Журнал «Здоровье ребенка» 8 (51) 2013
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Relevance of the Studying Quality of Life in Children with Allergic Diseases
Авторы: Tkachenko O.Ya. - Higher State Educational Institution of Ukraine « Ukrainian Medical Stomatological Academy», Department of Pediatrics № 2, Poltava, Ukraine
Рубрики: Педиатрия/Неонатология
Разделы: Справочник специалиста
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Health-related quality of life (HRQoL) measures the functional effects of a disease and its treatment from the particular perspective of the patient. HRQoL is therefore a subjective concept which over the last decade has been shown to be of clinical and economical importance — to the point of having become a basic indicator in all chronic illnesses and in assessing the comparative efficacy of different treatments, whether based on drugs or otherwise. HRQoL is particularly important in many allergic disorders, and in particular in asthma, allergic rhinitis and urticaria, since these are disorders associated with a high prevalence and strong impact upon the daily life of the patient — thereby generating important economical and social costs. Thus, HRQoL now forms part of the clinical follow-up of these patients, and it is widely used in different scenarios, from clinical trials to pharmacoeconomical studies. The classical definition of health-related quality of life (HRQoL) is « the functional effects of a disease and its consequent treatment upon the patient, as personally perceived by the patient”. The instruments used to measure these effects in allergic conditions are the many existing HRQoL questionnaires. As it is known and universally accepted, any HRQoL questionnaire must satisfy some essential psychometric conditions related to viability, validity, reliability and sensitivity to change.
There are two basic types of HRQoL questionnaires: generic questionnaires, which evaluate general aspects ofHRQoL in different populations and are applicable to different diseases and treatment interventions, allowing the comparison of results; and specific questionnaires, which detail the important factors associated to a given disease in a specific population. These latter instruments are useful when comparing drugs in one same disease, and offer greater sensitivity and specificity, though they do not allow comparisons between different diseases. Both types of questionnaires — generic and specific — have been used in application to allergic disorders. The most widely used generic questionnaire is the SF-36 (Medical Outcome Study 36-Item Short Form Health Survey), which has been validated for its application to respiratory allergic disease and is also used to compare the latter versus chronic urticaria in terms of HRQoL. However, for the study of allergic disorders and of the drugs used to treat them, the most useful questionnaires are the disease-specific or skin disease-specific instruments, which offer greater sensitivity to change and specificity. The questionnaires considered to be the most useful in clinical trials and epidemiological studies of rhinoconjunctivitis are the Rhinoconjunctivitis Quality of Life Questionnaire (RQLQ) developed by Juniper. The most widely used questionnaire in most of the clinical trials is the Dermatology Life Quality Index (DLQI), which has been shown to be useful in assessing the most prevalent chronic skin conditions, and has also been specifically validated for chronic urticaria. Visual analog scales (VAS) have been validated as instruments for exploring severity in rhinitis, urticaria and in other allergic diseases, particularly in pediatric patients. In practice, they are regarded as complementary tools in the measurement of HRQoL.
In our clinic, we often use Paediatric Asthma Quality of Life Questionnaire with Srandardised Activities (PAQLQ(S)). This questionnaire has been tested and validated using the wording and format that follows. It is important that interviewers adhere to the exact wording when addressing the patient (regular type) and follow the instructions (italics). Deviation from both wording and instructions may impair the reliability and validity of the questionnaire.
The questionnaire adapted for Ukraine and includes 23 questions which characterized Symptoms, Activity Limitation and Emotional Function.Using (PAQLQ(S)), we must follow certain criteria:
- Parents should not be present during the interview. It is the child’s own experiences that you want to evaluate. Some parents want to influence this evaluation and some children may want look to the parent for guidance.
- Reassure the child that there is no right or wrong answers. Do not interpret questions for children. If they have difficulty, just ask them to do the best they can.
- Make sure that the child understands the time frame of « during the past week». If in doubt, ask the parent to identify an event that occurred a week previously and then ask the child to think about how she/he has been since that event.
- Show the blue and green response cards to the child and the options. For children who can read, we suggest that you ask them to read aloud each of the response options. For younger children, read through each of the responses with them. Make sure that the child understands the concept of the grading from 1 (extremely bothered/all of the time) to 7 (not bothered/none of the time).
Quality of Life in people with asthma is strictly relevant with the correct treatment of the disease that is why the correct screening of patient's quality of life, especially in children, is so important. Many researches suggests that, because of the life challenges associated with the chronicity and unpredictability of asthma, children dealing with the disease are at a greater risk for experiencing lower levels of quality of life than children without asthma. Symptoms of asthma can contribute to impairment in academic performance/school attendance, peer relationships, and family functioning. In addition to the experience of having the disease, a number of other factors including disease severity, psychological symptoms, family characteristics, and coping styles have been found to be related quality of life in children with asthma. While a gold standard approach of assessing quality of life in children with asthma has yet to be established, a number of well-researched assessment tools are available for research and clinical use.