The TCCS-A short measure to evaluate treatment-related coping and compliance in hospitalised childhood cancer patients and their primary caregivers

This report describes the development and validation of a short rating system to assess treatment-related coping and compliance (TCC) in childhood cancer patients and their primary caregivers. The initial system contained 21 items referring to supportive parenting style of the caregiver, treatment-related attitudes and behaviour of both caregiver and child, communicative skills of the child and relationships with the health care team. This questionnaire was completed independently by a nurse, a nursery-school teacher, a psychologist and a physician who are all working full time at the oncology unit. The sample under study included 111 patients aged 3-18 years who were on treatment, as well as their caregivers (in most cases the mother). Using defined rules for item reduction, the questionnaire was reduced to 14 items, of which seven were referring to the TCC of the child and seven to the TCC of the caregiver. Cronbach's alpha coefficients ranged from 0.81 to 0.91 across the different assessments, indicating high internal consistency reliability. There was moderate to high agreement amongst observers (intra-class correlation coefficients ranged between 0.50 and 0.68). Construct validity was confirmed by a significant association between a global rating of TCC and the instrument's summary scores in the four assessments. Our system may be used for clinical trials and clinical monitoring. Further testing of psychometric properties is recommended.