Inclusion criteria, exclusion criteria and study summary
The European Organisation for Research and Treatment of Cancer Quality of Life Group Core measure (EORTC QLQ-C30) is the most widely used cancer health-related quality of life (HRQoL) questionnaire. We will be recruiting adolescents (12-17 years) (n= 300 minimum) who have been diagnosed with cancer and receiving treatment for curative intent or who are receiving palliative care. We would like to know whether the EORTC QLQ-C30 is acceptable, and if the content is relevant and representative for this age group. We will also be comparing young people and their parents'/ guardians' questionnaire responses. This current study has a target sample size of 300. There will be a good spread of participants according to language, culture (this is an international study), age sub-group (12-14 years and 15-17 years), on treatment and palliative care. For pragmatic reasons, we envisage recruiting fewer patients receiving palliative care compared with those on treatment with curative intent. Participants will be asked to complete the EORTC QLQ-C30 followed by a debrief interview asking about their experience of completing the questionnaire. They will also be asked to complete the 23 item PedsQL teen self-report form designed for adolescents aged 13-18 years. This measures physical, emotional, social and school (role) functioning thus it lends itself for comparison with the EORTC QLQ-C30. The young people will also be invited to complete a 15-item symptom checklist. Socio-demographic and clinical characteristics including the ECOG performance status will be completed. Participants will be recruited by a member of the research or clinical team while visiting the hospital as an inpatient or outpatient or they will be contacted by their clinician. Questionnaire completion will be carried out at the hospital, over the telephone, Microsoft Teams or at the participant’s home.
