How to use the right Haemo-QoL Questionnaire

The Haemo-QoL questionnaires can be used for research purposes and for routine patient documentation. In research, they can be included in cross-sectional and in longitudinal studies (cohort studies, controlled studies, randomized clinical trials). In clinical practice, they can be used with each individual patient and/or parent, e.g. at the start of and during treatment, for patient monitoring. If compared with the reference data for the haemophilia paediatric population (see report), a patients quality of life status may be compared with his peers.

Choosing the right questionnaire involves the determination of the language needed and the patients age group, upon which version I, II or III can be selected. It is useful to include the parent version in age group I (although parent data are not a proxy of childrens self report), but it may not be necessary to do this in age group III. The patients self report should always have priority.

For children in age group I, the questionnaire has to be administered as an interview (best by CCC staff), older children do well with self report. Depending on schooling level and development, also children aged 8 to 10 may profit from being interviewed with the version II. In rare cases it is possible that the developmental age differs from the chronological age. If the child’s development appears to be retarded, it is recommendable to use the version for the lower age group.

Prior to administering the questionnaire, its purpose and form has to be explained to children and parents, and consent to administer should be obtain by children and parents. In research projects ethical approval of the project and signatures by the family on appropriate consent forms are strongly recommended.

The filling out of the forms (age groups II and III, parents I) should be explained and a quiet location to do so should be found. It is possible for children and parents to fill out the forms at home, but it should be made clear that this is done independently by children/adolescents and parents.

Upon completion, comprehensiveness of filling out should be checked and the identification of the form should be noted. Data can be computer inputted for easy scoring (in research projects) or can be scored by hand according to the scoring procedure described.