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.
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.
Background: The "Children's Palliative Care Project" was initiated in October 2010 in the Indian state of Maharashtra with a view to improve the quality of life of children with life-limiting conditions. This study evaluates its education and training component through a questionnaire.
Materials and Methods: A cross-sectional survey was carried out pre-/post-training among 258 doctors, nurses, social workers, and counselors at three sites in Maharashtra in March 2015. Descriptive statistics were used for data analysis.
Results: Sixty-two participants responded. Posttraining, doctors and the nurses had a better level of knowledge, skill set, and attitude; whereas social workers and counselors fared better with prevailing care practices. Participants advocated using morphine only when other analgesics had failed and suggested ways for better service delivery of care.
Conclusion: The study gives a rough idea of the prevailing practice of pediatric palliative care among the health-care workers (who participated in the survey) and suggests practical ways to improve it.
Emergencies in palliative care need to be defined by the potential distress that a clinical issue raises for a person. A 58-year-old male with carcinoma vallecula referred for palliative care presented with recurrent syncopal attacks. On examination, a swelling at the left angle of mandible pressing on the carotid sinus was detected. A clinical diagnosis of carotid sinus syndrome was made, which is an exaggerated response to carotid sinus baroreceptor stimulation and results in dizziness or syncope from transient diminished cerebral perfusion. Rapid identification and judicious interventions in time (cardiac consultation, intravenous atropine 0.5 mg, and temporary pacemaker implantation) were able to manage a potentially correctable cardiovascular emergency in his case.
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.
PURPOSE: Early palliative care is beneficial in advanced lung cancer patients. We aimed to assess the feasibility of introducing early palliative care in ambulatory advanced lung cancer patients in an Indian tertiary cancer center.
METHODOLOGY: In a longitudinal, single-arm, and single-center study, fifty patients were recruited and followed up every 3-4 weeks for 6 months, measuring the symptom burden using Edmonton Symptom Assessment Scale (ESAS) and quality of life (QoL) with European Organization for Research and Treatment of Cancer-QoL tools. The primary end point of feasibility was that at least 60% of the patients should complete 50% of the planned palliative care visits and over 50% of the patients should complete QoL questionnaires. Analysis was done using Statistical Package for the Social Sciences version 20.
RESULTS: Twenty-four of fifty patients (48%) completed the planned follow-up visits. All patients completed the questionnaires at baseline and 31 (62%) at their follow-up visits. The patients' main reasons for not following up in the hospital palliative care clinic were logistics and fatigue. Tiredness, pain, and appetite loss were the highest rated symptoms at baseline (ESAS scores 3, 2.2, and 2.1, respectively). Improvement in pain and anxiety scores at follow-up visits 1 and 2 was significant (P < 0.05). Scores on QoL functioning scales improved during the follow-up period.
CONCLUSIONS: We did not meet the feasibility criteria for the introduction of early palliative care in our advanced lung cancer patients in a resource-limited country.
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.