gms | German Medical Science

Background: Patient-reported outcomes (PRO) are gaining importance in health care, as they complement clinical examinations and diagnostics. PROs may be particularly important in paediatric health care in order to facilitate doctor-patient communication and identify areas where young patients have particular needs. This paper reports the implementation of a computer-adaptive test (CAT) for measuring health-related quality of life (HRQoL) in children/adolescents in two paediatric clinics in Germany. The Kids-CAT was developed based on the well-established Kidscreen-27 dimension structure. It is the first computer-adaptive test to assess HRQoL in children and adolescents. The paper focuses on feasibility and user experience with the Kids-CAT, particularly patients’ experience with the Kids-CAT and clinicians’ experience with the Kids-CAT Report.

Research question: What are the practical experiences of paediatricians and young patients using the Kids-CAT and the Kids-CAT Report in terms of feasibility and user acceptance in clinical routine?

Methods: The Kids-CAT Study was designed as a longitudinal prospective study. Following the development phase of the new tool, the Kids-CAT was used in a clinical study including n=306 chronically ill children and adolescents aged 7 to 17 with asthma, diabetes or rheumatoid arthritis. The Kids-CAT was completed by the young patients at eight time points over one year at a clinic or at home. A feedback report was made available to clinicians upon completion of the electronic data assessment by the patients. We applied a multi-method research approach to assess both feasibility and acceptability of the Kids-CAT among clinicians and children/adolescents within the clinical implementation phase of our study. We conducted two focus groups with paediatricians (total n=8) who had used the Kids-CAT Report during the study. Further, all children and adolescents were invited to fill out a questionnaire about their experience with the instrument. A qualitative data analysis was performed for the analysis of the focus groups, while statistical evaluation was conducted to assess the experience of children and adolescents with the instrument.

Results: Children/adolescents indicated that the Kids-CAT was easy to complete. All pediatricians reported that the Kids-CAT was easy to integrate into clinical practice and expressed that routine implementation of the tool would be desirable. The report was described as a valuable source of information, facilitating the assessment of self-reported HRQoL of their young patients.

Discussion: The practical experience and assessment of the Kids-CAT as reported by children/adolescents and the Kids-CAT Report as indicated by paediatricians suggests that the newly developed instrument to assess HRQoL is a feasible tool within clinical practice.

Practical implications: The Kids-CAT is a useful tool to assess HRQoL in children/adolescents, which facilitates the inclusion of the patient-perspective in the treatment of children and adolescents with chronic conditions. The Kids-CAT Report is a useful adjunct to standard clinical care with the great potential to improve patient-paediatrician communication, enabling clinicians to evaluate and monitor their young patients’ self-reported HRQoL.