Psychological distress among Chinese patients with breast cancer undergoing chemotherapy: Concordance between patient and family caregiver reports

Aims To examine patient-caregiver concordances about psychological distress among Chinese patients with breast cancer undergoing chemotherapy and identify factors related to concordance among patients and family caregivers. Design Cross-sectional study. Methods From October 2019 to June 2020, 137 patient-caregiver dyads were enrolled. Sociodemographic information, the distress thermometer (including the problem list), the Distress Disclosure Index and the Family Adaptability and Cohesion Evaluation Scale were used to collect data. Data were analysed using intraclass correlation coefficients (ICC), kappa statistics, two related samples test, chi-square tests and/or Fisher's exact tests and binary logistic regression. Results Overall, fair agreement was identified between patients' and caregivers' reports (intraclass correlation coefficients [ICC] = .528). Patients reported significantly higher psychological distress scores than paired caregiver reports. Lower psychological distress concordance was found among patients with comorbidities (odds ratio [OR], 0.352; 95% confidence interval [CI], 0.155-0.798) and lower levels of self-disclosure (OR, 0.402; 95% CI, 0.186-0.868). Conclusion There was relatively low concordance between patients' reports and caregivers' perceptions of psychological distress. Family caregivers tended to underestimate patients' psychological distress. A comorbid condition and lower levels of self-disclosure contributed to this bias. Impact Having an awareness of the incongruence between patient and caregiver may help healthcare providers better interpret caregiver assessments. Healthcare providers should reinforce patient-caregiver dyadic psychosocial education to improve concordance. More psychological care and substantial emotional support should be provided for Chinese breast cancer patients undergoing chemotherapy by family caregivers and healthcare providers.