Caregivers’ information needs and their ‘experiences of care’ during treatment are associated with elevated anxiety and depression: a cross-sectional study of the caregivers of renal cancer survivors

Purpose This study aims to examine the unmet needs and psychological distress (anxiety and depression) in family caregivers of renal cell carcinoma survivors. Methods A cross-sectional study design was used. Unmet needs were assessed with the Supportive Care Needs Survey-Partners and Caregivers (SCNS-P&C) questionnaire, and psychological distress was measured with the Hospital Anxiety and Depression Scale (HADS) in a telephone survey of 196 caregivers of renal cell carcinoma (RCC) survivors. Chi-square tests examined bivariate relationships, and multivariate logistic regression examined the associations between anxiety and depression and of unmet needs with caregivers’ experience of patients’ care, time spent caregiving, caregivers’ demographic characteristics and patients’ disease stage. Results Sixty-four percent of caregivers had at least one low, moderate or high unmet need, with 53 % reporting at least three needs and 29 % reporting 10 or more unmet needs (median 2, range 0–38). Elevated anxiety (HADS-A > 8) and depression (HADS-D > 8) were found in 29 and 11 % of the sample, respectively. Psychological and emotional needs were associated with advanced cancer stage (stages 3 and 4) (OR 3.07, 95 % CI 1.35–6.76) and with experience of care during surgery (OR 0.87, 95 % CI 0.78–0.99). Healthcare service needs were associated with time spent caregiving, with caregivers spending >1 h/day in the past week having three times higher odds (OR 3.44, 95 % CI 1.52–7.72) than those not spending any time. Odds of experiencing information needs were lower in caregivers who were in a relationship (OR 0.20, 95 % CI 0.04–0.83). Elevated anxiety (OR 1.59, 95 % CI 1.09–2.33) and depression (OR 2.02, 95 % CI 1.08–3.79) were associated with unmet information needs. Depression was also associated with experiences of care during treatment (OR 0.69, 95 % CI 0.49–0.96). Conclusion RCC caregivers’ unmet information needs are associated with elevated anxiety and depression. Improved experiences of cancer care are associated with lower odds of unmet needs and elevated depression in RCC caregivers.