Quality of Life Research, 7, pp.

399407

Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results
U. Ravens-Sieberer and M. Bullinger*
Department for Medical Psychology, University of Hamburg, Germany (U. Ravens-Sieberer, M. Bullinger)

Health-related quality of life is increasingly being considered as a relevant end-point and outcome criterion in evaluating the effects of medical treatment. While in adults quality of life instruments have been developed in terms of generic as well as disease-specific measures, quality of life assessment and children is a relatively new area. The current paper describes the application of a German generic quality of life instrument for children (the KINDL) in a group of 45 chronically ill children suffering from diabetes or asthma in comparison to 45 age- and gender-matched healthy children. The results of psychometric testing in these populations showed that the German KINDL is a reliable, valid and practical instrument to assess the health-related quality of life of children which should be supplemented by disease-specific modules and needs to be further tested in clinical populations.
Qual. Life Res. 7:399407 1998 Kluwer Academic Publishers

Key words: Children; quality of life; KINDL questionnaire; diabetes; asthma.

Introduction
The past years have seen an increase in theoretical and empirical papers on the topic of quality of life in medicine. Current work, however, mostly concerns the development of instruments and their application in studies with adults rather than children.1,2 Quality of life in children is a relevant end-point for evaluating the use of medical intervention in terms of prevention, in terms of treatment and in terms of rehabilitation for this special patient group.3 These interventions not only affect somatic parameters but also emotional and

*To whom correspondence should be addressed at Abt. fr Medizinische Psychologie, Universitt Hamburg, Kollaustrae 67/69-B, D 22529 Hamburg, Germany. Tel: +49-4717-6430; Fax: +49-4717-4940.

social aspects of living for the patients concerned. Because of the far-reaching ramifications of interventions in their effects on patients it has been recognized that well-being and function are also important treatment outcomes in children. Since the introduction of the quality of life concept to medical research, over 20,000 publications have appeared concerning the topic.3 Interestingly, however, only 13% of the publications identified are related to children (n = 3,050). Using a weighting for the search terms quality of life and child resulted (e.g. for 1994 and 1995) in only 320 publications that specifically focus on quality of life in children. In the 320 articles examined, the majority referred to theoretical or conceptional work (52%) and empirical quality of life research in specific chronic conditions (33%), while the testing of assessment instruments (9%) or empirical quality of life research in general (6%) was less prominent. The paediatric populations represented in these works mainly concern oncology followed by transplantation medicine. The age range of the sample studies pertains mainly to children and adolescents of 1318 years while younger children in the age range of 612 years have less frequently been included in quality of life studies. In spite of the different definitions of health-related quality of life in current literature,4,5 an international consensus about the components of quality of life within an operational definition of the term has evolved. According to a recent definition, healthrelated quality of life can be viewed as a psychological construct which describes the physical, mental, social, psychological and functional aspects of well-being and function from the patient perspective.68 This operational definition stresses the multidimensionality of the quality of life concept as well as the relevance of patients self-report. Although the four components of quality of life are not exhaustive and do not constitute a taxonomy, they heuristically denote the areas of importance to be

1998 Kluwer Academic Publishers

Quality of Life Research . Vol 7 . 1998

399

U. Ravens-Sieberer and M. Bullinger

assessed when the quality of life of patients is under study. The dimensionality of the quality of life concept has been supported in studies with adults qualitatively and quantitatively as well as nationally and internationally. It is questionable, however, whether children choose comparable dimensions to describe their health-related quality of life.9,10 The existing literature regarding definitions of health from childrens viewpoints suggest that the construct of health is viewed differently by children in comparison to adults.11 So far, the qualitative and quantitative research into how children perceive dimensions of well-being and function is insufficient. In addition, in developmental psychology and paediatrics, a childs perspective, as a reflection of his or her current state, has not been sufficiently considered.1214 Recent reviews of the current literature on quality of life and children show an increase in theoretical articles referring to the importance of the problem but a lack of instruments to assess childrens quality of life.3 In terms of assessment, the most popularly used methods are parent or staff assessment of child wellbeing, with over 90% of the studies showing that selfreport measures are lacking. Within the instruments, three approaches can be distinguished. The first is a more clinical rating approach, in which instruments are not developed in testing according to psychological quality criteria. The second one is the utility-based approach, mostly derived from health economic studies in adults, which has also been applied to children (for example, the 15D and 16D measures of the McMaster Health Economics group15) have been used in studies with adolescents). The third approach is the psychometric approach. This approach has so far yielded the relative majority of the measures available and can be distinguished in terms of functional outcome measures, such as the Paediatric Evaluation of Disability Inventory (PEDI) of Haley et al.,16 mood measures represented, for example, by the Childrens Depression Inventory17 and quality of life assessment instruments as such. Here generic and disease-specific measures can be distinguished. An example of the first is the Child Health Survey by Landgraf et al.,12 while an example of the second is the Childhood Asthma Questionnaire of Christie et al.18 Although various measures are currently being developed in the international arena, short, practicable, understandable instruments for assessing health-related quality of life through childrens selfreport are lacking.3 Owing to the recent tradition of instrument development in paediatric quality of life research, the current article pertains to the development of a self-report generic quality of life

instrument for children from the psychometric approach and describes the application of a newly developed generic instrument for quality of life assessment in children aged 816 years; the German KINDL questionnaire.19 The KINDL was derived from a conceptual model, in which the four main components of quality of life, namely psychological well-being, social relationships, physical function and everyday life activities, were included in interviews with children (several school classes). The questionnaire consists of 40 items (Table 1), reflecting each of the four above mentioned subscales with nine or 11 items. The KINDL items are scored from 1 (never) to 5 (always) with reversals according to the wording of the question and are scored by the method of simple counted ratings of the scores per item, summarized and then transformed to a 0100 scale. The items were constructed and pretested in two pilot studies involving 28 children each. The KINDL was included in an environmental, psychological, 3 year, observational study of 345 healthy children. The first part of this study was used to analyse the psychometric properties of the instrument and the second part served as the normative data set. The results indicated sufficient reliability (Cronbachs > 0.70) and validity (correlations with instruments measuring similar concepts, r = 0.70). Sensitivity to change in the childrens living conditions could also be demonstrated. Although the four-dimensional structure of quality of life was supported by factor analysis, the KINDL factors were not independent of each other and some items also correlated with the other scales. With the questionnaire, however, it was possible to differentiate between children with regard to health state, actual life events and concomitant developmental conditions, while no gender effects were found. Over time, the testretest correlations of the subscales were relatively high (r = 0.80) in children with no change in environmental conditions, while change (e.g. the onset of aircraft noise exposure) did significantly impair the quality of life of children. The KINDL has also been used in a longitudinal German public health study involving over 500 children and is currently being used in several clinical studies involving chronically ill children. While existing data about healthy children do support the psychometric quality of the generic KINDL questionnaire, a comparable analysis of the KINDL in populations with chronically ill children has not yet been conducted. The goal of the current study was an evaluation of the KINDL in chronically ill children with the following research questions.

400

Quality of Life Research . Vol 7 . 1998

Quality of life assessment in children with the KINDL Table 1. The KINDL dimensions and items Functional capacity in everyday life Psychological well-being Physical state During the last week... I felt queasy or nauseous I was able to sleep well I horsed around a lot I felt ill I had headaches or stomach aches I was in top physical condition I felt lively and alert I ached all over I had a lot of strength and endurance Social relationships During the last week... My parents were nice to me I played with my friends in the afternoon I got along well with my parents I felt comfortable at home with my family I laughed a lot and had fun I enjoyed being with my friends Everyone nagged at me I was praised and commended I was a success among my friends

During the last week... During the last week... It was easy for me to I felt grumpy and moody do my homework I enjoyed classes at I felt stressed out school I made a lot of mistakes I was worn out and tired on my homework I had difficulty I did not feel like doing concentrating anything I was forgetful and I had trouble at home absent-minded I had problems with I had a lot of good ideas my teachers I was nervous and Everything got too much fidgety for me to handle I was proud of my I was cheerful and in a achievements good mood Everything I started I felt frightened or worked out insecure Everything got on my I felt along and deserted nerves I was satisfied with myself I was upset because some things went wrong

(1) Is the KINDL a reliable, valid and practicable instrument to assess health-related quality of life in chronically ill children? (2) Is there a relationship between psychosocial factors and health-related quality of life in chronically ill children? (3) How do the KINDL results compare to qualitatively analysed answers to open questions regarding quality of life?

Methods
A total of 145 patients from a German childrens hospital, aged 1016 years, were included in a crosssectional study with repeated measurement. The inclusion criterion was a diagnosis of either juvenile diabetes or bronchial asthma. These conditions were chosen because they reflect the common problems of chronic conditions in childhood and both imply psychological adaptation in terms of control, coping,

compliance and stigma. In terms of the physical impact and transparency of the conditions, diabetes and asthma are diverse. The healthy control children were identified from the above-mentioned public health study on 530 children using the method of matching so that each chronically ill child was paired with a child from the healthy reference group comparable in terms of age, gender and schooling level. An inventory was developed for the study, in which the KINDL, as well as other scales to assess quality of life, were included, i.e. three subscales from the Short Form-36 Health Survey (SF-36),20 physical health, mental health and vitality, as well as a German questionnaire for life satisfaction (FLZ).21 Further information on the potential psychosocial determinants of quality of life related to physical complaints, difficulty in sleeping, health locus of control, health behaviour, stress level, social support, concepts of disease and health as well as sociodemograhic data was collected, as well as questions relating to the practicability of the KINDL. The items for the

Quality of Life Research . Vol 7 . 1998

401

U. Ravens-Sieberer and M. Bullinger

assessment of these psychosocial determinants were derived from existing standard German scales assessing these concepts. In addition to child selfreport, mothers information about their own quality of life as well as the mothers perceptions of the childrens self-reported well-being were included. Here, the mothers ratings were not used as proxy indicators for childrens quality of life but rather as a measure of empathy: to what extent can mothers reproduce childrens self-reported assessments when asked how do you think your child feels and has responded to the questionnaire questions?. The questionnaires for the children as well as those for one parent were mailed to 145 patients currently under treatment at the childrens hospital and included a pre-addressed return envelope as well as an informed consent sheet. In addition to these standard scales, open questions relating to perceptions and descriptions of relevant quality of life dimensions from the childrens view were included. The data collection took place during a defined time period of 4 weeks, in which patients currently being treated at the childrens hospital as well as one parent were contacted with regard to their willingness to participate in the study. The psychometric evaluation of the questionnaire included testing for its reliability (internal consistency as well as testretest reliability within a 1 week interval) and validity (convergent and construct validity). Convergent validation was performed by correlating the subscales of the KINDL with the subscales of the FLZ and Short Form-36 Health Survey. The discriminant validity was assessed via the known groups approach, i.e. testing of the differences between patient populations according to criteria within an assumed difference in quality of life (i.e. healthy versus ill and type and severity of chronic disease). Known group comparisons have been widely used, particularly in health outcomes research2 and are acceptable means of assessing validity. Here the known group confirmation refers to the differences between healthy and ill children, a comparison based upon the impact of a chronic condition on wellbeing. The sociodemographic data as well as psychosocial determinants were related to quality of life with correlational analysis as well as difference testing (t-tests). For the age-related analysis an age split after 13 years was used; in developmental psychology, an age split above the age of 13 years is common because it reflects the transition from childhood into early adolescence or puberty. It can be assumed that older children may differ from younger ones in terms of the specific agerelated demands of the disease which is why this

analysis was included. The responses to the open questions were content analysed by the development of categories from two independent raters, followed by using a statistical procedure for qualitative content analysis (the program: AQUAD). In addition, the acceptance and practicability of the KINDL was assessed using childrens ratings of its understandibility, personal relevance and time needed for filling in the items.

Results
Sociodemographic characteristics
Of the 145 families with chronically ill children contacted, 45 children and 45 mothers were interested in participating in the study (response rate 31%). The 45 children (23 girls and 22 boys) were 1016 years old (mean = 13.2 years and SD = 2.7 years) and 56% were 13 years or younger. Approximately one-third of the children were at higher elementary level schooling, another third were at lower secondary level and the last third were at higher secondary level. Of the 45 children, two-thirds suffered from diabetes and one-third from asthma.

Psychometric results
The questionnaire was filled in by all of the children of the participating families with good quality responses (missing data 0.1%). Systematic response tendencies such as the identity of answers for different items

Table 2. Sociodemographic characteristics Chronically ill children Gender Girls Boys Age Mean ( SD) (years) Range (years) 1013 years 1416 years School Elementary Lower secondary Higher secondary n = 45

51% 49% 13.2 ( 2.7) 1016 56% 44% 28% 38% 34%

Control group: 45 healthy children as matched pairs.

402

Quality of Life Research . Vol 7 . 1998

Quality of life assessment in children with the KINDL Table 3. Structure of the scales and reliability Chronically ill children KINDL scales Mental Physical Everyday life Social life Total Number of items 11 9 11 9 40 Internal Floor Ceiling consistency (%) (%) () 0.0 0.0 0.0 0.0 0.0 2.2 0.0 0.0 2.2 0.0 0.89 0.76 0.89 0.84 0.95 Healthy children Internal Floor Ceiling consistency (%) (%) (%) 0.0 0.0 0.0 0.0 0.0 2.0 1.9 2.0 2.1 2.3 0.76 0.79 0.89 0.74 0.90

Mean 3.6 4.1 3.7 3.9 3.7

SD 0.76 0.57 0.71 0.65 0.70

Mean 4.0 4.0 3.9 4.0 4.0

SD 0.54 0.55 0.51 0.46 0.43

were not found. In addition, the positively and negatively pooled responses were filled in consistently. The children needed 12 min on average to fill in the KINDL and a mean of 34 min to fill in the total questionnaire packet. With regard to the KINDL, a frequency analysis showed good use of the answer scales, in that the ceiling and floor effects on a subscale level were under 2.5%. Confirmatory testing of the internal consistency showed that all of the subscales reached an coefficient of over 0.75; the Cronbachs for the total scale was 0.95. In general, the reliability coefficients for the chronically ill children were slightly higher than for the reference group of healthy children (Table 3). With regard to the validity, the convergent validation between the KINDL subscales and SF-36 or FLZ subscales showed significant correlations of a magnitude of r = 0.70 for the mental health and vitality scales as well as for physical functioning. The general health scale had lower correlation coefficients (r = 0.380.52 (Table 4). The intercorrelations of the KINDL scales within the group of chronically ill children were high (r = 0.540.95), as were the correlations in the healthy sample for the subscales, with the total scale ranged around r = 0.75 (Table 5). In terms of practicability, 95.5% of the chronically ill children found the questions easily understandable; 60% of the children judged the questions to be very relevant, while another 20% judged them to be relevant to their current situation.
Table 4. Correlation between the KINDL, SF-36 and FLZ Scales Mental Physical Everyday life Social life Total KINDL General health 0.43 (p = 0.004) 0.52 (p = 0.000) 0.38 (p = 0.014) ns 0.38 (p = 0.013)

Determinants of quality of life

With regard to the sociodemograhic data, no significant differences between girls and boys in terms of quality of life evaluations were found. Only with regard to the psychosocial variable sleeping difficulties did chronically ill girls indicate significantly more difficulties than boys (p = 0.016). The median split of the group below and above 13 years showed that age differences exist in the KINDL in that younger children indicated a significantly higher quality of life than older children (p = 0.001). These children also reported a healthier lifestyle (less unhealthy food, more sports activity and less smoking (p = 0.005). The type of schooling did not affect quality of life and the two disease groups (diabetes and asthma) only differed with regard to their health behaviour but not to their quality of life. In general, children with diabetes showed significantly more risk prone health behaviour than did the children with asthma (p = 0.025). Potential psychosocial influence factors on quality of life were also tested and included internal versus external locus of control, stress level and social support. There was a significant high correlation between health-related quality of life and social support (r = 0.50 and above) and an even higher correlation between the quality of life summary scale and stress level (r = 0.70). No significant differences

Mental health 0.86 0.59 0.79 0.62 0.77 (p (p (p (p (p = = = = = 0.000) 0.000) 0.000) 0.000) 0.000) 0.72 0.67 0.75 0.53 0.74

Vitality (p (p (p (p (p = = = = = 0.000) 0.000) 0.000) 0.000) 0.000) 0.76 0.58 0.64 0.78 0.65

FLZ (p (p (p (p (p = = = = = 0.000) 0.000) 0.000) 0.000) 0.000)

Quality of Life Research . Vol 7 . 1998

403

U. Ravens-Sieberer and M. Bullinger Table 5. Intercorrelation between the subscales KINDL scales Mental Physical Everyday life Social life Total Mental Physical 0.63 0.63 0.78 0.75 0.81 0.54 0.59 0.58 Everyday life 0.78 0.54 0.60 0.94 Social life 0.75 0.59 0.60 0.62 Total 0.81 0.58 0.94 0.62

between the healthy and ill children were found in the KINDL subscales or in the FLZ and SF-36 subscales. However, the healthy children reported slightly higher quality of life scores which almost reached significance levels for the psychological well-being subscale and total score (p = 0.059 and p = 0.057, respectively) (Figure 1).

Content analytical results

The concepts of health and illness of chronically ill children were identified via a qualitative content analysis of the answers to the open questions with a subsequent frequency analysis of the categorized answers. The questions related to the concepts of disease included negative associations concerning the disease in terms of the actual person, self and family as well as difficulties in coping with the disease. The negative associations related to the disease showed a distribution of the responses into three categories. Over one-third of the children reported the occurrence of massive physical symptoms such as pain and breathing difficulty as concomitants of the disease. Disease as an experience in everyday life which influences daily activities and which prescribes or forbids specific activities (for example, regular blood sugar
Figure 1. Differences in quality of life (KINDL)

controls, taking medications or adhering to a diet) was reported by nearly half of the children. Most of the children indicated the negative position in which the disease places them vis--vis family, friends or society as a whole, referring to stigmatization, poor selfimage or overprotection. Generally, the quantitative questions showed that 51% of the children found the disease rather to extremely disturbing and 31% indicated that the family was substantially affected by the disease. Only approximately 20% of the children indicated that they did not find themselves experiencing problems due to the disease. In a more specific question, information about the family burden of the chronic condition was solicited. Most frequently noted was the disease as a major limiting factor in family life: overprotection by parents or a massive problem with self-worth, e.g. patients viewing themselves as less valuable than their siblings. In addition, financial problems (the costs of treatment and medication) as well as physical problems (being not as healthy as others) were the predominant negative associations of the children with regard to the family. The second question concerning difficulties in dealing and coping with the disease included four categories. The first category concerns the stress of the observance of rules and the regularity of the living conditions caused by the disease (regular meals and routine medical examinations) was viewed as one main difficulty by more than 60% of the children. Physical problems such as low blood sugar and asthma attacks was noted by 20% of the children and 10% complained of social isolation due to the disease; here the problems of being accepted as a person in spite of the disease and finding friends were specifically noted. Only a small percentage of the children indicated no problems in coping with the disease (6%). A last open question addressed the childrens hopes and wishes for the future. Almost half of the children (48%) basically wished restored health or a reduction of the symptoms. Many children reported the wish to be free of the disease-specific limitations,

404

Quality of Life Research . Vol 7 . 1998

Quality of life assessment in children with the KINDL

that is they viewed the freedom from diet and injections as a prerequisite to leading a normal life, such as eating anything (especially sweets), being physically active and having more friends which was currently precluded the disease. Wishing improvement was voiced by 9% with regard to easier methods of assessing blood sugar levels or injecting insulin and 3% of the children wished new organs such as a new pancreas or lungs. In general, the results of the content analysis showed the amount of difficulty and problems experienced by the children in relation to the disease and the wish to be free of the diseaserelated limitations.

Discussion
Quality of life as a concept pertains to well-being and function as perceived by adults and children. Since quality of life assessment in the adult arena can only be cautiously transferred to childrens quality of life experiences, paediatric research needs to address the psychosocial effects of disease and treatment specifically so that better care can be delivered to chronically ill children.16 One prerequisite for such an evaluation is the development and testing of instruments to assess childrens health-related quality of life, such as the KINDL questionnaire. The basis of the development of the KINDL is a mixture of a top-down and bottom-up approach. In terms of the top-down approach, quality of life dimensions relevant for adults are tested with regard to the question of whether they are also reflected in childrens experiences. At the same time, with the open question the bottom-up approach is followed by trying to assemble from the childrens own experiences and viewpoints relevant dimensions of quality of life. The current study shows that the KINDL is accepted by chronically ill children suffering from diabetes or asthma and is a practicable research instrument. Psychometrically, the questionnaire fulfils the basic psychometric criteria in terms of the variance of items, low ceiling and floor effects of the scales, high internal consistencies and a good convergent validity. However, the scale intercorrelations show that the KINDL subscales are strongly correlated so that differentiating between subscales might be problematic. The components of quality of life as assessed by the KINDL seem to be strongly dependent on each other in the experience of the children. As an empirical finding, the correlations between the quality of life subscales have often been reported to be high. In the case of the KINDL, the structural

independence of the components does not pose a serious threat to the instrument. High correlations, however, reduce the possibility of arriving at differential patterns of quality of life as associated with various clinical conditions. A solution to the problem is to use a higher order factor analysis, which can, however, only be applied in a larger sample of chronically ill children. Furthermore, it has to be considered that the strong relationship between the dimensions correctly reflects the fact that, in childrens minds, the quality of life dimensions are not as differentiated as could be expected. Although the correlation of the KINDL subscales with quality of life instruments such as the SF-36 and FLZ are significant and high and, thus, demonstrate high convergent validity, they only explain between 15 and 50% of the common variance. This suggests that unidimensional assessments, e.g. of life satisfaction, do not fully reflect childrens experiences and that instruments conceived for health-related quality of life assessment in adults might not be appropriate for children. The sociodemographic factors were only weakly related to the quality of life of chronically ill children which has also been reported in recent literature.22 However, an age effect was present, indicating that younger children rate their quality of life higher as compared to older children, which from a developmental perspective can be attributed to a higher stress level with the beginning of puberty.13 In addition, the quality of life scores of asthma and diabetes patients do not differ significantly from each other which suggests that either the disease-related stressors are comparable for both groups or that the specific strains of each disease were not sufficiently grasped by the generic instruments. The reasons for including children with diabetes and asthma pertain to the fact that both chronic conditions have implications for disease management in terms of compliance, but, however, they have differences in terms of the accompanying stigmas associated with these diseases. It was hypothesized that children with asthma would in particular show a more pronounced impairment in quality of life as relates to the social dimension, while in the physical and psychological dimension these differences were not expected. Differences between both diabetic and asthmatic children and healthy children were expected in terms of an assumed higher rating of the quality of life dimensions in healthy children due to the absence of a chronic condition. With regard to differentiating chronically ill from healthy children, the KINDL, FLZ and SF-36 showed trends which failed to reach significance . In the SF-36 subscale general health a significant group difference appeared, indicating that chronically ill children feel

Quality of Life Research . Vol 7 . 1998

405

U. Ravens-Sieberer and M. Bullinger

impaired here. In the KINDL, the psychological wellbeing subscale and total score slightly exceeded the significance level, indicating a similar impairment. Since the SF-36 general health score correlates only weakly with the KINDL subscales, the experience of the children captured by the SF-36 scale might reflect other health-relevant dimensions. The lack of differences in quality of life between healthy and ill children can be explained as follows. (1) The sample size was insufficient to yield significant results, which implies that in a larger population the differences in the KINDL psychological well-being subscale and in the total score would have been significant. The current study was based on questionnaires being mailed to former out-patients of a childrens hospital, who were not under close surveillance or contact with the clinics. Given this, the 30% response rate is not ideal, but to be expected in a situation where parents as well as children have frequently undergone studies and investigations. Given the limited sample size, the fact that the differences between chronically ill and healthy children just failed to reach significance for two scales (the KINDL psychological well-being subscale and the total score) is encouraging. (2) There is a selection bias in that only families who did not feel substantially limited in their healthrelated quality of life by the disease participated and filled in the questionnaire and are thus comparable to healthy families. However, in their clinical data, the responding children did not differ from the non-respondents. (3) Healthy and ill children in fact do not differ with regard to their health-related quality of life, a result which has also been reported in adults studies.23 Support for this hypothesis is the relationship between psychosocial factors and quality of life which is similar for chronically ill and for healthy children. However, the answers to the open questions stress the importance of the disease for the chronically ill childrens quality of life and suggest that only a small impact of disease on the childrens quality of life is unlikely. (4) Chronically ill children might report a particularly high quality of life because of successful coping processes. The role of denial, for example, has been reported with regard to the self-concept of children with diabetes.11 (5) The KINDL is not able to differentiate between healthy and ill children because it is too generic in nature and does not contain questions of specific relevance to chronically ill children suffering from

chronic conditions. This suggests that a generic quality of life questionnaire should be supplemented by a disease-specific supplement which takes into account the specific situation of the paediatric clinical population. In sum, the results of evaluating the KINDL in chronically ill children in comparison to healthy children showed that an instrument for health-related quality of life assessment in children is available which is economic and promising but needs further work in terms of the independence of its subscales, its discriminant power and a modular supplement grasping the specific problems and limitations in quality of life due to chronic conditions. In addition, the role of external assessment (i.e. family and staff) of childrens quality of life needs to be explored further. In the present study, the mothers data were collected, which reflected that mothers perceptions of childrens quality of life is not a convergent validation of childrens views, but their own and independent viewpoints. Though not reported, the results indicate that it is not a contradiction to ask both a mother and child about the childs quality of life, if it is clear that the mothers view cannot be taken as substitute for the childs experience. The KINDL is a German generic psychometrically based, self-report measure for children, which has already gained wide-spread use in Germany as well as elsewhere (English translations are available and Italian, Dutch and French translations are under way). A longitudinal study using the KINDL in 130 children suffering from asthma is currently being conducted. Further studies with bigger sample sizes are needed to examine the potential use of the KINDL in epidemiological and clinical studies and in routine clinical care.

References
1. 2. 3. 4. Walker SR, Rosser RM. Quality of Life Assessment and Application. Lancaster: MTP Press, 1991. Stewart AL, Ware J. Measuring Function and Well-being. Durham, NC: Duke University Press, 1992. Bullinger M, Ravens-Sieberer U. Health related quality of life assessment in children. Eur Rev Appl Psy 1995: 245254. Calman KC. Definitions and dimensions of quality of life. In: Aaronson N, Beckman J, Bernheim J, Zittoun R, eds. The Quality of Life of Cancer Patients. New York: Raven Press, 1987: 8197. Spilker B. Quality of Life Assessment in Clinical Trials. New York: Raven Press. Bullinger M. Quality of life definition, conceptualization and implications a methodologists view. Theor Surg 1991: 143149.

5. 6.

406

Quality of Life Research . Vol 7 . 1998

Quality of life assessment in children with the KINDL

7. Furberg CD. Assessment of quality of life. In: Friedman L, Furberg C, Demets D, eds. Fundamentals of Clinical Trials. Littletown: PSG Publishing, 1985. Levine S, Croog SH. What constitutes quality of life? A conceptualization of the dimension of life quality in healthy populations and patients with cardiovascular disease. In: Wenger N, Mattson M, Furberg C, Ellison J, eds. Assessment of Quality of Life in Clinical Trials of Cardiovascular Therapies. New York: Le Jacq, 1984: 4466. WHOQOL Group. The development of the WHO quality of life assessment instruments (WHOQOL). In: Orley I, Kaykyen W, eds. Quality of Life Assessment, International Perspectives. Berlin: Springer, 1994: 3340. Barr RD, Pai MKR, Weitzman S. A multi-attribute approach to health status measurement and clinical management illustrated by an application to brain tumors in childhood. Int Oncol 1994: 639648. Seiffge-Krenke I. Krankheitsverarbeitung bei Kindern und Jugendlichen. Jahrbuch der Medizinischen Psychologie. Heidelberg: Springer, 1990. Landgraf I, Abetz L, Ware I. Child Health Questionnaire (CHQ): A Users Manual. Boston: The Health Institute Press, 1997. Oerter R, Montada L. Entwicklungspsychologie. Mnchen: Lang P, 1987. Wahn U, Szepauskk R, Bullinger M. Chronische Kranke Kinder. Stuttgart: Rupp Verlag. Feeny D, Furlong W, Barr RD, Torrance GW, Rosenbaum P, Weitzmann S. A comprehensive multi-attribute system for classifying the health status of survivors of childhood cancer. J Clin Oncol 1992: 10(6): 923928. Haley SM, Coster W, Ludlow I et al. Pediatric Evaluation of Disability Inventory (PEDI). Development, Standardization and Administration Manual. Boston: New England Medical Journal, 1992. Kovacs M. The Childrens Depression Inventory (CDI). Psychopharmacol Bull 1985: 21: 995999. Christie MJ, French D, Sowden A, West A. Development of child-centered disease-specific questionnaires for living with asthma. Psychom Med 1993: 55: 541548. Bullinger M. KINDL a questionnaire for health-related quality of life assessment in children. Zeitschrift fr Gesundheitspsychologie 1994: 1: 6477. Ware I, Sherbourne C. The MOS 36-item short form health survey SF-36: international conceptual framework and item selection. Med Care 1992: 30: 473481. Henrich G, Herschbach P. Fragen zur Lebenszufriedenheit (FLZ), 1992. In: Schwarz R, ed. Lebensqualitt in der Onkologie II. Mnchen Zuickschwerdt, 1995: 7793. Bullinger M, Ravens-Sieberr U. Stand der forschung zur gesundheitsbezogenen lebensqualitt von kinderneine literaturanalyse. Prv Rehab 1995: 106121. Petermann F. Lebensqualitt und Chronische Krankheit. Mnchen: Dustri, 1993.

16.

8.

17. 18.

9.

19.

10.

20.

11.

21.

12.

22.

13. 14. 15.

23.

(Received 26 February 1997; accepted 9 September 1997)

Quality of Life Research . Vol 7 . 1998

407