The DISABKIDS chronic generic module deals with the health-related quality of life (HRQoL) in children and adolescents with different chronic health conditions and adresses HRQoL aspects that pertain not to specific conditions but to chronic conditions in general. The DISABKIDS chronic generic module instrument ought to be applicable in different national and cultural contexts.
The proposed DISABKIDS chronic generic module underwent various steps of instrument development in a simultaneous cross-cultural approach (see in detail above). After conducting focus groups and forming an international item pool, only those items were selected that pertain to chronic conditions, while condition specific and generic items were processed separately. Further steps including a translation process following international guidelines [Guillemin and others 1993] and the pilot testing of the instrument [Bullinger and others 2002]. The field study analysis of the DISABKIDS chronic generic module comprises additional psychometric evaluations of both the single items and the scale structure. This analyses results in the final version of the DISABKIDS chronic generic module and is reported in detail elsewhere [Debensasson and others in press].
1.1.3 Description of the instrument
In the following section the scale structure, scoring procedures, reference data for the chronic generic module is described and its convergent and discriminant validity demonstrated. Further reference data is shown in the appendix (T-score, percentiles).
1.1.4 Self- and proxy assessment
Two versions of the DISABKIDS chronic generic module are available: the self-report version (child version) and a proxy version (proxy version). Both versions of the DISABKIDS chronic generic module are available in six different languages: Dutch, English, French, German, Greek, and Swedish. A computer-assisted version of the paper-and-pencil version of the DISABKIDS chronic generic module is available as well, in six languages.
1.1.5 Scale structure and scoring
The DISABKIDS chronic generic module (DCGM-37) consists of 37 Likert-scaled items assigned to six dimensions: Independence, Emotion, Social inclusion, Social exclusion, Limitation, and Treatment. Pilot test results denoted satisfactory internal consistencies of these scales [Petersen and others 2004], ranging from α = .79 (Social inclusion) to α =.90 (Emotion). The sub-scales of these six dimensions of the DCGM-37 can be combined to produce a general score for health-related quality of life (HRQoL), denoted as the DCGM-37 total score. The six sub-scales are additionally associated with three domains, denoted as mental, social, and physical. These HRQoL domains have evolved from the mental, social and physical domains of HRQoL, as conceptualised by the WHO. Health-related quality of life is conceived as a second-order factor, underlying the structure of the DCGM-37 (see Figure 1).
Figure 1. Structure of the DISABKIDS Chronic Generic Module
Table 1: Items included in the sub-scales of the DISABKIDS chronic generic module
Table 2 describes the main content areas of each of the chronic generic module. The Independence sub-scale describes whether the child is able to live an autonomous life without being impaired by the condition. The Emotional sub-scale assesses emotional reactions caused by the conditions. While the Social inclusion sub-scale describes the perception of positive feedback from friends and family, the Social exclusion sub-scale delineates a very negative impact of the condition that makes the child feel stigmatized and left out. The first Physical sub-scale is related to the limitation experimentally the conditions, while the second Physical sub-scale, the Treatment sub-scale, assesses the impact of taking treatment or receiving any other medical treatment for the condition
Table 2: Domains and facets of the DISABKIDS chronic generic module
1.1.6 Administration - suggested uses
The chronic generic modules can be administered in all clinical studies. For instance, they can either be used to compare quality of life across different conditions with each other or focus on intervention studies that are conducted across different conditions. In cross-sectional or longitudinal studies on specific conditions, it is suggested to use both the chronic generic modules (in its long or short version) as well as the disease-specific module.
In order to compare data with epidemiological reference data, it is suggested to include the KIDSCREEN measure.