Is the Give Youth a Voice questionnaire an appropriate measure of teen-centred care in paediatric oncology: a Rasch measurement theory analysis.

BACKGROUND

Adolescents have their own views about the cancer care they receive and how they feel they are treated, but their opinions are rarely solicited.

OBJECTIVE

To determine whether the 56-item Give Youth a Voice (GYV-56), its subscales and its 20-item short-form, are clinically meaningful and psychometrically sound instruments that can be used to measure teen-centred care (TCC) in paediatric oncology.

DESIGN

Qualitative interviews and a questionnaire survey.

SETTING AND PARTICIPANTS

Qualitative interviews with 38 childhood cancer survivors. GYV-56 data collected from 200 paediatric cancer patients and survivors.

MAIN OUTCOME MEASURE

The GYV-56, which measures the following four aspects of service delivery: Supportive and respectful relationships; Information sharing and communication; Supporting independence; and Teen-centred services.

RESULTS

Qualitative data provided broad support for the TCC conceptual framework and GYV-56 items. After post-hoc reduction of the response options from 7 to 3 (to correct for disordered thresholds), fit to the Rasch model was good, most items showed acceptable fit residuals and chi-square P-values, scale reliability were supported and item locations defined a continuum for TCC that was well-targeted to the sample. By calibrating the items for each subscale and the short-form to the full scale, the scores obtained on each measure are directly comparable.

CONCLUSION

Our study found initial support for use of the GYV with a reduced response option format for examining TCC in the adolescent oncology patients. in this paediatric population. Further research using the GYV is needed to elaborate upon our findings.