Recipients of the Award for Excellence in Quality of Life Research
Stewart Goldman, M.D.
Medical Director, Neuro-Oncology,
Children's Memorial Hospital/Northwestern University
2003 Award for Excellence In Quality of Life Research
Society for Neuro-Oncology Award supported by The Sontag Foundation
Merit Award: $2,000
About Dr. Goldman's Research:
Quality of Life for Childhood Brain Tumor Survivors
Brain tumors are the most common solid tumors in children. Due to improved treatments over half of those treated survive longer than 5 years. However, survivors often have severe neurological, cognitive, and psychosocial complications from the effects of the tumors and/or their treatments, making quality of life (QOL) an important concern. The purpose of this study was to advance our knowledge in this area by interviewing survivors, their parents, and experts. Results from this study will facilitate the development of a QOL scale for this population.
Subjects included 20 survivors (Ss), 20 parents (Ps), and 12 experts (Es) with experience in treating/teaching brain tumor survivors. Mean age of Ss was 9.3 (SD=1.5); mean number of years post treatment was 4.0 (SD=2.1).
Concerns addressed by subjects were classified into categories of: physical well being (PWB), emotional well being (EWB), social well being (SWB), family well being (FWB) and cognitive functioning (CF). In physical well being, "fatigue" was a major concern for survivors (13/20), although few parents (4/20) and experts (3/12) mentioned it. Instead, top concerns for parents and experts were "balance/falling" (8/20) and "sensory impairments" (9/12), respectively. Within emotional well being, parents were concerned about the survivor being "moody" (13/20) and "easily frustrated" (12/20) while experts focused on survivors' feelings of "being different from other kids" (7/12) and "depression" (6/12). We did not ask survivors EWB-related questions. Survivors and parents identified few problems in the area of social well being; while experts were concerned that survivors "did not have many friends" (6/12). Regarding family well being, survivors and parents identified "arguing with parents" (6/20) and "siblings" (5/20) as major problems. Experts were concerned about "siblings' reactions to the survivor" (6/12). For cognitive functioning, survivors, parents and experts all identified "poor memory" and "poor attention span" as major problems.
In conclusion, survivors identified different problems in Quality of Life (QOL) than did parents and experts, particularly in physical well being and social well being, highlighting the importance of taking survivors' perspectives into account. Utilizing these results, we have developed a new QOL scale for childhood brain tumor survivors. This scale includes 37 concerns across different domains. A validation study will be conducted in the near future to examine the psychometric properties of the scale.
