Beyond presence of symptoms: Self-reported psychosocial distress interference among outpatient youth with cancer and other life-limiting conditions

Abstract

Background: Youth with life-limiting conditions face significant psychosocial challenges (e.g., symptoms of anxiety, depression, and pain) throughout illness and treatment. Without appropriate intervention, this can negatively affect long-term outcomes (e.g., disease management, health-related quality of life). Prompt identification and appropriate attention to distress can mitigate these effects. We aimed to determine the prevalence and severity of distress interference among outpatient youth with cancer and other life-limiting conditions, using the Checking IN screener.

Procedure: Within a larger study across four hospital centers, English-speaking pediatric outpatients aged 8-21, and a caregiver-proxy-reporter, completed a brief distress screener. Descriptive analyses were used to characterize the sample and evaluate reported distress symptoms.

Results: Checking IN was completed by 100 participants, aged 8-21 (M = 14.27, SD = 3.81); caregivers completed an equivalent proxy screener. Youth most frequently endorsed fatigue (moderate: n = 50, 50.0%; high: n = 21, 21.0%), paying attention (moderate: n = 45, 45.0%; high: n = 16, 16.0%), and sleep difficulty (moderate: n = 46, 46.0%; high: n = 13; 13.0%) as problematic. Caregivers proxy reported fatigue (moderate: n = 46, 46.0%; high: n = 32, 32.0%), worry (moderate: n = 56, 56.0%; high: n = 10, 10.0%), and sleep difficulty (moderate: n = 47, 47.0%; high: n = 14; 14.0%) as most problematic. Group differences between youth and caregiver responses were not significant.

Conclusions: Youth self-report via Checking IN can detect psychosocial distress interference. By directing resources based on real-time assessment of symptom interference, there is potential to simplify outpatient psychosocial screening and improve referral timeliness and specificity, thus allowing for more effective attention to evolving symptoms of distress.

Keywords: adolescents; children; chronic illness; outpatient care; psychosocial distress.

FIGURE 1

Level of endorsement by symptom domain. *Moderate includes responses of “A little bit” or “Sometimes”; **high includes responses of “Often” or “Almost.”