Bias reported by family caregivers in support received when assisting patients with cancer‐related decision‐making

• Published in: Cancer medicine (Malden, MA) MA), 2023-02, Vol.12 (3), p.3567-3576
• Main Authors: Dionne‐Odom, J. Nicholas, Ornstein, Katherine A., Azuero, Andres, Harrell, Erin R., Gazaway, Shena, Watts, Kristen Allen, Ejem, Deborah, Bechthold, Avery C., Lee, Kyungmi, Puga, Frank, Miller‐Sonet, Ellen, Williams, Grant R., Kent, Erin E.
• Format: Article
• Language: English
• Subjects: Age; Anxiety; Bias; Body weight; Cancer; Caregivers; Caregivers - psychology; Decision making; discrimination; Education; Ethnicity; Family - psychology; family caregiver; Female; Gender; Generalized anxiety disorder; Health care; Humans; Male; Mental depression; Neoplasms - therapy; Patients; Physicians; Political identity; Polls & surveys; Prostate; Remission (Medicine); Sexual behavior; Sexual orientation; Sociodemographics
• ISSN: 2045-7634; 2045-7634
• DOI: 10.1002/cam4.5182

Background Family caregivers play an increasing role in cancer treatment decision‐making. We examined bias reported by family caregivers in the support they and their patient received from their healthcare team when making these decisions, including associations with distress. Methods Analysis of 2021 national survey data of family caregivers of patients with cancer (N = 2703). Bias experienced in decision support was assessed with the item: “Have you felt that the support you and the person with cancer have received for making cancer‐related decisions by your doctor or healthcare team has been negatively affected by any of the following?” Check‐all‐that‐apply response options included: age, race, language, education, political affiliation, body weight, insurance type or lack of insurance, income, religion, sexual orientation, and gender/sex. Chi‐square and regression analyses assessed associations between bias and caregiver distress (GAD‐2, PHQ‐2). Results Of 2703 caregiver respondents, 47.4% (n = 1281) reported experiencing ≥1 bias(es) when receiving decision support for making cancer‐related decisions. Bias was more prevalent among younger caregivers, males, transwomen/men or gender non‐conforming caregivers, racial/ethnic minorities, and those providing care over a longer time period. The odds of having high anxiety (GAD‐2 scores ≥ 3) were 2.1 times higher for caregivers experiencing one type of bias (adjusted OR, 2.1; 95% CI, 1.6–2.8) and 4.2 times higher for caregivers experiencing ≥2 biases (adjusted OR, 4.2; 95% CI, 3.4–5.3) compared to none. Similar results were found for high depression scores (PHQ‐2 scores ≥ 3). Conclusions Nearly half of caregivers involved in their care recipients' cancer‐related decisions report bias in decision support received from the healthcare team. Experiencing bias was strongly associated with high psychological distress. Using data from a nationally representative online panel survey of family caregivers of patients with cancer, we found that nearly half of caregivers involved in their care recipients’ cancer‐related decisions reported bias in the healthcare team decision support they and the patient received. Furthermore, experiencing this bias was associated with high caregiver psychological distress.