Long‐term complications and quality of life in children with intraspinal tumors

Abstract

Spinal cord compression by pediatric intraspinal tumors may result in persisting neurological deficits. The impact such late effects have on social and psychological adjustment and quality of life has not been documented previously. To study the long-term outcome of pediatric patients with intraspinal tumors, we followed 28 consecutive patients under 16 years of age who were treated in a single institution from 1975 to 2005. In 20 of 26 survivors (median follow-up time 8.4 years, range 0.8-31.3 years) who agreed to participate, neurological, orthopedic, and cognitive complications and their impact on behavioral and psychological adjustment, and health-related quality of life (HRQoL) were comprehensively assessed qualitatively and quantitatively. Primary therapy for spinal cord decompression was surgery in ten patients, chemotherapy in nine, and radiotherapy in one. Tumor control was good (10-year overall survival rate of 96%; 10-year progression-free survival rate of 84%). Persistent neurological complications occurred in 10 (50%) patients (paraparesis, n = 7; monoparesis, n = 3; neurogenic bladder dysfunction, n = 4; neurogenic bowel dysfunction, n = 2). Two of the ten patients with paresis depended on wheelchair. Seven (35%) patients developed scoliosis and six of these required spondylodesis. Survivors reported no major impairments in daily activities and rated their HRQoL only slightly lower than healthy controls. The only statistically significant difference was in emotional functioning. Most patients with intraspinal tumors have a good chance of cure. Apart from few patients, especially those with severe neurological complications, self-rated HRQoL is comparable to that of healthy controls.