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.