In addition to the Haemo-QoL questionnaire generic quality of life measurements and questions concerning psychosocial determinants were included in the Haemo-QoL project.

Generic measurements

Generic quality of life measurements were included for children and parents. Children filled in the KINDL questionnaire which assess with 24 items pertaining to 6 dimensions children’s perceived quality of life. The general Health question from the Child Health Survey (CHQ: Landgraf et al., 1997) was included as well. Parents filled in the proxy version of the KINDL and the Child Health Questionnaire, which assess with 28 items pertaining to 11 domains of quality of life. Concerning their own quality of life they filled in the SF-12. These 12 items can be summarised to two dimensions (physical health and mental wellbeing).

Psychosocial determinants

Within the Haemo-QoL study, data on coping, internal locus of control as well as social support perceived and life satisfaction were collected as potential determinants of quality of life in children age groups II and III.

The life satisfaction scale was adapted for children from a validated questionnaire (FLZ), which was only available for adults (Henrich & Herschbach, 1992). The questionnaire assesses with 10 items how satisfied the children are with different aspects of their life. A global satisfaction item was included as well.

Similar to the life satisfaction scale no validated questionnaire for the assessment of social support was available for children. The Social Support Scale (SSS: Sherbourne & Stewart, 1991) was adapted for children and assessed with 8 items how children felt supported by others.

The KID-Cope is a validated questionnaire for the assessment of coping strategies for the use in different chronically ill children (Spirito et al, 1988). With 9 items two coping strategies (‘positive approach’ and ‘negative avoidance’) were assessed.

Since no questionnaires for children were existing for the assessment of health locus of control an already validated questionnaire for adults was adapted for children (KKG: Lohaus & Schmitt, 1989). One dimension ‘internal health locus of control’ was assessed with 7 items.