Table 2 Summary of results

(a) Familiarity and attributions regarding the measurement and discussion of HRQoL by the usage of the PedsQL4.0 and IWQOL- Kids (with or without webtool) within the national model ICCO^a

Current HRQoL assessment and familiarity:

•HRQoL was considered important

•CPs gained insight into children’s HRQoL by talking with families

Attributions:

•CPs were unfamiliar with the questionnaires^b

•The questionnaires could concretize, examine and track children’s HRQoL

•CPs appreciated the layout of the webtool

•The questionnaires are difficult for some children

•The questionnaires focus on limitations instead of strengths, the latter is more in line with CPs’ positive approach

(b) Wishes and needs with regard to the usage of the PedsQL4.0 and IWQOL-Kids in order to meet the three purposes of assessing HRQoL

•CPs were willing to test the webtool

Aims of the questionnaires according to CPs:

•To diagnose

•To target treatment

•To evaluate treatment

•To motivate families

•To motivate CPs to discuss HRQoL

•The questionnaires capture children’s own answers

•Children’s answers could help to discuss HRQoL in detail

Barriers for assessment:

•Content of the questionnaires (both: difficult and negative tone, IWQOL-Kids: confronting)

•Lack of time

•Additional administrative workload

Preconditions of assessment:

•Beneficial for families

•Contribution to CPs tasks and work satisfaction

•Enough available time

•Additional information about the questionnaires and webtool

•Facilitated by own organization

(c) Wishes and needs with regard to the practical implementation of the measurement and discussion of HRQoL within (the six steps of) the national model ICCO

•First assessment in step 2 (‘conduct a broad assessment’) within the national model ICCO

•Follow up assessment between step 5 (‘start with the execution of the care plan’) and step 6 (‘make sure the achieved changes are sustained’)

•Exact timing and place of assessments tailored to individual cases

•Important to discuss outcomes