ABSTRACT
BACKGROUND: The long-term psychological/neuro-psychological sequalae for a minority of survivors of childhood cancer are considerable. This project aims to develop and validate a psychosocial and memory/learning distress thermometer (DT) for paediatric/young adult cancer patients. METHODS: Pilot/Development Age-appropriate versions of the DT were developed. A pilot study tested acceptability, usability, and design. VALIDATION: Seven collaborating paediatric-oncology centres with 549 participants validated the DT against Strengths and difficulties questionnaire (SDQ) and Hospital Anxiety and depression scale (HADS) for psychological issues, Utilities Index Mark 2 (HUI2) for memory/learning issues, PedsQL and SF-8 measured quality of life. RESULTS: Using a cut-off of four, sensitivity against SDQ for under 18 was 75.8%, 18plus against HADS was 94.1%. The specificity was 53.3% against the SDQ for the 18plus specificity against the HADS was 47.1%. The sensitivity against the HUI2 for all age groups was 89.0% specificity was 70.3%. CONCLUSION: The DT is a valid and reliable measure screening instrument. It can be used to identify early on those experiencing psychological distress and memory problems.
