Indian Journal of Palliative Care
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   Table of Contents - Current issue
January-March 2021
Volume 27 | Issue 1
Page Nos. 1-187

Online since Wednesday, February 17, 2021

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Diplomate in national board palliative medicine Highly accessed article p. 1
Sushma Bhatnagar
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Barriers to the provision and utilization of palliative care in Africa: A rapid scoping review Highly accessed article p. 3
David A Agom, Tonia C Onyeka, Peace N Iheanacho, Jude Ominyi
Palliative care (PC) has continued to be less available, underutilized, and unintegrated in many of the healthcare systems, especially in Africa. This scoping review synthesized existing published papers on adult PC in Africa, to report the barriers to PC and to assess the methodologies used in these studies. Eight electronic databases and Google Scholar were searched to identify relevant studies published between 2005 and 2018. Overall, 42 publications (34 empirical studies and 9 reviews) that reported issues related to barriers to adult PC were selected. Three themes identified were individual-level, system-level, and relational barriers. The studies reviewed predominantly utilized cross-sectional and retrospective study design, underscoring the need for more studies employing qualitative design. Findings highlight the need for health education, training opportunities, more funding, communication, and timely referral. Future works could focus on underlying factors to these barriers and ethno-religious perspectives to PC in Africa.
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Is the Kerala model of community-based palliative care operations sustainable? Evidence from the field p. 18
E P Abdul Azeez, G Anbuselvi
Background: The palliative care operation in Kerala, unlike other parts of India, is widespread. Kerala's community-based approach to palliative care is often recognized in the current literature as a sustainable model. However, the sustainability of palliative care operations is not empirically studied, and the domains of sustainability are not clearly explained in the current literature. Aims: The present study attempted to explore the following research questions. First, are the community-based palliative care operations in Kerala really sustainable? Second, what are the dimensions of sustainability? Methods: To answer these research questions, an empirical field-based investigation was carried out using the case study method. The study was conducted among ten selected palliative care units in the Malappuram and Palakkad districts of Kerala. The records of service delivery, reports, and other available documents were accessed. Interviews were conducted with the key functionaries and other staff of the individual palliative care units. Results: The result of the study indicates that palliative care is delivering uninterrupted and comprehensive care to the needy in the region. Three dimensions were evident as the sustainability of palliative care operation. Conclusion: The replication of this model requires an understanding of these dimensions.
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Seeking an adjustment from the unnatural to the supernatural: The experience of losing a child from cancer in Colombia p. 23
Sonia Carreno-Moreno, Mauricio Arias-Rojas, Lorena Chaparro-Díaz
Aims: The death of a child with cancer can be devastating for his or her parents. This study sought to understand the way in which the process of parental grief develops after the death of a child with cancer. Methods: The research used a grounded theory approach, in which 18 participants were enrolled including parents whose child died from cancer 5 months to 5 years before. In-depth interviews were conducted, which were analyzed using constant comparisons until theoretical saturation was reached. Results: Fifteen subcategories were identified and grouped into three categories that explain what the grieving process represents to the parents over time (a) crossing a desert, (b) dying while alive, and (c) coming back to life. From the emerging relationships among the categories, the core category “seeking adjustment from the unnatural to the supernatural” arises. The results show that grief begins from the moment of diagnosis until long after the child's death. For parents, it entails understanding the disruption in the natural course of life, going through indescribable pain, and being spiritually reconnected with their child. Conclusions: These results enable nurses to design comprehensive interventions that meet the described needs of these parents.
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An observational study on the effects of delayed initiation of end-of-life care in terminally ill young adults in the intensive care unit p. 31
Anirban Hom Choudhuri, Sakshi Duggal, Bhuvna Ahuja, Rajeev Uppal
Introduction: The early initiation of end-of-life (EOL) care in terminally ill patients in the intensive care unit (ICU) offers distinct advantages but requires the consent and cooperation of the patients or their relatives. The terminally ill young adults pose distinct set of challenges. The present study was conducted to measure the prevalence and identify and compare the risk factors for the delayed initiation of EOL in terminally ill young adults. Methods: The retrospective study was conducted in a mixed medical-surgical 7-bedded ICU after extracting the medical records of all terminally ill young adults in the age group of 20–40 years admitted between June 2014 and November 2018. Only “treatment futile” patients were eligible for inclusion. The patients already on EOL care or with unproven diagnosis were excluded from the study. The commencement of EOL care was divided into (a) normal group (N) and (b) late group (L). The two groups were compared with respect to the demographic factors, outcome, and patient satisfaction level. The factors responsible for the delay were investigated. All statistical analyses were performed using software SPSS 21.0 (SPSS, Inc., Chicago, IL, USA). Results: Out of 66 terminally ill young adults with treatment futility, 23 (38.9%) were in the N group and 36 (61.1%) were in the L group (0.8 ± 0.4 days vs. 3.1 ± 1.6 days; P = 0.01). The education level and social and family support of the relatives of the N group were higher (P = 0.03; P − 0.04). The N group had lesser drug consumption of ICU resource usage (14.7% vs. 36.1%, P = 0.01; 18.5% vs. 24.7%, P = 0.04). There was no difference in the duration of mechanical ventilation, ICU stay, and satisfaction level at the time of discharge (or death) from the ICU. Conclusions: Our study found a high prevalence of delayed initiation of EOL care in terminally ill young adults and identified the factors responsible for them. The normal initiation of EOL care reduced the usage of medications and resources without affecting the level of patient satisfaction.
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Palliative care quiz for Nurses-Indonesian Version (PCQN-I): A cross-cultural adaptation, validity, and reliability study p. 35
Nuzul Sri Hertanti, Anggi Lukman Wicaksana, Christantie Effendy, Chi-Yin Kao
Aim: The study is aimed to perform a cross-cultural adaptation of the palliative care quiz for nurses in an Indonesian context to evaluate its psychometric properties. Methods: A two-phase design was used in this study, including cross-cultural adaptation and psychometric testing. The PCQN-I was tested on a convenience sample of health-care providers recruited from 20 primary health-care (PHC) centers in Yogyakarta, Indonesia, from July to October 2017. Results: The cross-cultural adaptation ultimately resulted in a total of 20 items from the PCQN-I. An expert committee revised the words in Item 4 from “adjuvant therapies” to “adjuvant therapies/additional therapies,” in Item 5 from “bowel regimen” to “gastrointestinal therapies,” and Item 16 from “Demerol” to “Pethidine” based on the Indonesian context. The experts retained Item 5 “It is crucial for family members to remain at the bedside until death occurs,” although none of the participants (n = 40) involved in the pilot testing could answer it correctly, and Item 19 “The loss of a distant or contentious relationship is easier to resolve than the loss of one that is close or intimate” although few participants responded correctly. A total of 150 health-care providers consisting of 100 nurses and 50 physicians were involved in the psychometric testing. The scale-level content validity index/Ave of the PCQN-I was 97 and 93 in terms of its relevancy and clarity, respectively. The reliability was calculated as the Kuder–Richardson formula 20 score was 0.71. Conclusions: The PCQN-I is a valid and reliable instrument for assessing palliative care knowledge among PHC providers. Further research is warranted to examine its reliability in different clinical settings.
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Prediction of survival outcome using Chuang's prognostic scale in metastatic breast cancer p. 43
Amrallah A Mohammed, Omar Al-Zahrani, Fifi Mostafa Elsayed, Ayman Elshentenawy
Background: For physicians and patients, survival estimation is vital for the treatment plan, especially with frequent use of new therapeutic agents in metastatic breast cancer (MBC). The Chuang's Prognostic Scale (CPS) is a validated prognostic score that may be useful in the avoidance of unnecessary palliative systemic treatment. Aim: The present study aimed to evaluate the CPS in survival prediction in patients with MBC after at least two lines of palliative systemic chemotherapy protocols (PSCPs). Methods: CPS was prospectively measured in 221 patients with MBC. The total score ranged from 0 to 8.5; the lower score refers to a good prognosis. The survival assessment was made by the Kaplan–Meier curve and the survival difference among the groups was estimated by log-rank test. Results: Using the cutoff value of CPS 5.7, the patients were classified into two groups: Group A had score ≤5.7 (174 patients, 78.7%) and Group B had CPS score >5.7 (47 patients, 21.3%). About 86.2% of the patients in Group A survived >3 months (median survival was 165 days, 95% confidence interval [CI]: 77–261) compared with 21.3% of patients survived in Group B (median survival was 81 days, 95% CI: 55–123) (P = 0.00). The sensitivity, specificity, positive predictive value, and negative predictive value were 97.6% (95% CI: 87.4–99.9), 98.3% (95% CI: 95.2–99.7), 93.2% (95% CI: 81.6–97.7), and 99.4% (95% CI: 96.2–99.9), respectively, for the 3-month mortality prediction. Conclusion: CPS could be helpful in estimating the survival outcome in patients with MBC who received at least two PSCPs.
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The role of family caregiver's sense of coherence and family adaptation determinants in predicting distress and caregiver burden in families of cancer patients p. 47
Seyedreza Mirsoleymani, Mahsa Matbouei, Parvaneh Vasli, Milad Ahmadi Marzaleh, Camelia Rohani
Background: Most cancer patients' families suffer from maladaptation which increases family distress and caregiving burden. This study was conducted to explore the relationship between these maladaptation indicators, and the sense of coherence (SOC) of family caregivers alongside other family resilience determines among family caregivers of cancer patients. Methods: A total of 104 family caregivers of cancer patients were included in this cross-sectional study. They answered three questionnaires to assess family resilience factors: Family Inventory of Resources for Management (FIRM), Family Crisis Oriented Personal Evaluation Scales (F-COPES), and SOC scale. In addition, family maladaptation factors were determined by two instruments, including Family Distress Index (FDI) and Caregiver Burden Inventory (CBI). Results: The results of this study showed that the FIRM and the SOC together were responsible for 35% and 43% of the variances in FDI and CBI scores, respectively (P < 0.001). “Reframing”, the subscale of the F-COPES, significantly predicted the variances of FDI (β = −0.26, P = 0.01) and CBI scores (β = −0.21, P = 0.04). Moreover, “Mastery and health”, the subscale of the FIRM, significantly predicted the variances of FDI (β = −0.38, P < 0.01) and CBI scores (β = −0.21, P = 0.02). Conclusions: Family caregiver's SOC alongside other family resilience determinants plays a significant role in alleviating family distress and caregiver burden. It is suggested that palliative care providers consider family caregivers' SOC in developing a psychological intervention plan to improve family resilience in families of cancer patients.
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How physicians in South India recognize, assess, and manage people with chronic breathlessness syndrome: A thematic analysis p. 54
Matilda M M Barnes-Harris, Sunitha Daniel, Chitra Venkateswaran, Ann Hutchinson, Miriam J Johnson
Objectives: Chronic breathlessness syndrome has been defined to help clinicians actively seek, and patients legitimately present with, persistent breathlessness, and to drive services and research. However, views from low- to middle-income countries were not included. We aimed to explore the views of hospital physicians regarding chronic breathlessness syndrome, its recognition and management. Methods: This was a secondary analysis of qualitative data collected during a service development project. Three focus groups of physicians caring for patients with chronic breathlessness in a single tertiary hospital in South India were conducted in English, audio-recorded, transcribed, and subjected to thematic analysis. Results: Fifteen physicians from oncology, palliative care, cardiology, and respiratory specialties participated. Three major themes (impact, invisibility, and purpose) were generated. Findings mirrored those in high-income countries. Chronic breathlessness, as defined, was seen as prevalent, with a major impact on patients, families, and physicians. Nonpalliative care physicians described therapeutic helplessness with poor awareness and/or ability to manage breathlessness accompanied by active avoidance. This helplessness, a perceived lack of assessment tools and lack of access to palliative care contributed to the “invisibility” of chronic breathlessness. Most participants agreed with the name of chronic breathlessness syndrome. All agreed that systematic identification would foster education regarding assessment and management and support service development and research. Conclusions: Chronic breathlessness syndrome is recognized in South India but, as in higher-income countries, risks being invisible due to the lack of awareness of therapeutic interventions. A named and defined syndrome was seen as a way to improve identification and management.
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Factors influencing scales of burden, coping mechanisms, and quality of life in caregivers of hemodialysis patients in Andhra Pradesh, India p. 62
M Nagarathnam, S. A. A. Latheef, V Sivakumar
Background: Evaluation of factors influencing scales of burden, coping mechanisms, and quality of life (QOL) in caregivers of hemodialysis (HD) patients may lead to the revision of interventions aimed at the betterment of QOL of caregivers of HD patients. In this study, we investigated the influence of demographic, social, and clinical variables on burden, coping mechanisms, and QOL in caregivers of HD patients. Methods: In this prospective study, 150 caregivers of HD patients were recruited. Assessment of burden, coping strategies, and QOL were made by the Zarit Burden Interview, Revised Ways of Coping, and Short Form-36 QOL. The role of age, gender, and social and clinical variables on these constructs was investigated using multivariate analysis of variance. Results: The mean age was 43.86 ± 1.11 years. Males outnumbered females. Most were Hindu, married, primary school educated, unemployed, spouses, caring the patients, and suffering from chronic diseases for <5 years. In multivariate analysis of variance, effect of age on physical functioning (PF), general health (GH), and physical component summary (PCS) score (P < 0.01); gender on burden, distancing, seeking social support, role limitation due to emotional problem, and pain (P < 0.05); role limitations due to physical health, energy/fatigue (EF), emotional well-being, PCS, and mental component summary (MCS) score (P < 0.01); religion on PF (P < 0.05); marital status on burden and GH (P < 0.05); PF and PCS (P < 0.01); relationship of caregiver with the patient on PCS (P < 0.05); EF and MCS (P < 0.01); and presence of chronic diseases on GH and social functioning (P < 0.01) were observed. Conclusion: The role of demographic, social, and clinical variables should be taken into consideration while initiating therapies for reducing the burden and improving the QOL of caregivers.
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Clinical and socio-demographic profile of hospice admissions: Experience from New Delhi p. 68
Astha Koolwal Kapoor, Sushma Bhatnagar, Rajni Mutneja
Background: Our hospice caters to referrals from the wide areas in the northern Indian territory. A descriptive analysis of hospice admissions can bring to light, the status of palliative care in the region overall. Aim: The aim was to assess the clinical and demographic profile of hospice admissions in New Delhi during the time period 2016–2017. Methods: Hospice admission records from the calendar year 2016 were digitized from paper charts, and statistical analysis was carried out using SPSS v21. Patient and caregiver demographic profile and dominant referral and utilization patterns were retrospectively assessed. Results: One hundred and fifty-four admissions (mean age 51.8 ± 15 years; 60% females) were recorded. Up to one-third of the patients (48, 31%) were single at the time of admission. Majority of the patients had below 10th grade literacy level (116, 75.3%) and belonged to low socioeconomic status. Two large tertiary care centers were the most common referrers (54.6%). The top three diagnoses were head-and-neck cancers (56, 36.4%), gastrointestinal cancers (27, 17.5%), and metastatic breast cancer (23, 14.9%). Major patient-reported debilities were pain (73%), dysphagia (51%), and incontinence (45%). The mean duration from diagnosis to hospice referral was 2.7 ± 0.7 years. Majority of the patients (76%) reported to have undergone some form of oncologic treatment. Up to two-thirds of the patients received opioids with or without additional supportive care. Conclusion: Pain, dysphagia, and incontinence were the most common reasons for hospice referral, with incontinence being significantly correlated with the divorced status. There were no differences in the prevalence of other symptoms with relation to the marital status. Data on hospice utilization patterns in India are limited to pilot experiences. More data are needed to drive national-level policies.
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Mediating role of affective experiences in the relationship between perceived social support and life satisfaction among breast cancer patients p. 76
Jyoti Srivastava, Sandhya S Kaushik, Mallika Tewari, Hari S Shukla
Aim: The role of social support network in managing psychological symptoms in cancer patients is widely acknowledged. The purpose of this study was to investigate the potential mediating role of Affective experiences in the relationship between perceived social support (PSS) and life satisfaction (LS) among breast cancer patients in India. Methods: A total of 100 breast cancer patients from S. S. Hospital, Banaras Hindu University participated in the study. They were tested using the PGI Social Support questionnaire, Satisfaction with Life Scale and Scale of Positive and Negative Experiences. Results: Co-relational results indicated that PSS was positively associated with positive affect and LS, while inversely related to negative affect. Affect was also associated with LS. Results showed that the mediation of affective experiences in the relationship between PSS and LS was significant (P <.01 level). Conclusion: Both PSS played a big role in LS among breast cancer patients. Besides focusing on improvement of the social support network, the psychologists and counsellors should adopt an integrated approach for evidence-based intervention strategies to enhance their ability to effectively balance their positive and negative emotions to promote LS among cancer patients.
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The effect of 5-min mindful breathing on pain in palliative care cancer patients: A randomized controlled study p. 83
Ng Chong Guan, Tan Seng Beng, Low Sue-Yin, Sharmilla Kanagasundram
Context: While pain is a common complaint among palliative cancer patients, there is little research looking into nonpharmacological methods for the reduction of pain in the palliative setting. Aim: This study aims to study the efficacy of 5-min mindful breathing for rapid reduction of pain in a palliative care setting. Methods: This is a sub-analysis of the previous randomized controlled study on distress reduction. Sixty patients were recruited and randomly assigned to either the intervention (5-min mindful breathing) or the control (5-min normal listening) group. Participants reported their pain on a 10-item analog scale at baseline, immediately after intervention and 10 min postintervention. Changes in pain scores were further analyzed. Results: Pain scores decreased for both the intervention and control groups. However, the reduction of pain did not reach statistical difference in both groups (P > 0.05). Conclusion: Five-minute mindful breathing is a quick and easy to administer therapy but does not have significant effects in terms of pain reduction in palliative settings. Future research and directions are nonetheless suggested and encouraged to look for short-term mindfulness-based therapies on pain reduction for this population.
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Characteristics of advanced cancer patients admitted to the palliative care unit from the emergency department p. 89
Gonca Oğuz, Nesteren Koçak, Gülçin Şenel, Nihal Kadioğullari
Aim: People with cancer frequently present to emergency departments (EDs) because of exacerbation of the existing problems and new symptoms, complications of treatments, or difficulties with care and support systems. The aim of the study was to determine the presenting symptoms and demographic characteristics of advanced cancer patients and their caregivers admitted to the palliative care (PC) unit from the ED. Methods: After approval, 139 cancer patients admitted to the ED and referred for PC consultation were included in the study. The medical records of PC unit for all patients and their primary caregivers were retrospectively evaluated. Demographic characteristics, cancer site and metastasis, reasons and frequency for ED admissions, symptoms, duration of hospitalization, and outcomes were recorded. The association between the characteristics of caregivers and emergency visits was also evaluated. Results: Among all patients, 61.9% were >60 years old, 58.3% were male, and 71.2% were married. The most frequent site of cancer was gastrointestinal system (39.6%), lungs (18.7%), and genitourinary system (12.2%). The reasons for emergency visits were found as inadequate symptom control (65.5%), dying patient (30.2%), lack of psychosocial support (3.6%), and symptom of other comorbidities (0.7%). The most frequent symptoms were feeling of not well-being, tiredness, and lack of appetite. There was no difference in the number of admissions according to caregivers. Ninety-seven patients (69.8%) died at the PC unit and 42 (30.2%) were discharged. Conclusion: PC system needs to be integrated into all health-care disciplines including EDs. While improving a community- and home-based PC, education of patients, caregivers, and health professionals must also be provided.
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Validity and reliability of the hindi version of the patient assessment of constipation quality of life questionnaire in cancer patients on opioids for pain management at tertiary care center, India p. 95
Seema Mishra, Ram Singh, Sujata Satapathy, Sushma Bhatnagar
Background: Opioid-induced constipation (OIC) causes a significant worsening of quality of life (QOL). The patient assessment of constipation QOL questionnaire (PAC-QOL) is a validated scale in English language to assess the QOL in patients with chronic constipation and guide the management by measuring response to a targeted therapy. Objective: The objective of the study was to evaluate the validity and reliability of PAC-QOL questionnaire after translation in Hindi language for Indian cancer patients with OIC. Materials and Methods: This was a prospective observational cross-sectional study. Three hundred and thirteen adult cancer patients receiving opioid treatment for pain and experiencing self-reported symptoms of constipation were evaluated. The severity of constipation was assessed at baseline and at an interval of at least 2 weeks by the physician using constipation scoring system (CSS) and self-reported Hindi version of PAC-QOL questionnaire. Results: The data obtained from 313 patients were taken for analysis. The internal consistency of the tool was established with the favorable value of Cronbach's alfa coefficient (i.e., >0.70) obtained for all four subgroups and overall score. The intraclass correlation coefficient value of >0.70 also established good correlation between overall and subgroups scores of Hindi version of PAC-QOL, obtained at 1st and 2nd visit. It was observed from the result that a significant correlation existed between the overall and subgroups scores of Hindi version of PAC-QOL and CSS, thus establishing concurrent validity. Conclusion: It was concluded from the study results that Hindi version of PAC-QOL is both reliable and valid to assess the QOL in patients with OIC.
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The validation of questionnaire on end-of-life care knowledge, perceptions, and preferences among end-stage renal disease patients on hemodialysis p. 99
Nur Raziana Binti Rozi, Wan Ahmad Syahril Rozli Wan Ali, Che Rosle Bin Draman, Hafizah Binti Pasi
Introduction: End-of-life care issues for end-stage renal disease (ESRD) patients are still not fully highlighted in trials and clinical practice. Due to the inadequacy, exploring patients' knowledge, perceptions, and preferences is essential to improve the delivery of care. This was performed using questionnaires which have been a widely useful tool in medical researches. Up to date, there was no published, validated questionnaire developed in Malaysia for such purposes yet. Objective: This study aimed to develop and validate the questionnaire on end-of-life care knowledge, perceptions, and preferences among hemodialysis (HD) patients. Subject and Methods: A cross-sectional study was conducted among 92 HD patients from 14 centers. It involved four phases including (i) developing the questionnaire and pretesting, (ii) improving and editing and redistribution to respondents for the pilot study, (iii) factor analysis (FA), and (iv) internal consistency reliability testing. Results: The result of FA with varimax rotation performed identified three domains for the 41 items, with 10–20 items in each domain. All the 41 analyzed items had a good factor loading of more than 0.4 with the lowest value of 0.421 and were nicely fit into three respective domains: knowledge, perceptions, and preferences. Internal consistency reliability analysis Cronbach's α values were between 0.5 and 0.7 for all domains, higher than the level set for this study (0.5). Conclusion: The questionnaire was successfully validated and considered a useful tool in describing ESRD patients' end-of-life care knowledge, perceptions, and preferences.
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The burden of cancer-related neuropathic pain: A multi-centric cross-sectional observational study from North India p. 104
Aanchal Satija, Anjum Khan Joad, Shiv Pratap Singh Rana, Sushma Bhatnagar
Introduction: Neuropathic cancer pain is a common consequence of cancer itself and anti-cancer treatments. It is a complex phenomenon, often underdiagnosed by physicians or underreported by patients. Its diagnosis and management are usually more challenging than nociceptive pain. There is a dearth of epidemiological evidence for neuropathic pain in cancer patients in India. Screening questionnaires serve as a quick guide to identify potential cases of neuropathic pain. The aim of the present study was to identify the burden of cancer-related neuropathic pain using the Self-reported version of the Leeds Assessment of Neuropathic Symptoms and Signs (S-LANSS) pain scale. Methodology: This was a cross-sectional, observational, multi-centric study conducted at three hospitals in North India. From January 2017 to October 2017, patients attending pain clinic were screened for participation in the study. Adults aged ≥18 years and experiencing the pain of oncologic origin were eligible to participate in the study if they provided informed consent. S-LANSS questionnaire was used to screen patients with neuropathic pain. Results: From a total of 261 patients, who were enrolled in the study, 56.7% were male and their mean age was 50.87 (18–80) years. Fifty-four percent patients had pain with predominantly neuropathic component (S-LANSS score ≥10). Conclusion: High burden of neuropathic cancer pain has been observed in outpatient palliative care settings. Early diagnosis of neuropathic pain through screening questionnaires can serve as a quick guide for physicians in resource-constrained settings. This will allow identification of the neuropathic component of pain in patients suffering with mixed pain.
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Caregiver burden and quality of life among family caregivers of cancer patients on chemotherapy: A prospective observational study p. 109
Seema Mishra, Abhity Gulia, Sujata Satapathy, Ajay Gogia, Atul Sharma, Sushma Bhatnagar
Aim: Informal caregivers of cancer patients have extensive burdens. They are susceptible for deterioration of their quality of life (QOL). We aimed to assess caregiver burden and QOL of family caregivers of cancer patients receiving chemotherapy admitted in the ward/intensive care unit/high-dependency unit. Materials and Methods: This prospective observational study including 178 caregivers was carried out in a tertiary care hospital. The assessment of caregiving burden was done using the Zarit Burden Interview and its impact on QOL using the WHO BREF QOL questionnaire. Results: The mean age and mean Zarit Burden score of caregivers were 38.98 ± 10.53 and 30.697 ± 8.96, respectively. Of the total, 70.22% of caregivers reported mild-to-moderate burden and 21.38% reported moderate-to-severe burden. On assessment of QOL WHO BREF, the mean general score was 5.79 ± 1.84, physical health score was 49.65 ± 16.07, psychological health 51.85 ± 20.43, social relations 59.38 ± 21.43, and environmental 58.73 ± 17.51. The QOL scores were slightly better in mild-to-moderate burden compared to moderate-to-severe burden but not statistically significant except for social relations (P = 0.053). We did not find any difference in burden scores or QOL between male and female caregivers. Conclusion: Mild-to-moderate burden was seen in 70.22% of caregivers and 21.38% had moderate-to-severe burden.
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Survey of psychosocial issues of nasogastric tube feeding in head-and-neck cancer patients p. 113
Ravi Umrania, Dwija Patel, Bhavna C Patel, Manisha Singh, Priti Sanghavi, Himanshu Patel
Background: Because of some psychosocial reasons and misbelieves regarding nasogastric(NG) tube feeding, many patients refuse for NG tube insertion. Aim: Primary aim was to do survey of psychological reasons for refusal of NG tube insertion and feeding in head and neck cancer patients. Secondary aim was to assess impact of psychological counseling of patient who did not accept NG tube feeding. Method: This cross sectional study was conducted on patients referred to palliative medicine department and needed NG tube feeding but refused for the same. We prepared our own questionnaire which includes the most common cause for enteral feeding refusal which we found during our routine OPD since last five years response to those questions were recorded. Then we did psychological counseling of patients and again we assessed patient's acceptability for NG tube feeding by Likert scale and record their response. Results: Most common psychological reasons for patient's refusal were “it will disrupt my body image”(88.33%), “unable to go outside/mix with people”(80%) and “dependency on others for activities”(66.66%). Post psychological counseling out of 60 patients 47 patients were agreed while 13 patients did not agree with NG tube feeding (P value 0.000062<0.5). Conclusion: We conclude that though NG tube feeding is necessary for some head and neck cancer, there are lots of psychosocial problem regarding its acceptance for patients. For that adequate psychological assessment and counseling is necessary for patients' acceptance, compliance and good quality of life.
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Exploring the financial toxicities of patients with locally advanced head and neck malignancies, being treated in a private sector hospital in North India: A thematic analysis p. 118
Saurabh Joshi, Upkar Joshi, Ankur Bahl, Devavrat Arya, AK Anand, Ramandeep Singh Arora
Background: The high cost of cancer diagnosis and treatment is a global concern. Evidence derived, mostly from high-income countries, shows how it gradually impacts the personal and household financial condition causing the increased psychosocial burden of the patient and their families (termed “financial toxicity”). Aim: To qualitatively explore the financial toxicities in patients with advanced head and neck malignancies in India, and to consider how it impacts the patient and his family. Methods: Interviewing a purposive sample of 8 patients using semi-structured interviews face to face. Interviews were transcribed verbatim, and a thematic content analysis was carried out. Results: Four major themes were identified: burden and amplifying factors, impact, rescue and relieving factors, and learning and innovation. The burden of cost relates to diagnosis, treatment and non-medical costs which gets amplified while navigating the healthcare labyrinth. Emerging themes describe financial journey of cancer patients, the issues faced by them and the ways they tackle these issues during their treatment. Healthcare system factors like limited availability of adequate/comprehensive/meaningful insurance and reimbursements potentiate the toxicity. The financial toxicity leads to a significant adverse financial, psychological and social impact on the patient and the family. While moving through the process of care, there were a few learnings and innovations which patients proposed. Conclusion: This study provides qualitative evidence of the considerable and pervasive nature of financial toxicity in head and neck cancer patients in India. The findings have implications for all cancer patients and highlight the unmet need of psychosocial support for these patients.
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Awareness and attitudes of primary caregivers toward end-of-life care in advanced cancer patients: A cross-sectional study p. 126
Sourav Burman, Rakesh Garg, Sushma Bhatnagar, Seema Mishra, Vinod Kumar, Sachidanand Jee Bharati, Nishkarsh Gupta
Introduction: Awareness of end-of-life care (EOLC) has been at grass root level in our country. The caregivers are clueless about the concept of comfort care and that terminally ill cancer patients need care at home rather than the paraphernalia of the hospital ward. The basic aim of the study was to assess the awareness of the EOLC in the caregivers of the advanced cancer patients. Methods: After Ethics Committee approval, this prospective cross-sectional observational study was conducted among primary caregivers of patients receiving palliative care for advanced cancer. The primary caregiver was identified and written informed consent was obtained. The questionnaire for assessing awareness and attitudes of primary caregivers toward EOLC in advanced cancer patients was prepared and validated. The standardized study questionnaire was completed by the primary caregiver assisted by the researcher. The categorical data were analyzed using Fisher's exact test and Chi-square tests. The intergroup correlation was done using the Chi-square and nonparametric tests. Results: The results showed that only mere 26% of caregivers were aware of the term palliative care. The female population was more knowledgeable about EOLC, with 68% of them willing to initiate the same. The rural population was more willing to adopt palliative care (47%) and was more receptive about discontinuing aggressive definitive therapy. Conclusion: We conclude that the awareness about EOLC remains poor in caregiver if patients with advanced cancer in spite of good awareness of the disease. The consequences of the outcome of disease, EOLC understanding, futility for definitive care, acceptability, and understanding of palliative care lacked in most of the caregivers.
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The use of methadone in pediatric cancer pain – A retrospective study from a Governmental Cancer Center in India p. 133
Gayatri Palat, Charlotte Algotsson, Spandana Rayala, Vikranth Haridass, Jayalatha Nethagani, Vineela Rapelli, Maria Gebre Medhin, Eva Brun, Mikael Segerlantz
Background: The management of cancer-related pain relies on access to opioids. When regular opioids are not tolerated, or are insufficient, methadone is an affordable and effective analgesic. Aim: The aim of the project was to describe the pattern of use and clinical experience of methadone in pediatric cancer pain at a governmental cancer hospital in Hyderabad, one of the four Indian cancer centers with permission to prescribe methadone. Methods: This was a retrospective study of medical records of all children, under the age of 18, who had been prescribed methadone from September 9, 2017, to November 19, 2019. Data on analgesic effect, prior and concomitant analgesic treatment, opioid side effects, and the handling of methadone were analyzed. Results: A total of 11 children were identified and studied. Methadone was introduced mainly when pain was uncontrolled by regular opioids. Initial daily doses ranged from 1 to 15 mg. The duration of treatment ranged from 7 to 307, with a median of 50 days in the nine patients where treatment exceeded one single dosage. Good analgesic effect was reported in 5/9 children, unchanged from previous analgesic treatment in three patients and without any effect in one child. No severe side effects were reported. Conclusion: Low-dose methadone in the treatment of pediatric cancer pain at a low-resource cancer center was safe and well tolerated by the patients, with long treatment durations. It was safely managed, administered with single to double daily dosages, hence easy for patients and family to handle, and an affordable treatment option.
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The use of methadone in adult patients with cancer pain at a governmental cancer center in India p. 139
Gayatri Palat, Charlotte Algotsson, Spandana Rayala, Vikranth Haridass, Jayalatha Nethagani, Mustafa Ahmed, Vineela Rapelli, Maria Gebre Medhin, Eva Brun, Mikael Segerlantz
Background: Management of cancer-related pain relies on the access to opioids. When regular opioids as morphine are not tolerated or are insufficient, adjuvant opioids as methadone are an affordable and effective analgesic. Aim: The aim of the project was to describe the pattern of use and clinical experiences of methadone in patients with cancer-related pain at a low-resource hospital in Hyderabad, one of few Indian cancer centers with permission to prescribe methadone. Methods: Medical records of all patients who had been prescribed methadone, September 9, 2017 and November 19, 2019 were studied retrospectively. Data on analgesic treatment and opioid side effects were analyzed. Results: A total of 93 adult cancer patients were included in the study. A majority of patients (79%) were prescribed opioid analgesic, mainly morphine, before methadone introduction. The initial daily dose of methadone ranged between 5 and 22.5 years and in the vast majority of the patients 5 mg, divided in two daily administrations. A good analgesic effect, with decreased pain, was reported in 60% of the patients. No severe side effects were reported. Conclusions: In this study, methadone as a primary opioid was used with a good analgesic effect for cancer pain in a low-resource setting. Indication for methadone was mainly uncontrolled pain with a regular opioid treatment. No severe adverse effects were reported. Further research and prospective studies are needed on methadone treatment in low-resource settings to establish the robust guidelines to support prescribing physicians.
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Palliative care in duchenne muscular dystrophy: A study on parents' understanding p. 146
Arun Sadasivan, Manjusha G Warrier, Kiran Polavarapu, Veeramani Preethish-Kumar, Meera G Nair, MS Keerthipriya, Seena Vengalil, John Vijay Sagar, Thomas Kishore, Atchayaram Nalini, Priya Treesa Thomas
Introduction: Duchene muscular dystrophy (DMD) is a neuromuscular disease of childhood, which has clear progression. The international standardized care guidelines for DMD suggest that palliative care is essential for the affected children. Objective: To explore the parent's understanding of palliative care services available for children with DMD and the challenges faced by them in utilizing the same. Methods: A cross-sectional qualitative exploratory study was conducted among six families of boys diagnosed with DMD. A semi-structured interview guide with prompts was used to conduct in-depth interviews which lasted for an average of 1 h. Thematic analysis was done to identify the pattern or themes. Results: The major themes identified were “palliative care, living with DMD, awareness about palliative care services and challenges.” Awareness about palliative care services is the dominant theme identified as influencing rest of the experiences narrated by the parents of children with DMD. Discussion: Integration of palliative care services from an early stage of the illness can help the child to make transition from one stage to another stage of the illness. To ensure the utilization of the available palliative care services, there is a need to create awareness about it among the general public. Conclusion: Introducing the concept of palliation of symptoms and ensuring quality of life of the child with DMD by accessing the available services can aid the parents to reach out for help for their child.
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Preparedness and capacity of indian palliative care services to respond to the COVID-19 pandemic: An online rapid assessment survey Highly accessed article p. 152
Cheng-Pei Lin, Sabah Boufkhed, Asha Albuquerque Pai, Eve Namisango, Emmanuel Luyirika, Katherine E Sleeman, Massimo Costantini, Carlo Peruselli, Irene J Higginson, Maria L Ekstrand, Richard Harding, Naveen Salins, Sushma Bhatnagar
Background: COVID-19 has been causing a high burden of suffering for patients and families. There is limited evidence on the preparedness of Indian palliative care services for the pandemic. Aim: This study aimed to assess the preparedness and capacity of Indian palliative care services in response to the COVID-19 pandemic. Methods: A cross-sectional online survey was developed based on prior evidence and international health regulations. It was emailed to the Indian Palliative Care Association members and investigators' professional networks in India. One participant per palliative care service was requested. Descriptive analysis was used. Results: Representatives of 78 palliative care services completed the survey. Three in four services had COVID-19 case definition and adapted their protocols for infection control (75%). About half of the services (55%) reported concerns about achieving appropriate hand hygiene in the community. More than half of the services (59%) had capacity to train nonspecialists for symptom control and psychological support. About half of the services reported that they had plans to redeploy staff (56%) and resources (53%) in the case of outbreaks. Two-fifths of the services used paper records to store an updated contact list of staff (40%) and did not have designated focal contacts for information update (40%). Staff anxiety related to personal infection risk and family care was relatively high (median score = 7 on a 1–10 scale). Conclusion: We recommend the following resource allocation to enable palliative care services to support the Indian health system in delivering essential care in this and future pandemics: (1) infection control, especially in the community; (2) training using existing clinical protocols to strengthen palliative care across the health system; and (3) redeployment plans.
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High-dose continuous infusion of tranexamic acid for controlling life-threatening bleed in advanced cancer patients p. 172
Shrikant Atreya
Life-threatening bleeding although uncommon in palliative care is associated with significant distress among patients and family. The current guidelines emphasize the need for identification of a patient with early signs of bleeding and providing assurance and comfort care to patients and family in case of an event. There is very little known about the role of high dose of tranexamic acid, a lysine analog in controlling the bleeding irrespective of the underlying pathophysiology of the bleed. Tranexamic acid is known to competitively block the lysine-binding site of plasminogen and thus inhibit the activation of plasminogen to plasmin and at high-concentration tranexamic acid noncompetitively blocks plasmin, thus inhibiting the dissolution and degradation of fibrin clots by plasmin. Here, we discuss two case studies of patients who presented with massive bleed from the tumor site. With a high dose of continuous intravenous infusion of tranexamic acid, there was a complete arrest of the bleed with a reduction in the requirement for blood transfusion.
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Collusion: The facade and its implications on total pain management in palliative care p. 176
Bincy Mathew, Bidhu Kalyan Mohanti, Saipriya Tewari, Vedant Kabra, Pushpinder Gulia, Peush Bajpai, Anusheel Munshi
Collusion is an unharmonious bond between the doctor and a patient or between patients and caregivers. This case report exemplifies one such experience and highlights the hurdles we face when dealing with collusion. A 31-year-old woman was diagnosed with rectal carcinoma during her pregnancy and underwent diversion colostomy (for intestinal obstruction) followed by neoadjuvant chemoradiation after delivery. Later, she was diagnosed with metastatic disease and was under palliative care. The family always had a negative association with cancer and chose to withhold information from the patient throughout the treatment trajectory. Collusion and lack of information can be a factor for persisting total pain. While caregivers desire to protect the patient from the distress of a life-limiting diagnosis, invariably it causes more anguish than comfort. Oncology professionals need to consider collusion as part of our sociocultural fabric and develop a strategy to negotiate and improve the care.
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Sequential supraclavicular brachial plexus and stellate ganglion neurolysis for upper limb pain in metastatic breast cancer p. 180
Dhruv Jain, Titiksha Goyal, Anil Kumar Paswan, Nimisha Verma
Neuropathic pain in cancer can result in severe debilitation to a patient with limited treatment options. Interventional modalities like nerve destruction can provide relief but at the expense of motor paralysis. Sympathetic pain is often an undiagnosed and undertreated condition that may accompany cases of chronic pain. We describe a case of severe neuropathic pain in brachial plexopathy in a middle-aged woman caused by metastatic breast cancer that was managed by chemical neurolysis of brachial plexus. Residual pain was treated by neurolysis of stellate ganglion due to the presence of sympathetic pain. This case report highlights the importance of the dual nature of pain and its management by chemical neurolysis in severe refractory neuropathic and sympathetic mediated pain.
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Spirituality among the terminally ill in a rural hospice program p. 183
Brian W Jones
Rural populations are unique compared to their urban and suburban counterparts in relation to both healthcare mindsets and spiritual needs. Rural populations tend to be more religious, more accepting of death, and less likely to pursue aggressive care at the end-of-life. This research project looked at the utilization of chaplaincy services among a rural, southwestern hospice population. It also examined outcomes related to patient and family satisfaction surrounding spiritual themes. Results were compared to 1700 other hospice programs. Areas where there were significant statistical differences from benchmarks were highlighted. It appears that overall hospice satisfaction and assistance with feelings of sadness and anxiety could be related to increased spiritual utilization.
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Bayesian adaptive design scope of utilizing it for research in palliative care p. 186
Abhijit Nair, Praneeth Suvvari, Srinivas Shyam Prasad Mantha, Basanth Kumar Rayani
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