The impact of recurrent acute otitis media on the quality of life of children and their caregivers.

OBJECTIVE: To assess the quality of life of 384 Dutch children aged 1-7 years with recurrent acute otitis media (AOM), and compare it with that of children from four reference populations: (i) children from a general population; (ii) children with mild-to-moderate asthma, (iii) children with mild-to-moderately severe chronic illness, and (iv) US children with persistent or recurrent otitis media. DESIGN: Survey. SETTING: A general and an academic hospital (study population of children with recurrent AOM, n = 384); general population (n = 225 and 117); primary care (children with asthma, n = 64); community care (children with chronic illness, n = 82); and a general hospital (children with persistent or recurrent otitis media, n = 169). PARTICIPANTS: A total of 384 children aged 1-7 years who had experienced at least two episodes of AOM in the preceding year and their caregivers. MAIN OUTCOME MEASURES: Generic and disease-specific quality of life as judged by the children's caregivers. Age-adjusted total and subscale scores were compared with those of the reference populations. RESULTS: For all generic questionnaires, children with recurrent AOM had poorer scores than children from the general population. Quality of life of children with four or more episodes of AOM in the preceding year was poorer than that of children with two to three episodes. Children with recurrent AOM scored lower on the health-related questionnaire than children with mild-to-moderately severe chronic illness. Quality of life of the present study population was similar to those of children with asthma and US children with chronic otitis media with effusion or recurrent AOM. CONCLUSION: Recurrent AOM has a considerable negative impact on the quality of life of children and causes concern to their caregivers. These effects are proportional to the severity of the condition. Professionals involved in the care of children with OM should be aware that OM not only affects physical functioning but also general well-being of the child and its family. These outcomes should therefore be included in the evaluation of the child with otitis media both in the clinical and research setting.

Assessing the quality of life of adults with chronic respiratory diseases in routine primary care: construction and first validation of the 10-Item Respiratory Illness Questionnaire-monitoring 10 (RIQ-MON10).

BACKGROUND: As doctors' judgements about the burden of a disease often differ from patients' own assessments a manageable method to incorporate the latter into routine care might support patient-centered decision-making. For this purpose we shortened the 55-Item Quality of Life for Respiratory Illness Questionnaire (QoL-RIQ). METHODS: Secondary analyses of the data of 3 controlled studies (n = 328, 502 and 555). PROCEDURES: inter-item correlations, scale distributions, Cronbach's alpha and factor analysis. Dyspnoea, forced expiratory volume in 1 s (FEV1), COOP/WONCA charts, the Medical Research Council-ECCS symptoms questionnaire and the MOS-SF 36 served as criteria to test validity and responsiveness. RESULTS: Item-reduction resulted in a 10-item short form (alpha's 0.87-0.90), consisting of 2 5-item factors: (1) physical and emotional complaints and (2) physical and social limitations. The correlations of the short form with dyspnoea (r from 0.57 to 0.60), the generic health status instruments (r from 0.39 to 0.59) and lung function (r from 0.10 to 0.15) fulfilled the criteria. FURTHER RESULTS: a clinical relevant score difference (> 0.5) between upper and lower quartiles of the convergent instruments, an intraclass correlation between repeated scores in a stable group of 0.82 and a standardised response mean of 0.86 in an improved group of patients. CONCLUSIONS: The short form (RIQ-MON10) maintained the psychometric properties of the original instrument and is promising for assessing quality of life (QoL) during routine primary care visits.

Outpatient management of childhood asthma by paediatrician or asthma nurse: randomised controlled study with one year follow up.

BACKGROUND: Until now, care provided by asthma nurses has been additional to care provided by paediatricians. A study was undertaken to compare nurse led outpatient management of childhood asthma with follow up by a paediatrician. METHODS: Seventy four children referred because of insufficient control of persistent asthma were randomly allocated to 1 year follow up by a paediatrician or asthma nurse. The main outcome measure was the percentage of symptom-free days. Additional outcome measures were airway hyperresponsiveness, lung function, daily dose of inhaled corticosteroids (ICS), number of exacerbations, number of additional visits to the general practitioner, absence from school, functional health status, and disease specific quality of life. RESULTS: There were no significant differences at the end of the 1 year study period between the two treatment groups in percentage of symptom-free days (mean difference 2.5%; 95% CI -8.8 to 13.8), airway hyperresponsiveness (log10 PD20 0.06; -0.19 to 0.32), functional health status (10.1; -0.3 to 19.8), disease specific quality of life of patients (0.08; -0.9 to 0.7), and disease specific quality of life of caregivers (0.09; -0.2 to 0.3), nor in any other outcome parameters. Most outcome parameters improved considerably over the 1 year study period. These improvements were achieved although the daily dose of ICS was reduced by a mean of 26% compared with the dose received by children at referral. All parents were satisfied with the asthma care received. CONCLUSIONS: After initial assessment in a multidisciplinary clinic, childhood asthma can be successfully managed by an asthma nurse in close cooperation with a paediatrician. During close follow up by paediatrician or asthma nurse, asthma control improved despite a reduction in ICS dose.

The development of the 'Quality-of-life for Respiratory Illness Questionnaire (QOL-RIQ)': a disease-specific quality-of-life questionnaire for patients with mild to moderate chronic non-specific lung disease.

Chronic non-specific lung disease (CNSLD) encompasses asthma as well as chronic obstructive pulmonary disease (COPD). Recently in health care, there has been increasing awareness in the functional, psychological and social aspects of the health of patients; their quality of life (QOL). Quality-of-life research addressing CNSLD patients has been rather underdeveloped for a long period of time. Recently, however, the importance of QOL is being increasingly recognized, and several research groups have started to study QOL in CNSLD patients in more detail. This paper describes the construction of a disease-specific QOL instrument for patients with mild to moderately severe CNSLD. Items relating to several domains of QOL were listed, and 171 CNSLD patients in general practice were asked how much of a problem each item had been (assessed on a seven-point Likert scale). After applying an item-selection procedure, a uni-dimensional QOL questionnaire was constructed consisting of 55 items divided into seven domain subscales: breathing problems, physical problems, emotions, situations triggering or enhancing breathing problems, general activities, daily and domestic activities, and social activities, relationships and sexuality. Reliability estimates of the domain subscales of the constructed questionnaire varied from 0.68 to 0.89, and was 0.92 for the QOL for Respiratory Illness Questionnaire (QOL-RIQ) total scale. A first impression of the construct validity of the questionnaire was gained by investigation of the relationship between the QOL domain subscales and several indicators of illness severity, as well as the relative contribution of illness severity variables, background characteristics and symptoms to QOL, using regression analysis. Further research to validate the questionnaire to a greater extent (construct validity, test-retest reliability and responsiveness to change) is currently taking place.

Assessing quality of life in chronic non-specific lung disease--a review of empirical studies published between 1980 and 1994.

Chronic non-specific lung disease (CNSLD), a chronic disease with considerable prevalence and mortality rates, is not only a medical problem, it also has significant psychological and social consequences for the patients concerned. Quality of life research on CNSLD has been rather underdeveloped for quite a long period of time, but has recently become an important topic in research as well as in patient care. In order to get insight into the state of the art of empirical research on quality of life (QOL) in CNSLD, a review of the literature between 1980-1994 on this topic is presented. Special attention is paid to definitions and operationalizations of the QOL concept as well as on questionnaires used to assess QOL and the aims of QOL research. Analysis reveals that QOL is seldom defined clearly and is operationalized in a variety of ways. Most studies have a descriptive nature or pertain to clinical trials. The negative impact of CNSLD on QOL is well-documented and shows the importance of incorporating assessment of QOL in research as well as in patient care. Future research is called for, which should be theory-driven, taking into account recent developments concerning disease-specific measures of QOL.

Patients' opinions on respiratory care: do doctors fulfill their needs?

To date, guidelines and consensus reports on quality care for asthma and chronic obstructive pulmonary disease (COPD) are mainly based on research and opinions of care providers. Patients' viewpoints on good medical care have rarely been studied. We designed a postal questionnaire to study the needs of patients with asthma or COPD for medical care provided by general practitioners and lung physicians. A total of 121 patients filled out the questionnaire, which included 111 items about needs. Although generally satisfied, patients reported several unfulfilled needs. Main topics were the need for information about diagnostic tests, prognosis, and long-term use of medication. In addition, patients wanted more written information about the nature of their disease. One-third of patients wanted more participation in decisions about their treatment. These results suggest the quality of medical care for patients with asthma or COPD can be improved by adjusting provided care to needs expressed by patients.

Developing a quality-of-life questionnaire for patients with respiratory illness.

In this short report, the construction of a disease-specific quality-of-life questionnaire for patients with asthma and chronic obstructive pulmonary disease (COPD) is described. Some psychometric aspects are also discussed. We listed 221 items relating to several domains of quality-of-life, and asked 204 patients to indicate, on a seven-point Likert-scale, how much of a problem each item had been during the last year. After item selection, a quality-of-life scale was constructed, consisting of 55 items divided into 7 subscales. The reliability estimates vary from 0.68 to 0.89, and can be considered as quite satisfactory. Results concerning construct validity are promising; there is a strong relationship between the Quality-of-life subscales and several indicators of illness severity. Further research is called for to validate the questionnaire.

[A research program for behavioral studies in COPD research]. / Een research-agenda voor gedragswetenschappelijk CARA-onderzoek.

The demands for medical care of patients with chronic non-specific lung disease (CNSLD) and the prevalence of CNSLD will increase. The need, therefore, for behavioural research on CNSLD will also grow. In order to steer behavioural research in CNSLD, research programming is of great importance. Forty-seven Dutch and 13 foreign expert medical and behavioural scientists were asked via an interview about the most prominent topics and conditions for future research in this field. In addition a literature survey with the same aim was carried out. Important topics for future research include: quality of life of CNSLD patients, patient needs, psychophysiological investigation, social and psychosocial aspects of CNSLD, compliance, problems at work and school, and the education of those involved in patient care.