Hearing Loss, Quality of Life, and Academic Problems in Long-term Neuroblastoma Survivors: A Report From the Children's Oncology Group

Abstract

We found evidence that long-term neuroblastoma survivors, especially those with hearing loss, are at elevated risk for academic learning problems and psychosocial difficulties. We also found strong concordance between parent-reported learning problems in the child and indications of distress in the child's self-reported quality of life.

Neuroblastoma, childhood cancer survivorship, and reducing the consequences of cure

“…[5][6][7] Such survivorship research in the pediatric setting has focused primarily on the more common malignancies, such as acute lymphoblastic leukemia and Hodgkin's lymphoma, with very little systematic study on late effects of neuroblastoma, perhaps with the exception of documenting the permanent ototoxic effects of cisplatin and carboplatin. [8][9][10][11][12] From the present study 4 and similar clinical followup work by Laverdie`re et al 13 and others, 14 we can reach a brief understanding of the risks for multi-organ sequelae among survivors of advanced stage neuroblastoma. The most prominent are endocrine impairments, including short stature, hypothyroidism and ovarian and testicular dysfunction; musculoskeletal complications, including kyphosis and scoliosis, significant dental abnormalities, slipped capital femoral epiphysis, fractures, fibrosis and hypoplasia; major organ system impairment, most notably serious renal dysfunction, but also cardiac toxicity and lung fibrosis or other pulmonary problems; neurological disorders, including opsoclonus myoclonus (opsoclonus ataxia), neurogenic bladder, and paresis and paraplegia; and sensory impairments, including chronic pain, parasthesia, cataracts and neurosensory hearing loss.…”

“…And of course, the effect that many parents fear the most (perhaps after that of recurrence) is a subsequent primary malignancy. How these conditions affect health-related quality of life of the patient, 9,15,16 and the well-being of the family, is very difficult to measure and act upon, but of enormous importance to parents and their children.…”

Residual tumor in cases of intermediate-risk neuroblastoma did not influence the prognosis

“…The survival rates of patients with intermediate-risk tumors reach up to~90%, with a consequent reduction in treatment in such cases (2,4,5). Long-term follow-up for these survivors, including monitoring for complications, has become an important issue (6)(7)(8). However, it is known that neuroblastoma with favorable biology often undergoes spontaneous regression and maturation, and these are associated with factors such as the age at diagnosis and the treatment administered (9,10).…”

Group-Wide, Prospective Study of Ototoxicity Assessment in Children Receiving Cisplatin Chemotherapy (ACCL05C1): A Report From the Children’s Oncology Group

“…[1][2][3] In children, cisplatin-induced ototoxicity has the potential to impact speech-language and social development, educatioxnal achievement, cognition, and quality of life. 4,5 As survival has improved, strategies for mitigating or preventing the adverse effects of cancer therapy have assumed greater importance. As a result of differences in pediatric hearing assessment protocols, 6,7 variability in hearing outcomes reporting, 3,7,8 and differences in the mechanisms for collecting and reporting audiologic data in multicenter clinical trials, 9,10 it is currently difficult to directly compare or pool ototoxicity data across studies.…”