Indian Journal of Palliative Care最新文献

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.

Opiates are generally used to relieve dyspnoea in advanced diseases such as cancer and lung diseases. However, little is known regarding the safety and efficacy of morphine for refractory dyspnoea in coronavirus disease 2019 (COVID-19) patients. We retrospectively reviewed records of 18 COVID-19-positive patients who were administered morphine for refractory dyspnoea during hospitalisation between May 2021 and June 2021. Details of morphine usage, vital signs, an 11-point dyspnoea numeric rating scale (DNRS) and adverse events at baseline, 24 h and 72 h after the start of treatment were abstracted from records. The final clinical outcome in terms of death or discharge was noted. All patients had severe refractory dyspnoea (DNRS score ≥7) at the time of administration of morphine and had not been relieved from standard care for the past 3 days. In the results, the mean (standard deviation [SD]) age was 47.1 (12) years, male was 13 (72.20%) patients and modified Medical Research Council Grade 4 was present in all 18 patients. The mean (SD) 1^st day dose of morphine was 7.03 (1.53) mg and the mean (SD) duration of morphine use was 5.22 (3.00) days. Significant decreases in DNRS, respiratory rate and oxygen saturation were observed 24 h and 72 h after the start of morphine administration. Meanwhile, blood pressure and heart rate were not significantly altered after treatment. The finding of this single-centre retrospective study indicates that morphine may be considered for use in the management of refractory dyspnoea among COVID-19 patients.

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.

Lymphoedema is the accumulation of fluids with the high-protein content in the intercellular space, which is the most common complication seen in patients with breast cancer. In this study, we discuss the case of a 67-year-old female operated case of the left modified radical mastectomy in 2012. After 9 years, she had recurrence on the right side and diagnosed with metastatic breast cancer Stage 3 B. She developed lymphoedema on the same side for which she was referred to physiotherapy for further management. Along with radiation treatment, physiotherapy intervention such as complete decongestive therapy (CDT) for lymphoedema was initiated for 10 days which included multilayer lymphoedema bandaging, manual lymphatic drainage and exercise therapy. At the beginning, volume difference was 1688 ml then on the 5^th day, it was 1133 ml, and on the 10^th day, it was 802 ml noted. There was significant reduction in the volume of the involved limb that led to improvement in the score of sleep quality and quality of life (QOL). The major aims of CDT are to improve lymph circulation and to prevent lymphatic stasis which improves the QOL and sleep quality. Patient education and counselling along with home programme of bandaging played a major role in the recovery of the patient. CDT plays an important role in reducing lymphoedema and improving the sleep quality and QOL in metastatic breast cancer patient.

Objective: Measure the satisfaction level of patients visiting a tertiary level cancer institute in Odisha, identify the factors associated with the satisfaction level and assess the health system challenges related to quality service provision for cancer survival.

Material and methods: Analytical cross-sectional study was carried out using a mixed-methods approach in a tertiary cancer care unit in Odisha among 538 cancer patients using the Patient Satisfaction 32 questionnaire and the Patient Health Questionnaire (PHQ)-9 questionnaire.

Results: There were 41% and 43% of outdoor and indoor patients who were below poverty line. Hindu was the predominant religion (>90%), 10% were illiterates and 90% were married in each category. Breast cancer (16%) was predominant among outdoor patients, whereas, it was stomach cancer (15%) among indoor patients. The PHQ median score for females was 1.5 and 1 each for indoor and outdoor patients, respectively. Nearly, 72% and 57% of males and females had mild depression to adjustment disorders statistically significant at P < 0.05. 90% of outdoor and 68% of indoor patients with a greater frequency of visits were significantly more depressed than their counterparts. All those accompanied by people other than their family members also showed higher values of adjustment and mild depressive features (69%) at P < 0.05. About 81% were satisfied with both general services and staff and nearly 40% with treatment and diagnosis.

Conclusion: It gave us demographic details of cancer morbidity and its associates besides validating the survivorship framework in the Indian setting. Self-help anonymous and rehabilitation centres for a holistic integrative approach at the primary level of care need to be done.

Objectives: This study was aimed to estimate the need for palliative care in an urban resettlement colony of Dakshinpuri Extension, New Delhi.

Material and methods: This was a community-based cross-sectional study conducted in New Delhi. We trained four multipurpose workers to screen the households during their routine household-to-household visits. The screening for the need for palliative care was done using three questions - that is, (1) presence of a bedridden patient or (2) person in need for help in activities of daily living or (3) not able to go for work due to any physical chronic illness. If the answer to any of the three screening questions was yes for any member in a household, then these households were visited by a community physician trained in palliative care and a medical social service officer to confirm the need for palliative care. Patients were administered a semi-structured questionnaire containing the sociodemographic details and an assessment of disease status and review of health records was done. The patient and his/her caregiver were also assessed for awareness regarding palliative care.

Results: A total of 2028 households were screened and the need for palliative care was found to be 1.5/1000 population (95% CI: 0.9-2.1). The mean age (SD) of patients who need palliative care was 60 years (SD-12.9). The common diseases which required palliative care were stroke with a focal neurological deficit (45.8%), osteoarthritis with marked dependence (20.8%) and cancer (12.5%). None of the patients was receiving palliative care as patients and their caregivers were not aware of the term palliative care/end of life care/home care for bedridden people/community-based care.

Conclusion: The need for palliative care in an urban resettlement colony of North India was found to be 1.1/1000 population. Further studies are required to estimate the need for palliative care in North India.

Objectives: Palliative care involves providing symptomatic relief from the pain and stress of a severe illness to markedly improve the quality of life for both the patients and their families. It imposes high indirect costs on the patients. The study was conducted at SGPGIMS, which caters to 500 head-and-neck cancer patients annually. Out of these, 30-40% of cases require dedicated palliative care. Unfortunately, often, when patients reach the stage of palliative care, they have exhausted their all financial reserves. Therefore, a cost analysis of total cost incurred (including out-of-pocket expenditure and social cost) during palliative care in cases of head-and-neck cancer at a Government Regional Cancer Centre was undertaken.

Material and methods: The study is a descriptive study and the study sample consisted of (a) patients who had undergone surgery, chemotherapy, or radiotherapy and had recurred/relapsed and were now candidates for palliative care and (b) patients who presented de novo to the Regional Cancer Centre, SGPGIMS with advanced-stage disease, where the cure was not possible. The expenditure incurred was obtained retrospectively and prospectively from the study samples.

Results: The out-of-pocket expenditure per patient per day was INR 2044.21. The social cost per patient per day was INR 518.21. Out of the total expenditure of INR 2562.42/patient/day, 80% of the cost was out-of-pocket expenditure and the remaining 20% was social cost borne by the patient.

Conclusion: The study thus added to perspective on the average expenditure on out-of-pocket expenses and social costs being incurred as of date, while getting palliative care for head-and-neck cancer at a Regional Cancer Centre.

Objectives: Thither is a more pressing effort to think about chemotherapy (CTx) in second-line and beyond in patients with metastatic pancreatic cancer (mPC). The current work aimed to evaluate the value of the Glasgow prognostic score (GPS) and modified Glasgow prognostic score (mGPS) to predict the survival in patients receiving second-line CTx protocol.

Material and methods: We retrospectively reviewed the patients' medical files with mPC who received second-line CTx protocol between September 2013 and December 2017. The GPS/mGPS graded from 0 to 2 based on C-reactive protein and serum albumin.

Results: One hundred and sixty-nine patients with mPC were eligible. Survival of patients with Score 0 (GPS/mGPS) was better than that of Score 1 (GPS/mGPS) or Score 2 (GPS/mGPS), which was statistically significant (P < 0.001). Of 78 patients who died, only 16 patients belonged to Score 0 (GPS/mGPS), compared to 30 patients belonged to Score 1 (GPS/mGPS) and 32 patients belonged to Score 2 (GPS/mGPS). Univariate analysis showed that high GPS/mGPS (P < 0.000) as well as poor Eastern Cooperative Oncology Group Performance Status (P < 0.000) and metastasis either to the liver (P < 0.01) or lung (P < 0.04) were linked with worse prognosis. A statistically significant association was detected between the two scores. Cohen's Kappa coefficient (k) was 0.9, SD = 0.03; 95% CI (0.787-0.922; P < 0.001).

Conclusion: Our data suggested that GPS/mGPS is an easy and applicable index that may be used in daily practice and may help in the prognostic stratification of mPC patients to avert overtreatment in frail patients and raise the best supportive treatment concept.