Indian Journal of Palliative Care最新文献

Objectives: Management of malignant gastrointestinal (GI) obstruction presents a significant challenge. Most patients are in a profoundly decompensated state due to underlying malignancy and are not ideal candidates for invasive surgical procedures. Self-expandable metallic stents (SEMSs) are used to provide permanent or temporary patency in all endoscopically accessible stenosis of the GI tract. In this study, it is aimed to analyse the characteristics and the efficacy of patients with malignant stenosis treated with SEMS, in all segments of the GI tract.

Material and methods: The sample consisted of 60 patients who underwent SEMS replacement, between 10 March 2014 and 16 December 2020, to treat malignant-related strictures in the GI tract at the Gastroenterology Department of the Health Sciences University Umraniye Training and Research Hospital. The data of the patients, hospital data processing database and electronic endoscopic database records were retrospectively scanned and recorded. The general characteristics of the patients and the treatment-related features were analysed.

Results: The mean age of patients who were placed SEMS was 69.7 ± 13.7 years. Uncovered (15%, n: 9), fully covered (13.3%, n: 8), or partially covered (71.6%, n: 43) SEMS were successfully placed in all patients. Clinical success in patients with SEMS was 85.7% in the esophagus, 100% in the small intestine and 90.9% in the stomach and colon. About 11.4% migration, 14.2% pain, 11.4% overgrowth and 5.7% ingrowth were detected in patients who had SEMS placed in the oesophagus. Pain was detected in 9.1% and ingrowth in 18.2% of patients who had SEMS placed in the stomach. Pain was detected in 18.2% of the patients who had SEMS placed in the colon and migration was found in 9.1%.

Conclusion: SEMS implant is a minimally invasive effective method in the palliative treatment of malignant strictures of the GI tract.

Objectives: Cancer patients seeking palliative care faces distressing symptoms which affect their quality of life adversely. Patients' lack of adherence to analgesics is one of the major factors contributing to the undertreatment of cancer pain. The objective of this paper is to outline the development of a mobile application-based system to develop a physician-patient relationship and to improve adherence to medications prescribed for cancer pain management.

Material and methods: The mobile application-based system is developed using alarm and cloud based data sysncronisation for improving medication adherence and self-recording symptoms among cancer patients receiving palliative therapy at a palliative care clinic.

Results: Ten palliative medicine physicians tested the project website and the mobile application thoroughly instead of patients. The physician recoded the prescription and other details on the project website. The data transferred from website to mobile application. The mobile application reminded scheduled medication by alarm, collected medical adherence details, daily symptom observation, and their severity and SOS medication details. The data from the mobile application was transferred back to project website successfully.

Conclusion: The developed system can directly improve the physician-patient relationship, and improve better communication and sharing of information between physician and patient. This will impact the quality of life of the patient, improve the awareness of the patient about the disease, and may reduce rate of hospitalisation. This will also help physicians to treat patients efficiently. The developed system is being tested under a randomised control trial study. The findings of the study can be generalised to all patients suffering from chronic illnesses and on long-term medications.

Objectives: Palliative care (PC) includes a varied range of medical and ethical aspects that should be considered. The role of physicians in PC is crucial so this work explores physicians' knowledge, attitude and practice toward PC in Suez Canal University hospital in Egypt.

Material and methods: A questionnaire survey investigating physician's knowledge, attitude and practice in PC in 30 questions besides their personal and professional data.

Results: Nearly 31% of participants received education in PC. Only 5.5% realised that PC should be introduced to patients at all health-care levels. Most participants (70.9%) were not aware about the WHO three-step analgesic ladder. About 57.7% and 43.6% of participants preferred informing terminal patients about their diagnosis and prognosis, respectively. More than half of participants (58.6%) agreed that the medical intervention decision is the patient's right and 63.2% agreed that do not resuscitate choice is the patient or his family right if he is incompetent. Participants who do not have advance care plans discussions with their terminal patients represented 53.6%.

Conclusion: This study indicated lack of knowledge and insufficient professionalism during management of terminal patients regarding some medical and ethical issues of PC. Formal education and training are urgently needed to improve the holistic vision and practice of PC in Egypt.

Introduction: The Indian Journal of Palliative Care (IJPC) is an open-source, interdisciplinary and peer-reviewed journal started in 1994 that publishes high-quality articles in the field of palliative care in India. The purpose of this study is to analyse the bibliometric data of its publications using bibliometric analysis to understand the key bibliometric factors affecting the journal and its contribution to the field of palliative care research.

Material and methods: A software-assisted bibliometric analysis of the IJPC was conducted. The dimensions database was used to mine the bibliometric data of the journal from 1995 to 2022. A total of 1046 records were analysed using the VOSviewer and Biblioshiny by Bibliometrix software.

Results: The analysis represented a vivid and graphically elaborate picture of the journal. It gives insight into the most productive and influential authors, countries, affiliations, sources and documents along with a picture of the network among them.

Conclusion: This study highlights a gradual upward trend in the annual production of the journal. A strong connection of the IJPC could be seen with leading journals publishing in the field of palliative care globally.

People who belong to ethnic, racial and cultural minorities often have less access to healthcare and have poorer health outcomes when compared to the majority population. In the COVID pandemic, too, health disparities have been observed. Similar disparities have been noted in patients with advanced disease and suffering from pain, with minority patients having less access to or making less use of palliative care. In the US, a range of solutions has been proposed to address the issue of inequality in access to healthcare, with cultural competence figuring prominently among them. This study explores whether and how cultural competence may be applied to palliative care in India to improve access and health outcomes. In the literature, it is argued that, in diverse societies, cultural competence is an essential part of the solution towards equitable healthcare systems. Solutions to problems of healthcare disparities must go beyond an increase in financial resources as more financial resources will not necessarily make the healthcare system more equitable. A culturally competent system recognises and integrates at all levels the culture as a significant component of care, which is particularly relevant at the end of life. If efficiently implemented, cultural competence will lead to higher patient satisfaction, better follow-up and patient compliance and an improved reputation of palliative care among minorities. This may help to reduce inequalities in access and health outcomes in palliative care.

Objectives: Cancers and various terminal illnesses need integrated palliative care with curative management, but, unfortunately, our health care system mainly focuses on the treatment of disease. Lack of awareness, difficulty in pain management and untrained staff are some of the challenges in palliative care services.The study was done to explore the perception of healthcare workers regarding availability, utilisation and challenges in the delivery of palliative care services.

Material and methods: A mixed method study was conducted at tertiary care teaching hospital in North India. Qualitative approach using interviews and focus group discussions (FGDs) among healthcare workers was done to understand their knowledge, perception, barriers and challenges in implementing palliative care services. One hundred and thirteen healthcare workers were interviewed using a semi-structured questionnaire and FGD was conducted to gain more insight into the issues of palliative care. The data obtained was analysed with the help of computer software Microsoft Excel and SPSS version 23 for windows. The data was presented as proportion and mean (S.D.) as deemed appropriate for qualitative and quantitative variables respectively. Thematic analysis was done with the data of FGD.

Results: The knowledge, attitude and practices regarding palliative care were poor across the HCW. During FGD with faculty and residents, the participants showed great concern about the absence of palliative care across many specialties while expressing an acute need for the establishment of a separate interdisciplinary unit on palliative care to improve the quality of life in patients.

Conclusion: The study shows that there are gaps that need to be addressed to make palliative services available in our hospital.

Objectives: Adolescents with cancer experience several psychosocial concerns. Cancer among adolescents contributes to one-fifth of cancers in India. Most of the published empirical literature on adolescents' views about their cancer experience is from high-income countries.The objectives of the study were to explore the experiences of adolescents with cancer in India.

Materials and methods: Twenty-eight adolescents were purposively recruited and participated in prospectively conducted qualitative interviews conducted at the Tata Memorial Hospital, Mumbai, between 2013 and 2015. Interview data were transcribed and analysed using Braun and Clarke's reflexive thematic analysis.

Results: Two themes and several subthemes were generated during the analysis. The transition to the new reality of illness was traumatic. It embodied fear about the unknown, disease and symptoms. The experience was isolating and disfigurement further led to peer separation. Inadequate information made the adolescents anxious and worried, and children and parents experienced moments of severe distress. The love and support received from parents, siblings and extended family facilitated positive coping. Peer support was reassuring and enabled them to have a normalising experience. Discovering their inner strength, acceptance of the situation and faith in God made them resilient and hopeful.

Conclusion: Adolescents with cancer experience significant emotional concerns, which are often unexplored and unaddressed. An adolescent-specific communication framework and psychosocial programme contextual to the Indian setting may be developed based on the study findings.

Objectives: Patients needing palliative care prefer to be cared for in the comfort of their homes. Although private home health-care services are entering the health-care ecosystem in India, for the majority it is still institution-based. Here, we describe a model of home-based palliative care developed by the Tata Memorial Hospital, a government tertiary care cancer hospital.

Materials and methods: Data on patient demographics, services provided and outcomes were collected prospectively for patients for the year November 2013 - October 2019. In the 1^st year, local general physicians were trained in palliative care principles, bereavement services and out of hours telephone support were provided. In the 2^nd year, data from 1^st year were analysed and discussed among the study investigators to introduce changes. In the 3^rd year, the updated patient assessment forms were implemented in practice. In the 4^th year, the symptom management protocol was implemented. In the 5^th and 6^th year, updated process of patient assessment data and symptom management protocol was implemented as a complete model of care.

Results: During the 6 years, 250 patients were recruited, all suffering from advanced cancer. Home care led to good symptom control, improvement of quality of life for patients and increased satisfaction of caregivers during the care process and into bereavement.

Conclusion: A home-based model of care spared patients from unnecessary hospital visits and was successful in providing client centred care. A multidisciplinary team composition allowed for holistic care and can serve as a model for building palliative care capacity in low- and middle-income countries.

Objectives: Advanced cancer patients attending tertiary cancer centres from rural places are referred back to local physicians for symptom management. Due to lack of networking with palliative care centres (PCCs), the referred patients do not receive appropriate palliative care (PC) services. Hence, an attempt was made to map the PCCs in Tamil Nadu to make the referral system efficient.

Material and methods: PCCs in Tamil Nadu were identified from the National Health Mission directory, online sources and from morphine license annexure of drug control department. The details regarding nature of facility, PC model, service type, procedures, cost, morphine availability and type of personnel involved in their PCCs were collected from government and private centres. The data were analysed using descriptive statistics and geomapping of all the centres identified was created.

Results: A total of 371 PCCs were identified, of which 32 were government headquarter hospitals (GHQH), 281 were government community centres and 58 were private. Eighty-three of the 90 centres (including GHQH and private) were active and 60 responded to the survey. More than half of the centres were hospital-based (61.7%) and 28.3% were community-based. The majority of the PCCs had in-patient (75%) and out-patient (63.3%) facilities and 63.3% had regular home visits. Forty-six centres provide PC service free of cost. Nearly 80% provide morphine for pain management, wherein 41 have obtained a license. In total, ten centres had a social worker and four had a psychologist.

Conclusion: The number of PCCs is disproportionate, in which majority of the centres are clustered in urban areas. Integrating PC services into the existing health system is the way forward.