Impact of Community Palliative Care on Quality of Life among Cancer Patients in Bangladesh.

Cancer, a leading cause of mortality worldwide, is often diagnosed at late stages in low- and middle-income countries, resulting in preventable suffering. When added to standard oncological care, palliative care may improve the quality of life (QOL) of these patients. A longitudinal observational study was conducted from January 2020 to December 2021. Thirty-nine cancer patients were enrolled in the Compassionate Narayanganj community palliative care group (NPC), where they received comprehensive palliative care in addition to oncological care. Thirty-one patients from the Dept. of Oncology (DO) at BSMMU received standard oncological care. In contrast to the DO group, the NPC group had a higher percentage of female patients, was older, and had slightly higher levels of education. At 10 to 14 weeks follow-up, a significant improvement in overall QOL was observed in the NPC group (p = 0.007), as well as in the psychological (p = 0.003), social (p = 0.002), and environmental domains (p = 0.15). Among the secondary outcomes, the palliative care group had reduced disability and neuropathic pain scores. Additionally, there were statistically significant reductions in pain, drowsiness, and shortness of breath, as well as an improvement in general wellbeing, based on the results of the Edmonton Symptom Assessment Scale-Revised. At the community level in Bangladesh, increased access to palliative care may improve cancer patient outcomes such as QOL and symptom burden.

Satisfaction with care provided by home-based palliative care service to the cancer patients in Dhaka City of Bangladesh: A cross-sectional study.

Background and Aims: Patient satisfaction is an important quality indicator of health care service. The concept of home-based palliative care has been recently introduced in Bangladesh, but the patients' satisfaction with this care remained unexplored. This study aimed to assess the satisfaction of the cancer patients receiving this care. Methods: This cross-sectional study was conducted among 51 surviving cancer patients above 18 years of age registered under the home-based care service of the Department of Palliative Medicine, Bangabandhu Sheikh Mujib Medical University, Dhaka, Bangladesh. Data were collected by face-to-face interviews using a structured questionnaire based on the FAMCARE P16 questionnaire from February to March 2019. Descriptive analysis was done for the sociodemographic and satisfaction-related indicators. A correlation matrix was done to see the correlation among the satisfaction indicators. Result: The majority of the patients (88.2%) were satisfied with the service provided by the home care team. Most (76.5%) of the patients were women, and the mean age was 56.25 ± 14.8 years. The median duration of getting home-based care was 4 months. Main satisfaction indicators were-assessment of physical symptoms (70.6%), providing information about pain management (70.6%), the inclusion of the family in decision making (76.5%), coordination of care between the members of the home care team (84.3%) and availability of doctors, nurses and palliative care assistants (74.5%). A high correlation was observed between satisfaction regarding the care of physical symptoms and provision of information (R = 0.814, p < 0.001). Also, satisfaction regarding the provision of information and support provided to the family is highly correlated (R = 0.722, p < 0.001). Conclusion: Despite the limitations, the overall satisfaction level of the patients regarding home-based palliative care services in Bangladesh is very high. Home-based palliative can be a solution to provide palliative care to patients who are unable to access institution-based care and improve their quality of life.

Depression, anxiety, and performance status among the women with metastatic breast cancer receiving palliative care in Bangladesh: A cross sectional study.

Background and Aims: Advanced breast cancer patients suffer from various psychological issues including depression and anxiety. This study aims to explore these psychological issues and their relationship with the performance status. Methods: This cross-sectional study was conducted among 95 patients with metastatic breast cancer attending the Department of Palliative Medicine, Bangabandhu Sheikh Mujib Medical University, Bangladesh from April 2021 to September 2021. Data was collected by face-to-face interview using a structured questionnaire along with Hospital Depression and Anxiety Scale. The performance status of the patients was determined by the Eastern Cooperative Oncology Group (ECOG) performance scale. The association between different variables were assessed by χ 2 test and Fisher Exact test. Result: Mean age of the respondents was 48.9 ± 9.9 years. Most of them were married (94.7%), muslim (92.6%) and homemakers (82.1%). More than half (52.6%) of the patients were evaluated having ECOG performance status grade II. Four out of ten  (44.2%) patients had moderate to severely anxiety, and almost one-third (36.9%) patients were suffering from moderate to severe depression. The patients with high educational status were found to have less depression. In addition, patients faring better on ECOG performance scale (Grade 0 to I) had significantly (p < 0.05) less depression and anxiety. Conclusion: Depression and anxiety are one of the major psychological sufferings among the women with metastatic breast cancers. All women suffering from breast cancer should be routinely screened and assessed for phychological distress and ensure early intervention.

Quality of life of the cancer patients receiving home-based palliative care in Dhaka city of Bangladesh.

BACKGROUND: The concept of home-based palliative care has been recently introduced in Bangladesh, but the patients' quality of life remains unexplored. This study aimed to assess the quality of life and its determinants of the cancer patients receiving home-based palliative care in Dhaka, Bangladesh. METHODS: This cross-sectional study was conducted among 51 surviving cancer patients above 18 years registered under the home-based care service of the Department of Palliative Medicine, Bangabandhu Sheikh Mujib Medical University, Dhaka, Bangladesh. Data was collected by face-to-face interview using a structured questionnaire based on the "Functional Assessment of Chronic Illness Therapy-Palliative (FACIT-Pal)" questionnaire from February to March 2019. Descriptive analysis was done for the socio-demographic, disease and treatment related factors. Mann-Whiteney U test, Kruskal-Wallis H test, and logistic regression were done to determine the relationships between independent variables and QoL. RESULT: The majority of the patients (76.5%) were women. The mean age of the respondents was 56.2±4.8 years. Common primary sites of cancer were breast (39.2%), gastrointestinal (17.6%), and genitourinary system (23.5%). The median duration of getting home-based care was four months. The most prevalent problems were pain, sadness, feeling ill, and lack of satisfaction regarding sexual life. The majority (88.2%) of the patients had an average and above-average quality of life. Although, 92.1%patients had average or above-average social and emotional wellbeing, 60.8% had below-average physical wellbeing. Patients' marital status, belief about disease prognosis, and duration of getting home-based care had a positive influence, and age negatively influenced the quality of life. CONCLUSION: The majority of the patients receiving home-based palliative care in Dhaka city had average or above-average quality of life. However, these patients had better social and emotional wellbeing, but the physical wellbeing and symptom control were below-average according to the individual domain.

Solidarity and suffering: enrolled terminal patients' and their caregiver's experiences of the community-based palliative care programme in an urban slum of Bangladesh.

Background: Palliative care has been recognised as a global health challenge. Although accessibility has increased, there is little recognition of the importance of palliative care in low- and middle-income countries. In Bangladesh, institutional palliative care is not accessible due to a lack of awareness, financial constraints, and fewer facilities. Hence, there needs to be a better understanding of providing and improving existing community-based palliative care. For this, it is essential to understand the experiences of patients and their caregivers who require palliative care. With this aim, this study explores the experiences of palliative patients and their primary caregivers enrolled in a palliative care project, 'Momotamoy Korail' run by Bangabandhu Sheikh Mujib Medical University in an urban slum, Dhaka. Methods: This research is a part of a larger qualitative study that relied on a focused ethnographic approach. For this study, we used 19 in-depth interviews following a semi-structured guideline with the palliative care patients and their primary caregivers enrolled in the community-based palliative care project. Results: Mostly women (wives and daughters-in-law) are the primary caregivers in a family. Therefore, male patients are more likely to receive family care than female patients. Both male and female patients expressed the desire for a death free of suffering. All patients felt lonely and socially abandoned with a perception of being a burden to their families. Despite the diversity in physical, social, psychological, and financial suffering, patients and caregivers were optimistic towards a healthy life free of illness. All respondents were satisfied with the care they received from the palliative care assistants, which provide them hope and dignity for life. Conclusion: Experiences of the respondents can improve the quality of the existing community-based palliative care services and add great value to the discipline of palliative care in public health. The findings provided an understanding of what would be required to extend community-based palliative care to other healthcare settings. More awareness through community mobilisation about the need for and benefit of palliative care is needed to make it sustainable.

Program evaluation: improving the quality of life of older people in an urban slum in Bangladesh.

AIMS: The study aimed to explore the quality and impact of care provided through an innovative palliative care project to improve the quality of life of older people in an urban informal settlement in Bangladesh. METHODS: Center for Palliative Care (CPC) at Bangabandhu Sheikh Mujib Medical University (BSMMU), Dhaka, in collaboration with the Worldwide Hospice Palliative Care Alliance (WHPCA) has been operating this community project since 2015. A cross-sectional observational design was used in this program evaluation study. A total of 594 people received services including 227 patients (Group-1) receiving regular and intensive palliative care and 367 patients with less intense needs (Group-2) receiving relatively less support based on need. In addition, current group-1 patients (total 114) and a matched cohort of 58 group-2 patients were interviewed with an experience of care survey questionnaire. Baseline and demographic data were presented in tables. The Z-test was used to measure mean statistical differences between two groups. RESULTS: Multiple comorbidities were common. Pain was the most frequently noted physical symptom along with anxiety, sadness, and depression as common psychological concerns. Compassionate palliative care for the older people had significant (p < 0.05) impact on psycho-social and spiritual care, caregiver training, responding to emergencies, and reduction of out of pocket healthcare expenditure among the intensive intervention group. CONCLUSION: Using a community-based approach following this model may play a significant part in expansion of palliative care throughout Bangladesh to meet the huge need and scarcity of such services.

Physicians' knowledge about palliative care in Bangladesh: A cross-sectional study using digital social media platforms.

INTRODUCTION: Palliative care is still a new concept in many developing countries like Bangladesh. Basic knowledge about palliative care is needed for all physicians to identify and provide this care. This study aims to assess the preliminary knowledge level and the misconceptions about this field among physicians. METHODS: This cross-sectional study was conducted among 479 physicians using a self-administered structured questionnaire adapted from Palliative Care Knowledge Scale (PaCKs) on various digital social media platforms from December 2019 to February 2020. Chi-square, Fisher's extract test, and the Monte Carlo extract test was done to compare the knowledge level with the study subjects' demographic variables. RESULTS: An almost equal number of physicians of both genders from four major specialties and their allied branches took part in the study (response rate 23.9%). The majority (71%) of the respondents had an average to an excellent level of knowledge about palliative care, with a median score of 11.0. Although most physicians had average knowledge about the primary goals and general concepts of palliative care, misconceptions are highly prevalent. The commonly present misconceptions were that palliative care discourages patients from consulting other specialties (88.9%), refrains them from taking curative treatments (83.1%), and this care is only for older adults (74.5%), cancer patients (63%), and the last six months of life (56.4%). Age, educational qualifications, and specialties had significant relationships (P<0.05) with the level of knowledge. CONCLUSION: Despite having average or above knowledge about palliative care, the physicians' prevailing misconceptions act as a barrier to recognizing the need among the target populations. So, proper education and awareness among the physicians are necessary to cross this field's barrier and development.

Providing Home-Based Support for Children with Chronic Conditions in an Urban Slum: Experiences from a Community-Based Palliative Care Program in Bangladesh.

We describe the palliative care needs of children with chronic conditions and their caregivers in an urban slum in Bangladesh. In this cross-sectional study, we interviewed 25 caregivers whose children receive support from a community-based program lead by community health workers, that provides medication, medical supplies, food, caregiver training, and psychological support free of charge. The chronic conditions of children in the program included cerebral palsy (80%), congenital heart disease (8%), neurodegenerative conditions (4%), cancer (4%), and intellectual disabilities (4%). Common symptoms included cough or breathing problems (64%), fever (56%), and pain (56%). Most caregivers (96%) reported they were unable to do any paid work due to their child's needs and in all families, the child's condition had a significant impact on their financial situation. Community-based palliative care programs can be developed to support children with chronic conditions who may not access care from acute care facilities.

Cluster Analysis of Symptoms of Bangladeshi Women with Breast Cancer.

BACKGROUND: Breast cancer (BC) patients may experience multiple symptoms due to the disease itself, cancer treatment or combination of both. AIM: The aim of the present study was to express multiple symptoms experienced by the patients with BC as clusters. METHODS: This was a retrospective study. We examined symptom profiles of 120 patients with BC who attended the Centre for Palliative Care, Bangabandhu Sheikh Mujib Medical University in Dhaka, Bangladesh, from January 2009 to December 2013. We included all case sheets of BC patients, which had documentation of needed information. Following symptoms were analyzed: pain, nausea, loss of appetite, constipation, weakness, cough, breathlessness, sleeplessness, lymphedema, sadness, anxiety, and depression. Hierarchical cluster analysis was used to identify the natural groupings within the set. RESULTS: We could identify three clusters, namely (1) "neuropsychiatric," (2) "gastro-respiratory," and (3) "miscellaneous" symptom clusters. The symptoms in cluster 2 comprised of cough, breathlessness, nausea, and constipation. Cluster 1 was characterized by pain, depression, anxiety, weakness, sleeplessness, and loss of appetite. Cluster 2 was comprised of cough, breathlessness, nausea, and constipation. Cluster 3 consisted of two symptoms lymphedema and sadness. The results revealed that the multiple symptoms of patients with BC experienced had been clustered together. Neuropsychiatric symptoms and weakness formed a significant strong relationship with each other. CONCLUSION: Knowledge obtained from this study could be beneficial for better understanding, assessment, and management of symptom clusters in women with BC. It may also help patients to plan ahead for them to seek management of concurrent symptoms to improve their quality of life.

Creating a sustainable, participatory palliative care programme in an urban slum in Dhaka, Bangladesh.

The Centre for Palliative Care, based at the only medical university [Bangabandhu Sheikh Mujib Medical University (BSMMU)] in Dhaka, Bangladesh, in collaboration with Worldwide Hospice Palliative Care Alliance, piloted a one-year project focussed on improving the quality of life of 100 older people and their families in two slum settings in Dhaka. This project was developed following the identification of significant palliative care needs of older people in the slum settings. In addition, the project was formed in response to the absence of programmes delivering palliative care to the poorest and most marginalised in poor urban settings, in a sustainable manner within the context of the low development of palliative care and the human and financial resource limitations in Bangladesh. The programme was developed using a participatory approach which focussed on engaging members of the community in the delivery of the project through the identification and training of 8 palliative care assistants from the slum setting itself, who delivered basic care supported by health professionals, the development of palliative care activists within the community and the engagement of the slum community leadership. The impact of the project showed improved quality of life for the target population and the potential for further development as a sustainable, community owned model over a further 2 years, which could be translated into other urban settings. This presentation will highlight lessons learned from the development and implementation of the project, and findings from the independent evaluation completed in December 2016, overseen by Glasgow University. The presentation will outline the successes and challenges of developing a participatory, community owned palliative care service within a slum in Dhaka, Bangladesh for older people and their families.

Symptom Prevalence in Patients with Advanced, Incurable Illness in Bangladesh.

CONTEXT: There is a significant need for palliative care for patients living in low- and middle-income countries. The presence and intensity of physical symptoms is a major factor influencing the suffering of patients at the end of life. OBJECTIVES: The primary aim of this study was to determine the prevalence and characteristics of common physical symptoms experienced by patients with advanced, incurable illness in a developing country. METHOD: This study used semi-structured interviews in patients with advanced cancer or HIV/AIDS in Bangladesh. RESULTS: Pain was the most common symptom (70.6%) and was frequently reported to be severe (62.6%). Very few patients received strong opioids to treat their pain (13.7%). Other frequent symptoms included loss of appetite (23.5%) and fever (19.9%). The average number of physical symptoms reported was 3 (range: 0-23). The majority of patients rated their most recent symptom (excluding pain) as severe (64.3%), with 35.8% continuing to have severe symptom intensity despite treatment. CONCLUSIONS: This study reveals the significant burden of symptoms, and the associated suffering for patients living with incurable illness, in a developing country. Very few patients received strong opioids, despite frequently having severe pain. Frequently, the treatments that patients received did not alleviate their symptoms. Palliative care is vital for the relief of suffering for patients with advanced and incurable diseases, especially in low- and middle-income countries where access to curative treatments may be limited and patients often present to medical personnel when their illness is in an advanced stage or incurable.