Evaluating the ability to detect change of health-related quality of life in children with Hodgkin disease.

BACKGROUND: We evaluated 4 different health-related quality of life (HRQL) measures prospectively to determine their ability to detect change over time: the Health Utilities Index Mark 2 and Mark 3, the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core and Cancer Module, the EuroQol EQ-5D visual analogue scale (EuroQol), and the Lansky Play-Performance Scale. METHODS: Children with all stages of Hodgkin disease from 12 centers across Canada were asked to complete the 4 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 were enrolled in the study between May 1, 2002 and March 31, 2005. Two patients were excluded: 1 patient died shortly after the first time point and the other patient failed to complete any of the questionnaires. All measures showed a significant change between Time 1 and Time 4 (<0.05). When the change in child scores was analyzed between the time points using the child's self-reported change in HRQL, the PedsQL and the EuroQol showed significant change at all time points. CONCLUSIONS: All of the measures were able to detect change in a diverse group of children with Hodgkin disease. The PedsQL and the EuroQol appeared to be the most sensitive to change.

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.

An unusual case of spinal column metastasis after orthotopic transplantation for cardiac sarcoma.

The authors describe a patient who underwent orthotopic cardiac transplantation after an undifferentiated cardiac sarcoma was diagnosed. While receiving immunosuppressive therapy, the patient developed spinal column metastases and cauda equina syndrome requiring surgical decompression and stabilization. This occurred despite an exhaustive search for metastatic disease prior to the transplantation. To the authors' knowledge, this represents the first reported case of an undifferentiated cardiac sarcoma metastasis to the spine. This previously healthy 18-year-old woman presented with a myocardial infarction. Investigations revealed a left atrial tumor, which was resected. Following local recurrence, the patient underwent extensive studies to rule out systemic disease. Orthotopic heart-lung transplantation was then performed. While receiving postoperative immunosuppressive therapy the patient presented with cauda equina syndrome secondary to metastatic tumor compression at the L-5 level. Despite a comprehensive screening process to exclude metastatic disease prior to transplantation, spinal metastases occurred while this patient was receiving immunosuppressive therapy. This represents a previously unreported and clinically significant complication for undifferentiated cardiac sarcoma.