Changes in psychosocial distress and the number and types of problems reported by patients with cancer when routine screening is integrated within cancer services

Abstract Background: The impact of patient-reported outcome measures on patient outcomes in longitudinal clinical studies is poorly understood. This observational study explored longitudinal changes in distress and problems reported by cancer patients screened and managed in accordance with a clinical pathway for anxiety and depression (ADAPT CP), implemented over 12 months. Methods: Patients reported distress using the Distress Thermometer and indicated reasons for distress using the 39-item Problem List across five domains: practical, social, emotional, spiritual/religious, and physical. Repeat screening occurred on average 3 monthly (quarterly). Results: Six hundred sixty patients from 10 participating services completed 1,256 screening events over 12 months, reporting 8,645 problems. On average, more emotional (27–34%) and physical (19–22%) issues were reported across all quarters than practical (7–9%) and social (8–9%) issues. Distress and emotional, physical, practical, and social problems reduced from initial to follow-up screens, although the decrease in emotional problems over time was not significantly different than that of the other problems. Worry, fatigue, sleep difficulties, health of family members, and insurance/finances were more persistent problems. Conclusions: Although distress and the change in the number of emotional concerns over time did not differ from other problems, rescreening is recommended within oncology settings to allow patients to indicate new or persistent problems and hospital staff to monitor and assess needs. Emotional concerns are high in oncology patients, suggesting the need for the prioritization of psychosocial care. These problems can persist over time due to their clinically challenging nature or because access to, or implementation of, evidence-based interventions are not yet widespread.