Format. There will be three panellists. The session will be chaired by David Feeny who will briefly introduce a list of key issues (see below). Each panellist will then be given 10 minutes (strictly enforced) during which to make initial remarks. A brief period of discussion among Panel members will follow. The discussion will then be opened up to the audience; audience members will be admonished to keep their questions and/or remarks brief. Near the end of the session each panellist will be given five minutes (strictly enforced) to make final comments.

Dr. Ronald D. Barr, Pediatric Oncologist, one of the developers of the Health Utilities Index Mark 2 system

Ms. Jeanne Landgraf, Psychometrician, one of the developers of the Child Health Questionnaire

Dr. Ulrike Ravens-Sieberer, Clinical Psychologist, one of the developers of KINDL

Pre-circulation of Important Issues/Agenda. To facilitate focussed discussion a list of six key issues has been circulated to the panellists in advance. (A point-form list of the six issues will be included in the Final Conference Program.) Each panellist will be asked to ensure that they address at least one of the issues listed. (There will be pre-conference communication among panellists to ensure reasonable coverage of the six issues.)

Six Key Issues

Six key issues are listed, stated as assertions.

Panellists need not agree with the assertions!

1. Measures are Currently Available. There are reliable, valid, and responsive measures of health-related quality of life (HRQL) suitable for administration (self assessment) to children and adolescents. The existing set of measures include specific (for instance there are a number of pediatric oncology and pediatric asthma measures), generic profile measures (for instance, the Child Health Questionnaire), and generic preference-based measures (for instance, the Health Utilities Index Mark 2 and Mark 3 systems). Although clearly the number of measures is quite limited, especially when compared to the availability of measures of HRQL in adult populations, the lack of availability of measures is not as serious a barrier as it was a decade ago.

2. Responses based on Self Assessment by Children are not, in general, interchangeable with Proxy Assessments by Parents. A reasonable body of evidence has been accumulated indicating that responses from children do not agree completely with responses from parents (or clinicians). The degree of disagreement varies by dimension (domain) of health status and may vary with the age of the child and situation. There is some evidence that in situations that are highly stressful to parents (for instance, when the child is undergoing bone marrow transplantation), proxy assessments offered by parents may be affected by their own emotional health. Even though there is evidence on agreement between a self report by children and proxy assessments by parents, accumulating additional evidence on when and for what dimensions we might expect to observe agreement and when and for what dimensions we might expect to observe disagreement is important. It is also important to examine agreement between parents and clinicians and patients and clinicians.

3. Challenge to Accumulate Evidence/Identify Gaps. We need to accumulate evidence on reliability, validity, and responsiveness in new settings. This process will also help to identify gaps in the set of measures, especially diseases or problems for which specific measures have not yet been developed and are needed to address important questions.

4. Challenge to Develop Measures for Preschool Children. Most of the existing evidence on the ability of children to complete questionnaires or act as respondents is for school-aged children. A key challenge is to develop innovative approaches for preschool children and assess the reliability, validity, and responsiveness of their responses.

5. Challenge to Develop Skill in the Interpretation of HRQL Scores. Clinicians have had years of experience with standard clinical measures (for instance, white blood counts) and have learned how to attach meaning to these measures. There is much less familiarity with HRQL scores. Are there strategies to speed learning and assist users in interpreting HRQL scores? Are there strategies to identify clinically (or policy) important differences?

6. Challenge to Demonstrate the Usefulness of Assessing HRQL in Children and Adolescents. Do we have any evidence that the use of HRQL measures matters? Do we have evidence that results have affected clinical policy, the research agenda, or resource allocation? Do we have evidence that these measures have played an important role in managing patients and families? How would we accumulate such evidence?

Brief Statement for Inclusion in the Program. The session will examine available measures and the use of proxy respondents, identify gaps in the availability of measures, and discuss key challenges including self report by preschool children, the interpretation of scores, and evidence on the usefulness of assessing health-related quality of life in children and adolescents. Audience participation is welcome.