Ongoing research

Abstract

Telehealth is being used increasingly in providing care to patients in the community setting. Most palliative care patients indicate that they would prefer to be cared for, and to die, at home. Telehealth represents one avenue for investigation, offering more regular continuous remote monitoring to highlight changing performance status, and immediate access to resources and information for patients and families.

Method:

This study was a prospective cohort study of a telehealth-based intervention for community-based patients of a specialist palliative care service living in Dhaka, Bangladesh. Data of 50 patients were analyzed who used Telehealth for home palliative care from July 2024 to September 2024.

Result:

All of our patients lived in Dhaka metropolitan area except 2 patients. Majority of patent’s age were over 60 years. Among patients 53% were females and 46 % were males. All patients were married. Majority of our study patients suffering from cancer 60% and age-related problems patient 25%, cardiac problem 7%, renal problem 3% and others 5%. There were 20% used only telephony service, 80% patients used mobile apps. Phone call (80%) is more than face to face doctor visit. Those who died during this study 60% of them died at home, 40% died in the hospital. The most benefitted part of the home telehealth care was reducing continue nursing support (60%) and reduce economic burden (80%).

Conclusion:

This study has shown that palliative care patients and their careers living in the community were able to use telehealth app trial involving remote monitoring of symptoms. The telehealth model offers new ways of supporting care at the end of life in the community and further applications of these approaches should be investigated.

Introduction: Childhood cancer is a small fraction of the global cancer burden. But it is deeply distressing for the children and their families. In developing countries childhood cancer is diagnosed too late for appropriate protocol based therapy. Side by side most parents cannot afford treatment though cancer detected at proper time. There are another group of patients who fail to respond to curative treatment and come to hospital at terminal stage. Ultimately all of the above mentioned patients experienced their last days without hope, severe pain with multiple symptoms related with disease. But unfortunately palliative care is not identified as a basic need. While palliative care for adults has established towards recognition and improvement, pediatric palliative care has been still in the backseat. In our country there is only one palliative set up especially for children cancer patients.

Objective: To inform about present status of ASHIC Palliative Care Unit as well as Bangladesh and assess clinical profile and treatment modalities needed for symptom management in pediatric palliative patients.

Method: It is a retrospective, observational study among 540 patients. Duration of the study May 2006 to August 2013. Place of the study is ASHIC palliative care unit, Dhaka. Study group is   less than18 years of both sexes and children with cancer of palliative stage. Data collected from patients register book and bed head tickets. Frequency of distribution express in percentage.

Results: Since 20.05.2006 to 31.08.13 total 540 new patients were admitted. Out of 540 patients 348 were boys (64.44%) and remaining 35.56% were girls. Commonest age distribution is between 0 to <5 years (41%) and next common age group was more than >5 to 10 years (31%), 26% is >10 to 15 years and only two cases were more than 15 years age group. More than 80% of the patient’s residences are outside the Dhaka city. Patients were mainly referred from different government hospitals and private hospitals (NICRH, BSMMU, DMCH, NIO&H, Islamia Eye Hospital , BICH & Dhaka Shishu Hospital.) Majority of patients were admitted with fever, pain, moderate to severe pallor, bleeding manifestations, respiratory distress and vomiting. Most common malignancy observed was metastatic/ advanced retinoblastoma 25% and acute lymphoblastic leukemia was in second position 15%. Non-Hodgkin’s lymphoma was 11%. Children came with AML and recurrence case of Ewing’s Sarcoma represented the respectively 5% and 6%. Hodgkin’s disease relapse was 4%, osteosarcoma with lung metastasis accounted 3%. Advanced case of Rhabdomyosarcoma was 4%, germcell tumour 3% and Wilm’s tumour with lung metastasis 4%. Metastatic neuroblastoma and Naspharyngeal carcinoma respectively 3% and 1%.

Conclusion: The concept of pediatric palliative care in Bangladesh is limited. So establishment of pediatric palliative care unit at government hospitals will reduce sufferings of dying children with cancer and their parents. For optimum palliation to children cancer patients – it is the time to establish a strong network between the organizations and related disciplines who are working for cancer patients of all age group.

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Abstract

Background: Childhood cancer, though rare, poses significant challenges for families, especially in low-resource settings. This study aims to explore the patterns of childhood cancer and the associated family burden among children attending hospitals in Dhaka City.

Methods: A cross-sectional study was conducted from July to December 2024, involving 93 children aged 0-14 years from Dhaka Medical College Hospital, National Institute of Cancer Research and Hospital, and ASHIC Foundation. Data were collected through face-to-face interviews using a purposive sampling technique. Statistical analyses were performed to identify significant associations.

Results: The majority (71%) of participants were inpatients, with 87.1% residing outside Dhaka district. The mean age was 5.95 years (SD ± 0.825). A significant association was found between the mother’s educational level and childhood cancer (χ² = 53.962, p = 0.001). Most fathers were farmers (43.0%), and the mean monthly family income was 10,838.71 taka (SD ± 4,741.790). Housing conditions were predominantly Katcha (55.9%). A family history of cancer was reported in 7.5% of cases. Prior to hospital admission, 80.6% of children were treated by qualified doctors. The most common cancers were acute lymphoblastic leukemia (38.7%) and retinoblastoma (30.1%). The average treatment cost for ALL was 16,944.44 taka. Financial burdens were significant, with 75.3% of families relying on external financial sources.

Conclusions: The study highlights the diverse patterns of childhood cancer and the substantial financial burden on families, particularly those with lower incomes. Enhanced awareness and healthcare access are crucial for early detection and treatment.

Background: Palliative care is a developing branch of healthcare that deals with the terminally-ill, incurably-ill and chronically bed-ridden people. A large percentage of the patients who needed palliative care are cancer patients in extreme pain; some of them are in the terminal stage. Millions of others suffering from paraplegia, acute renal and respiratory problems, and many other incurable illnesses also benefited from palliative care. According to Bangladesh Cancer Society (2015) the economic burden of a new adult cancer patients was 250000/yr., and the total cancer burden was 10, 00000/yr. This was an institutional based statistics, the actual picture probably far away from it as many patients might have taken services from other informal sources, like homeopath doctors, kobiraj (traditional healer) and local doctors. The majority of the patients could not reach to final diagnosis or avail treatment facilities. According to the oncologists and referral hospitals approximately 75% of the cancer patients who were admitted to receive treatment were incurable and they received treatment in palliative setting. 30-40% of these patients were in end days of life with substantial amount of sufferings and their admissions were refused by the hospital. The hospitals in Bangladesh are overloaded with patients of acute illness. Under the circumstances home care became an important alternative for patients who needed palliative care. Through palliative home care, we could reduce the frequency readmission in hospital. This would reduce the economic burden of the patients’ families as well.

Objectives: To evaluate the patterns of diseases, terminal symptoms, duration of the home care, place of death and economic benefit of the patient.

Method:  This is a retrospective study based on patient’s record. The records of total 40 patients were reviewed. Data of 28 patients were analyzed who needed palliative care at home July 2015 to July 2016.  Places of the study were patients’ home at Dhaka, Bangladesh. These patients received home care by Hospice Bangladesh, the first hospice home care in Bangladesh. The study population, both males and females are at incurable stage of their respective disease. Data was collected from patients’ register book and bed head tickets. Frequency of distributions are expressed in percentage.

Result: All of our patients lived in Dhaka metropolitan area. Majority of patients’ age were over 60 years. Among the patients’ 53% were females and 46% males. All patients were married except for one who was a child. All patients were Muslim. Majority of our study patients were suffering from cancer 50%. Among other diseases – neurological problem was found in 25% of the patients, cardiovascular problem was found in 7% patients and renal diseases were found in 17% patients. Prior receiving the home care majority of them received conservative treatment 50%, 32% patients received chemotherapy and 3% patients had surgery. However 14% did not receive any treatment. From beginning of the home care 39% patients were suffering from pain and breathlessness. Other health problems were hypotension (17%) and cough (3%). This patients were referred to palliative home care by doctors (35%), patient’s attendants (32%) and general people in society (32%). The longest duration of palliative home care was 350 days. Those who died during the study period, 46% of them died at home and 21% in the hospital 21%.  32% of our study patients were alive. The pain managed at home effectively (80%) of those patioents.The most benefited part of palliative home care was reducing the hospital readmission (80%) and reduce the economic burden (60%).

Conclusion: The evolution and growth of palliative care service and hospice should be from the combined effort of both the public and the private sectors. Without community involvement, establishment of this sector is not possible. The fact should not be overlooked that facilities of palliative care become fully available in the future, a big proportion of the total number of patients with incurable, progressive diseases will get benefit from this care.

This cross sectional study was done to determine the “Morbidity Pattern of the patients attending medical wards of a Tertiary Care Teaching Hospital” Data was collected from admitted patients of Dhaka Medical College Hospital. Purposive sampling technique was used to collect data from 60 respondents, by face to face interview. Study was done between Decembers 01 to 15, 2014.

Their mean age was 41.83 (SD ± 16.481) years. Majority (24%) belonged to 41-50 years age group. About that 60% were male and rest 40 % was female, their marital status showed that, majority (75%) was married, 23% were unmarried and rest 2% were widow. Almost all (96.7%) the respondents were Muslim and rest 3.3 were Hindus. About their occupation, majority 30% were home maker, 15% were unemployed.  The mean monthly family income of the respondents was 11616.67 (SD ± 6011.547). The range of the family income of the respondents was 5000 to 40000 taka per month. Majority 53.3% belonged to nuclear family and rest 46.7% belonged to joint family, majority (88.3%) were non smoker and rest 11.7% are smokers, 13.3% were current tobacco chewer and 86.7% were not current tobacco chewer. Majority has breathlessness (23.3%) and abdominal pain (23.3%).  6.7% had high fever; next swelling (5%), generalized edema (5%), unconsciousness (5%) etc. were chief complaints of the respondents. About 88 % received treatment and rest (11.7%) did not receive any treatment. Among the majority (96.2%) received treatment from physician before they admitted in this hospital. Majority (71.7 %) were referred by GP and rest 28.3% by themselves. majority (78.3 %) had no knowledge about diseases of their age and rest 13% could name some diseases. The morbidity pattern of the patients showed, majority (16.7%) of the responded suffered from pancreatitis, 15% CKD, 13.3% bronchial asthma, 10% CVDs, 6.7% CLD, 5% diabetic, 5% anemia etc.    

Background: Palliative care is a developing branch of healthcare that deals with the terminally-ill, incurably-ill and chronically bed-ridden people. In Bangladesh, more than 90% cancer patients are diagnosed in advanced stage. Among them more than 70% cancer patients have moderate to severe pain. About 98% patients wanted to be cared at home. The incidence of stroke patients is 5-12 per 1000 per year and among them 35% become permanently disabled or depend on care givers. There is no hospital or assisted nursing home in Bangladesh that would provide these patients the treatment and the care they need on a regular basis. The incidence of Cancer in Bangladesh is 200,000 new patients per year. Among them 180,000 patients are at advanced stage of cancer. The prevalence of HIV is less than 1%. Overall 600,000 adult and 29000 children suffering from various non curative diseases need Palliative Care at any time in Bangladesh. However, only less than 1% population currently have access to Palliative care and pain treatment. Considering the economic circumstances and the comfort of being surrounded by the family members’ home care became an important alternative for patients who needed palliative care.

Objectives: To explore approaches that are suitable for home care and discuss payment-based service and charity-based service. The second objective is to analyse the challenges of home care and explore ways to overcome the challenges.

Method:  Two retrospective studies have been conducted to address the objective of the study. Data is based on patient’s record. The study has included two groups of patients. In total of forty (40) patients records are obtained from Hospice Bangladesh. These patients have received palliative home care from Hospice Bangladesh from January 2017 to July 2017and paid for the services they have received. The second group is consisting of Twelve (12) patients who received Palliative home care from July 2016 to July 2017 at free of cost from the charity Aastha Hospice. It is the first charity Hospice home care in Bangladesh. Both groups have males and female’s patients who are at incurable stage of their respective disease. Data is collected from patients’ register book and bed head tickets. We have used descriptive analysis to discuss our findings.

Result: All of our study population who have received services from Hospice Bangladesh have lived in Dhaka metropolitan area. Majority of the patients’ age are over 60 years. Among the patients’ 53% are females and 46% are males. All patients are married except for one who is a child. All patients are Muslim. Half of our study patients (50%) are suffering from cancer. Among other diseases – neurological disorder is found in 25% of the patients, cardiovascular problem is found in 7% patients and renal diseases is found in 17% patients. From the beginning of the home care 39% patients are suffering from pain and breathlessness. Other health problems are hypotension (17%) and cough (3%). These patients are referred to palliative home care by doctors (35%), patient’s attendants (32%), and friends and relatives (32%). Those who have died during the study period, 46% of them died at home and 21% in the hospital.  At present, 32% of our study patients are alive. The medical team of Hospice Bangladesh have managed the pain of the most of the patients (80%) effectively. These patients have received pain management treatment at home. The most benefited part of the palliative home care was reducing the hospital readmission (80%) and reduce the economic burden (60%). However, there are numbers of challenges. Among the challenges shortages of the nurses and economic burden of the care for long term patients are most acute and needed to be addressed soon.

Our analysis of second group of population who have received free hospice services from Aastha Hospice are cancer patients. Among these patients 98% patients have lived in Dhaka. The demographic characteristics indicates among these patients 60% are females, 40% are males, and 10% are children. Majority of these patients (60%) have suffered from pain. Other physical suffering includes, shortness of breath (20%), anorexia (5%) and bed sore (5%). All have died at home. The main challenge that Aastha Hospice medical team have experienced are lack of family care givers, lack of education of the family care giver which made managing emergency situations difficult.

Our preliminary research findings match with the findings of the existing research on pain. The existing research of hospice and palliative care suggest that burden of pain is highest among poor patients. Aastha Hospice patients are poor. A cost-effective service has been designed for them, where they receive pain medicine at free of costs but the nurses and doctors visit is limited. Hence, if the family care givers do not have good understanding of pain management, such as when to give the medicine, the patient suffer from pain despite the pain medicine.  On the contrary, as the Hospice Bangladesh’s patients could pay for 24 hours nurse and frequent doctor visit the pain was managed for majority patients on time successfully.

Conclusion: The evolution and growth of palliative care service and hospice should be from the combined effort of both the public and the private sectors. If we want to ensure universal palliative care for all community involvement is essential. Establishment of this sector and ensuring quality of care at subsidized cost and/or no cost is not possible without involving community. Palliative care in developing countries has a special role during the disease trajectory for both cancer and non-cancer patients and their families. There are a number of challenges, that still make access to palliative home care almost impossible despite the need.

Inadequate relief of cancer pain has become a public health problem in Bangladesh, although it is known that >90% of cancer pain is treatable.  Previous studies have identified that 70-90% of cancer patients suffer from moderate to severe pain, while >90% of health professionals do not have any training in pain management or palliative care in Bangladesh. According to research, among common barriers to effective cancer pain management lack of knowledge, attitude and proper pain assessment remain important. However, educational interventions targeting nurses’ have shown promise.

We design a quasi-experimental study that will be used to investigate whether the implementation of guidelines for systematic daily pain assessments following a theory-based educational intervention will result in an improvement in knowledge and attitude among nurses. This study has a further aim of investigating whether the intervention that targets nurses’ behavior change will improve patients’ perception of pain. The primary outcome will be changes of nurses’ knowledge and attitudes to pain and the secondary outcome will be patient perception regarding pain. The data will be collected at baseline, at 12 weeks and 24 weeks following the intervention.

This quasi-experimental study ultimately aims to improve care as well as quality of life for this group of patients. The results will provide the basis for recommendations for policies regarding nurse education in cancer pain management in Bangladesh.

A total of 120 participants will be selected from all the study locations. Data will be analyzed using the statistical package IBM SPSS version 21 for windows. Ethical clearance for this study will be taken from all relevant institution’s research review committee.