PURPOSETo understand the preferences and attitudes of patients and family caregivers on disclosure of cancer diagnosis and prognosis in an Indian setting.METHODSOverall, 250 adult patients with cancer and 250 family caregivers attending the outpatients of a tertiary cancer hospital for the first time were recruited purposively. The mean ages of patients and caregivers were 49.9 years (range, 23-80 years) and 37.9 years (range, 19-67 years), respectively. Separately, they completed prevalidated, close-ended preference questions and were interviewed for open-ended attitude questions.RESULTSA total of 250 adult patients (response rate, 47.17% overall, 73.2% in men, and 26.8% in women) and 250 family caregivers (response rate, 40.65% overall, 84.0% in men, and 16.0% in women) participated. Significant differences were observed in the preference to full disclosure of the name of illness between patients (81.2%) and caregivers (34.0%) and with the expected length of survival between patients (72.8%) and caregivers (8.8%; P < .001). The patients felt that knowing a diagnosis and prognosis may help them be prepared, plan additional treatment, anticipate complications, and plan for future and family. The caregivers felt that patients knowing a diagnosis and prognosis may negatively affect the future course of illness and cause patients to experience stress, depression, loss of hope, and confidence.CONCLUSIONPatients with cancer preferred full disclosure of their diagnoses and prognoses, whereas the family caregivers preferred nondisclosure of the same to their patients. This novel information obtained through a large study with varied participants from different parts of the country will help formulate communication strategies for cancer care.
Context: Frequency of passive decisional control preferences (DCPs) has been variably reported but is generally higher among patients living in developing countries. Objectives: This prospective cross-sectional study aimed to determine the frequency of passive DCP among patients with advanced cancer in a tertiary cancer center in India and to identify its association with their sociodemographic and clinical characteristics. Methods: Patients with advanced cancer referred to palliative care (between March and August 2016) underwent assessment of DCP using validated tools including Control Preference Scale, Satisfaction with Decision Scale, and understanding of illness questionnaire. Information regarding patient characteristics including age, gender, education, marital status, employment, Karnofsky Performance Status Scale (KPS), cancer stage and type, and religion were also collected. Descriptive statistics and logistic regression analyses were performed. Results: Median age 48 years, Karnofsky 90, and 55.3% were men. Shared, active (patient prefers to make decision by his or her own), and passive DCP were 20.7%, 26.7%, and 52.7%, respectively (n ¼ 150). A total of 51.3% were satisfied by the way the actual decisions were made. Passive DCP did not vary across regions. Multivariate analysis shows that the active DCP was significantly associated with better KPS (exp B 1.07 [1.01-1.15], P ¼ .03). Conclusions: There are significant differences in DCP with KPS. Patients report a high level of satisfaction with their treatment decision-making process, though they have a poor understanding of their prognosis and goals of care and understand their treatment to be of curative intent. Individualized understanding of DCP and focus on illness understanding may be important for quality care and patient satisfaction outcomes.
Purpose:To audit referral practices of pediatric oncologists referred to specialist pediatric palliative care services.Patients and Methods:Retrospective review of medical case records of pediatric palliative care patients over a period of 5 years from January 1, 2010 to December 31, 2014. Descriptive summaries of demographic, clinical variables, and patient circumstances at the time of referral and during end-of-life care were examined.Results:A total of 1135 patients were referred from pediatric oncology with a gradual increasing trend over 5 years. About 84.6% consultations took place in the outpatient setting. In 97.9% of the cases, parents were the primary caregivers. Availability of specialist pediatric health-care services at local places was available in 21.2% cases and 48% families earned <5000 INR (approximately 73 USD) in a month. Around 28.3% of the referrals were from leukemia clinic and maximum references were late with 72.4% patients having advanced disease at presentation. 30.3% of the referrals were made for counseling and communication and 54.2% had high symptom burden during referral. After referral, 21.2% patients continued with oral metronomic chemotherapy and 10.5% were referred back to oncology services for palliative radiotherapy. Only 4.9% patients had more than 2 follow-ups. 90.8% of the patients were cared for at home in the last days of illness by local general practitioners. 70.6% of the deaths were anticipated.Conclusions:Oncologists referred patients late in the course of disease trajectory. Most of the referrals were made for counseling and communication, but many patients had high symptom burden during referral.
Novel corona virus disease 2019 (COVID-19) is an ongoing pandemic that has impacted the entire world. The Indian government has responded strongly and very stringently to the crisis, through a nationwide lockdown. The health-care (HC) systems in the country are striving hard to maintain equitable care across illness spectra, while responding the emergencies imposed by the COVID-19 crisis. Under these circumstances, guidelines for managing several diseases including that for cancer care have been modified. As modified guidelines for cancer care have their focus on disease management, cancer pain management and maintaining continuity of care for patients with advanced progressive disease have taken a backseat in the available cancer care guidelines. This article describes the challenges, approaches to solutions with evidence-based practices that can be utilized to ensure competent management of cancer pain during the COVID-19 pandemic in India. It provides an overview of adapting to telehealth consultations for identification, evaluation and management of cancer pain, safe and rational use of analgesics and adjuvant drugs, recognizing and responding to holistic care needs and addressing the total pain, ensuring continuity of pain management, and strategies when complying with narcotic drug regulations, while ensuring safety of patients and HC providers.
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