https://orcid.org/0000-0001-7862-9827
ABSTRACT
Background
The American Academy of Pediatrics Children’s Health Survey for Asthma (CHSA) is a widely used instrument to assess various aspects of health and well-being in relation to asthma. There is a parent and a child version of this questionnaire and little is known about the concordance between these versions.
Method
In a cross-sectional study conducted in 13 facilities, hospitals and outpatient clinics covering all areas of Kosovo, children with asthma aged 7–16 years were enrolled. Information about asthma diagnosis was obtained from the treating physician. Children and parents answered the CHSA, parent or child version (CHSA-C) as well as a number of questions about environmental conditions, health insurance and socio-demographic characteristics
Results
The survey included 161 Kosovar children with asthma and their caregivers. Although there were significant differences between parents and child versions regarding physical health, child activity and emotional health, with parents rating physical and emotional health higher and child activity lower, there were significant correlations (R > 0.7) for physical and child activity scales but only a low one (R = 0.25) for emotional health. Inspection of concordance for single items revealed very high correlations (>0.9) for all disease events, but a significant underestimation of the number of wheezing episodes by parents. Good agreement was found for statements about disease severity.
Conclusions
The high correlation between information about children’s health obtained from parents and children underlines the usefulness of parents as source of information on child’s asthma. Impact of the disease on emotional health is, however, underestimated by parents.
Introduction
Asthma is a chronic disease that has been recognized as an important public health issue worldwide, causing a major global health burden. Over the past two decades, evidence about asthma pathophysiology has grown and it is now accepted that asthma is a complex chronic immunological inflammatory disease of the respiratory tract with a main impact on respiratory function, characterized by symptoms of “wheezing, shortness of breath, chest tightness, and cough“ [Citation1]. Whereas many infectious diseases such as tuberculosis, malaria, hepatitis, pneumonia, dysentery, and helminthes infestations are still an issue in developing countries, in developed countries increased prevalence of asthma, allergic disorders, Crohn’s disease, type 1 diabetes, and other chronic diseases as well as autoimmune diseases are of growing concern [Citation2].
For asthma prevalence in Europe, the International Study of Asthma and Allergies in Childhood (ISAAC), and the European Community Respiratory Health Survey (ECRHS) have provided insight into trends using standardized methods [Citation3].
Epidemiology of asthma varies between Western and Asian countries, with higher prevalence in more developed countries but lately with increasing prevalence in Asia as well. Possible causes for these differences in epidemiology between the Western and Asian countries are differences in socioeconomic status, degree of urbanization, rates of infection, health-care practices, and genetic factors [Citation4].
The Agency for Healthcare Research and Quality uses adult and pediatric asthma among the 16 indicators of preventable hospitalizations as measures of quality of primary health-care services. Hospitalization for preventable and controllable diseases such as asthma indicates a lack of asthma control and low quality of asthma management, which is mostly the result of a lack of communication between providers and patients, a lack of patient self-management, and a lack of access to care [Citation5]. Control of asthma is far from optimal worldwide and this explains the burden for the society since insufficient asthma control is associated with increased hospitalizations and emergency health-care utilization [Citation6].
Efficient asthma management improves control of the disease, to achieve physical, mental and social wellbeing and enhancing quality of life. Clinical approaches besides treatment should be associated with patient awareness in managing disease [Citation7]. An important part of the assessment of individual patients’ situation is the application of structured and validated questionnaires. For children, the Children’s Health Survey for Asthma (CHSA) is widely used for this purpose. There are two versions of this instrument: a parent and a child version (CHSA-C). While children should be included in the assessment as early as possible, parents can provide valuable information as well. However, little is known about the concordance concerning the different dimensions of the survey.
The objective of the study
We aimed to determine the relationship between the results of CHSA obtained from parents (guardians) and from children themselves.
Material and methods
This is a cross-sectional observational study, including information obtained from children and parents. The study has been approved by the local ethics committee.
Data were collected from
the Immunology Clinic and Pediatric Clinic at the University Clinical Centre of [];
five hospitals in Mitrovica, Gjakova, Peja, Prizren and Gjilan;
five primary health-care centers in five towns all over Kosovo (in Prishtina, Mitrovica, Peja, Prizren and Gjakova);
and at two private immunology clinics in Prishtina ‘Analiza’ and ‘Ylli’.
This multicenter approach was necessary to cover the entire area of Kosovo, and to include patients from all social groups. Data were collected from all three levels of health care, from both public and private sectors. In each institution, coordinators were selected and provided with a booklet with instructions for the selection and registration of children with asthma and their caregivers.
Questionnaires were administered by trained personnel. The personnel was informed about the aim of the study and the questionnaire structure, and about inclusion and exclusion criteria.
The survey included 161 Kosovar children with asthma, aged 7–16 years and their caregivers. Participants were enrolled on a consecutive basis. Overall, 16 patients were eligible, 9 of them females, but refused to participate because of time constraints.
Data were collected over 5 months in the selected centers until the projected sample size was achieved. Data collection was completed in 2014. Parents and children over 16 years of age signed an informed consent. Parents answered the questionnaire in a room separate from the children. Children and adolescents between 10 and 16 years of age completed the questionnaire themselves separated from parents, while children younger than 10 years were interviewed by trained medical personnel.
Inclusion criteria were age range 7–16 years, presence of physician-diagnosed asthma, and living in Kosovo for the past year.
Exclusion criteria were presence of other chronic diseases of the child or severe acute diseases in the past 2 weeks.
Children’s health surveys for asthma – parent version
CHSA (17) is a reliable and validated instrument used to assess the impact of asthma on daily life. It took several years to develop the final version of this questionnaire. CHSA is an asthma-specific health status measurement, completed by parents of children with asthma 5–16 years of age. The CHSA can be used alone or as a companion to the child-completed CHSA-C. It consists of 46 core items, belonging to five asthma-specific domains for assessing child’s physical health (12 items), child activity (4 items), child and family emotional health (7 items), and also covering additional items about health-care utilization, asthma triggers, and family demographics (23 items). Each scale is transformed to the range 0–100, according to the developers’ instructions, with higher scores indicating better health.
There are various timeframes for assessing children’s health. The CHSA can be applied for 2-, 4-, or 8-week recall periods. We have chosen the 2-weeks version to cover the most recent status of the child, which has been shown to have equal or superior reliability compared to the longer recall periods [Citation8].
Children’s health surveys for asthma – child version
At present, there is a growing trend to include children’s assessment of their own health status. The most complete picture of children’s health can be obtained when it is combined from two or more sources. The CHSA-C was adapted from CHSA parent version with numerous child-friendly modifications. The resulting instrument is an interviewer-administered (children aged 5–9 years) or self-completed (children aged 10–16 years) instrument for children with asthma. The CHSA-C can be used alone or as a companion to the parent-completed CHSA. CHSA-C consists of 21 core items covering asthma-specific domains: child physical health (7 items), child activity (3 items), and child emotional health (2 items), additional items cover health-care utilization, asthma triggers, and child demographics (9 items).
Additional items
Questions to parents were added about socioeconomic status, health insurance, information regarding child therapy, number of family members in the household, occupational status, dwelling place, flat space, environmental conditions like air quality, nearby factories and waste deposits.
Statistical methods
Groups were compared by non-parametric statistical methods (Mann–Whitney test, Kruskal–Wallis test for independent groups and comparison of scores between parents and children by Wilcoxon’s matched pairs test). Correlations were assessed by Pearson correlations (indicated by the small letter ‘r’) or by Spearman’s rank correlation (indicated by ‘r’) depending on the type of variable and on the distribution and type of the relationship. Categorical variables were assessed by chi-square tests or Fisher’s exact probability test. All data obtained were processed without imputation for missing data. Analyses were carried out by SPSS 17.0 (IBM Corp., NY, USA).
Results
Overall, 161 children with asthma were included in the study; among them 99 (61.5%) males. Children were 11.1 ± 2.7 years old, and 156 (96.9%) were Albanians. The majority of children were from urban areas (101; 62.7%).
Parent version of the questionnaire was answered mainly by parents (158; 98.1%), and only 3 (1.9%) by grandparents. Family structure was in 157 cases (97.5%) a joint household with married parents, and only in 2 cases (1.2%) the parents were divorced. Only 93 (57.8%) interviewed parents were employed. Most families had 5–9 members in the household (109; 67.7%), with an average of seven members ().
Table 1. Overview of demographic data for the total sample of children with asthma.
Evaluating the parent version of the CHSA, the highest score was observed for family activity scale (mean 82.9), followed by child physical health scale (mean 80.7), child emotional health scale (mean 73.9), child activity scale (mean 69.4), and the lowest score was observed for family emotional health scale (mean 56.9) ().
Table 2. Parents’ and child’s version of the Children’s Health Survey for Asthma (CHSA) scales. Comparison of parents’ and children’s scores (p-value from Wilcoxon test) and Spearman rank correlation. Scores range from 0 to 100 with higher scores indicating better health.
For child version (CHSA-C), the highest score was observed for physical health (mean 78.1), followed by child activity scale (mean 74.6), and the lowest score for emotional health scale (mean 41.5) (). Although for all three overlapping scales there were highly significant differences between parents and children, results regarding physical health differed only by about 3 points and for child activity by 5 points, with physical health evaluated more favorable by parents and child’s activity less favorable. Large differences were found for child’s emotional health that was considerably less favorably assessed by the children. The correlation between the two versions was moderately high (R > 0.7) for physical health and child activity and low (R = 0.25) for emotional health.
Comparison of parents and children responses to selected items
For the number of wheezing episodes during the past 2 weeks there was a strong correlation () between child and parent version but still a significant (p < 0.001) difference between parents and children with lower numbers stated by parents. The average number of days with wheezing during the last 2 weeks was 5.1 as stated by parent version compared to 5.6 times reported by children ().
Figure 1. Relationship between frequencies of wheezing episodes during the past 2 weeks stated by parents and by children.
Table 3. Selected items of the parents’ and child’s version of the Children’s Health Survey for Asthma (CHSA). Comparison of parents’ and children’s statements (p-value from Wilcoxon test) and Pearson correlation.
Similarly, number of asthma attacks (r = 0.91), doctor’s visits (r = 0.90) and missed school days (r = 0.95) showed high correlation between parent and child versions. The average number of asthma attacks during the last 2 weeks was 0.8 for both parent and child versions. No attack during the last couple of weeks was reported by 110 (68.3%) parents and 109 (67.7%) children, followed by one attack with 20 (12.4%) in parent version and 19 (11.8%) in child version. For asthma attacks, doctor’s visits, and missed school days there was no difference between parents and children.
For questions about shortness of breath, tightness in the chest, wheezing with and without a cold, cough due to asthma, persistent cold, and difficulty sleeping due to asthma, there were no significant differences between parent and child versions and correlations were moderately high ().
Table 4. Responses of parents (P) and children (C) to selected items of the Child Health Survey for Asthma, frequencies and p-values (Wilcoxon test) for comparison and Spearman correlation between parent and child version.
Discussion
Asthma affects approximately 300 million people worldwide, and it is expected to increase up to 400 million by 2025. Hence, asthma places a high burden on society worldwide with 0.25 million deaths annually [Citation9]. Worldwide, acute asthma is one of the leading causes of hospital utilization and emergency health-care visits of children [Citation10].
There is no universal questionnaire appropriate for all purposes of population health monitoring. Hospitalization and emergency visits are useful in assessing quality of asthma management in primary health-care institutions but tend to cover more severe cases [Citation11]. The best option for the assessment of individuals and also of groups is using physical, psychological and social wellbeing based on health-related quality of life questionnaires [Citation12].
Patient-reported outcomes represent a range of measures of symptoms, activity limitations, health status, health-related quality of life, patient satisfaction and compliance with treatment [Citation13].
Parents and children may have different attitudes and experiences regarding asthma outcomes; therefore, parents’ statements are important as indirect indicators of child health [Citation14]. However, it has been indicated that mothers of asthmatic children are more prone to develop anxiety, depression and to experience more life stressors than do mothers of non-asthmatic children [Citation15], which could lead to a distortion when reporting about child’s health.
In particular, health-related quality of life seems to be not highly concordant between parents and children. In a previous study, the correlation between child’s and parent’s assessed quality of life ranged between 0.13 and 0.36 for the different domains and, therefore, parent’s reports can hardly be used as a substitute for a child’s self-report [Citation16].
Since parents’ role vary by age of the child, for children up to about 10 years of age, parents may provide important and valuable complementary information, whereas for children above this age parents’ global ratings are in better agreement with the child’s reported health-related quality of life, perhaps because at this age children can better express their feelings and concerns and therefore clinicians will get all the information they need from talking with the children themselves [Citation8].
To our knowledge, no head-to-head comparison of the parents’ and child versions of the CHSA has been published so far. However, since in clinical practice as well as in surveys both versions are applied, and the clinicians need to know to what extend parents can provide reliable information about the child’s health and under which circumstances and about which aspects information from children must be gained, our study intended to close this gap in the evidence. In our study, the average number of episodes of wheezing during the past 2 weeks was 5.1 as stated by parents and 5.6 as stated by children and a high correlation (0.98) was found between these answers, indicating these episodes are well marked in the observations of the patients and their parents. Although there was a systematic underestimation by parents, if the report of the children is taken as reference, this small difference of one episode in 4 weeks on average is of little relevance. Similarly, number of asthma attacks, doctor’s visits and lost school days were in very good agreement and were, in contrast to wheezing episodes, neither over- nor underestimated by parents.
Concerning the average CHSA scores obtained in our study, the pattern is similar concerning the subscales as obtained from three studies combined in the original validation report [Citation8]. However, CHSA physical health was rated better in our study (81 as compared to 63 to 72), and family emotional health was rated lower (57 as compared to 61 to 67). This difference could reflect the greater difficulties and sorrows of parents with a chronically ill child in a society with not fully developed health-care system, where parents have to pay most medical treatments out-of-pocket. Economic conditions and health-care settings may affect parents’ awareness of asthma in the child. Since most parents have to pay for treatment out-of-pocket, this puts a significant financial burden on the families. Many families cannot afford costly asthma control measures and this implies that communication between patients, parents, and physicians is even more important than in a high-income society with a well-established health-care system.
For the three domains that are obtained in both questionnaires, there were high correlations for physical health scores and child activity scale, while it was low (r = 0.25) for child emotional health. However, in all cases, significant deviations between scores of children and their parents were observed. Taking the scores obtained from children as reference, parents underestimated child’s physical health and, more pronounced, child’s activity, and strongly overestimated child’s emotional health. The high correlation, despite the difference in absolute scores, for physical health and activity is not surprising, as these assessments are based on observable behavior. However, emotional health is related to feelings and an appraisal of experiences with the disease that is covert for the parents, and the concordance of assessments will depend on the extend children and parents communicate about these aspects. Since this communication well vary considerably between families, a poor correlation is to be expected.
Consequently, the clinicians must be aware that a full picture of the impact of asthma on the children’s life must include their experiences, thoughts and feelings. Parents can be relied upon when it comes to factual experiences about the expression of the disease and its consequences on daily life, like attacks, lost school days, etc.
Asthma status can be monitored by several tools including the Childhood Asthma Control Test (C-ACT) [Citation17]. Also, this instrument can be used in a parent and child version. A study in The Netherlands revealed a systemic difference in C-ACT scores obtained from parents and children, with parents underestimating and children overestimating asthma control. The difference in scores between children and parents was independent of the child’s age [Citation18]. Nevertheless, information from both parents and children could assist physicians in their decision-making [Citation19].
Also, for other chronic childhood diseases, good correlation between parent’s and child’s responses were reported. For example, the Juvenile Arthritis Functional Assessment Scale correlated well (R = 0.84) between child’s and parent’s versions [Citation20]. In a study evaluating the Child Anxiety Impact Scale moderate (r around 0.35) but significant correlations between child’s and parent’s versions were found. Moreover, considering external criteria, it was found that both versions contributed about equally, highlighting the advantage of integrating both assessments [Citation19].
Clinicians, in order to develop a more effective strategy, would have to be well informed not only about symptoms, but also about the family situation, such as family support, family economic status and social support [Citation21]. Including information provided by the child avoids informant bias and also yields an improvement of predictive power [Citation22].
Asthma management benefits from a good communication among child, parent and clinicians [Citation23]. For this purpose, instruments such as the Asthma Control Questionnaire could be used [Citation24]. But also the CHSA and CHSA-C as a specific, health-related quality of life questionnaire for families of children with chronic asthma is valuable in this respect.
While for all aspects of physical health parents’ reports can be relied upon, for the emotional impact the disease has on the child, the parents are too optimistic. Therefore, physicians and other health-care specialists should be aware of this potential bias and take the child’s view into consideration when counselling parents.
Strengths and limitations
In this study, a large number of children with asthma all around the country was enrolled and a standardized procedure was applied to obtain information from children and their parents about the disease and its consequences. Thereby, a comprehensive picture of this population of patients could be obtained. Despite this, as a cross-sectional study nothing can be said about the dynamics of the relationship in the appraisal of the disease between children and parents. Further, we have decided to solely include the 2-weeks recall period and our results may not apply to longer periods of assessment.
Conclusion
The CHSA, especially when used with multi-informant sources, provides current information about the state of health of asthmatic children. Considering the correspondence between scores obtained by children and parents, it is reassuring that all aspects that belong to the clinical appearance of the disease and its consequences on daily life show good agreement between parents and children and, hence, parents’ information can be relied upon. An exception is the emotional impact of the disease on the child. At least for this aspect, health-care personnel should include information from the patient directly.
Ethical approval
The study has been approved by the Medical Faculty’s Ethical Committee at University of Prishtina, Hasan Prishtina.
Acknowledgments
Support of the Austrian exchange Service (OeAD), Academic mobility Unit (ACM), Department of Cooperation, Ministry for Foreign Affairs, Austria, who supported the doctoral studies through scholarship Bertha Von Suttner to V.Z. is acknowledged.
Disclosure statement
No potential conflict of interest was reported by the authors.
Additional information
Funding
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