Quality of life of children with bronchial asthma disease

Summary

Background.
The aim of this study was to determine how children with bronchial asthma disease assess their quality of life and to find domains of physical and psychosocial health in relation to age and gender. The quality of life compared with the healthy children and parents of asthmatic children and healthy parents.

Methods.
The research sample consisted of 199 children and 125 parents. Adepts for the study were selected by standardized questionnaires on the quality of life of the pediatric version of the PedsQLTM 4.0 and questionnaires PedsQLTM 2.0 module impact on the family. The research was conducted between September 2010 and January 2011 in the pediatric allergology ambulances and physicians in the University and Municipal Hospital in Ostrava.

Results.
The mean quality of life of asthmatic children is 74.41, a statistically significant difference between the physical (78,81) and psychosocial (72,06) dimensions of health. The analysis shows that girls evaluate their quality of life worse than boys. The worst quality of life was found among children in the age group 5–7 years. No statistically significant difference in the quality of life was found between the asthmatic and healthy children. Between parents of asthmatic and healthy children statistically significant difference in the quality of life was found.

Conclusions.
Between asthmatic and healthy children no difference in the quality of life was found. We must not forget that the quality of life of the parents of asthmatic children is significantly influenced by the chronic disease of their children.

Key words:
quality of life, children, asthma, Questionnaire PedsQL.

INTRODUCTION

Bronchial asthma is one of the most common chronic diseases of children, with ever-increasing prevalence. It is estimated that 300 million people worldwide suffer from asthma today (1). In the Czech Republic, the disease of asthma also has a continuous rising trend. The prevalence of asthma is estimated at 8%, mortality is traditionally very low. Of the total number of selected diseases treated at alergology centres in CR, 51% was among people younger than 19 years. In 2009 in the Moravian-Silesian Region, 39 387 children diagnosed with bronchial asthma aged 0-5 years were dispensarized, in the age group 6-14 years, 2 770 children were dispensarized, and among 15 to 19 years old children, 8 352 were dispensarized (2).

Bronchial asthma is one of frequent and serious illnesses of children, affecting quality of life of both, children and their parents. For children, it not only affects health but also other aspects of life, such as school attendance, physical activity, family situation, social contacts, psychological function of the individual and sleep (3). Among the indicators of overall decrease of thequality of life, an increased number of days of hospitalization,an increased number of visits to the allergist, an increased number of missed days at school and an increased number of days of sick leave of parents are included (4). Even though asthma is a chronic disease that can not be definitively cured,a relatively satisfactory quality of life can be achieved, based on compliance with all recommendations and guidelines set by the physician. If a child‘s asthma is completely under control, it does not bother every day, nocturnal symptoms and exacerbations.

The aim is to determine how children with asthma disease assessed their quality of life, and what are the different domains of physical and psychosocial (own feelings, relationships with others at school) health;and further more, to consider these differences depending on thein age and gender. At the same time, another goal is to compare the quality of life of healthy and asthmatic children and their parents. The results may contribute to the quality of life of asthmatic children in the Moravian-Silesian region, as well as serve as a benchmark for evaluating the quality of life according to questionnaires about thequality of life of pediatric PedsQL.

FILE

The research sample consisted of 199 children aged 5 to 18 years, 108 (54%)of whichare girls and 91 (46%) boys. Further investigation also involved 125 parents at the age between 28 to 50 years, 105 (84%)of which were women and 20 (16%) men. The research wasconducted in the period from September 2010 to January 2011, at theUniversity Hospital in Ostrava,the City Hospital in Ostrava (the allergy clinic), followed by two expert allergy clinics in Ostrava. The control group of healthy children (without anychronic illnesses) and their parents came from the village ofSedlnice (Novy Jicin district).

The basic criteria to be included intheresearch groups: children 5 to 18 years, children with diseases of asthma and parents of children living in the city of Ostrava, children and parents visiting the allergy clinic in Ostrava, children and parents with the ability to communicate and understand the Czech language, health conditionsthat enable cooperation of the child, verbal consent from parentsallowing includingchildren in theresearch and willingness to cooperate. The basic criteria to be included in the control group: children 5 to 18 years, healthy children (without any chronic illnesses), children and parents living in the village ofSedlnice (Novy Jicin district), children and parents with the ability to communicate and understand the Czech language, verbal consent from parentsallowing including children in the researchand willingness to cooperate.

The analysis of data obtained by questionnaires was carried out by thecomputer programs, Microsoft Excel and Stata statistical software. Demographic variables were processed using descriptive statistics (mean, standard deviation, absolute and relative frequency, minimum and maximum value). To determine the relationship between demographic characteristics and investigational items of thequestionnaire the inductive statistic was used (Two-sample T-test). For further analysis of the data SATA statistical softwarewill be used, which will calculate the analysis of variance ANOVA and Bonferroni correction. Statistical significance was set at 0.05 (5%).

METHODS

To determine the quality of life of children with asthma,the questionnaire method was used. After a search of available and still used questionnaires of the quality of life for this research, we chose an anonymous standardized questionnaireby James W., certified translation of thepediatric quality of life questionnaire PedsQL™ and the PedsQL™ Family Impact Module, which were supplemented with demographic data.

The general questionnaire on pediatric quality of life consisted of 23 questions and it was in accordance with the definition of health according to WHO divided into two dimensions (physical health and psychosocial health). The dimension of physical health included 8 questions focused on physical activity, daily activity, pain and energy. The dimension of psychosocial health included 15 items divided into three areas emotional, social, and school area). Each of those areas consisted of 5 questions. Emotional area was focused on the unpleasant feelings of worry or fear, sadness, andanger, as well asonsleepingdifficulty and fear of what will happen. Secondly, thesocial dimension investigated primarily social relationships with other children. This area was focused on problems related with other children (whodo not want to be friends,make jokes etc.) and difficulties in keeping pace with other children and problems withcoping the same things as other children in their age category. Thirdly, the school dimension focused on the issues of attention in class, forgetting things, problems withmeeting school responsibilities and the absence in school due to illnessesand visits to doctors or hospitals.

Thethe PedsQL™ Family Impact Module questionnaires included 36 questions divided into eight areas. The first area of ​​assessment of physical function included 6 questions focused on issues such as fatigue, physical weakness, headache and stomachache. Emotional and emotional features assessed the frequency of feelings of anxiety, sadness, anger, frustration and helplessness. In the category of social features parents answered questions about feelings of isolation, difficulties in obtaining support from others and also about the problems of finding time and energy for leisure activities. The fourth area was focused on the cognitive functions (attention, memory, thinking). Questions focused on evaluating the area of ​​communication are 3 and address the difficulties in communicating about the health of the child, difficulties to tell the doctors or nurses as the parent feels. The remaining two areas deal with situations that could be a problem for the whole family. Areas of daily activities, how much time and effort to take, whether a parent has the time to do domestic duties and whether they feel tired afterwards, so that these obligations could finish. Last category was family environment and relationships that contains questions focused on communication between family members, conflicts, stress, tension, solving problems and making decisions within the family. Parents and children aged 8 years and evaluated the quality of life on a five-point Likert scale (0 - never, 1 - almost never 2 - sometimes, 3 - often 4 - almost always). Children aged 5-7 years the quality of life assessed using the 3-point scale with faces. Scoring in this case, 0 - never 2 - sometimes, 4 - almost always.

Evaluation of standardized questionnaires on quality of life was carried out according to predetermined instructions author. The score is transformed to a scale of 0 to 100 Items are reversed scored and linearly on a scale as follows: 0 = 100 1 = 75 2 = 50, 3 = 25 4 = 0 It is true the higher the score, the better the quality of life conditional health (5).

RESULTS

The main objective was to determine how children with asthma disease assessed their quality of life and what are the different domains of physical and psychosocial health. Intermittent asthma in our group suffered 70% of children (34 girls and 37 boys interviewed). 25% of children suffered from mild bronchial asthma (14 girls and 11 boys) and 5% of children with moderate classification of asthma which included 2 girls and 3 boys. The research did not include any children with severe persistent asthma.

Based on analysis of the calculations, the average value of quality of life of asthmatic children was calculated (see Table 1.). A statistically significant difference between physical and psychosocial dimension of health was discovered.

In the individual domains of physical health was the best evaluated item asking the difficulty in bathing or showering (95.55). The lowest value of the quality of life (64.36) showed the children the energy (feel tired and do not want to play).

Based on further calculations, the average quality of life was this quality compared between girls and boys. Measured p-value = 0.0466 indicates a statistically significant difference in overall quality of life between boys and girls. Between girls and boys there is a statistically significant difference (p = 0.0190) in the evaluation of the quality of life in the physical, the emotional dimension, where p = 0.0070. In other areas has not been demonstrated statistically significant difference in the quality of life between girls and boys.

For further testing in asthmatic children by age was used analysis of variance ANOVA and Bonferroni´ s test. The lowest average value of the physical quality of life have children aged 5-7 years. In contrast, children aged 13-18 years assessed the quality of life best. Based on the calculation of Bonferroni´s physical dimension of quality of life test is a significant difference between the group of children aged 5-7 years and a group of children aged 8-12 years.

Survey participated in 98 healthy children (without chronic illness), which formed the control group designed to compare the quality of life of children with asthma (101) (see Table 2.)

Based on the results ofTwo-sample t-test was determined p-value (p = 0.181785), which is higher than the level of statistical significance of 0.05. These results indicate that no statistically significant difference in the quality of life among the healthy population of children and children with asthma disease.

The research survey involved 125 parents aged 28 to 50 years. Quality of life of parents was compared according to the PedsQL questionnaire module affect the family. There was a statistically significant difference in the quality of life among parents of healthy children and parents of children suffering from bronchial asthma (see Table 3.)

Data analysis shows that parents of sick children are not tired to the extent that they can not do things that they like, but show considerable fatigue during the day (60.94) and also feel tired when getting up in the morning (60.94). Parents enrolled in the control group at least feel physically weakened (84.84), by contrast, rated the lowest (71.72) feelings of headache, which means worse quality of life in this area. The results of calculations of the emotional dimension of quality of life indicate that parents of asthmatic children with feel at least frustrated by contrast, most angry. Compared with the control group is the same. Was also evaluated social area, where parents of asthmatic children have problems looking for leisure time activities and social life (67.58), to a certain extent, but in their responses to at least feel isolated from their surroundings (78.13).

In the following questionnaire, we find a statistically significant difference in assessment items in the field of communication. Parents of children with asthma disease think that other people do not understand their family situation (66.41). Best quality of communication show in communicating their own feelings with doctor or nurse. Parents of children with asthma disease have the greatest fear that medications that their child is taking, have some side effects. The biggest problems in the family area, are more parents of asthmatic children in the first item, focusing on family activities. These activities take a lot of effort and time (the intervention group - 65.63, control group - 77.46). Group of parents of asthmatic children shows that among members of the family stress and tension at the highest level (67.58).

DISCUSSION

Results comparing the quality of life of asthmatic girls and boys in Ostrava show statistically significant difference between the sexes. Also, the latest data suggest differences related to gender and disease epidemiology of asthma. Studies on this topic indicate an increased incidence of asthma among girls and women. Kynyk, (6) in his work shows that women suffering from asthma have worse quality of life and increasingly use health care. However, no one has been able to fully explain the reasons for these differences. Kynyk believes that this condition could be influenced by sex hormones, changes in perception of airway obstruction, bronchial hyperactivity, or compliance with the regimen and therapeutic procedures. With recommended treatments (adherence) for patients with allergic rhinitis and asthma dealed Rybníček (7). For all chronic diseases is common that some patients do not comply with the recommended therapeutic measures. The poor quality of cooperation is largely responsible for part of the problems and symptoms associated with disorders of bronchial asthma. On the basis of further study on sex differences in asthma in Estonia was the teenage population evaluated worse overall quality of life of girls. Girls rand harder to assess aspects of physical, and psychosocial health. (8) In Greece, a survey was conducted in which the authors focus on specific symptoms of asthma (wheezing) and the prevalence of this disease in relation to sex. The result was the finding that there is an increase in asthma symptoms in an urban environment, especially with the increased proportion of boys than girls (9). In this set of research work exists between girls and boys, a statistically significant difference (p = 0.0190) in the evaluation of the quality of life in the body area. Boys evaluate the quality of physical dimensions better than girls. Also Sorkness, (10) in his study indicates a greater influence disease bronchial asthma in girls at a younger school age. Especially for girls aged 8-14 years, most quality of life affects one of the symptoms of asthma, and cough (11). Chronic cough causes a considerable burden for parents and children and if it is poorly diagnosed and treated can lead to progressive changes in the airways. Chang also talkes about chronic cough in children(12) and emphasizes optimal and reliable solutions to chronic cough in children.

We found significant differences in the physical quality of life assessment in children aged 5-7 years and 8-12 years. The group's youngest children has relatively worse assessment of the physical dimension of quality. Compared with studies from Petsiose, (11) was a noticeable difference in quality of life in older children, and aged 8-14 years compared to our group of respondents. These children reported that cough affects their quality of life more than any other asthma symptoms. There are a number of other studies measured the physical activity of chronically ill children, which includes asthmatic children (13, 14). Physical activity in children evaluated in this work includes all daily activities such as walking, running, sport and exercise opportunities, abilities and difficulties in routine hygiene, fatigue, etc. The optimal physical (body) activity can be influenced by both biological, the psychological and social factors. Restrictions affecting the health of chronically ill people pages all activities which that person performs and thus affects the quality of life of all his family. Yet physical activity of chronically ill child brings many benefits and positives. Every child with a chronic illness can perform any physical activity, but it depends on the experience, knowledge doctors and nurses and their willingness to a child and his parents in this area deal.

In assessing the quality of life among the healthy population of children and children with asthma dinase there was not found significant statistical difference. This may be due to the constant progress in treating this disease. In recent years, the introduction of new strategies in prevention, diagnosis, pharmcacotherapy asthma. Pharmacotherapy is becoming more efficient, best use of these drugs are inhaled through a variety of aerosols or via inhaler for powder form of the drug (15, 16, 17, 18). Research and development in diseases like asthma are still bringing new knowledge, new medicines, new diagnostic and therapeutic procedures and thus contributes to improving the quality of life of asthmatics. Effective treatment, cooperation with the treating physician compliance with its recommendations and guidelines (regular monitoring of health status, regular visits, asthma diary management, causing the elimination of all potential triggers from the environment and surroundings in which an asthmatic living) can live a full life without asthmatic exacerbations of acute asthma and further complications. Asthma becomes primarily an outpatient disease and the need for hospital admissions with stays in intensive care for acute asthmatic conditions decreased significantly (1, 19, 20). Vondra, (21) to process data on hospitalization for asthma on the basis of available information, the Institute of Health Information and Statistics and the Czech Statistical Office for the period 1967 - 2007. The average time length of stay for asthma gradually decreases to a minimum. Long-term trend of hospitalization for asthma in the Czech Republic is clearly favorable. Yet, Kratěnová, (22) shows a sharp onset of asthma in children aged 5, 9, 13 and 17 years when the increase reached 8.2% during the last representative epidemiological study. Quality health care is provided even before asthma symptoms manifest.

Parents of asthmatic children have primary responsibility for the proper management of asthma. In 2010Brown talked about the role of parents (23). Brown, as well as the mentioning of the above authors, emphasizes the proper understanding of the nature of asthma. Parents should be able to monitor and respond appropriately to changes in their children's health and should lead them from the beginning to self-monitoring and accountability for their own illness. Bronchial asthma as such affects the whole family life. Rate perceptions of quality of life in parents of asthmatic children is worse than the quality of life of children themselves. These results are also brewing results, (5) which states that the quality of life of chronically ill children is different from the quality of life of their parents. As the position of children and parents access to control asthma has significant implications for the overall management of this disease.

Difference in quality of life found among parents of healthy and asthmatic children in all evaluated areas. Analysis of issues in body area, we find that parents of asthmatic children evaluated the most significant feelings of fatigue both during the day and the morning after awakening. Greater fatigue in these parents may becaused a greater burden of those parents. Křivohlavý, (24) states that the family in which someone gets chronic illness (child or parent) is changing. This increases the overall rate of fatigue of all family members, while also increasing feelings of depression. As the parents of asthmatic children exposed to greater demands in ensuring chronically ill child, they can more fully express feelings of anxiety, sadness, angry, frustration and helplessness. It is also important to pay attention to the quality of life in the social field. Parents of asthmatic children find most difficult time for their leisure activities and social life, if you have the time to find, faced with lack of energy for these activities. The reason for this depletion can be continuous all-day care of the asthmatic child. Often a parent stays awake all night next to a child who has asthma attack.

Mandhane (25) showed that up to 25% of children suffering from asthma or has a permanent or partial symptoms of asthma, that means a certain burden of disease on children and their parents. Also Williams (26) highlights the impact of asthma on the whole family. It is important to have a comprehensive, long-term management plan without exacerbation of asthma, which includes the care of children and their primary caregivers. The role of family functioning in relation to the severity of illness were significant predictors of child-related quality of life of asthmatic children. The level of control over their child's illness, the accumulation of family demands (especially those related to illness and family care) can negatively affect quality of life. Above all, family cohesion emerged as a potential mediating factor that can have negative effects of stress, lack of control of asthma and thus may develop asthmatic symptoms in children (27). Asthma is not contagious or mental disease, but can result in a variety of psychological problems that affect the whole family.

Summary of recommendations for practice:

1. Motivate children and their parents incare of asthma
2. Education of children and parents in partnership in the treatment of asthma bronciale
3. Improving the education of children, their parents and other persons who come into contact with people affected by asthma
4. Provide plenty of educational materials on asthma for children and their parents.

CONCLUSION

Chronic diseases such as bronchial asthma always affect not only the ill child, but also places increased demands on his or her family. Parishioner, Pierchala, (28) consider asthma as a significant problem for children, affecting their everyday functioning. Asthma is a disease affecting people in all age categories, which carries a person for life. But it depends on whether he or she keeps the guidelines and recommendations from their doctor or not. Most importantly, the asthmatic children and their parents should be well motivated to approach and treat this disease. Willingness to accept certain principles and procedures contributes to a better quality of life of these children and their parents. Available data on quality of life of asthmatic children and their parents in the city of Ostrava (Czech Republic) are the benefit of this work, but also new standards for quality of life assessment using questionnaires PedsQL.

Address for correspondence:

Mgr. Jana Chromá

Ústav ošetřovatelství a porodní asistence LF OU

Syllabova 19, 703 00 Ostrava-Zábřeh

e-mail: janachroma@centrum.cz