Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada.
African Palliative Care Association, Kampala, Uganda.
JCO Glob Oncol. 2023 Jan;9:e2200386. doi: 10.1200/GO.22.00386.
Despite advances in palliative care in Uganda, there has been relatively little recent patient-centered research investigating end-of-life outcomes in this region. We assessed the quality of dying and death of patients with cancer in hospice care in Uganda.
Bereaved caregivers of patients who received hospice care in Uganda and died 2-12 months earlier (N = 201) completed the Quality of Dying and Death Questionnaire, which includes 31 items and single-item ratings of overall quality of dying and moment of death, and the FAMCARE measure of family satisfaction with cancer care.
Caregivers reported low-intermediate overall quality of dying (mean [M] standard deviation [SD], 3.25 [2.98]) and overall quality of moment of death (M [SD], 3.59 [3.51]), with 47.0% of the ratings of these two outcomes in the poor range, but the mean family satisfaction with care was high (M [SD], 77.75 [10.26]). Most Quality of Dying and Death Questionnaire items (74.2%) were rated within the intermediate range. Items rated within the good range were religious-spiritual, interpersonal, and personal facets; two items within the poor range reflected physical functioning. Overall quality of dying was most strongly correlated with pain control (Spearman's rho [r] = 0.45, < .001), and overall quality of moment of death with state of consciousness before death and being unafraid of dying (r = 0.42, < .001). The FAMCARE score was not correlated with overall quality of dying or moment of death ( = .576-.813). Only one FAMCARE item, information on managing patient's pain, was correlated with overall quality of moment of death (r = -0.19, = .008).
End-of-life care in hospices in Uganda requires further improvement, particularly with regard to symptom control. Patient-centered data could bolster advocacy efforts to support quality improvement of palliative care in this and other countries.
尽管乌干达的姑息治疗取得了进展，但最近关于该地区临终结局的以患者为中心的研究相对较少。我们评估了乌干达临终关怀中癌症患者的死亡质量。
在乌干达接受临终关怀并在 2-12 个月前死亡的患者的丧亲护理人员（N=201）完成了《死亡和临终质量问卷》，该问卷包括 31 个项目和对整体死亡质量和死亡时刻的单项评分，以及家庭对癌症护理满意度的 FAMCARE 量表。
护理人员报告整体死亡质量为中低水平（平均[M]标准差[SD]，3.25 [2.98]），整体死亡时刻质量（M [SD]，3.59 [3.51]），这两个结局的评分中有 47.0%处于较差范围，但平均家庭对护理的满意度较高（M [SD]，77.75 [10.26]）。《死亡和临终质量问卷》的大多数项目（74.2%）的评分处于中等范围。评分处于良好范围的项目反映了宗教精神、人际关系和个人方面；两个评分处于较差范围的项目反映了身体功能。整体死亡质量与疼痛控制的相关性最强（Spearman's rho[r] = 0.45， <.001），整体死亡时刻质量与死亡前的意识状态和不惧怕死亡的程度相关性最强（r = 0.42， <.001）。FAMCARE 评分与整体死亡质量或死亡时刻质量均不相关（=.576-.813）。只有 FAMCARE 的一个项目，即关于管理患者疼痛的信息，与整体死亡时刻质量相关（r = -0.19， <.008）。
乌干达临终关怀机构的临终关怀需要进一步改善，特别是在症状控制方面。以患者为中心的数据可以支持在乌干达和其他国家改善姑息治疗质量的宣传工作。
