Contact WAO | e-News Sign Up | Site Map | Home  
World Allergy Organization
WAO's mission: To be a global resource and advocate in the field of allergy, advancing excellence in clinical care through education, research and training as a world-wide alliance of allergy and clinical immunology societies.

Management of Asthma: Beyond the Cost

Quality-of-life in severe uncontrolled asthma

Jean Bousquet
Service Des Maladies Respiratories
Hospital Arnaud de Villeneuve
Montpellier, France

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)

References

  1. Jones PW, Baveystock CM, Littlejohns P. Relationships between general health measured with the sickness impact profile and respiratory symptoms, physiological measures, and mood in patients with chronic airflow limitation. Am Rev Respir Dis 1989;140(6):1538-43.
  2. Bousquet J, Bullinger M, Fayol C, Marquis P, Valentin B, Burtin B. Assessment of quality of life in patients with perennial allergic rhinitis with the French version of the SF-36 Health Status Questionnaire. J Allergy Clin Immunol 1994;94(2 Pt 1):182-8.
  3. Pariente PD, LePen C, Los F, Bousquet J. Quality-of-life outcomes and the use of antihistamines in a French national population-based sample of patients with perennial rhinitis. Pharmacoeconomics 1997;12(5):585-95.
  4. Bousquet J, Duchateau J, Pignat JC, Fayol C, Marquis P, Mariz S, et al. Improvement of quality of life by treatment with cetirizine in patients with perennial allergic rhinitis as determined by a French version of the SF-36 questionnaire. J Allergy Clin Immunol 1996;98(2):309-16.
  5. Guyatt GH, King DR, Feeny DH, Stubbing D, Goldstein RS. Generic and specific measurement of health-related quality of life in a clinical trial of respiratory rehabilitation. J Clin Epidemiol 1999;52(3):187-92.
  6. Rutishauser C, Sawyer SM, Bowes G. Quality-of-life assessment in children and adolescents with asthma. Eur Respir J 1998;12(2):486-94.
  7. Asmussen L, Olson LM, Grant EN, Landgraf JM, Fagan J, Weiss KB. Use of the child health questionnaire in a sample of moderate and low- income inner-city children with asthma. Am J Respir Crit Care Med 2000;162(4 Pt 1):1215-21.
  8. Marks G, Dunn S, Woolcock A. An evaluation of an asthma quality of life questionnaire as a measure of change in adults with asthma. J Clin Epidemiol 1993;10:1103-11.
  9. Juniper EF, Buist AS, Cox FM, Ferrie PJ, King DR. Validation of a standardized version of the Asthma Quality of Life Questionnaire. Chest 1999;115(5):1265-70.
  10. Juniper EF, Norman GR, Cox FM, Roberts JN. Comparison of the standard gamble, rating scale, AQLQ and SF-36 for measuring quality of life in asthma. Eur Respir J 2001;18(1):38-44.
  11. Adams RJ, Ruffin RE, Smith BJ. Validity of a modified version of the Marks Asthma Quality of Life Questionnaire. J Asthma 2000;37(2):131-43.
  12. Jones PW, Quirk FH, Baveystock CM, Littlejohns P. A self-complete measure of health status for chronic airflow limitation. The St. George's Respiratory Questionnaire. Am Rev Respir Dis 1992;145(6):1321-7.
  13. Sanjuas C, Alonso J, Prieto L, Ferrer M, Broquetas JM, Anto JM. Health-related quality of life in asthma: a comparison between the St George's Respiratory Questionnaire and the Asthma Quality of Life Questionnaire. Qual Life Res 2002;11(8):729-38.
  14. Bayliss MS, Espindle DM, Buchner D, Blaiss MS, Ware JE. A new tool for monitoring asthma outcomes: the ITG Asthma Short Form. Qual Life Res 2000;9(4):451-66.
  15. Gupchup GV, Wolfgang AP, Thomas J, 3rd. Reliability and validity of the Asthma Quality of Life Questionnaire-- marks in a sample of adult asthmatic patients in the United States. Clin Ther 1997;19(5):1116-25.
  16. Chan-Yeung M, Law B, Sheung SY, Lam CL. Internal consistency, reproducibility, responsiveness, and construct validity of the Chinese (HK) version of the asthma quality of life questionnaire. Qual Life Res 2001;10(8):723-30.
  17. Caro JJ, Sr., Caro I, Caro J, Wouters F, Juniper EF. Does electronic implementation of questionnaires used in asthma alter responses compared to paper implementation? Qual Life Res 2001;10(8):683-91.
  18. French DJ, Carroll A, Christie MJ. Health-related quality of life in Australian children with asthma: lessons for the cross-cultural use of quality of life instruments. Qual Life Res 1998;7(5):409-19.
  19. Mishoe SC, Baker RR, Poole S, Harrell LM, Arant CB, Rupp NT. Development of an instrument to assess stress levels and quality of life in children with asthma. J Asthma 1998;35(7):553-63.
  20. Reichenberg K, Broberg AG. Quality of life in childhood asthma: use of the Paediatric Asthma Quality of Life Questionnaire in a Swedish sample of children 7 to 9 years old. Acta Paediatr 2000;89(8):989-95.
  21. le Coq EM, Boeke AJ, Bezemer PD, Colland VT, van Eijk JT. Which source should we use to measure quality of life in children with asthma: the children themselves or their parents? Qual Life Res 2000;9(6):625-36.
  22. Juniper EF, Guyatt GH, Feeny DH, Ferrie PJ, Griffith LE, Townsend M. Measuring quality of life in children with asthma. Qual Life Res 1996;5(1):35-46.
  23. Rutishauser C, Sawyer SM, Bond L, Coffey C, Bowes G. Development and validation of the Adolescent Asthma Quality of Life Questionnaire (AAQOL). Eur Respir J 2001;17(1):52-8.
  24. Osman LM, Baxter-Jones AD, Helms PJ. Parents' quality of life and respiratory symptoms in young children with mild wheeze. EASE Study Group. Eur Respir J 2001;17(2):254-8.
  25. French DJ, Christie MJ, Sowden AJ. The reproducibility of the Childhood Asthma Questionnaires: measures of quality of life for children with asthma aged 4-16 years. Qual Life Res 1994;3(3):215-24.
  26. Creer TL, Wigal JK, Kotses H, Hatala JC, McConnaughy K, Winder JA. A life activities questionnaire for childhood asthma. J Asthma 1993;30(6):467-73.
  27. Usherwood TP, Scrimgeour A, Barber JH. Questionnaire to measure perceived symptoms and disability in asthma. Arch Dis Child 1990;65(7):779-81.
  28. Juniper EF. Quality of life questionnaires: does statistically significant = clinically important? [editorial; comment]. J Allergy Clin Immunol 1998;102(1):16-7.
  29. Santanello NC, Zhang J, Seidenberg B, Reiss TF, Barber BL. What are minimal important changes for asthma measures in a clinical trial? Eur Respir J 1999;14(1):23-7.
  30. Wyrwich KW, Tierney WM, Wolinsky FD. Using the standard error of measurement to identify important changes on the Asthma Quality of Life Questionnaire. Qual Life Res 2002;11(1):1-7.
  31. Bousquet J, Knani J, Dhivert H, Richard A, Chicoye A, Ware J, Jr., et al. Quality of life in asthma. I. Internal consistency and validity of the SF-36 questionnaire. Am J Respir Crit Care Med 1994;149(2 Pt 1):371-5.
  32. Moy ML, Israel E, Weiss ST, Juniper EF, Dube L, Drazen JM. Clinical predictors of health-related quality of life depend on asthma severity. Am J Respir Crit Care Med 2001;163(4):924-9.
  33. Muntner P, Sudre P, Perneger TV. Comparison of the psychometric properties of the Asthma Quality of life Questionnaire (AQLQ) among 115 asthmatic adults assessed during acute hospitalization and as outpatients. Qual Life Res2000;9(9):987-95.
  34. Marks GB, Heslop W, Yates DH. Prehospital management of exacerbations of asthma: relation to patient and disease characteristics. Respirology 2000;5(1):45-50.
  35. Stavem K, Lossius MI, Kvien TK, Guldvog B. The health-related quality of life of patients with epilepsy compared with angina pectoris, rheumatoid arthritis, asthma and chronic obstructive pulmonary disease. Qual Life Res 2000;9(7):865-71.
  36. Gabe J, Bury M, Ramsay R. Living with asthma: the experiences of young people at home and at school. Soc Sci Med 2002;55(9):1619-33.
  37. Sawyer MG, Spurrier N, Whaites L, Kennedy D, Martin AJ, Baghurst P. The relationship between asthma severity, family functioning and the health-related quality of life of children with asthma. Qual Life Res 2000;9(10):1105-15.
  38. Huss K, Naumann PL, Mason PJ, Nanda JP, Huss RW, Smith CM, et al. Asthma severity, atopic status, allergen exposure and quality of life in elderly persons. Ann Allergy Asthma Immunol 2001;86(5):524-30.
  39. Incalzi RA, Bellia V, Catalano F, Scichilone N, Imperiale C, Maggi S, et al. 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. Chest 2001;120(3):734-42.
  40. Hyland ME, Kenyon CA, Jacobs PA. Sensitivity of quality of life domains and constructs to longitudinal change in a clinical trial comparing salmeterol with placebo in asthmatics. Qual Life Res 1994;3(2):121-6.
  41. Hyland ME, Crocker GR. Validation of an asthma quality of life diary in a clinical trial. Thorax 1995;50(7):724-30.
  42. Rutten-van-Molken MP, Custers F, van-Doorslaer EK, Jansen CC, Heurman L, Maesen FP, et al. Comparison of performance of four instruments in evaluating the effects of salmeterol on asthma quality of life [see comments]. Eur Respir J 1995;8(6):888-98.
  43. Mahajan P, Pearlman D, Okamoto L. The effect of fluticasone propionate on functional status and sleep in children with asthma and on the quality of life of their parents. J Allergy Clin Immunol 1998;102(1):19-23.
  44. Nelson HS, Busse WW, deBoisblanc BP, Berger WE, Noonan MJ, Webb DR, et al. Fluticasone propionate powder: oral corticosteroid-sparing effect and improved lung function and quality of life in patients with severe chronic asthma. J Allergy Clin Immunol 1999;103(2 Pt 1):267-75.
  45. Berend N, Kellett B, Kent N, Sly PD. Improved safety with equivalent asthma control in adults with chronic severe asthma on high-dose fluticasone propionate. Respirology 2001;6(3):237-46.
  46. Nayak AS, Banov C, Corren J, Feinstein BK, Floreani A, Friedman BF, et al. Once-daily mometasone furoate dry powder inhaler in the treatment of patients with persistent asthma. Cochrane Database Syst Rev 2000;2(4):417-24.
  47. Fish JE, Karpel JP, Craig TJ, Bensch GW, Noonan M, Webb DR, et al. Inhaled mometasone furoate reduces oral prednisone requirements while improving respiratory function and health-related quality of life in patients with severe persistent asthma. J Allergy Clin Immunol 2000;106(5):852-60.
  48. van der Molen T, Sears MR, de Graaff CS, Postma DS, Meyboom-de Jong B. Quality of life during formoterol treatment: comparison between asthma- specific and generic questionnaires. Canadian and the Dutch Formoterol Investigators. Eur Respir J 1998;12(1):30-4.
  49. Kemp JP, Cook DA, Incaudo GA, Corren J, Kalberg C, Emmett A, et al. Salmeterol improves quality of life in patients with asthma requiring inhaled corticosteroids. Salmeterol Quality of Life Study Group. J Allergy Clin Immunol 1998;101(2 Pt 1):188-95.
  50. Noonan MJ, Chervinsky P, Brandon M, Zhang J, Kundu S, McBurney J, et al. Montelukast, a potent leukotriene receptor antagonist, causes dose- related improvements in chronic asthma. Montelukast Asthma Study Group. Eur Respir J 1998;11(6):1232-9.
  51. Dahlen SE, Malmstrom K, Nizankowska E, Dahlen B, Kuna P, Kowalski M, et al. Improvement of aspirin-intolerant asthma by montelukast, a leukotriene antagonist: a randomized, double-blind, placebo-controlled trial. Am J Respir Crit Care Med 2002;165(1):9-14.
  52. Nathan RA, Bernstein JA, Bielory L, Bonuccelli CM, Calhoun WJ, Galant SP, et al. Zafirlukast improves asthma symptoms and quality of life in patients with moderate reversible airflow obstruction. J Allergy Clin Immunol 1998;102(6 Pt 1):935-42.
  53. Knorr B, Franchi LM, Bisgaard H, Vermeulen JH, LeSouef P, Santanello N, et al. Montelukast, a leukotriene receptor antagonist, for the treatment of persistent asthma in children aged 2 to 5 years. Pediatrics 2001;108(3):E48.
  54. Buhl R, Hanf G, Soler M, Bensch G, Wolfe J, Everhard F, et al. The anti-IgE antibody omalizumab improves asthma-related quality of life in patients with allergic asthma. Eur Respir J 2002;20(5):1088-94.
  55. Lemanske RF, Jr., Nayak A, McAlary M, Everhard F, Fowler-Taylor A, Gupta N. Omalizumab improves asthma-related quality of life in children with allergic asthma. Pediatrics 2002;110(5):e55.
  56. Rijssenbeek-Nouwens LH, Oosting AJ, de Bruin-Weller MS, Bregman I, de Monchy JG, Postma DS. Clinical evaluation of the effect of anti-allergic mattress covers in patients with moderate to severe asthma and house dust mite allergy: a randomised double blind placebo controlled study. Thorax 2002;57(9):784-90.
  57. Gallefoss F, Bakke PS, Rsgaard PK. Quality of life assessment after patient education in a randomized controlled study on asthma and chronic obstructive pulmonary disease. Am J Respir Crit Care Med 1999;159(3):812-7.
  58. Cote J, Bowie DM, Robichaud P, Parent JG, Battisti L, Boulet LP. Evaluation of two different educational interventions for adult patients consulting with an acute asthma exacerbation. Am J Respir Crit Care Med 2001;163(6):1415-9.
  59. Lahdensuo A, Haahtela T, Herrala J, Kava T, Kiviranta K, Kuusisto P, et al. Randomised comparison of guided self management and traditional treatment of asthma over one year. Bmj 1996;312(7033):748-52.
  60. Thoonen BP, Schermer TR, Van Den Boom G, Molema J, Folgering H, Akkermans RP, et al. Self-management of asthma in general practice, asthma control and quality of life: a randomised controlled trial. Thorax 2003;58(1):30-6.
  61. Marabini A, Brugnami G, Curradi F, Casciola G, Stopponi R, Pettinari L, et al. Short-term effectiveness of an asthma educational program: results of a randomized controlled trial. Respir Med 2002;96(12):993-8.
  62. Moudgil H, Marshall T, Honeybourne D. Asthma education and quality of life in the community: a randomised controlled study to evaluate the impact on white European and Indian subcontinent ethnic groups from socioeconomically deprived areas in Birmingham, UK. Thorax 2000;55(3):177-83.
  63. Perneger TV, Sudre P, Muntner P, Uldry C, Courteheuse C, Naef AF, et al. Effect of patient education on self-management skills and health status in patients with asthma: a randomized trial. Am J Med 2002;113(1):7-14.
  64. Juniper EF. Using humanistic health outcomes data in asthma. Pharmacoeconomics 2001;19(Suppl 2):13-9.

Slide presentation


Return to top
Return to WAF: Denver index