DISABKIDS Chronic Generic HRQOL (DCGM)

Generic measure

Measure domains: Emotion, Independence, Physical, Social Inclusion, Social Exclusion, Medication

Summary of development:  The DISABKIDS project was based on previous groups to develop international measures for adults.  The DISABKIDS project was a collaborative venture between seven European countries [Austria, France, Germany, Greece, the Netherlands, Sweden and the United Kingdom], and the goal was to develop an internationally valid instrument for children with chronic illnesses, as opposed to instruments which are developed in one country and then translated to other languages (Baars 2005). There were two parts of this project: first, developing the Chronic Generic HRQOL measure, which can be used for children with any chronic medical condition, then developing the disease-specific versions to be used in addition to the generic measure. The following condition-specific versions are available as an add-on to the generic measure: asthma [11 items], juvenile chronic arthritis [12 items], atopic dermatitis [12 items], diabetes mellitus [10 items], cerebral palsy [12 items], cystic fibrosis [10 items], and epilepsy [10 items] (Baars 2005).

The original Chronic Generic questionnaire had 56 items (Petersen 2005) but was narrowed down to 37 by using factor analysis (Debensason 2004). There is also a 10-item short form with an optional additional 2 medication-related questions for a total of 12 (Muehlan 2010). Finally, there is a six-item version for younger children ages 4-7 in which they can self-report their answers using smiley faces (Chaplin 2008). Two versions of each measurement instrument is available: a child/adolescent self-report and a parent-proxy report.  We include any article that has some results using the English versions; there are many articles with testing in other languages that are not included here.

Four versions: DISABKIDS Chronic Generic HRQOL, DISABKIDS DCGM-37, DISABKIDS DCGM-10, DISABKIDS SMILEY VERSION