Quality of Life Research 13: 13091319, 2004. 2004 Kluwer Academic Publishers. Printed in the Netherlands.

1309

Health-related quality of life of children and adolescents with chronic illness a two year prospective study
Michael G. Sawyer1, Katherine E. Reynolds1, Jennifer J. Couper2, Davina J. French3, Declan Kennedy2, James Martin4, Rima Staugas4, Tahereh Ziaian1 & Peter A. Baghurst5 1 Research & Evaluation Unit, Womens and Childrens Hospital, and Department of Paediatrics, University of Adelaide (E-mail: michael.sawyer@adelaide.edu.au); 2Department of Paediatrics, University of Adelaide; 3 Department of Psychology, University of Western Australia; 4Department of Pulmonary Medicine, Womens and Childrens Hospital; 5Public Health Research Unit, Womens and Childrens Hospital, Adelaide, Australia
Accepted in received from 28 September 2003

Abstract The aim of this study was to compare the self-reported health-related quality of life (HRQL) of children and adolescents with diabetes, asthma or cystic brosis (CF) with the HRQL of a large community sample, to assess the extent to which the HRQL of the children and adolescents with chronic illness changes over time, and to examine the consistency of changes in dierent HRQL domains. One hundred and twenty three young people aged 1016 years with asthma, diabetes, or CF were recruited from specialist paediatric clinics. Children rated their HRQL using the Child Health Questionnaire (CHQ) and three disease-specic measures at baseline, 6, 12, 18 and 24 months post-baseline. In several areas, the HRQL of children with chronic illness was signicantly worse than that of children in the community sample. Over the 2 years of the study, although children with asthma and diabetes did not report signicant changes in CHQ scores rating their physical health, they reported signicant improvements in scores rating the extent to which health problems interfered with physical and family activities. CHQ scores describing their physical health reported by children with CF declined signicantly but there was no signicant change in scores rating interference with physical and family activities. Key words: Adolescents, Children, Chronic illness, Health-related quality of life, Prospective Abbreviations: CF Cystic Fibrosis; CFQOL Cystic Fibrosis Quality of Life; CHQ Child Health Questionnaire; DCCT Diabetes Control and Complications Trial; DQOLY Diabetes Quality of Life for Youth; HRQL Health-Related Quality of Life

Introduction The concept of health-related quality of life (HRQL) is a multi-factorial construct that describes individuals perceptions of their physical, psychological and social functioning [1]. Assessments of childrens HRQL have utilised parents, clinicians and children as informants (for brevity, the term children will be used to describe both children and adolescents). However, the concept

emphasises the importance of a patient-centred approach with assessments of adults typically utilising self-reports of health and well-being rather than assessments by clinicians or assessments based on biomedical parameters [1]. This emphasis on self-report has drawn attention to the importance of obtaining reports directly from children. There is good evidence that children over the age of 9 or 10 years can provide reliable reports about mental health problems and increasing

1310 evidence of a similar capacity when childrens reports are used to describe their HRQL [2]. Two approaches are used to assess the HRQL of children. One approach employs disease-specic measures. The advantage of this approach is that it focuses on specic issues of immediate relevance to children with the particular disease being assessed [3, 4]. Its disadvantage is that it is dicult to compare the HRQL of children with dierent diseases and children who are disease-free because of the disease-specic nature of the assessment process. The alternative approach uses generic measures. This allows assessment of children with dierent diseases and children who are disease-free using the same measure [5], making it possible to directly compare the HRQL of these children. However, a potential limitation is that generic measures may not detect changes relevant to children with a particular illness because of their focus on issues common to all children. To date studies of childrens HRQL have suffered from two limitations. First, they have largely assessed childrens HRQL at only a single point of time. The striking paucity of longitudinal studies of the HRQL of children with chronic illness is a signicant omission that limits understanding of the extent to which childrens HRQL changes over time and identication of factors that may inuence the extent of this change. Second, most studies of childhood HRQL focus on a single disease. As a result, there is limited information about the extent to which HRQL varies for children with dierent diseases. This reects a tradition for paediatric care to be organised around body systems and disease categories. The advantage is that it allows clinicians to develop and maintain specialist skills required to manage the biomedical aspects of particular diseases. However, it is possible that there is considerable commonality in the impact of chronic physical conditions on childrens HRQL [6, 7]. If it can be demonstrated that factors common to several diseases inuence changes in the HRQL of children it may be possible to develop new approaches to improve childrens HRQL which are not restricted to a single disease. The aims of the present study were: (i) to compare the self-reported HRQL of children with asthma, diabetes or CF and that of a large community sample of children, (ii) to assess the extent to which the HRQL of children with asthma, diabetes or cystic brosis (CF) changed over a 2-year period, (iii) to assess whether there was any consistent pattern to this change in the several domains comprising childrens HRQL, and (iv) to assess whether the pattern of change was the same for children with dierent illnesses. We hypothesised that children with asthma, diabetes or CF would perceive their HRQL to be worse than that of children in the community. We also hypothesised that there would be little dierence between the HRQL of children with asthma, diabetes or CF at their initial assessment. Finally, we hypothesised that the HRQL of children with CF would diminish over time, the HRQL of children with diabetes would show little change, and that of children with asthma would improve.

Methods Participants A total of 123 children and adolescents aged 10 16 years with either asthma (n 40), diabetes (n 44), or CF (n 39) participated in the study. Participants were recruited from specialist clinics at the Womens and Childrens Hospital in South Australia and from the specialist CF clinic (n 22) at the Princess Margaret Hospital in Western Australia. All participants had been diagnosed with their condition at least 1 year prior to the study. Potential participants were excluded if they had insucient English to complete the study questionnaires, had intellectual delay, or if their clinician advised the research team that the childs family was experiencing major problems which precluded participation in the study (e.g., custody disputes, domestic violence). The study also utilised the ndings from a representative community sample of Australian children and adolescents who had participated in the Australian Child and Adolescent Mental Health Survey [8]. Information about the HRQL of all participants was obtained during the survey. For the purpose of this study, we utilised data for children aged 1317 years (n 1254). The mean age of these children was 14.5 1.1 years and 48% of the sample were male.

1311 Procedure A total of 209 potential participants were approached and asked to participate in the study. The response rates for children in the three illness groups were similar with a total of 154 children completing the baseline assessment (73.7%). Thirty-one participants did not complete one or more of the subsequent assessments. There was no signicant dierence in the proportion of children from each disease group who were lost to followup (X2 1.4, p 0.5). In general losses occurred because either the family could not be contacted or parents and children advised that they no longer had the time required to participate in the study. This left 123 participants who completed all the assessments. The scores of these children were utilised in the statistical analyses reported in this study. Assessments were completed at baseline, 6, 12, 18 and 24 months post-baseline. The data were collected between April 1999 and January 2002. A letter was sent to eligible families attending the Womens and Childrens Hospital in South Australia prior to the baseline assessment advising them of the aims of the study and seeking their childrens participation. Subsequently a telephone call was made to answer questions about the study and arrange for a research assistant to bring the study questionnaires to the childrens homes. Formal written consent was obtained at the time the research assistant met with children and parents. Children independently completed their questionnaires with help being provided by the research assistant if this was requested. This procedure was approved by the ethics committee at the Womens and Childrens Hospital, Adelaide. In Western Australia, the relevant research ethics committee requested that clinicians approach families to seek their participation in the study. For those who agreed to participate, data collection then followed the same procedure as that employed in South Australia. scales that describe childrens physical, mental and family health, and the perceived interference of health problems with physical activities, family activities, and peer/school activities. The ratings on all these scales are based on childrens functioning over the previous 4 weeks. The validity and reliability measurement characteristics of the scales are described in the CHQ manual [5]. For the purpose of reporting results, the names of some CHQ subscales were altered to better reect the items that comprise them. The names that were changed (with the published name in parentheses) were: pain and discomfort (bodily pain), emotional problems (mental health), physical activities (physical functioning), and behavioural problems (behaviour). Questionnaires were scored according to the instructions in the CHQ Manual with scores having a range of 0100 and higher scores indicating better HRQL. Additionally, children completed disease-specic questionnaires assessing the impact of their disease. The three measures used were the PedsQL Asthma module 3.0 [Varni, Burwinkle, Rapo, Kamps & Olson, 2002, submitted for publication], the Diabetes Quality of Life for Youth measure (DQOLY) [9], and a Cystic Fibrosis Quality of Life (CFQOL) measure which was derived from the DQOLY. The PedsQL Asthma measure asks adolescents and children how often over the past month they have had problems with their asthma symptoms, treatment, communication with others about asthma, and their level of worry about their disorder. The 28-item measure employs a ve point Likert scale, with higher scores indicating better HRQL. The scale has demonstrated reliability and validity measurement properties acceptable for group comparisons [Varni et al., submitted for publication]. Scores on the PedsQL Asthma were transformed to a 0100 scale to make comparison with scores from other measures easier. In the present study Cronbachs a for the four scales were 0.88 (asthma symptoms), 0.71 (treatment problems), 0.81 (worry), and 0.85 (communication). The DQOLY measures childrens and adolescents experience of diabetes care and treatment [9] using three scales that rate disease impact (23 items), diabetes-related worries (11 items), and life satisfaction (17 items) on a ve point Likert scale.

Measures HRQL was measured using the 87-item childreport version of the Child Health Questionnaire (CHQ) [5]. The present study utilised the 11 CHQ

1312 The DQOLY was developed from The DCCT Research Groups original measure designed for adults, with Cronbachs a reported to be 0.82 or greater for the three scales [9]. In the present study, Cronbachs a was 0.82 on the disease impact scale, 0.88 on the worries scale and 0.87 on the satisfaction scale. Mean scores on the scales can range from 1 to 5. To facilitate interpretation of scores across dierent scales in the present study, these were transformed to a 0100 scale. Higher scores on the impact and worries scales indicate worse HRQL while higher scores on the satisfaction scale indicate better HRQL. At the time this study commenced we were unable to identify a suitable disease-specic HRQL measure for children with CF. For the purpose of the study we developed a disease-specic measure suitable for use by children with CF by adapting items from the DQOLY. This cystic brosis quality of life (CFQOL) measure contained similar items to those in the DQOLY but the items were focussed on symptoms and treatment issues specic to CF (e.g., coughing, physiotherapy and dietary requirements of CF treatment). The disease impact scale in the measure had 23 items, the worry scale had 10 items, and the life satisfaction scale contained 18 items. Children responded to the items using a ve point Likert scale. The measure was well accepted by children with CF and Cronbachs a was 0.87 for the disease impact scale, 0.92 for the worries scale, and 0.90 for the satisfaction scale. As with the DQOLY, raw scores were transformed to a 0100 scale. The research team reviewed the face validity of items in the disease-specic measures at the time the measures were initially utilised. Pilot testing for the CFQOL was also completed with a sample of 19 children with CF and parents in a separate study. Parents and children advised that the issues addressed by the items were very relevant to their circumstances. The construct validity of the measures was examined in two ways. First, we compared scores on the disease-specic measures and CHQ scores. With the exception of the CHQ scores rating impact of emotional problems on school and peer activities, and family cohesion, correlations between disease-specic scores and CHQ scores were generally in the range of 0.40.5 for the three scales of the DQOLY and for the CFQOL Satisfaction Scale. For the other two scales on the CFQOL the range was 0.30.4. Second, we used the known groups approach [10] to compare scores reported for children with diabetes (high vs. low HbA1C levels), and for children with CF (high vs. low FEV1 levels). There was a consistent pattern for children whose biomedical markers suggested worse physical health to report a lower quality of life on the disease-specic measures.

Statistical analyses Initially, t-tests were used to determine whether there were statistically signicant dierences between the CHQ scores describing children in the present study at the baseline assessment and scores describing the HRQL of the community sample. It should be noted that for a set of eleven comparisons, two signicant dierences (p < 0.05) may be found by chance using a p < 0.05 level of protection [11]. Thus, where only two signicant differences between groups were identied when comparing the eleven CHQ scores, it may be a chance nding. Two approaches were used to investigate changes in childrens CHQ scores over time. First, all the scores for children with each disease were plotted on graphs and a visual inspection of changes over time was made. Subsequently, a series of three groups (Diabetes, Asthma and CF) ve times (Baseline, 6-, 12-, 18-, 24-months) repeated measures of analyses of variance (ANOVA) were used to examine the signicance of dierences between mean scores. A Group Time interaction term was included with each analysis. The withinsubjects comparisons and the interaction term utilised the HuynhFeldt correction procedure which generates fractional degrees of freedom for the appropriate F tests. However, as the distribution of scores did not always meet the assumptions of multivariate normality, it is necessary to be cautious when interpreting results from these multivariate analyses. One-way repeated measures analyses of variance were used to assess the signicance of dierences between the disease-specic scores for children with asthma, diabetes or CF over time. In the presentation of results, the term signicant is used to refer to p O 0.05.

1313
Table 1. Demographic characteristics of participants Diabetes Childrens age Mean SD Childrens sex % Male Female Family structure % 2 parents 1 parent Other Fathers educational status % Primary school Some high school Year 12 Technical/TAFE Tertiary Mothers educational status % Primary school Some high school Year 12 Technical/TAFE Tertiary Asthma CF

13.2 1.9 50.0 50.0 79.5 18.2 2.3 2.6 12.8 5.1 38.5 41.0 2.3 25.6 16.3 2.3 53.5

12.0 1.8 70.0 30.0 65.0 25.0 10.0 5.9 32.4 8.8 23.5 29.4 5.0 32.5 17.5 15.0 30.0

13.1 2.0 61.5 38.5 79.5 17.9 2.6 5.6 30.6 16.7 19.4 27.8 0.0 43.6 17.9 10.3 28.2

Results Demographic characteristics of the sample The demographic characteristics of the participants are shown in Table 1. With the exception of a small dierence in their average age (Asthma Mean SD 12.0 1.8 vs. Diabetes Mean SD 13.2 1.9 and CF Mean SD 13.1 2.0, p 0.003), there were no signicant dierences in demographic characteristics of children with dierent illnesses. Disease severity at the baseline assessment The average blood glucose level of children with diabetes over the previous 8 weeks was assessed using HbA1C levels. The mean HbA1C (SD) of the children was 9.0 1.1 which is higher than that typically seen in children with diabetes in Australia. The mean (SD) time since their diagnosis was 5.6 3.4 years, and they required a mean (SD) of 2.2 0.5 insulin injections per day. The lung function of the children with CF was assessed by means of their Forced Expiratory Volume (FEV1; identied from the pulmonary function test conducted nearest to the date of their

baseline assessment). FEV1 tests showed that 23 of these children had mild reduction of lung function (FEV1 >80% predicted), 10 children had moderate reduction (FEV1 5679% predicted), and two had severe reduction (FEV1 <55% predicted) (FEV1 was not available for four children). The Rosier Asthma Scale completed by parents of children with asthma was used to assess the severity of these childrens illness [12]. On the basis of their scores on the questionnaire, children are classied as having low severity, mild, moderate or severe asthma. In the present study 12.5% of children had asthma of low severity, 22.5% had mild asthma, 42.5% had moderately severe asthma, and 22.5% had severe asthma. The group of children who completed the baseline assessment but who were subsequently lost to follow up (n 31) had more unemployed mothers (58.6%) than the group who completed every assessment (33.6%, p 0.01) and had signicantly lower scores at baseline on the Physical Activities, Behavioural Problems, Self-Esteem, Family Cohesion, and perceived interference with Family Activities Scales of the CHQ. This suggests that these children had a somewhat poorer HRQL than the 123 children who completed all the assessments.

1314 Comparison of CHQ scores describing children in the community and children with Asthma, Diabetes or CF As a group, CHQ scores describing the children with chronic illness were signicantly lower than those describing the community sample on the General Health Perceptions Scale (Community Mean SD 70.5 16.2, Illness Mean SD 61.4 15.4, p O 0.001), Behaviour Problems Scale (Community Mean SD 84.1 12.2, Illness Mean SD 81.7 11.8, p 0.04), Family Activities Scale (Community Mean SD 83.2 19.6, Illness Mean SD 75.1 19.3, p O 0.001), Physical Activities Scale (Community Mean SD 95.4 9.3, Illness Mean SD 90.7 11.7, p O 0.001), and perceived interference with School/Peer Activities due to physical health problems (Community Mean SD 96.5 12.4, Illness Mean SD 88.6 21.3, p O 0.001). It was possible that the dierent ages of children in the community (1317 years) and the chronic illness (10 16 years) samples contributed to the dierences across the two groups. It was also possible that the presence of some children with chronic illness in the community sample inuenced the ndings. To check for the rst possibility, a further comparison was made for children aged 13 16 years in each group. When this was done the pattern of dierences remained very similar. The only change was that children aged 13 16 years with a chronic illness reported a signicantly lower score on the Emotional Problems scale than children of the same age in the community group (Community Mean SD 79.3 15.3, Illness Mean SD 76.1 11.0, p 0.03). Excluding children reported as having a chronic illness, most commonly asthma, in the community sample made no dierence to the pattern of results. baseline assessment. Only 2 of the 11 comparisons identied signicant dierences between CHQ scores across the groups. These were on the General Health Perceptions (F (2,120) 6.4, p 0.002) and Emotional Problems (F (2,120) 3.1, p 0.05) scales. Paired comparisons showed that the mean General Health Perceptions score reported by children with asthma was signicantly lower than the scores reported by children with diabetes and children with CF. The mean Emotional Problems scores reported by children with asthma and children with diabetes were signicantly lower than the mean score reported by children with CF. For this analysis, with approximately 40 children in each group the study is powered to detect dierences of around 0.7 SD with 80% power. The analysis involved a comparison of 11 dierent domains of childrens HRQL. For this many comparisons, two signicant dierences may be found by chance using a p < 0.05 level of protection [11]. This suggests that the dierences found between childrens CHQ scores may have been chance ndings.

Comparison of CHQ scores at the baseline, 6, 12, 18 and 24 months assessments (Table 2) Physical health On the General Health Perceptions scale there was a signicant main eect for disease group (F (2,118) 3.3, p 0.04) with scores for children with diabetes being consistently higher than those for children with asthma or CF. There was also a signicant interaction of time disease group (F (7.5,440.7) 4.5, p O 0.001). This occurred because the scores reported by children with CF declined signicantly over time while scores reported by children with asthma and diabetes did not change signicantly. There was no signicant main eect for time or disease group for scores on the Pain and Discomfort Scale, however there was a signicant time disease group interaction (F (7.2,426.2) 2.5, p 0.02). This reected a pattern in which scores reported by children with asthma increased signicantly over time while those reported by children in the other groups did not change signicantly.

Comparison of baseline CHQ scores describing children with Asthma, Diabetes or CF A series of one-way analyses of covariance, controlling for age were used to test for the signicance of dierences between the CHQ scores describing children with dierent diseases at the

1315
Table 2. CHQ scores (Mean SD) reported by Children With Diabetes (n = 44), Asthma (n = 40) or CF (n = 39) Physical and mental health Baseline 6 months 12 months 18 months 24 months

Physical health General health perceptions Asthma 55.3 Diabetes 64.9 CF 64.6 Pain and discomfort Asthma 70.8 Diabetes 72.3 CF 81.3 Perceived Interference with Family Activities Asthma 74.0 Diabetes 74.9 CF 75.7 Physical Activities Asthma 87.5 Diabetes 91.6 CF 92.9 Perceived interference with Peer & School Activities (due to) Physical Health Problems Asthma 82.8 Diabetes 91.0 CF 91.7 (due to) Emotional Problems Asthma 86.1 Diabetes 89.9 CF 94.0 (due to) Behavioural Problems Asthma 95.3 Diabetes 95.6 CF 95.4 Mental Health Self-Esteem Asthma 77.4 Diabetes 75.9 CF 80.3 Emotional Problems Asthma 76.2 Diabetes 76.3 CF 81.5 Behavioural Problems Asthma 81.0 Diabetes 81.0 CF 83.2 Family Health Family Cohesion Asthma 71.7 Diabetes 71.5 CF 76.9

16.9 15.4 11.6 26.6 19.5 19.1

56.2 18.6 65.2 15.7 62.1 15.2 70.0 23.9 76.0 17.1 79.2 18.1

58.8 18.0 67.2 16.0 63.3 16.2 69.5 29.0 76.5 15.4 82.3 17.5

61.7 18.0 66.5 16.3 57.3 15.8 79.8 15.8 76.3 17.0 77.9 21.9

60.3 18.1 66.9 16.7 56.0 16.5 79.8 18.3 78.4 14.3 77.4 20.9

22.3 15.4 20.6 12.7 13.7 7.2

73.6 24.6 81.4 15.5 79.8 18.9 87.3 12.9 95.3 5.4 94.4 8.0

79.5 19.7 81.0 15.0 80.1 15.0 89.8 16.2 96.3 5.4 95.5 6.9

85.4 16.3 81.3 18.4 82.2 15.3 92.1 9.3 96.0 5.3 92.0 13.4

84.2 15.4 84.4 15.0 84.1 14.4 94.4 7.3 97.2 4.9 93.5 9.9

26.4 16.3 19.9 21.6 13.7 16.7 10.3 9.7 9.8

87.8 20.1 95.3 11.2 94.0 12.7 89.4 16.1 93.8 10.9 97.2 9.4 92.2 15.6 96.4 7.6 98.6 7.3

87.5 22.4 95.6 10.9 93.4 18.5 90.8 20.3 93.5 13.1 96.0 11.3 93.9 13.8 96.9 7.4 98.3 5.4

92.5 14.5 94.8 13.6 94.6 11.6 92.8 11.7 94.8 15.4 95.4 9.8 94.4 12.1 96.6 9.2 97.4 8.2

93.9 14.9 96.9 9.8 91.2 16.6 91.9 21.6 94.6 11.2 96.0 9.7 99.2 3.9 97.4 8.0 98.3 6.0

17.5 14.5 13.9 15.2 11.4 9.4 14.3 10.9 10.2

78.7 15.9 77.8 12.5 82.3 13.1 77.4 11.5 76.8 9.7 82.6 8.3 83.2 10.7 81.6 9.4 85.6 8.4

80.8 15.4 78.9 13.2 82.8 12.9 79.4 12.2 77.0 12.5 82.1 10.4 82.3 13.2 83.1 9.2 85.1 8.7

80.7 16.6 76.9 17.1 82.7 12.6 80.5 13.7 75.6 15.6 81.8 11.2 83.8 10.5 82.1 10.8 84.9 10.3

81.9 17.3 81.1 14.7 81.8 11.4 78.6 13.5 77.4 12.0 81.5 11.0 85.1 10.5 82.9 8.8 83.4 11.6

26.1 21.1 24.1

77.6 20.5 80.5 14.0 69.7 24.5

79.0 17.1 81.3 17.4 73.6 23.7

76.5 25.7 76.2 22.4 73.5 24.1

74.5 24.9 76.3 22.0 72.6 21.8

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Table 3. Disease-Specic Questionnaire Scores (Mean SD) reported by Children with Asthma (n = 39), Diabetes (n = 43), or CF (n = 39) Questionnaires PedsQL Asthma Symptoms Treatment probs. Worry Communication DQOLY Impact Worries Satisfaction CFQOL Impact Worries Satisfaction Baseline 6 months 12 months 18 months 24 months Time eect

60.8 21.0 79.1 15.3 66.2 27.4 65.6 30.8

67.8 17.7 83.4 13.5 74.6 22.6 75.9 26.4

68.2 18.0 85.0 13.1 78.5 20.1 78.8 23.4

72.5 17.6 86.7 14.1 77.2 22.3 83.3 21.7

75.4 15.9 88.6 10.9 82.5 20.8 86.1 22.3

F (3.3,125.3) p = 0.001 F (2.9,110.4) p = 0.001 F (3.0,110.4) p = 0.003 F (2.9,111.7) p = 0.001

= 5.76, = 5.91, = 4.88, = 5.67,

70.8 11.0 79.1 14.8 69.1 15.2 76.1 10.3 82.5 15.7 72.0 15.6

72.6 13.4 80.1 17.7 73.7 12.5 76.3 10.5 81.3 15.0 66.6 22.3

71.6 11.3 79.9 15.3 74.1 13.8 76.5 10.8 82.3 16.1 70.2 17.6

71.9 13.1 78.2 16.3 69.0 17.9 76.7 10.5 81.9 17.0 68.1 19.4

73.9 11.8 79.7 18.1 72.3 15.2 74.0 13.0 77.4 20.9 69.7 16.8

Note: DQOLY Diabetes Quality of Life for Youth Questionnaire, CFQOL Cystic Fibrosis Quality of Life Questionnaire.

Perceived interference with family and physical activities There was a signicant main eect for time on the Family Activities (F (3.7,434.4) 9.4, p O 0.001) and the Physical Activities Scales (F (48,414.6) 5.1, p 0.001). On each scale, one-way repeated analysis of variance showed that there were signicant increases in the scores (indicating better HRQL) reported by children with asthma and diabetes but the changes in the scores reported by children with CF did not achieve statistical signicance. On the Physical Activities Scale there was a signicant main eect for disease group (F (2,119) 6.2, p 0.003) reecting a pattern for children with diabetes or CF to report higher scores than those with asthma in the earlier assessments. There was also a signicant time disease group eect (F (7.0,414.6) 2.3, p 0.03). This reected the signicant increase in scores reported by children with diabetes and children with asthma over time that was not evident in scores reported by children with CF. Perceived interference with peer and school activities On the scale rating interference with peer and school activities due to physical health problems there was a signicant main eect for time

(F (3.7,444.3) 2.9, p 0.03). It can be seen in Table 2 that this primarily reected changes in the scores reported by children with asthma and diabetes. There was also a signicant main eect for disease group (F (2,119) 3.6, p 0.03) due to children with diabetes or CF reporting higher scores than those with asthma, particularly in the earlier assessments. The only signicant eect on the scales assessing interference due to emotional and behavioural problems occurred on the Emotional Problems Scale where there was a signicant main eect for disease group (F (2,119) 4.1, p 0.02). This reected a pattern of children with CF consistently experiencing less interference than children with asthma or diabetes. Mental health There was a signicant main eect for time on the Self-Esteem Scale (F (3.7,438.9) 2.8, p 0.03) reecting an increase over time in scores reported by children in each of the disease groups. Scores on the Emotional Problems and Behavioural Problems scales did not change signicantly over time and there was no signicant main eect for disease group, nor a signicant time disease group interaction.

1317 Family cohesion Scores varied little over time and there were no signicant main eects. There was also no signicant time disease group interaction. Comparison of Disease-Specic Questionnaire scores at baseline, 6, 12, 18 and 24 months assessments The mean scores on the disease-specic measures are shown in Table 3. On each scale, scores on the PedsQL Asthma increased over time. Although there were some dierences between the mean scores on the DQOLY at the dierent assessments, the size of these dierences were generally small. Similarly, changes to scores on the CFQOL were generally small. Three repeated measures analyses of variance were used to test the statistical signicance of differences over time in the mean scores reported by children in each disease group (Table 3). Scores on the four PedsQL Asthma scales all increased signicantly over time, reecting improved HRQL. In contrast, there was no signicant change to the scores on the DQOLY and CFQOL. Problems scales, children with asthma reported that their HRQL was signicantly worse than that reported by children with CF. This may be a chance nding and it is not consistent with clinical understanding which generally views CF as a more serious illness than asthma. However, it draws attention to the importance of remaining alert to the possibility that there are dierences in the perceptions of clinicians and children when describing childhood HRQL. It is possible, for example, that children with CF accommodate to the facts of their illness and perceive their HRQL to be better than would be expected by clinicians or parents. Third, as a group, over the 2 years of the study children reported a reduction in the extent to which their illness interfered with participation in physical and family activities. They also reported reduced interference with their schoolwork and activities with friends. However, in both instances this group eect was largely due to improvements reported by children with asthma and diabetes. Although children with asthma and diabetes did not report signicant improvement in their physical health, they did report that their health problems interfered signicantly less with their physical activities and family activities over the time. They also reported a reduction in the extent to which health problems interfered with their peer activities and schoolwork although these changes were not statistically signicant. In each area, eect sizes for changes in mean scores reported by children with asthma or diabetes from the baseline assessment to the 2-year follow up assessment were P0.5, dened as a medium eect size [13]. In contrast, children with CF reported that their physical health was signicantly worse over this period and there was no improvement in the extent to which their health problems interfered with activities at home and school. Consistent with the ndings from the CHQ, on the disease-specic measures children with asthma reported improvement in their symptoms and reduced concern about their treatment, their illness and communication with health professionals. In contrast little change was evident in ratings by children with CF or diabetes. It is possible that the dierent pattern of scores reported by children with diabetes on the CHQ scales assessing perceived interference with family and physical

Discussion There are three main ndings from this study. First, in several areas children and adolescents with asthma, diabetes or CF perceived their HRQL to be signicantly worse than that reported by a large community sample of young people. They more frequently reported that their health problems interfered with participation in physical activities and with family activities. They also more frequently reported that health problems interfered with schoolwork and activities with friends. Eect sizes describing dierences in mean scores in these areas were P0.5 which Cohen [13] describes as a medium eect. Although they were statistically signicant, eect sizes describing differences in the mean scores rating emotional and behavioural problems across the groups were in the small range. Second, at the time of their baseline assessment there were few dierences between the HRQL reported by children with asthma, diabetes or CF. On the General Health Perceptions and Emotional

1318 activities, and the impact scale of the DQOLY reect the dierent content of the scales. The items on the disease impact scale of the DQOLY ask about a broad range of issues including relationships with peers, concern about future job opportunities and parental worries. In contrast, the CHQ scales each focus on a specic area of childrens HRQL, making interpretation of results somewhat easier. The signicantly lower scores reported by children with chronic illness in the present study provide further evidence of the construct validity of the child-report version of the CHQ. It should be noted that the community scores reported in Sawyer et al. [8] study were generally higher than the scores reported in the study by Waters et al. [2]. There are two possible explanations for this. First, Waters et al. made minor changes to the wording and the number of items in the CHQ to make it more acceptable to Australian children. It is possible that these changes led to changes in the pattern of scores. Second, in the study by Waters et al. children completed questionnaires in a classroom setting while children in the present study completed them in their homes as part of a study of child and adolescent mental health. It is possible that the context in which the information was collected led to some changes in the frequency with which HRQL problems were reported. The limitations of the present study are that the majority of the children were all being treated in the same paediatric hospital. Furthermore, it appeared that children with worse HRQL might have been more frequently lost to follow up. As a result, ndings from the study should be applied with caution to this latter group. Strengths of the study include its use of generic and disease-specic measures to evaluate childrens HRQL, and the retention of a large proportion of participants over the 2 years of the study. The clinical signicance of results from this study is twofold. First, HRQL measures are increasingly being used to assess the eectiveness of new interventions and routine clinical care. However, to date there is little information about the pattern of changes that occur to the HRQL of children over time. This study reports this information for children with diabetes, asthma or CF who have received routine clinical care in a specialist paediatric hospital. This provides a standard against which results obtained during the care of other children with these illnesses can be tested. Second, the increasing availability of selfreport questionnaires makes it possible to collect information about their HRQL from children. The ndings from this study serve as a reminder of the importance of collecting information directly from children and not relying solely on proxy informants when assessing the HRQL of children with chronic illness. Clinicians, parents and children are all potentially valuable sources of information about the HRQL of children with chronic illness.

Acknowledgements The authors would like to thank the research assistants who worked on this project, including Jenny Clark, Matthew Freeman, Leanne Whaites and Justine Whitham. The authors would also like to acknowledge the nancial support received from the NHMRC. References
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Address for correspondence: M. Sawyer, Research & Evaluation Unit, Womens and Childrens Hospital, North Adelaide, South Australia 5006, Australia Phone: +61-8-8161-7207; Fax: +61-8-8161-6906 E-mail: michael.sawyer@adelaide.edu.au