Objectives: This study aimed to identify gaps in palliative care (PC) provision across the National Cancer Grid (NCG) centres in India.
Methods: We performed a cross-sectional validated web-based survey on 102 NCG cancer centres (Nov ’17 to April ’18). The survey questionnaire had seven sections collecting data relating to the capacity to provide cancer care and PC, drug availability for pain and symptom control, education, advocacy, and quality assurance activities for PC.
Results: Eighty-nine NCG centres responded for this study—72.5% of centres had doctors with generalist PC training, whereas 34.1% of centres had full-time PC physicians; 53.8% had nurses with 6 weeks of PC training; 68.1% of the centres have an outpatient PC and 66.3% have the facility to provide inpatient PC; 38.5% of centres offer home-based PC services; 44% of the centres make a hospice referral and 68.1% of the centres offer concurrent cancer therapy alongside PC. Among the centres, 84.3% have a licence to procure, store and dispense opioids, but only 77.5% have an uninterrupted supply of oral morphine for patients; 61.5% centres have no dedicated funds for PC, 23.1% centres have no support from hospital administration, staff shortage—69.2% have no social workers, 60.4% have no counsellors and 76.9% have no volunteers. Although end-of-life care is recognised, there is a lack of institutional policy. Very few centres take part in quality control measures.
Conclusions: The majority of the NCG centres have the facilities to provide PC but suffer from poor implementation of existing policies, funding and human resources.
Health care services are being confronted by a daily dilemma of who can receive critical care and who cannot. In a palliative care clinic, this apprehension gets exemplified, as these patients have limited life expectancy. The head and neck region further makes things critical, as it comprises of all the sites through which the SARS-CoV-2 can be transmitted. This document strives to define the ways in which the head and neck cancer services can contribute to better patient care in a triage context. Practical steps suggested are protective equipment use, ensuring access to critical drugs (such as opioids), greater use of telemedicine consultations, discussing advance care plans, and embracing the role of a wider community support.
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 = 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 = .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: This study reports the incidence of distress, the factors associated with distress, and a practical strategy to resolve distress in patients with head and neck cancer who are starting palliative chemotherapy.
METHODS: Adult patients with head and neck cancer planned for palliative chemotherapy underwent distress screening before the start of treatment as part of this single-arm prospective study. Patients who had a distress score > 3 on the National Comprehensive Cancer Network (NCCN) distress thermometer were counseled initially by the clinician. Those who continued to have high distress after the clinician-led counseling were referred to a clinical psychologist and were started on palliative chemotherapy. After counseling, distress was measured again. The relation between baseline distress and compliance was tested using Fisher's exact test.
RESULTS: Two hundred patients were enrolled, and the number of patients with high distress was 89 (44.5% [95% CI, 37.8% to 51.4%]). The number of patients who had a decrease in distress after clinician-led counseling (n = 88) was 52 (59.1% [95% CI, 48.6% to 68.8%]) and after psychologist-led counseling (n = 32) was 24 (75.0% [95% CI, 57.6% to 72.2%]; P = .136). Compliance rates did not differ between the patients with or without a high level of distress at baseline (74.2% v 77.4%, P = .620).
CONCLUSION: The incidence of baseline distress is high in patients awaiting the start of palliative chemotherapy. It can be resolved in a substantial number of patients using the strategy of clinician-led counseling, with additional referral to a clinical psychologist as required. Patients with a greater number of emotional problems usually require psychologist-led counseling.
Context: Dyspnea is a subjective, multidimensional experience of breathing discomfort, commonly seen in patients with advanced cancer. To find the impact of dyspnea on the quality of life in this population, it is important to understand the prevalence and factors influencing dyspnea.
Aims: This study aimed to determine the prevalence, intensity, and factors influencing dyspnea in advanced cancer and determine its impact on overall quality of life.
Settings and Design: This was a prospective cross-sectional study. The prevalence of dyspnea and its impact on quality of life was determined in 500 patients registered with palliative medicine outpatient department.
Subjects and Methods: The patients were asked to fill a set of questionnaires, which included the Cancer Dyspnea Scale (translated and validated Hindi and Marathi versions), visual analog scale for dyspnea and EORTC QLQ C 15 PAL. Details of demographics, symptomatology, and medical data were collected from the case record sheets of the patients.
Statistical Analysis Used: Descriptive statistics, univariate, and multiple regression analysis were used to calculate the results.
Results: About 44.37% of the patients experienced dyspnea. Dyspnea increased with worsening anxiety, depression, fatigue, appetite, well-being, pain, lung involvement by primary or metastatic cancer, performance status, and deteriorating overall quality of life and emotional wellbeing.
Conclusions: The prevalence of dyspnea in advanced cancer patients is as high as 44.37% and has a negative impact on their overall quality of life.
CONTEXT: Assessment of dyspnea in patients with advanced cancer is challenging. Cancer Dyspnea Scale (CDS) is a multidimensional scale developed for measurement of dyspnea. It is available only in Japanese, English and Swedish and has not been validated before in the Indian languages.
OBJECTIVE: To describe the process of validation and reliability testing of CDS in Indian advanced cancer patients.
METHODS: This is a prospective observational study conducted in the palliative care clinic of a tertiary cancer center in Mumbai. The English version of CDS was translated into Indian languages- Hindi (CDS-H) and Marathi (CDS-M). 120 newly registered eligible patients (60 for CDS-H and 60 for CDS-M) were enrolled into the study consecutively. They were asked to fill CDS (translated version) and Visual Analogue Scale for dyspnea. Only baseline measures were used.
RESULTS: Validity was separately analyzed for CDS-H and CDS-M. The results showed good construct validity between CDS-H and CDS-M. Inter-subscale correlation was done by calculating the Pearson's correlation co-efficient (mean r= .64 and .764 for CDS-H and CDS-M respectively). Convergent validity was calculated by computing the correlation of each factor with VAS-D scores and was found statistically significant (p<.001; average r ranging from .706 to .714). Reliability of the scale was determined by its internal consistency (Cronbach's Alpha co-efficient ranging from .716 to .879).
CONCLUSION: This study demonstrates that CDS-H and CDS-M are valid and reliable multidimensional scales; which can be used to assess dyspnea in patients with advanced cancer.
Background: Fatigue is one of the most common symptoms found in patients with advanced cancer. There is interplay between fatigue and other symptoms.
Aim: To examine the factors associated with fatigue in patients with advanced cancer and the impact of symptom control on improvement in fatigue.
Design: Prospective observational study. Patients were assessed for symptom burden using the Edmonton Symptom Assessment Scale (ESAS). All the study patients received standard palliative care. They were followed up 15–30 days after the first consult. Analysis of the results was performed using descriptive statistics, correlation, multiple linear regressions and logistic regression of fatigue with other variables. CTRI registration number REF/2014/02/006537.
Setting/participants: Palliative Care clinic of a tertiary cancer care hospital, from January to June 2014. Patients had advanced cancer, were registered with the clinic, had ECOG <= 3, and ESAS fatigue score >= 1.
Results: 500 subjects enrolled at baseline. 402 completed the planned follow-up (median age, 52 years; 51.6% male). Significant improvement in the fatigue score was observed (p < 0.001) at follow-up. Haemoglobin, albumin levels, type of cancer, sites of metastasis, ECOG score, body weight, all items on ESAS scale (except drowsiness) were found to be significantly associated with fatigue at baseline (p < 0.05). The logistic regression model showed that improvement in haemoglobin and albumin levels and in severity of pain and dyspnoea, significantly improved fatigue scores at follow up.
Conclusions: Fatigue improved with the standard palliative care delivered at our specialty Palliative Care clinic. Certain clinical, biochemical factors and symptoms were associated with fatigue severity at baseline, improvement of which lead to lesser fatigue at follow up.