Couples symptom burden in oncology care: Perception of self and the other.

Abstract

213 Background: Cancer survivors and their caregivers have symptoms that wax and wane over time and are interrelated. We report on the results of a communication survey exploring symptom burden in couples presenting for care in an integrative oncology (IO) clinic. Methods: Couples were approached for participation while waiting for an IO service (Physician Consultation, Massage, Acupuncture, Physical Therapy, Nutrition). 50 patients and their partner completed the Edmonton Symptom Assessment Scale (ESAS; 0-10, 10 worst). Patient and partner each completed two ESAS forms: one for themselves and one for their perception of the other’s symptoms. Each also completed a Global Health scale (PROMIS 10). ESAS distress subscales analyzed included Psychological (PSS) and Physical (PHS). Paired t-tests were used to examine all measures. Results: Patients (58% female) had most frequent cancer diagnoses of breast (22%) and gastrointestinal (18%). Patients rated their own physical symptoms of Fatigue (p = 0.002), Nausea (p < 0.001), Drowsiness (p = 0.032), Appetite (p = 0.008), and Shortness of Breath (p = 0.001) significantly higher than their partner’s rating of their symptoms. Patient self-rating for psychosocial symptoms of anxiety and depression was not significantly different from partner rating of patient symptoms. Partners were more accurate rating psychological symptoms (ESAS PSS, patient 3.89 vs partner 3.72, p = 0.836) and less accurate interpreting physical symptoms (ESAS PHS, patient 16.43 vs partner 9.94, p < 0.001). Except for Sleep, Financial Distress, and Spiritual Pain, partners rated all their own symptoms significantly lower compared to patient’s rating of them (all p’s < 0.001). Patients reported significantly lower global health (36.9 vs 42.9, p < 0.001) and physical health (16.6 vs 20.2, p < 0.001); no differences were observed for mental health for patients vs caregivers (14.2 vs 15.12, p = 0.1). Conclusions: Our findings suggest that partners may better perceive psychological stressors expressed by patients but may be less sensitive to physical symptoms. Interventions aimed at assisting caregivers in better understanding patient physical symptom burden are warranted.