Department of Social Sciences and Health Policy, Wake Forest University School of Medicine, Winston-Salem, NC, USA.
Department of Biostatistics and Data Science, Wake Forest University School of Medicine, Winston-Salem, NC, USA.
J Natl Cancer Inst. 2024 Feb 8;116(2):324-333. doi: 10.1093/jnci/djad198.
Despite their vital roles, informal caregivers of adult cancer patients are commonly overlooked in cancer care. This study describes processes for identifying cancer caregivers and processes for distress screening and management among caregivers and patients in the understudied community oncology setting.
Supportive care leaders from the National Cancer Institute Community Oncology Research Program practices completed online survey questions regarding caregiver identification, caregiver and patient distress screening, and distress management strategies. We described practice group characteristics and prevalence of study outcomes. Multivariable logistic regression explored associations between practice group characteristics and caregiver identification in the electronic health record (EHR).
Most (64.9%, 72 of 111) supportive care leaders reported routine identification and documentation of informal caregivers; 63.8% record this information in the EHR. Only 16% routinely screen caregivers for distress, though 92.5% screen patients. Distress management strategies for caregivers and patients are widely available, yet only 12.6% are routinely identified and screened and had at least 1 referral strategy for caregivers with distress; 90.6% are routinely screened and had at least 1 referral strategy for patients. Practices with a free-standing outpatient clinic (odds ratio [OR] = 0.29, P = .0106) and academic affiliation (OR = 0.01, P = .04) were less likely to identify and document caregivers in the EHR. However, higher oncologist volume was associated with an increased likelihood of recording caregiver information in the EHR (OR = 1.04, P = .02).
Despite high levels of patient distress screening and management, few practices provide comprehensive caregiver engagement practices. Existing patient engagement protocols may provide a promising platform to build capacity to better address caregiver needs.
尽管非正式的成年癌症患者照顾者在癌症护理中起着至关重要的作用，但他们通常被忽视。本研究描述了在研究较少的社区肿瘤学环境中识别癌症照顾者以及对照顾者和患者进行痛苦筛查和管理的过程。
国家癌症研究所社区肿瘤学研究计划实践的支持性护理负责人完成了关于照顾者识别、照顾者和患者痛苦筛查以及痛苦管理策略的在线调查问题。我们描述了实践群体的特征和研究结果的流行率。多变量逻辑回归探讨了实践群体特征与电子健康记录（EHR）中照顾者识别之间的关联。
大多数（64.9%，72/111）支持性护理负责人报告了常规识别和记录非正式照顾者；63.8%将此信息记录在 EHR 中。只有 16%的人常规筛查照顾者的痛苦情况，尽管 92.5%的人筛查患者。为照顾者和患者提供了广泛的痛苦管理策略，但只有 12.6%的人常规识别和筛查，并有至少 1 种针对有痛苦的照顾者的转介策略；90.6%的人常规筛查，并有至少 1 种针对患者的转介策略。拥有独立门诊诊所（比值比[OR] = 0.29，P = .0106）和学术附属关系（OR = 0.01，P = .04）的实践更不可能在 EHR 中识别和记录照顾者。然而，较高的肿瘤学家数量与在 EHR 中记录照顾者信息的可能性增加相关（OR = 1.04，P = .02）。
尽管对患者痛苦进行了高度筛查和管理，但很少有实践提供全面的照顾者参与实践。现有的患者参与协议可能为建立能力以更好地满足照顾者的需求提供了一个有前途的平台。
