Nurses provide valuable proxy assessment of the health‐related quality of life of children with Hodgkin disease

BACKGROUND: We prospectively compared the proxy reporting of health-related quality of life (HRQL) by parents and nurses of children with Hodgkin disease to see how well they correlated with the children's report. METHODS: Children with all stages of Hodgkin disease, their parents, and the clinic nurse were all asked to complete 4 different HRQL measures at 4 time points: 2 weeks after the first course of chemotherapy, on the third day of the second course of chemotherapy, during the third week of radiation, and 1 year after diagnosis. RESULTS: Fifty-one patients from 12 centers across Canada were enrolled in the study between May 1, 2002 and March 31, 2005. Two patients were excluded. The children's Pediatric Quality of Life Inventory (PedsQL) generic scores increased from 64 at base line to 81 at the end of the study. There was substantial agreement (intraclass correlation coefficient >0.6) among the participants' scores at most time points except when the child was actively receiving inpatient chemotherapy. At that time, there was only fair to moderate agreement between the child and parent, with the parents on average rating the PedsQL generic score 5 points lower than the child. The nurses still had substantial agreement at that time point with the PedsQL generic and cancer module as well as the EuroQol EQ-5D visual analogue scale visual analogue scale. CONCLUSIONS: Over the course of treatment for Hodgkin disease, there was substantial agreement among the parent's, nurse's, and children's reported HRQL scores. Nurses contribute valuable additional information as proxy respondents.