Neuropediatrics 2012; 43 - PS15_10
DOI: 10.1055/s-0032-1307117

Measuring quality of life in patients with life-limiting neuromuscular disorders: a pilot study using the Kidscreen-27- and KINDL-R-questionnaire

M Smitka 1, J Loll 2, S NolteBuchholtz 2, M von der Hagen 1
  • 1Universitätskinderklinik Dresden, Abteilung Neuropädiatrie, Dresden, Germany
  • 2Universitätskinderklinik Dresden, Dresden, Germany

Aims: Quality of life is of major importance for decisions regarding therapeutic or other interventions in palliative care. Palliative care intends to assure the highest possible quality of life. Despite the particular significance of quality of life, there are no validated methods of measurement for paediatric palliative patients. Widely used are the Kidscreen-27- and the KINDL-R-questionnaires. Both questionnaires are validated for the paediatric population, and for both questionnaires there is a proxy version for parents or primary care-givers available. In this pilot study the feasibility of the two questionnaires as measurement of quality of life in patients with life-limiting neuromuscular disorders should be assessed.

Methods: In this pilot study 26 palliative patients with neuromuscular disorders and 70 palliative patients without neuromuscular disorders were interviewed. The results of the semistructured interviews and the Kidscreen-27- and KINDL-R-questionnaires were compared against each other. Patients were defined as palliative patients according to the ACT-definition (Association for Children with Life-Threatening or Terminal Conditions and their Families 2003). Patients between 8 to 18 years of age participated in the study.

Results: No significant discrepancies could be found between the two patient groups regarding results of the Kidscreen-27 and the KINDL-R-questionnaire. The KINDL-R-questionnaire displayed a stronger correlation between the self and proxy version, compared to the Kidscreen-27-questionnaire in patients with neuromuscular disorders. The interviews displayed a small advantage of the Kidscreen-27compared to the KINDL regarding the assessment of parents how reliable quality of life is measured by the questionnaire.

Conclusion: In summary both questionnaires were evaluated as reliable tools for the assessment of quality of life by the patients and their caregivers. Nonambiguous constantly significant differences in favour for one of the two questionnaires were not observed.