Evaluation of a comprehensive care clinic model for children with brain tumor and risk for hypothalamic obesity

The objectives of this study were to evaluate outcomes of a comprehensive care clinic (CCC) for children with hypothalamic obesity due to treatment for brain tumors by assessing weight parameters; health-related quality of life (HRQoL); and perception of health status, disease burden, care satisfaction, and physical activity. Thirty-nine patients (16 males) were reviewed. While attending the CCC the median %weight gain and percent ideal body weight (%IBW) of patients was lower (8.5%/year (range -3 to -14) and -4%/year (141.7-34), respectively) than the median %weight gain and %IBW (21.4% (15.8-32.0) and 19.9% (-18.7 to 149.2)) while treated in standard care. Rate of increase in %BMI slowed (4.5 kg/m(2) %/year (-17.8 to 8.4) vs. 8.4 kg/m(2) %/year (-3.1 to 28.1)) in patients attending the clinic compared to their before treatment in standard care. There was no change in blood pressure, fasting glucose, triglycerides or low-density lipoprotein cholesterol, and a significant increase in high-density lipoprotein cholesterol (1.09 +/- 0.33 to 1.24 +/- 0.04). After attending the CCC for a year, significant increases for child reported total HRQoL (63.7 +/- 18.4-71.3 +/- 13.3; P < 0.017), physical functioning (65.3 +/- 15.9-69.5 +/- 15.9; P < 0.045) and school functioning (61.1 +/- 21.0-71.1 +/- 16.5; P < 0.051) were found. Parents reported no significant change in HRQoL over the same period. Parents had significantly improved responses in areas of coordination of health care and understanding of their child's disease. Patients attending the CCC gained less weight while attending the clinic and exhibited improved HRQoL. Parents noticed improvements in various areas of their child's medical care.