The different DISABKIDS condition specific modules deal with the health-related quality of life (HRQoL) in children and adolescents with different chronic health conditions by developing European instruments for HRQoL assessment from the perspective of children and adolescents, as well as their parents. A common conceptual and empirical approach was applied to the development of each of the condition-specific modules. The aim was to have short and economic disease – specific versions at hand that can be used for intervention studies. The DISABKIDS condition specific modules ought to be applicable in different national and cultural contexts. The DISABKIDS questionnaire set contains seven disease-specific modules for the following conditions: asthma, arthritis, dermatitis, diabetes, cerebral palsy, cystic fibrosis and epilepsy.
In addition to the condition-specific quality of life modules, there are three questions for each of the modules to self-report on the perceived severity of symptoms, e.g.: the frequency of having asthma attacks from the child perspective. The items on perceived severity are displayed in the appendix.
Clinical severity assessment
The clinical severity was assessed by paediatricians. For each of the conditions, clinical severity measures were adopted from international measures of severity assessment and are described for each of the conditions. Additionally parental measures for severity assessment were included. The aim of both assessment types was to have a mild - moderate - severe - categorization on the severity for the condition.
In the following sections the background and content of each of the condition specific modules is described. All modules were developed according to a common approach, all scoring instructions and reference values are shown in the manual.
1.1.1 Scale structure of condition specific modules
The DISABKIDS condition-specific modules consists of varying number of Likert-scaled items (10-12), for each module assigned to two dimensions. The content of the two dimensions of each of the condition – specific modules is shown in table 2. First of the dimensions for all DISABKIDS condition specific modules refers to the (emotional or physical) “impact” of the condition, the second dimension refers to a topic that is specific for each condition (e.g. “stigma” for dermatitis, “treatment” in diabetes).
Table 1: Structure and design of the different DISABKIDS condition specific modules
1.1.2 Structure of (sub-)scales and classification of items
The content of each of the condition-specific dimension is shown in Table 2.
Table 2: Dimensions of the different DISABKIDS condition specific modules
The scoring instructions for the condition-specific dimension are shown in Table 3. The number of items for sub-scales ranges from 2 to10, corresponding to that, the possible range of raw scores varies between 8 (minimum raw score: 2, maximum raw score: 10) and 40 (minimum raw score: 10, maximum raw score: 50).
Table 3: Items included in the modules and dimensions of the different condition specific modules