Validity, specificity, feasibility and acceptability of a brief pediatric distress thermometer in outpatient clinics

Abstract

Objective Psychosocial distress is under‐recognized in children with cancer and other serious medical illnesses because of a focus on pressing medical concerns. Aims This study assessed the validity, inter‐rater reliability, sensitivity/specificity, acceptability, and feasibility of administration of a pediatric distress thermometer (DT) designed to screen for the presence of psychosocial distress in youth with serious medical illnesses. Materials & Methods Two hundred eighty‐one patient–caregiver–provider triads were enrolled from two hospital outpatient clinics. Patients diagnosed with cancer and other life‐threatening diseases, caregivers, and providers completed the DT and a DT acceptability rating. Patients and caregivers completed standardized measures of anxiety, depression, pain, and fatigue. Providers completed a measure of disease severity. Data collectors completed a feasibility rating. Results The DT was significantly correlated with both caregiver and patient reports of depression, anxiety, pain, and fatigue, exhibiting concurrent validity. Parent, child, and caregiver report demonstrated significant, moderate inter‐rater reliability, with lower concordance between raters in the youngest age group. The DT is a sensitive instrument for screening of psychosocial distress when compared with the selected gold standard (Brief Symptom Inventory 18 depression subscale and the Children's Depression Inventory). The DT is not highly specific but quickly identifies those in need of further psychosocial assessment. Discussion Screening, using an adapted pediatric DT, is valid, feasible, and acceptable to patients, caregivers, and medical providers across chronic medical illnesses. Conclusion As patient and caregiver reports are not always concordant, both patient and caregiver report of distress are important for the provider to obtain clinically meaningful information to guide interventions. Published 2015. This article is a U.S. Government work and is in the public domain in the USA

Identifying Symptoms of Distress in Youth Living with Neurofibromatosis Type 1 (NF1)

“…Considering the endorsement of suicidal ideation reported on the CDI/BSI, suicidal ideation should be included in brief distress screening tools. Similarly, as noted in the larger study of the adapted DT (Wiener et al, 2015), while the accompanying symptom checklist provides important additional information to contextualize the child’s distress, future distress screens should assess whether these symptoms interfere with the child’s daily life. Symptom interference cannot be inferred from the DT.…”

“…Patients, ages 7–21 years old, were recruited as part of a larger study on distress screening of outpatients with serious medical illness from one of 5 clinics in two institutions; methods for the larger study have been previously described (Wiener et al, 2015). Eighty patient participants from the larger sample had a diagnosis of NF-1 and are reported here.…”

“…Additional instruments to assess anxiety, pain and fatigue were given in order to validate the DT; summary validation results included patients with NF and are described in Wiener et al, 2015.…”

Could we use parent report as a valid proxy of child report on anxiety, depression, and distress? A systematic investigation of father–mother–child triads in children successfully treated for leukemia

“…Two of these examined parents’ and children's ratings of child distress on versions of the distress thermometer. They both found moderate parent–child agreement at various stages of cancer and in a mixed chronic disease sample (including cancer) . The other compared parents’ and children's ratings of child anxiety during cancer treatment on the Pediatric Quality of Life Inventory and reported higher parental ratings .…”

“…Yet, most studies investigating these associations did not partial out the effect of child ratings from the parent ratings to study further moderators. Rare studies had samples of parental raters that include both mothers and fathers . They were also limited as they did not distinguish between mothers’ and fathers’ ratings nor did they separately investigate the role of fathers’ and mothers’ psychological symptoms.…”