Distress screening, rater agreement, and services in pediatric oncology

Abstract

Empirically based data support the validity of the distress thermometer recommended by the National Comprehensive Cancer Network as a standard screen for patient distress. However, the feasibility and utility of the distress thermometer has not been studied in the pediatric oncology setting. We conducted a study to: (1) investigate the validity of an adapted distress thermometer with pediatric oncology patients, (2) assess the degree of agreement among different respondents, including physician and psychosocial staff, with respect to (a) the pediatric cancer patient's distress and (b) the caregiver/parent's distress, and (3) to evaluate the relationship between distress levels and the psychosocial services provided to patients and families. Ninety-one patients and their English and Spanish-speaking caregivers were prospectively assessed at 3-month intervals for 1 year. The quantity of psychosocial services provided to each family was logged for a 12-month period. Convergent validity was demonstrated by reasonable agreement between the pediatric distress rating tool and standardized measures. Additionally, the demographic and medical predictors of distress were consistent with previously reported findings using more extensive assessment. There was reasonable agreement among multiple raters of the child's distress; however, there was discrepancy between self-ratings of caregiver distress and psychosocial staff ratings of caregiver distress. This difference in perception impacted the quantity of psychosocial services provided following the baseline assessment. The single-item distress thermometer is a viable option as a rapid screening tool of patient and caregiver distress to help efficiently identify those who should be evaluated further.