Indian Journal of Palliative Care最新文献

Objectives: Dyspnea, or breathlessness, is a frequent and distressing symptom among patients with heart and lung diseases, particularly in advanced cancer stages, where it affects up to 90% of lung cancer cases. This symptom considerably diminishes quality of life, leading to physical deconditioning, increased levels of anxiety and depression, repeated hospitalizations, and elevated mortality rates. The Multidimensional Dyspnea Profile (MDP), developed in 2011, allows assessment of both the sensory experience and emotional response to dyspnea. While the MDP has been translated into multiple languages, a Telugu version has not been developed, underscoring the need for a validated tool in this under-resourced and primarily illiterate patient population in palliative care. Our aim was to translate and linguistically validate the MDP for use in Telugu-speaking populations in an Indian palliative care setting, where illiteracy rates are high.

Materials and methods: The MDP was translated and adapted into Telugu through collaboration with the Mapi Institute, which specializes in culturally relevant translation and validation of patient-reported outcome (PRO) measures. A structured translation process included both forward and backward translations by two certified independent translators. The translated version was refined through feedback from two Indian palliative care physicians and four healthcare workers. In-depth interviews with 24 Telugu-speaking cancer patients were conducted to evaluate the tool's clarity and suitability for this patient population.

Results: The Telugu version of the MDP was adapted specifically for palliative care settings that serve socioeconomically disadvantaged populations with high levels of illiteracy. The translation adhered closely to international PRO standards set by the Mapi Institute. The MDP facilitated healthcare providers' understanding of dyspnea's impact on this group of palliative care patients.

Conclusion: Applying the MDP in a palliative care context improved clinicians' insights into factors that contribute to dyspnea. However, given the instrument's length, selective use of its sections may be more practical in time-constrained settings.

Objectives: The multidimensional concept of quality of life (QoL) has become vital in cancer care, and research and is crucial for epidemiological investigations. The primary objective of the research was to translate and culturally adapt the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire - Oral Health15 (EORTC QLQ OH15) questionnaire into Hindi, assessing its reliability and validity for implementation among cancer patients of Aligarh.

Materials and methods: This study was carried out from June 2019 to May 2021. Permissions were obtained from the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ) group for cross-cultural adaptation and translation of the Quality of Life Questionnaire-Oral Health15 (QLQ-OH15) and ethical clearance was secured from the Institutional Ethical Review Board at Aligarh Muslim University. Informed consent was provided by participating patients. The translation and cultural adaptation of the QLQ-OH15 followed an eight-phase procedure in compliance with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire translation manual, ensuring consistency. Psychometric properties were evaluated using the Statistical Program for the Social Sciences 20, assessing content validity, convergent and discriminant validity, criterion validity, construct validity, reliability and test-retest reproducibility.

Results: The content validity ratio exceeded 0.75, with Cronbach's alpha values above 0.70 for each scale, confirming reliability. Factor analysis identified five factors: 'Pain and discomfort,' 'Information,' 'Soreness,' 'Denture' and 'Xerostomia.' Every item in every scale had its item convergent validity validated; all values were over 0.4 and there were no scaling mistakes observed. All of the items' correlation coefficients for the other scales were lower than their scales, indicating discriminant validity. There were statistically significant associations between Hindi EORTC QLQ-OH15 scores and three proxy measures: Perceived oral health (P = 0.000), perceived satisfaction with the mouth (P = 0.000) and perceived dental treatment need (P = 0.001).

Conclusion: The Hindi version of the QLQ-OH15 is a valid and reliable tool for assessing oral health-related quality of life in Indian cancer patients. This adaptation facilitates better symptom management and improved QoL in this population, emphasising the importance of oral health in comprehensive cancer care.

Objectives: Taking care of a patient with head-and-neck malignancy (HNM) entails enormous physical, emotional, cognitive and moral challenges. Caregivers frequently turn to spiritual practices such as prayer, offering and meditation to enhance inner strength and coping ability. Assessment of caregiver burden (CGB) would remain incomplete without considering spiritual well-being (SWB). We set out to assess CGB and SWB in caregivers of patients suffering from HNMs.

Materials and methods: This cross-sectional study was carried out in a medical college-associated tertiary care centre after approval from the institutional ethics committee. CGB was determined using a translated version of Zarit Burden interview 22. SWB was determined by the spiritual wellbeing scale (SWBS), which was translated into Gujarati and validated. Relevant demographic data were also collected and analysed.

Results: (1) Patient characteristics: (i) Number of participants: 60 (37 males and 23 females). Mean age: 55.56 years, (ii) Mean time since diagnosis: 7.33 months, (iii) Type of malignancy: Buccal mucosae 31, tongue 12, hard palate 7, lip 4, others 6, (iv) Type of family: Nuclear 14, joint 46. Locale: Rural: 36, urban: 24. (2) Caregiver characteristics: (i) Mean age: 44 years, (ii) Educational status: Graduate and above: 19, undergraduate: 22, primary education: 19, (iii) Occupation: Home-makers: 13, skilled: 18, semi-skilled: 18, others: 6. (3) CGB scores: Mean: 35.30 (Standard deviation [SD] = 11.25). Mild, moderate and high burden were reported by 66.7%, 25% and 3.3% caregivers, respectively. 5% of caregivers reported no burden. (4) SWB score: Mean: 81.70 (SD = 14.84). Low, moderate and high SWB scores were observed in 1.7%, 93.3% and 5%, respectively. (5) There was a significant correlation between higher SWB and lower CGB scores at 0.01 level.

Conclusion: Moderate/high SWB was observed in 95% of caregivers regardless of their educational, social and family backgrounds. There was a significant correlation between higher SWB and lower CGB scores.

Objectives: According to the National Health Portal, brain cancer is witnessing an upward curve in India. The reports by medical professionals suggest that brain tumours will become the second most common cancer by 2030. Any life-threatening illness not only impacts the physical well-being of the patient but also affects the mental well-being of the patient. As an interdisciplinary field, psychology aims to understand the psychosocial components of an illness that goes beyond the realm of medical treatments. Hence, the present study focused on two psychological constructs, namely Pain Catastrophising and Fear of Personal Death. The present research aims to evaluate the relationship between Pain Catastrophising and Fear of Personal Death as well as assess the predictive role of Pain Catastrophising for Fear of Personal Death.

Materials and methods: A correlational design was adopted for the present study. The sample consisted of 180 patients who were diagnosed with a brain tumour and were scheduled for surgery for the removal of the tumour. A purposive sampling technique was used for the selection of the sample. Data were collected on two psychological measures, namely the Pain Catastrophising Scale and the Fear of Personal Death Scale. Pearson's product-moment method and regression analysis were employed for statistical analysis.

Results: The findings highlight that there exists a positive association between the two components of Pain Catastrophising, namely Magnification (r = 0.644, P < 0.01) and Helplessness (r = 0.456, P < 0.01) with the Fear of Personal death. Rumination (0.026, P > 0.05) component exhibited no association with Fear of Personal Death. Linear regression analysis reveals that magnification (R = 0.644, R2 = 0.414, F = 125.861, P < 0.01) and helplessness (R = 0.456, R2 = 0.208, F = 46.857, P < 0.01) are significant predictors of Fear of Personal Death for the selected sample.

Conclusion: Pain Catastrophising tendencies and feelings of Fear of Personal Death are prevalent amongst the selected cohort. Pain-catastrophising components are significantly associated with fear of personal death (FPD) and are also significant predictors of FPD amongst brain tumour patients.

Palliative care (PC) is a young concept in Bhutan. Since the establishment of home-based PC services at the national referral hospital of Bhutan for the residents of Thimphu City in 2018, many patients have benefitted. The need for PC in Bhutan is huge and urgent. The provision of quality PC is important to improve the quality of life of people facing life-limiting illnesses and end-of-life care, irrespective of their diagnosis. At present, efforts are being made to expand the services to the rest of the country by developing human resources. The plan is to train the existing manpower with the help of regional and international experts so that the PC services in Bhutan are sustainable.

Objectives: Pancreatic cancer is a devastating illness with significant impacts on patients' health-related quality of life (HRQoL). The Whipple procedure, a common surgical intervention for pancreatic cancer, presents numerous challenges for recovery and adaptation. This study aims to provide a comprehensive understanding of the lived experiences of patients' post-Whipple surgery. The objective of the study is to explore the lived experiences of patients having cancer of the pancreas undergone Whipple's procedures.

Materials and methods: A qualitative phenomenological approach was employed to delve into the experiences of patients who underwent the Whipple procedure. Twenty-seven patients attending the surgical gastroenterology outpatient department of a tertiary care institution for follow-up were enrolled in the study. The patients were enrolled consecutively till the saturation of data. An interview guide was used to collect the data. The data were analysed using Colaizzi's method to identify the key themes.

Results: The participants, with a mean age of 51.61 ± 10.89 years, were predominantly male (61.7%) and Hindu (70%) by religion. Most participants had tumours of the head of the pancreas and were hospitalised for 16-30 days at the time of surgery. Thematic analysis revealed eleven themes, i.e. post-diagnosis reaction, burden of the disease, physical problems, socioeconomic burden, psychological issues, impact on social life, financial support, disturbed body image, spirituality, communication with healthcare professionals and hospital experiences.

Conclusion: This study underscores the multifaceted challenges faced by pancreatic cancer patients post-Whipple procedure, highlighting the importance of addressing physical, emotional and socioeconomic aspects to improve their HRQoL. The findings can inform healthcare professionals in developing holistic care strategies tailored to these patients' unique needs.

Objectives: Yoga, renowned for its ability to maintain physical, mental and spiritual well-being, has recently gained prominence as a supportive therapy during conventional breast cancer (BC) treatment. This paradigm shift reflects a growing trend of people embracing yoga to enhance their overall health and aid in managing BC. The objective of this study was to determine the yoga intervention and inflammatory homoeostasis in newly diagnosed BC patients.

Materials and method: This study recruited 44 newly diagnosed BC patients at stages II, III and IV (without distant metastasis or other inflammatory diseases), all admitted for neoadjuvant chemotherapy followed by surgery. A prospective non-randomised control design was employed. Baseline assessments were conducted before the first chemotherapy cycle, with follow-ups before the 2^nd and 3^rd chemotherapy cycles, before surgery, and 2 months post-surgery. The outcome was compared with the control group.

Results: The study showed significant within-subject effects in the yoga intervention group on serum tumour necrosis factor-alpha, interleukin (IL)-1-beta and IL-6 levels, while no significant changes were observed in the control group. Although between groups did not show statistically significant, the mean values indicated a consistent downregulation of proinflammatory markers over time in the yoga group.

Conclusion: Incorporating yoga as a complementary therapy alongside conventional BC treatment significantly improved the health outcomes of BC patients by modulating proinflammatory markers.

This study aimed to explore current opioid availability and accessibility for palliative care (PC) practice in Nepal. A narrative review was conducted by performing literature searches in electronic databases, grey literature, policy documents, and pharmaceutical websites. This was supplemented by utilising the authors' expertise and experience in this field. Six different opioids are available in Nepal, including oral immediate and modified-release morphine formulations. Morphine is produced and distributed by only one manufacturer, which imports all raw materials from Europe. Access to morphine in rural areas is poor, with rural-level healthcare centres rarely stocking morphine, particularly in PC formulations. Fentanyl transdermal (TD) patch and methadone syrup are available in Nepal but are imported. The Fentanyl TD patch is extremely expensive, and methadone syrup is only available for the management of addiction. While opioid availability has increased in Nepal, there is a need to improve opioid accessibility for PC services, particularly in rural areas. Several approaches are explored in this review.