Manivannan Manavalan, Karunanithi Gunaseelan, Lakshminarayanan Subitha
Department of Radiation Oncology, Jawaharlal Institute of Postgraduate Medical Education and Research, Puducherry, India.
Department of Radiation Oncology (Regional Cancer Center), Jawaharlal Institute of Postgraduate Medical Education and Research, Puducherry, India.
Indian J Palliat Care. 2023 Jan-Mar;29(1):89-93. doi: 10.25259/IJPC_175_2022. Epub 2022 Oct 17.
Patients with advanced cancer with incurable diseases are generally cared for by their families in India. There is a lack of data on the perceived caregiver burden, quality of life (QOL) of patients and caregivers in India, especially among cancer patients not on any oncologic management.
We conducted a cross-sectional study among 220 patients of advanced cancer on best supportive care and their respective 220 family caregivers. Our primary objective was to identify a correlation between caregiver burden and QOL. After taking informed consent from both patients and caregivers, we assessed the QOL of the patient using the European Organization for the Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire Core 15 Palliative Care (QLQ C15PAL) questionnaire from the patient, assessing the Caregiver Burden using Zarit Burden Interview, assessing the QOL of the caregiver using the WHO QOL BREF Questionnaire, in a single session during their routine follow-up in the Palliative Care Clinic of our institution.
We noticed a statistically significant negative (Spearman) correlation between the Caregiver Burden as assessed by Zarit Burden Interview (ZBI) and the psychological (r = -0.302, < 0.01), social (r= -0.498, < 0.01) and environmental (r = -0.396, < 0.01) domains of the WHO QOL BREF Questionnaire. Caregiving Burden as assessed ZBI total score was noted to have a statistically significant negative correlation with physical functioning (r = -0.37, < 0.01), emotional functioning (r = -0.435, < 0.01) and global QOL scores (r = -0.499, < 0.01) assessed from the patient using the EORTC QLQ C15 PAL questionnaire. It also had a statistically significant small positive correlation with EORTC QLQ C15 PAL symptom scores, such as dyspnoea, insomnia, constipation, nausea, fatigue and pain. The median caregiver burden score was 39, showing higher burden as compared to previous studies. Caregivers who were spouses of the patient, illiterate, homemakers, with low-income families reported higher burden.
A high perceived caregiving burden is associated with impaired QOL in family caregivers of advanced cancer patients on best supportive care. Multiple patient related factors and demographic factors tend to affect burden of the caregiver.
在印度，患有晚期癌症且疾病无法治愈的患者通常由其家人照顾。目前缺乏关于印度照顾者感知负担、患者及照顾者生活质量（QOL）的数据，尤其是在未接受任何肿瘤治疗的癌症患者中。
我们对220例接受最佳支持治疗的晚期癌症患者及其各自的220名家庭照顾者进行了一项横断面研究。我们的主要目的是确定照顾者负担与生活质量之间的相关性。在获得患者和照顾者的知情同意后，我们在本机构姑息治疗诊所的常规随访期间，通过一次询问，使用欧洲癌症研究与治疗组织（EORTC）生活质量问卷核心15项姑息治疗（QLQ C15PAL）问卷评估患者的生活质量，使用Zarit负担访谈评估照顾者负担，使用世界卫生组织生活质量简表（WHO QOL BREF）问卷评估照顾者的生活质量。
我们注意到，通过Zarit负担访谈（ZBI）评估的照顾者负担与世界卫生组织生活质量简表问卷的心理领域（r = -0.302，P < 0.01）、社会领域（r = -0.498，P < 0.01）和环境领域（r = -0.396，P < 0.01）之间存在统计学显著的负（斯皮尔曼）相关性。ZBI总分评估的照顾负担与使用EORTC QLQ C15 PAL问卷从患者评估的身体功能（r = -0.37，P < 0.01）、情感功能（r = -0.435，P < 0.01）和总体生活质量评分（r = -0.499，P < 0.01）之间存在统计学显著的负相关性。它与EORTC QLQ C15 PAL症状评分，如呼吸困难、失眠、便秘、恶心、疲劳和疼痛，也存在统计学显著的小正相关性。照顾者负担评分中位数为39，与先前研究相比显示出更高的负担。患者的配偶、文盲、家庭主妇、低收入家庭的照顾者报告的负担更高。
在接受最佳支持治疗的晚期癌症患者的家庭照顾者中，较高的照顾负担感知与生活质量受损相关。多种患者相关因素和人口统计学因素往往会影响照顾者的负担。
