Tamryn F Gray1,2,3, Deborah Forst3,4, Ryan D Nipp3,5, Joseph A Greer3,6, Jennifer S Temel3,5, Areej El-Jawahri3,5. 1. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA. 2. Division of Palliative Medicine, Department of Medicine, Brigham and Women's Hospital, Boston, Massachusetts, USA. 3. Harvard Medical School, Boston, Massachusetts, USA. 4. Department of Neurology, Massachusetts General Hospital Cancer Center, Boston, Massachusetts, USA. 5. Department of Medicine, Massachusetts General Hospital Cancer Center, Boston, Massachusetts, USA. 6. Department of Psychiatry, Massachusetts General Hospital Cancer Center, Boston, Massachusetts, USA.
Abstract
Background: Little is known about how patients with incurable cancer and caregivers differ in their prognostic awareness, and the relationship between caregiver prognostic awareness and their psychological distress. Objective: To investigate prognostic awareness in caregivers of patients with incurable cancer and prognostic discordance in patient-caregiver dyads and its association with psychological distress. Design: This is a cross-sectional study. Setting/Subjects: In total, subjects were 390 caregivers of adults with incurable lung, gastrointestinal, and brain cancers at a cancer center in the northeastern United States. Measurements: The Prognosis and Treatment Perceptions Questionnaire was used to assess prognostic awareness and Hospital Anxiety and Depression Scale to assess psychological distress. Results: In total, 39.7% (n = 147/370) and 17.3% (n = 64/370) caregivers reported clinically significant anxiety and depression symptoms. And 53.7% of caregivers reported the patients' cancer as "curable" and 44.1% reported the cancer was "not terminal." Caregivers' report of curability was not associated with their anxiety (odds ratio [OR] = 0.99, p = 0.93) or depression (OR = 1.05, p = 0.32) symptoms. Among 42.5% (124/292) and 26.0% (76/292) of dyads (n = 292), both patients and their caregivers agreed in their perception of the cancer as curable and incurable, respectively. In 19.9% of dyads (n = 58), patients reported their cancer as curable, while their caregivers reported it as incurable. In 11.6% of dyads (n = 34), patients reported the cancer as incurable while caregivers reported it as curable. Conclusions: More than half of caregivers have misperceptions about the patients' likelihood of cure, and one-third of patient-caregiver dyads have discordant perceptions. Supportive care interventions may facilitate conversations and enhance prognostic understanding in patients with incurable cancer and their caregivers.
Background: Little is known about how patients with incurable cancer and caregivers differ in their prognostic awareness, and the relationship between caregiver prognostic awareness and their psychological distress. Objective: To investigate prognostic awareness in caregivers of patients with incurable cancer and prognostic discordance in patient-caregiver dyads and its association with psychological distress. Design: This is a cross-sectional study. Setting/Subjects: In total, subjects were 390 caregivers of adults with incurable lung, gastrointestinal, and brain cancers at a cancer center in the northeastern United States. Measurements: The Prognosis and Treatment Perceptions Questionnaire was used to assess prognostic awareness and Hospital Anxiety and Depression Scale to assess psychological distress. Results: In total, 39.7% (n = 147/370) and 17.3% (n = 64/370) caregivers reported clinically significant anxiety and depression symptoms. And 53.7% of caregivers reported the patients' cancer as "curable" and 44.1% reported the cancer was "not terminal." Caregivers' report of curability was not associated with their anxiety (odds ratio [OR] = 0.99, p = 0.93) or depression (OR = 1.05, p = 0.32) symptoms. Among 42.5% (124/292) and 26.0% (76/292) of dyads (n = 292), both patients and their caregivers agreed in their perception of the cancer as curable and incurable, respectively. In 19.9% of dyads (n = 58), patients reported their cancer as curable, while their caregivers reported it as incurable. In 11.6% of dyads (n = 34), patients reported the cancer as incurable while caregivers reported it as curable. Conclusions: More than half of caregivers have misperceptions about the patients' likelihood of cure, and one-third of patient-caregiver dyads have discordant perceptions. Supportive care interventions may facilitate conversations and enhance prognostic understanding in patients with incurable cancer and their caregivers.
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