Ozdemir Semra, Ng Sean, Chaudhry Isha, Teo Irene, Malhotra Chetna, Finkelstein Eric Andrew
Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore.
Signature Programme in Health Services and Systems Research, Duke-NUS Medical School, Singapore.
Med Decis Making. 2023 Feb;43(2):191-202. doi: 10.1177/0272989X221125408. Epub 2022 Sep 16.
To longitudinally examine caregiver-reported treatment decision-making roles and to investigate the associations of these roles with caregiver burden, caregiving esteem, caregiver anxiety, and depression.
281 caregivers of patients with stage IV solid cancers were recruited from outpatient clinics in Singapore. Caregivers were eligible if they were aged ≥21 y, primary informal caregiver, and involved in treatment decision making. We used 3 y of longitudinal data. The decision-making roles were grouped into 4 categories: no family involvement, patient/physician-led, joint, and family-led/alone decision making. Mixed-effects linear regressions were used to assess associations between decision-making roles and caregiver outcomes.
On average, 72% of caregivers reported family involvement in decision making. Compared with baseline, a higher proportion of caregivers at the 36-mo follow-up reported no family involvement (from 23% to 34%, = 0.05) and patient/physician-led decision making (from 22% to 34%, = 0.02), while a lower proportion reported family-led/alone (from 19% to 7%, = 0.01) decision making. Compared with family-led/alone decision making, caregivers reporting no family involvement reported lower impact on finances (-0.15 [-0.28, -0.01], = 0.03) while caregivers who reported patient/physician-led decision making reported lower impact on schedule and health (-0.12 [-0.20, -0.03], = 0.01), and finances (-0.15 [-0.28, -0.03], = 0.02), and lower anxiety (-0.69 [-1.17, -0.22], < 0.01), and depressive symptoms (-0.69 [-1.12, -0.26], < 0.01). Caregivers who reported joint decision making reported higher caregiving esteem (0.07 [0.01, 0.14], = 0.02).
Higher family involvement in decision making was associated with higher caregiver burden and psychological distress. Help should be given so that family caregivers can support patient decision-making in a meaningful way.
Compared with baseline, a lower proportion of caregivers at the 36-mo follow-up reported family-led or family-alone decision making, and a higher proportion of caregivers reported patient-led or physician-led decision making.Higher levels of family involvement in decision making were associated with burdens on caregivers' daily life, health, and finances and increased caregiver anxiety and depression.Support must be given so that family members can contribute to making medical decisions in a rewarding manner.
纵向研究照料者报告的治疗决策角色，并调查这些角色与照料者负担、照料自尊、照料者焦虑和抑郁之间的关联。
从新加坡的门诊诊所招募了281名IV期实体癌患者的照料者。照料者年龄≥21岁、为主要非正式照料者且参与治疗决策即为符合条件。我们使用了3年的纵向数据。决策角色分为4类：无家庭参与、患者/医生主导、共同决策以及家庭主导/独自决策。采用混合效应线性回归来评估决策角色与照料者结局之间的关联。
平均而言，72%的照料者报告有家庭参与决策。与基线相比，在36个月随访时，报告无家庭参与决策的照料者比例更高（从23%增至34%，P = 0.05），以及患者/医生主导决策的比例更高（从22%增至34%，P = 0.02），而报告家庭主导/独自决策的比例更低（从19%降至7%，P = 0.01）。与家庭主导/独自决策相比，报告无家庭参与决策的照料者报告对财务的影响更低（-0.15[-0.28, -0.01]，P = 0.03），而报告患者/医生主导决策的照料者报告对日程安排和健康的影响更低（-0.12[-0.20, -0.03]，P = 0.01）以及对财务的影响更低（-0.15[-0.28, -0.03]，P = 0.02），并且焦虑更低（-0.69[-1.17, -0.22]，P < 0.01）以及抑郁症状更低（-0.69[-1.12, -0.26]，P < 0.01）。报告共同决策的照料者报告有更高的照料自尊（0.07[0.01, 0.14]，P = 0.02）。
家庭在决策中的更高参与与更高的照料者负担和心理困扰相关。应提供帮助，以便家庭照料者能够以有意义的方式支持患者决策。
与基线相比，在36个月随访时，报告家庭主导或家庭独自决策的照料者比例更低，而报告患者主导或医生主导决策的照料者比例更高。家庭在决策中的更高参与水平与照料者的日常生活、健康和财务负担相关，并增加了照料者的焦虑和抑郁。必须提供支持，以便家庭成员能够以有益的方式参与医疗决策。
