Management of Asthma: Beyond the Cost
Quality-of-life in severe uncontrolled asthma
Service Des Maladies Respiratories
Hospital Arnaud de Villeneuve
Quality-of-Life (QOL) is a concept including a large set of physical and psychological characteristics assessing the problems in the social context of the life style.
Asthma is a chronic disease that can place considerable restrictions on the physical, emotional and social aspects of the lives of patients and may have an impact of their careers. The importance of emotional factors and restriction on social life may be greater when symptoms are not adequately controlled, but, the underlying disease by itself may cause distress, especially when its evolution is unpredictable like asthma. Medical care and doctors can themselves increase these difficulties. Many asthmatics may not completely appreciate the impact of the disease on their social life and claim they lead "normal" lives because normality may be based on adjustments and restrictions they have already incorporated into their lifestyles or alternatively because they mask their restriction wanting to "live like others". Most patients suffering from asthma cannot be cured and their management should be directed to a reduction in symptoms and an improvement of the life style of patients measured by the QOL.
1- Methods measuring quality-of-life:
1-1- Generic questionnaires:
Generic questionnaires measure physical, mental and psycho social functions in all health conditions irrespective of the underlying disease and can be used in the general population. These include the Sickness Impact Profile (1), the Nottingham Health Profile and Medical Outcomes Survey Short Form 36 (SF 36) which has been used to characterize patients with asthma or rhinitis (2, 3) and to evaluate the effects of treatment on quality of life (4). The advantage of generic instruments is that the burden of illness across different disorders and patient populations can be compared. The disadvantage however is that the instruments miss depth and may not be responsive enough to detect changes in general health states in spite of important changes in disease related problems (5).
Health-related quality of life has become an essential part of health outcome measurement in chronic disorders. However, it is only recently that health professionals have focused on quality-of-life assessment in children and adolescents (6). The recently published Child Health Questionnaire (CHQ-PF50) is a useful generic instrument to comprehensively assess quality of life, in particular when comparing young people with different chronic disorders (7).
1-2- Disease-specific questionnaires:
Specific instruments have been designed by asking patients what kind of problems they experience from their disease. Both frequency and importance of impairments find expression in the questionnaires. These instruments have the advantage that they describe more accurately the disease associated problems of the patients. Moreover, they seem to be more responsive to changes in HRQL than generic instruments.
Several specific instruments for different age groups of patients with asthma have also been developed. Several ones which can be used in adult asthmatics (Asthma Quality of Life Questionnaire: AQLQ) (8-11). The St George's Respiratory Questionnaire (12) appears to be a valid measure of QOL in asthma (13). A new tool was developed for monitoring of asthma outcomes: the ITG Asthma Short Form (14). This is a data-driven process maximizing measurement precision and breadth while minimizing burden. The ITG-ASF is a brief, comprehensive and empirically valid tool that complements traditional markers of the outcomes of asthma care. Reliability and validity of the Asthma Quality of Life Questionnaire have been evaluated (15). These questionnaires have been translated in several languages and can be used in many countries (16). Electronic questionnaires are also available (17).
Several asthma-specific quality-of-life instruments specifically designed for use in children and adolescents (6, 18-20). However, it is not clear which source should we use to measure quality of life in children with asthma: the children themselves or their parents? (21). The Pediatric Asthma Quality-of-life Questionnaire (22) has shown responsiveness to change over time, but it lacks age-specificity with regard to psychosocial issues and comprehensiveness of quality-of-life assessment. Another interesting questionnaire is the Adolescent Asthma Quality of Life Questionnaire (AAQOL) (23). The Paediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ), measures the impact of child asthma symptoms on family activity (CGAct) and parental anxiety (CGEmot) (24). In contrast, the Childhood Asthma Questionnaire (25) provides three different versions for different target ages. However, its generic part is not reflective of the respondent's health status. Other asthma-specific instruments have major conceptual deficiencies when used as a single measure for quality-of-life assessment (26, 27). In the absence of a single ideal instrument, the use of batteries of quality-of-life instruments is therefore recommended and further research is required to identify the impact that age and developmental status have on quality-of-life assessment.
In clinical trials, specific questionnaires have been widely used, and differences between an intervention and placebo or between interventions have been reported. However does statistically significant difference means that it is clinically important ? (28). Several studies have attempted to answer this question (9, 29). The standard error of measurement may also be used to identify important changes on the Asthma Quality of Life Questionnaire (30).
2- Quality-of-life in asthma:
Generic scales of Quality-Of-Life (Q-O-L) may be used to detect the importance of social life impairment and all nine SF-36 category scores were highly significantly correlated with the severity of asthma (31). Clinical predictors of health-related quality of life depend on asthma severity (32). the AQLQ has similar psychometric properties during an acute hospitalization and subsequently in an outpatient setting (33). A study showed that the failure of pre-hospital management to prevent the necessity of hospital attendance in most cases stems from a failure to implement currently recommended actions or treatments for exacerbations and can be assessed using QOL (34)
The health-related quality of life of patients with epilepsy was compared with angina pectoris, rheumatoid arthritis, asthma and chronic obstructive pulmonary disease using SF-36 (35). The results indicate that the HRQL of a representative sample of patients with epilepsy is good, when compared with other chronic disorders, although reduced in several dimensions compared with a general reference population. Patients with rheumatoid arthritis (RA) and COPD scored lowest on the physical function scales, while rheumatoid arthritis patients reported most pain.
The experiences of young people at home and at school were reported (36). Asthma restricted their lives at school and recreationally but that they were actively involved with their condition and its management. The study reveals that while prescribed medicines in the form of inhalers were used as the primary means of coping with asthma episodes, the young people were concerned about being dependent on such medicines, in line with more general ambivalence in late modern cultures about the long term use of prescribed medicines. It also demonstrates how social relations in particular contexts help to determine the extent to which asthma episodes can be managed.
The relationship between asthma severity, family
functioning and the health-related quality of life of children
with asthma was examined in one study (37). There was a significant
relationship between the mental health of children with asthma
and family functioning but no significant relationship between
their physical health and family functioning. These findings suggest
that the domains comprising the HRQL of children with asthma are
related to both disease and non-disease factors. A better understanding
of these relationships will facilitate the development of new
interventions to help children with asthma.
There are also some studies in asthma severity, atopic status, allergen exposure and quality of life in elderly persons (38). Evaluation of health outcomes in elderly patients with asthma and COPD using disease-specific and generic instruments: the Salute Respiratoria nell'Anziano (Sa.R.A.) Study (39)
3- Evolution of HRQL during interventions:
Most clinical trials in asthma have focused on outcomes that are primarily of importance to the clinician such as symptom medication scores and the measurement of the pulmonary function. Fewer have assessed whether patients feel better and can function better in day-to-day activities. However, although it is important to use Q-O-L in clinical trials, there are several drawbacks which should be avoided. Both generic and disease-specific QOL scales are valid measures of quality of life, but, disease-specific scales are likely to be more capable of detecting smaller changes in the health status of patients with bronchial asthma and hence may be chosen as the instrument in clinical trial (40, 41). In particular when the Sickness Impact Profile was compared with the Asthma Quality of Life Questionnaire (AQLQ) and the Living With Asthma Questionnaire (LWAQ), only disease-specific questionnaires were found to be responsive to treatment (42). Q-O-L was found to be improved by many therapeutic interventions including inhaled corticosteroids (43-47), long-acting ß2 agonists (48, 49), leukotriene receptor antagonists (50-53) and anti-IgE monoclonal antibodies (54, 55).
The use of anti-allergic mattress covers results in significant reductions in Der p 1 concentrations in carpet-free bedrooms. However, in patients with moderate to severe asthma, airways hyperresponsiveness and clinical parameters are not affected by this effective allergen avoidance. (56)
Education is of importance in the management of asthma and self management reduces incidents caused by asthma and improves quality of life (57-63).
One of the aims of treatment of asthma is to improve patient well- being, which incorporates the concept of patients' perceptions of how they feel and their ability to function in their everyday life [health- related quality of life (HR-QOL)]. The weak association between conventional measures of clinical status in asthma and asthma-specific quality of life means that quality of life must be measured directly-- it cannot be inferred from clinical measures. HR-QOL is measured using instruments which elicit information from patients about the impact of the disease and its treatment on both their physical and emotional functioning. Such instruments may be generic (used for all diseases) or specific to a particular group of patients, function or disease. Disease-specific quality-of-life questionnaires are useful in clinical trials and practice because they are more responsive to small but clinically important changes than generic instruments. Generic instruments provide an estimate of the patients' burden of illness that can be compared with the burden experienced by patients with other medical conditions. Consequently, HR-QOL should be included as an outcome measure in all assessments of asthma. (64)
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