cross‐contamination risks. Grocery shopping can become time‐consuming and expensive, to ensure safe and nutritious food [8]. Protudjer et al. reported that annual total household costs were approximately €4000 higher for families with children with objectively diagnosed allergies to staple foods. In addition, food allergy negatively affects intangible costs, such as parent‐reported child health and perceived well‐being of the parent [9].

Anxiety associated with the risk of a potential reaction may have a more profound effects on the emotional and social aspects of a child's everyday life, than the clinical symptoms triggered by food intake [10]. Children with allergies to staple foods have been reported to have worse HRQoL compared to children without food allergies. Indicators of disease severity, that is, previous anaphylaxis, epinephrine autoinjector prescription and higher number of food allergies, are also negatively associated with HRQoL [11]. However, findings from previous studies are inconsistent. A large European study showed that neither experienced anaphylaxis nor prescription of epinephrine auto injector had any significant impact on HRQoL in either children or adults with food allergy [12]. Moreover, another study report that HRQoL worsen by school age among children with food allergy [13].

The factors that influence HRQoL are not yet fully understood, and previous studies show conflicting results. Since food allergy is a common condition in children that affects family finances, daily life and the mental well‐being of both children and parents, it is important to continue investigating the determinants of children's HRQoL. This study aimed to describe the HRQoL in children with food allergies in Sweden, and to examine the impact of age, sex, disease severity, and the number of food allergies, based on the following hypotheses: that children with multiple food allergies have worse HRQoL than children with ≤ 2 food allergies; that school‐aged children (7–12 years) have poorer HRQoL compared to preschool children (1–6 years); and that HRQoL is negatively affected by the severity of the disease.

2. Materials and Methods

This cross‐sectional study included parents of children (aged 1–12 years) with current or previous food allergies, who were either receiving ongoing care or had completed at least one food challenge between 2021 and 2024 at the Allergy Center at Linköping University Hospital in southeastern Sweden. Food allergy was diagnosed based on medical history, skin prick testing, or blood sampling. Eligible participants were identified through diagnosis codes in the child's medical records. Exclusion criteria included families with a pronounced need for an interpreter, parents without access to a digital mailbox, and parents who had indicated unavailability during the data collection period.

2.1. Data Collection

A total of 225 children were identified as meeting the inclusion criteria. Their parents were contacted via the digital healthcare platform 1177.se and invited to complete a questionnaire regarding their child's HRQoL. Through this platform, families received written information about the study including contact details and a web link to the survey, which was hosted on the healthcare region's procured survey tool, Webropol. Anonymous responses were automatically transferred to a file compatible with the statistical software SPSS. Data collection took place between November 24 and December 29, 2024. The response rate was 52 out of 225 invited families (23%), which may introduce participation bias and should be considered when interpreting the results.

2.2. Food Allergy Quality of Life Questionnaire—Parental Form (FAQLQ‐PF)

Food Allergy Quality of Life Questionnaire—Parental Form (FAQLQ‐PF), is a food allergy‐specific questionnaire that allows parents to report children's HRQoL [10]. It includes 14–30 items depending on age group (under 4, 4–6 and 7–12 years), rated on a 7‐point scale where higher scores indicate poorer HRQoL. Items are grouped into three domains: emotional impact (EI), that is, emotional distress and future concerns; food anxiety (FA), that is, worries about food safety and labelling; and social and dietary limitations (SDL), that is, restrictions in diet and social life [13]. The questionnaire also covers the child's allergies, past reactions (symptom burden), diagnosis and epinephrine prescription [10]. FAQLQ‐PF has previously been translated and validated into Swedish [11]. Internal consistency in this sample indicates high reliability (Cronbach's α > 0.9) [10, 14].

2.3. Statistical Analysis

The mean FAQLQ‐PF score was calculated for both overall and domain‐specific HRQoL. To provide a comprehensive overview of the data, both mean (SD) and median (IQR) values are reported, depending on data distribution and group characteristics. The interquartile range (IQR), defined as the range between the 25th and 75th percentiles, was used to describe the spread of non‐normally distributed data. Parametric tests (e.g., independent t‐tests) were used when HRQoL scores were normally distributed across balanced groups, such as age and number of food allergies. For comparisons involving skewed distributions or unequal group sizes, such as epinephrine autoinjector prescription, history of anaphylaxis and symptom burden, non‐parametric tests (Mann–Whitney U) were applied, and results are presented as medians with IQRs.

To assess the representativeness of the sample, the total FAQLQ was compared with a recent Swedish study [13] using an independent t‐test. No significant difference was found (mean = 2.70, SD = 1.25, n = 48 vs. mean = 2.65, SD = 1.32, n = 63; p > 0.5), supporting the representativeness of the present sample.

Differences in domain‐specific scores were analysed using Friedman's two‐way analysis of variance by ranks. Associations between HRQoL and symptom burden were assessed using Spearman's rank correlation.

Symptoms reported in the FAQLQ‐PF were categorised into six groups: skin, oral cavity, mucous membranes, respiratory, gastrointestinal and cardiovascular. In addition, symptoms were grouped by the number of affected organ systems (0–3 vs. 4–6), in line with previous study designs [11].

Mann–Whitney U‐tests were used to compare HRQoL based on gender, epinephrine autoinjector prescription, history of anaphylaxis, symptom categories, number of symptoms and type of food allergy. As overall HRQoL was normally distributed across age groups (1–6 vs. 7–12 years) and number of food allergies (≤ 2 vs. ≥ 3), parametric tests were applied.

All statistical analyses were performed using IBM SPSS Statistics, version 29. A p value < 0.05 was considered statistically significant.

2.4. Ethical Considerations

The study was approved by the Swedish Ethical Review Authority (Dnr: 2024‐04916‐01). Confidentiality was strictly maintained, and all participants remained anonymous throughout data collection and processing. Informed consent was obtained digitally via the questionnaire platform prior to participation.

3. Results

3.1. Participant Characteristics

A total of 52 parents participated in the survey. Each parent responded on behalf of one child, of whom 28 (54%) were boys. The children had a mean age of 5.2 years (SD ± 3.3). Forty‐eight children (92%) had a current food allergy. All children were registered at the clinic due to food allergy at the time of inclusion, although four children had outgrown their allergy or were no longer symptomatic when responding to the questionnaire. The most common allergens were hen's egg (67%), cow's milk (42%) and tree nuts (35%) (see Figure 1). All children had their allergy diagnosed by an allergist or paediatrician using clinical history, skin prick testing, or specific Immunoglobulin E (IgE).

FIGURE 1.

The prevalence of food allergy among the allergic children in the study (n = 48, aged 1–12 years). The category ‘Other’ included reported allergies to chicken, turkey, chia seeds, quinoa, buckwheat, oats, rye, lupine, lentils, pink pepper, sweet potato, banana and kiwi.

Among the children with food allergies, 24 (50%) were allergic to two or fewer foods, while seven (15%) were allergic to more than 10. The most reported symptoms were gastrointestinal and skin‐related, such as nausea, vomiting, stomach ache, diarrhoea, itchy skin, red rash and hives. Cardiovascular symptoms were the least frequently reported (Table 1). Sixteen children (33%) had experienced an anaphylactic reaction, and 10 (21%) had a prescription for an epinephrine autoinjector (AnaPen/EpiPen).

TABLE 1.

Descriptive statistics for the number of foods avoided and the types of symptoms experienced due to food allergy among participating children (n = 48, aged 1–12 years).

	N (%)
Number of food allergies
≤ 2	24 (50)
3–6	17 (35)
6–10	0 (0)
10+	7 (15)
Symptoms
Skin	38 (79)
Oral cavity	23 (48)
Mucous membrane	21 (44)
Respiratory	24 (50)
Gastrointestinal	38 (79)
Cardiovascular	7 (21)

3.2. Impact of Age, Gender and Food Allergy Burden on HRQoL

The median overall HRQoL score among all children was 2.5 (IQR 1.6). Among the domain‐specific scores, the highest burden was observed in the SDL domain (median 2.9, IQR 2.2) and the lowest in the FA domain (median 2.1, IQR 2.3) (Table 2). However, no statistically significant differences were found between the domain‐specific scores (p = 0.09). No significant difference in HRQoL was observed between boys and girls (p = 0.59). Similarly, no statistically significant difference (p = 0.05) was found between the two age groups: children aged 1–6 years (n = 35, mean = 2.5, SD = 1.1) and those aged 7–12 years (n = 13, mean = 3.2, SD = 1.4), although the result was at the threshold of significance.

TABLE 2.

Overall and domain‐specific HRQoL mean score in children with current food allergies (n = 48).

HRQoL a	Median (IQR)	Mean (SD)
Overall	2.5 (1.6)	2.7 (1.2)
FA	2.1 (2.3)	2.5 (1.4)
EI	2.4 (1.5)	2.6 (1.2)
SDL	2.9 (2.2)	3.0 (1.4)

Abbreviations: EI, emotional impact; FA, food anxiety; SDL, social and dietary limitations.

^a Health‐related quality of life (HRQoL) measured with FAQLQ‐PF, on a scale of 1–7, where 1 corresponded to the best possible HRQoL and 7 corresponded to the worst possible HRQoL.

To examine whether HRQoL differed based on the number of foods the children were allergic to, an independent t‐test was performed. The analysis showed a statistically significant difference in HRQoL (p < 0.01) between children allergic to two or fewer foods (n = 24, mean 2.2, SD 1.0, median 2.0, IQR 1.9) and those allergic to three or more foods (n = 24, mean 3.2, SD 1.3, median 3.1, IQR 1.9).

Further analysis showed significantly higher burden in children with cow's milk allergy (n = 20, median 2.9, IQR 1.8) compared to those with other food allergies (n = 28, median 2.0, IQR 1.8; p < 0.05). No significant differences in HRQoL were observed between children with and without allergies to peanuts, tree nuts, or hen's egg.

3.3. Impact of Epinephrine Prescription and Symptom Burden on HRQoL

Children prescribed an epinephrine autoinjector (AnaPen/EpiPen) reported significantly lower HRQoL compared to those without a prescription (Table 3). Additionally, significant differences were observed in the domain‐specific mean scores for FA and SDL, with lower HRQoL among children with an autoinjector prescription (p = 0.01 and p < 0.05, respectively). No statistically significant difference in HRQoL was found between children with a history of anaphylaxis and those without (Table 3).

TABLE 3.

Disease severity and overall HRQoL mean score according to previous anaphylactic reaction, prescription of epinephrine autoinjector (AnaPen/EpiPen) and symptoms from number of organ systems (n = 48).

		N	Median	IQR	p
Previous anaphylactic reaction	No	32	2.5	1.5	0.53
	Yes	16	2.8	1.5
Epinephrine autoinjector prescription	No	38	2.4	1.6	< 0.05
	Yes	10	3.3	1.6
Number of symptoms	≤ 3	28	2.4	1.7	< 0.05
	4–6	20	3.1	1.8

Note: Health‐related quality of life (HRQoL) measured with FAQLQ‐PF, on a scale of 1–7, where 1 corresponded to best possible HRQoL and 7 corresponded to worst possible HRQoL, based on parent report. The table presents the median of the participants' individual mean scores.

A statistically significant correlation was found between overall HRQoL mean score and the number of organ systems the child had symptoms from (r = 0.50, p < 0.001). This indicates that the more symptoms, the poorer HRQoL. Furthermore, children with symptoms from four to six organ systems (skin, oral cavity, mucous membranes, respiratory, gastrointestinal, or cardiovascular) reported significantly poorer HRQoL (median 3.1, IQR 1.8) compared to those who experienced symptoms from three or fewer organ systems (median 2.4, IQR 1.7) (Table 3).

Furthermore, children who experienced gastrointestinal symptoms or mucosal symptoms had poorer HRQoL compared to those without such symptoms (Figure 2).

FIGURE 2.

Overall HRQoL mean score based on the occurrence of symptoms from different organ systems (skin, oral cavity, mucous membrane, respiratory, gastrointestinal and cardiovascular), in children with food allergies (n = 48). Health‐related quality of life (HRQoL) measured with FAQLQ‐PF. *p < 0.05, ***p < 0.001.

4. Discussion

This study aimed to describe health‐related quality of life (HRQoL) in Swedish children with food allergy. We hypothesised that children with multiple food allergies would report lower HRQoL than children with two or less food allergies, that school‐aged children (7–12 years) would have poorer HRQoL compared to preschool children (1–6 years), and that HRQoL would be negatively affected by disease severity. These hypotheses were partially confirmed.

The findings indicate that children prescribed an epinephrine autoinjector, those with three or more food allergies, and those experiencing symptoms affecting four or more organ systems reported significantly lower HRQoL. These factors may reflect disease severity and are consistent with previous research [11, 13, 15]. A negative association was also observed between HRQoL and the number of affected organ systems, indicating that a greater symptom burden is associated with poorer HRQoL. Furthermore, children with cow's milk allergy reported significantly poorer HRQoL compared to those with other food allergies, confirming earlier findings [15]. The underlying reasons for this remain unclear, and further research is needed to explore the specific challenges associated with cow's milk allergy from the child's own perspective.

No statistically significant difference in overall HRQoL was found between preschool children and school‐aged children. However, the p value approached significance (p = 0.05), and the observed mean difference of 0.7 may be clinically relevant, as a change of ≥ 0.5 points is considered meaningful [13, 16]. A previous Swedish study reported lower HRQoL and higher scores in EI and FA domains among children aged 6–12 years compared to younger children, suggesting that older children may be more aware of the challenges associated with food allergy [13]. Similarly, a recent study found that HRQoL worsens with increasing age, possibly reflecting the growing burden of responsibility and awareness of the potentially life‐threatening nature of food allergy [15]. The lack of significant age‐related differences in our study may be due to the relatively small sample size and uneven age distribution, increasing the risk of a type II error.

Children with a prescription for an epinephrine autoinjector (AnaPen/EpiPen) had significantly higher scores in the FA and SDL domains, indicating greater impairment in these areas. These domains capture concerns related to food safety, eating outside the home, inadequate labelling, dietary restrictions and limitations in social participation. Similar findings have been reported previously, particularly regarding the FA domain [13]. In our study, SDL had the highest domain‐specific scores overall, while FA was lowest, though differences were not statistically significant. Although the differences between domain‐specific scores were not statistically significant (p = 0.09), the observed trend, with highest scores in SDL and lowest in FA, may still be clinically relevant and aligns with previous findings. This pattern aligns with earlier findings [11], suggesting that social and dietary limitations may have the greatest overall impact on HRQoL, while food anxiety is particularly burdensome for children with more severe allergies.

In this context, it is important to note that only a minority of children in the study had a prescription for an epinephrine autoinjector. This reflects current Swedish clinical practice, where epinephrine autoinjectors are prescribed primarily to children who have experienced Grade 2 or 3 anaphylaxis triggered by food, insect stings, or unknown causes on more than one occasion, or who have shown allergic symptoms upon exposure to airborne food allergens such as peanuts or tree nuts [17]. This more restrictive approach may explain the relatively low prescription rate observed in our sample.

No significant difference in HRQoL was observed based on a history of anaphylaxis, in contrast to some previous studies [11]. This discrepancy may be due to the smaller sample size and unequal group distribution. However, the literature remains inconsistent. A large European study found no association between anaphylaxis or epinephrine autoinjector prescription and HRQoL in children or adults [12]. Similarly, a study on nut allergy reported that while mothers experienced improved quality of life when their child had an autoinjector, no such effect was seen in the children themselves [18].

These findings, together with our own, suggest that the experience of anaphylaxis may not be the sole or primary factor influencing HRQoL. Although we consider this an important insight, we are unable to determine the underlying reasons. Future research should explore children's own perspectives on living with food allergy and investigate which factors they perceive as most influential on their quality of life.

Our findings suggest that it is not the experience of anaphylaxis per se, but rather the implications of carrying an epinephrine autoinjector, such as the constant awareness of risk and the need to bring it to school, social events, or restaurants, that may negatively affect HRQoL. The prescription itself signals the potential for severe reactions, which may contribute to anxiety. A recent study found that among children over 6 years, recent use of an autoinjector was the strongest predictor of reduced HRQoL, while longer time since the last use or anaphylactic event was associated with better outcomes [15]. The same study also highlighted that children were primarily affected by fear of allergic reactions, while adolescents often experienced discomfort and self‐blame.

To ensure that children with food allergies gain the full benefit of epinephrine autoinjector prescriptions, enhanced education and communication between parents, schools and healthcare providers are essential. This facilitates correct and timely use of the medication and helps ensure that the child consistently carries it [19]. Educational interventions, such as providing tailored information and support, have been shown to improve quality of life for both children and their parents [20]. Such initiatives should be actively developed and implemented in future clinical practice.

5. Strengths and Limitations

A key strength of this study is the use of the FAQLQ‐PF, a validated, disease‐specific instrument with high internal reliability, confirmed both in this study and in previous research [10, 16]. Although a very high alpha may suggest item redundancy [14], the questionnaire has demonstrated sensitivity to change and strong longitudinal validity [16]. Disease‐specific tools such as the FAQLQ‐PF provide more nuanced insights into the impact of food allergy on HRQoL than generic instruments and can be used to evaluate interventions, clinical trials and inform policy [16, 21].

No formal power analysis was conducted prior to data collection, as the study aimed to include all eligible families within a defined clinical population. The relatively small sample size may limit the generalizability and statistical power of the findings. However, the study population is considered representative of children with food allergy. Representativeness was supported by comparison with a national reference group, showing no significant difference in overall HRQoL between the groups.

In present study, the children had their diagnosis confirmed through clinical history, skin prick testing or specific Immunoglobulin E (IgE), reducing the risk of misclassification. This is important, as prevalence estimates differ markedly between self‐reported and clinically confirmed food allergy [3, 22].

However, several limitations should be noted. The cross‐sectional design precludes causal inference, and potential confounding factors such as comorbidities, for example asthma and atopic dermatitis, medications, socioeconomic status and parental education were not assessed. Previous studies have shown that such variables may influence HRQoL in children with chronic conditions [23, 24].

Another limitation is the lack of control over who completed the questionnaire. Although only eligible families received the survey link, it is theoretically possible that the same person responded multiple times or that someone outside the family completed the form. On the other hand, anonymity may have encouraged honest responses, which can be seen as a strength.

The study excluded families who did not understand Swedish, which may limit generalizability. Cultural background has been shown to influence HRQoL and coping strategies in food allergy [12]. Furthermore, as the FAQLQ‐PF is a proxy‐reported instrument, there is a risk of discrepancy between parent and child perspectives. Some studies suggest that parents may underestimate or overestimate their child's HRQoL [23, 25]. Nevertheless, the FAQLQ‐PF is a well‐established tool with high validity and reliability for capturing parental perceptions of their child's quality of life [10]. In clinical practice, both child and parent perspectives should be considered.

Although several previous studies have examined HRQoL in children with food allergies, this is the first Swedish study to focus specifically on children aged 1–12 years using the FAQLQ‐PF, with detailed analysis of symptom burden, cow's milk allergy and epinephrine autoinjector prescription. These findings provide novel insights into the specific challenges faced by young children in a Swedish clinical context. Future studies should further investigate child‐centred perspectives and evaluate targeted interventions to improve HRQoL in children with food allergies.

6. Conclusion

Children with food allergies face reduced health‐related quality of life, especially those with multiple allergens, cow's milk allergy, or symptoms affecting several organ systems. The burden is highest among children prescribed an epinephrine autoinjector, reflecting emotional and social challenges. No significant differences were found based on age, gender, or history of anaphylaxis. Clinicians should pay special attention to children with high symptom burden and multiple allergies, as they are at greater risk of impaired well‐being. Future research should focus on child‐centred perspectives and effective interventions to support these vulnerable groups.

Conflicts of Interest

The authors declare no conflicts of interest.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.