Parent and Provider Ratings of Patient Distress: Are They Valid and/or Meaningful?

• Published in: Psycho-oncology (Chichester, England) Vol. 21; p. 27
• Main Authors: Zadeh, S, Wiener, L, Battles, H, Pao, M
• Format: Journal Article
• Language: English
• Published: Chichester Wiley Subscription Services, Inc 01.02.2012
• Subjects: Emotional disorders; Medical screening; Parents & parenting; Pediatrics; Thermometers; Validity
• ISSN: 1057-9249; 1099-1611

Distress screening within a pediatric cohort has received limited attention. In evaluating the validity of an adapted distress thermometer within an outpatient pediatric setting, the patient, a parent and a medical provider were each asked to rate the patient's distress. This talk will present the concordance data for both parents and medical providers with the patient's own distress ratings. Whether the parent's own distress is associated with their rating of their child's distress will be examined. Future directions for clinically meaningful pediatric and caregiver distress screening will be discussed. Study questionnaires were administered at one time point during an outpatient clinic visit. Youth, ages 7-21, participating in a clinical trial for the treatment of cancer, NF-1, HIV or a primary immune deficiency were invited to enroll. Using an adapted distress thermometer (Patel et al., 2009), the medical provider and one of the patient's parents and the patients themselves were asked to rate the patient's level of distress. Distress ratings were gathered from 124 patient-parent-provider triads. Preliminary results indicate a trend in which medical provider ratings of patient distress (r = 0.30, p < 0.001) are closer to patient self-ratings then parent ratings (r = 0.24, p < 0.01). This discrepancy was especially apparent with older children. Parents who scored in the clinical range on the BSI were more likely to rate their child's distress as higher. Data collection is ongoing. The use of multiple informants for a child's distress can be helpful. Assessing patient distress using solely parent may not always provide an accurate reflection of the patient's level of distress. Future studies assessing the reliability of patient distress ratings by multiple informants are needed. Findings from this study will help guide best practices for implementation of clinically meaningful distress screening in the pediatric cohort. This work is supported in part by the Intramural Research Programs of the National Institutes of Health, National Cancer Institute, National Institute of Mental Health, Center for Cancer Research and the NIH Clinical Center.