Oral Presentation

Incidence of Palliative Medicine Intervention and its Role in Emergency Department

Anurag Sarkar, Seema Mishra, Sushma Bhatnagar

AIIMS Delhi

Professor and Head of the Department

Introduction: Patients with acute and chronic life limiting illness generally visit the emergency department. Some have reversible conditions but others are at the end of life and usually don’t benefit from aggressive treatment. Hence an integrative approach is taken where palliation of symptoms rather than aggressive treatment is preferred.

Objective: To observe the frequency of palliative medicine review in patients who have expired at the emergency department and the role of palliative medicine in reducing distress of patients and family.

Methods: Retrospective electronic data of all cancer patients expired at AIIMS emergency were collected to analyse and compare the treatment related outcome. Incidences of palliative review, resuscitation and ventilation status were compared among patients who received palliative care and those who didn’t.

Result: Data of 27 patients were retrieved. Palliative referral was done for 3 patients, intubation and resuscitation were avoided in them. Out of the remaining 24 patients, 16 patients were both intubated and resuscitated while 8 received only CPR.

Conclusion: Appropriate knowledge of futility of treatment is essential, especially when a patient with chronic life limiting illness presents at the emergency. Timely referral may reduce distress to both patients and family and also the burden at the emergency. This will not only reduce distress of debilitating patients but also improve efficiency and quality of care to all patients who presents at the emergency. Hence it is important to have palliative medicine review for such patients and timely intervention by a palliative physician to prevent inadvertent intubation.

Tele monitoring as a tool for enhancing compliance to morphine prescription

Dr.Vidya N, Ms. Sunitha K S, Ms. Sunitha K S

Swami Vivekananda Youth Movement Palliative Care Centre Mysore

Introduction: The burden of serious health-related suffering is huge and can be alleviated by effective palliative care. Pain management plays a crucial role in improving the quality of life of such patients. Morphine is one of the essential narcotic drugs prescribed to relieve acute and chronic, moderate to severe pain. Compliance to morphine prescription at home has to be monitored critically yet a difficult task.

Aim: To understand the role of telemonitoring for enhancing compliance to prescription.

Material & Method: Patients with pain score of 7/10 and above were initiated on morphine under doctors’ supervision and discharged after explaining the dose. These patients are followed up through telephone calls once in a week with predetermined questionnaires and entered in Excel sheets.

Results: 77 patients - 563 calls by 6 nurses, good pain relief reported by 64/77 patients over the period of 6 months, suboptimal pain relief reported by13/77 patients (16%), 185 episodes of suboptimal (76 partial, 106 poor) pain relief - 32.8% of calls. Telephonic dose adjustment effective in 27-9.3%, home visits required for 11 episodes, 12 linked to nearby care provider and 137 needed visit to palliative centre.

Conclusion: Telemonitoring aims at continuum of care at patient comfort, cost effective, convenient for caregiver and the patient. Telephone call as a reminder for adherence, early identification and management of breakthrough pain & management of adverse effects. Arranging refills - indenting, procuring and stocking of morphine. Retrieval of morphine from expired patients.

Palliative cancer care services offered to cancer patients during the COVID-19 pandemic: Service evaluation from a tertiary care cancer centre in Northern India

Punita Lal, Shagun Misra, Neeraj Rastogi, Anshika Gupta, Vishwas Kapoor and Shaleen Kumar

Department of Radiotherapy, SGPGI, Rai Bareli Road, Lucknow-226014

Background: COVID-19 pandemic was a huge and an unprecedented strain on the health care system. Getting medical help was difficult. Although the government allowed cancer care to continue even during the lockdown phase, but it was difficult for patients to travel for treatment, especially during the advanced/terminal phases. We looked into the changing paradigm and some of the quantifiable aspects such as the impact of the pandemic on palliative cancer care services, tailoring of treatment at an individual level etc, and report our findings.

Methodology: This was a retrospective audit of the year 2020. For the purpose of analysis, the year was divided into 4 phases of 3 months each. The impact of pandemic on footfall in palliative cancer care clinic, changing paradigms of care and therapeutic alterations made at an individual level were studied.

Results: On average, 150-200 patient visits were routinely catered to in the palliative cancer care clinic in each quarter during pre-pandemic times. During the lock down the visits dropped to 56 and as the lock down opened it rose to 83 visits in the next quarter. Patient reporting to the department, their demography was similar to pre pandemic time. A paradigm shift was observed in palliative care services provided - physical visits reduced (93% to 50%) and telephonic consultations suddenly gained wide acceptance (11% to 50%).

Conclusions: Palliative cancer care services were impacted significantly during the pandemic. Telephonic consults gained wider acceptance during this period.

Nutritional triaging of head and neck cancer patients presenting first time to tertiary palliative care centre in India

Ajit Raj Verma, Dr. Puneet Rathore

All India Institute of Medical Sciences, New Delhi

Introduction: As oral cancers contribute to major chunk of head and neck cancers and therefore affects oral intake in patients resulting in nutritional deficiency hence a commonly encountered problem in head and neck cancer patients.

Aim: Nutritional triaging of head and neck cancer patients presenting first time to tertiary palliative care centre in India to provide appropriate symptom management and nutritional interventions.

Material & Method: Our study was a prospective observational study of 74 patients suffering from head and neck malignancy presented first time to Palliative Medicine department, AIIMS, IRCH, Delhi. Patients were provided with participation information sheet and recruited based on inclusion criteria. Triaging was done using PG-SGA nutritional assessment tool.

Results: Screening was done for total of 74 patients. In 74 patients, 7 were suffering from carcinoma tonsil, 23 from carcinoma buccal mucosa, 6 from carcinoma alveolar complex, 1 from carcinoma larynx, 27 with carcinoma tongue and 10 with carcinoma oropharynx. All were screened using PGSGA nutritional assessment tool on their first visit to department. After compiling the data from all the patients it is found that all the patients were having total PG-SGA score above 9. Triage based on PG-SGA score->9 Indicate critical need for improved symptom management/or nutrient intervention options.

Conclusion: It was concluded that almost all the patients with head and neck malignancy requires a critical need for improved symptom management/or nutrient interventional options from their first visit to palliative medicine department in India.

Development of a question prompt list for indian cancer patients receiving radiation therapy treatment and their primary family caregivers

Dr Shweta Chawak¹, Dr Mahati Chittem², Prof Phyllis Butow³, Dr Haryana Dhillon⁴

¹Indian Institute of Technology Hyderabad

²Associate Professor, Indian Institute of Technology Hyderabad, India

³Professor, Centre for Medical Psychology & Evidence-based Decision-making (CeMPED), University of Sydney, Australia

⁴Associate Professor, Centre for Medical Psychology & Evidence-based Decision-making (CeMPED), University of Sydney, Australia”

Introduction: Question prompt lists (QPL) is an intervention that addresses patients’ and primary family caregivers’ (PFCs’) unmet needs by facilitating question-asking behaviour.

Aim: To develop two QPLs, one for Indian cancer patients undergoing radiation therapy (RT) and other for their PFCs.

Methods: The study comprised three phases: (1) A qualitative study was conducted with patients (n=65) and PFCs (n=39) to understand their information needs, queries and concerns regarding RT, (2) draft QPLs were developed using conventional content analysis and translated into Hindi and Marathi (two Indian languages) and (3) readability analysis and feedback was sought from patients (n=22), PFCs (n=26) and medical staff (n=20) regarding the acceptability and utility of the QPLs.

Results: In Phase I, two themes were identified: (i) Questions patients and PFCs asked their physician and (ii) questions patients and PFCs did not ask their physician but wanted to know more about. In Phase II, list of questions was generated and several iterations were carried out, the draft QPLs were finalised and translated using EORTC guidelines. In Phase III, most patients and PFCs reported the QPLs were easy to read, they did not find it difficult to ask the physician. Conversely, medical staff reported concerns that the patients may find it difficult to discuss the questions with their physician.

Conclusion: This study produced QPLs for Indian cancer patients and their PFCs. Participants reported a need for the QPL and recognised its benefits. However, patient-PFCs felt the physicians should be responsive, suggesting a need for an oncologist-led QPL.

Parental perspective in Paediatric palliative care in India: A systematic review of literature using the PRISMA method

Rajashree Srivastava, Dr. Shikha Srivastava

Galgotias University

Introduction: Research in parental perspectives are pivotal in gaining understanding of parents’ experiences, issues, concerns and attitude in paediatric palliative care which affects their decision making. However only a limited number of such studies have included the first-person perspective of parents. The aim of this article is to understand the contribution of previous research on parental perspectives in paediatric palliative care.

Material & Method: A systematic review of studies was conducted. PubMed and Indian Journal of Palliative Care were searched where studies published within 10 years dating from 2010 to 2020 publication date were reviewed. Eligible articles were research articles that included the perspective of parents of children with life-limiting illnesses.

Results: We selected 9 research articles for review, where 7 key themes emerged; psychological perspective, parental concerns, parental needs, parental attitude, spiritual perspective, cultural perspective and financial perspective, based on which the articles were reviewed according to their reporting of these key themes.

Conclusion: This review highlights requirement of more research into parental perspective if possible, covering all key aspects along with additional research in cultural perspective and development of validated tools, checklists and psychometric questionnaires for the assessment of these perspectives in various domains: Spiritual, financial, psychological, cultural and social.

The Impact of COVID-19 on family members of COVID-19 positive patients – A Qualitative Study

Mamta Parihar, Dr. Devesh Gupta

PhD scholar (Geetanjali Medical and Health university, Udaipur. Rajasthan) RNRM, M.Sc. (N) District Govt. Hospital Paota, Jodhpur, Lecturer Govt. College of Nursing, Jodhpur (Rajasthan) India (mamtaparihar2011@gmail.com)

Introduction: The COVID-19 pandemic has shaken the whole world from the core. We faced unexpected wavering and the aftermath of the virus spread which proved to be unpredictable.

Aim: The study aimed to assess the impact of COVID-19 on the family members of COVID-19 positive patients.

Methodology: A qualitative research design was used the study done at the help desk of a government hospital in Rajasthan. 30 family members of COVID-19 positive patients were selected with simple nonprobability convenient sampling techniques up to the data saturation point. Data were collected with the help of a direct semi-structured interview schedule. Overall, 6 categories of themes and 14 sub-theme clusters emerged from in-depth discussion with family members and their life experiences. The analysis was done with the help of thematic qualitative analysis method for verbatim (transcripts) and documented responses of the participants.

Results: The study revealed that family members who had to assist their relatives during hospitalisation were suffering from psychological distress and living in a period of uncertainty. This difficult time produced dire consequences for them in almost all the spheres of life. It gravely affected family’s economic, social and mental conditions. Obvious positive effects observed on the environment, adopting health habits and strengthened personal bonding among family members.

Conclusion: Policymakers can harness concerted efforts with adequate plan and policies for aiding in a strong psychological support for family members to combat the after-effects of the deadly virus along with real-time patient management.

The role of faith-based hospitals in supporting palliative care delivery in India through the COVID-19 pandemic: An interview study

Jenifer Jeba Sundararaj, Ashita Singh,

Ruby Angeline Priscilla S, Priya John, Savita Duomai, Daniel Munday Kirsty J Boyd, Liz Grant, Ruth Powys,

Scott A Murray.

Christian Medical College Vellore

Introduction: COIVID-19 pandemic has challenged palliative care (PC) services globally. We studied its impact on PC patients, challenges faced by PC services in faith-based hospitals (FBHs) and how services adapted from first to second wave.

Methods: In-depth interviews were conducted with health-care professionals (HCPs) from FBHs serving rural and urban population across India. Thematic analysis was conducted.

Results: Ten interviews were conducted, six and four during first and second wave of COVID-19 pandemic respectively. HCPs described how at the start of pandemic, many feared COVID-19, with some believing it was a foreign disease limited to hospitals. Migrant workers struggled, many local health services closed and cancer care was severely affected. During the second wave access to and availability of services improved. During both waves FBHs provided care for non-COVID patients, earning community appreciation. For HCPs, first wave entailed preparing and training; second wave was frightening with scarcity of hospital beds, oxygen and many deaths. 7/10 FBHs provided COVID-19 care, rest referred to COVID-19 designated hospitals. PC teams adapted services providing teleconsultations, triaged home visits, delivered medications, food at home, did online teaching for adolescents, raised funds. Dedicated teamwork, staff care, quick response and adaptations to community needs, building on established relationship with communities were strengths of FBHs service provision. By defining and redefining quality using a PC lens, FBHs strengthened patient care services.

Conclusions: FBHs remained open and continued providing consistent good quality person-centred care to all. Novel approaches were adapted to overcome challenges, often achieving good outcomes despite limited resources.

Ethics approval: IRB Min No:13134 (OBSERVE) dated 22/7/2020

Funding: Nil.

Improvement in knowledge and attitude following End of Life Nursing Education Consortium (ELNEC) training among nursing students

Mamta Parihar, Dr. Manoj Kamal, Arvind Kumar Sharma, Ramswaroop Garva

Dr. S.N. Medical College Jodhpur

Introduction: The early identification, impeccable assessment and holistic care in term of symptom management, physical, psychosocial and spiritual care of the patients suffering with cancer is the pre-requisite to improve quality of life. Decision making about the treatment plan can be difficult for patient, relatives and health care professionals. Although, palliative care was integrated in National health policy but limited knowledge precludes the benefit of this. Hence, this questionnaire-based study was planned to assess in improvement in knowledge and attitude following End of Life Nursing Education Consortium (ELNEC) training among nursing students.

Methodology: Total 200 Nursing Students & Staff were enrolled in this study (From Government Nursing College Jodhpur, Geetanjali Hospital Udaipur and AIIMS Hospital Jodhpur). The knowledge of participants assessed by pre-test questionnaire. A three days training programme was imparted to all the participants. The change in knowledge and attitude of participants were assessed by post-test questionnaire. The statistical analysis was performed with SPSS 22.0. The P value <0.05 considered significant.

Result: In pre-test 52.3%, 43.84% and 1.53% participants were having inadequate, average knowledge and adequate knowledge respectively, while in post-test 65.38% participants having adequate knowledge, which was statistically significant (P= 0.000). The change in attitude towards patients and their family members were statistically significant following training (0.001).

Conclusion: The End of Life Nursing Education Consortium (ELNEC) training programme is effective modality to improve knowledge and change in attitude among nursing students. We recommend that nurse trainees and professionals should have the basic cognizance for pain and palliative nursing care, for the needs of patients and their families.

Key words: End of life nursing education consortium (ELNEC), Pain, Palliative Care management.

Impact of End-of-Life Care Nursing Education Consortium (ELNEC) on Knowledge and Attitude of Nurses’ in Palliative Care and Care of Dying in India

Gegal Pruthi, Dr. Mayank Gupta¹, Dr. Jyoti Kanwat², Karamjot Singh³

AIIMS, Bathinda

¹Department of Anaesthesiology and Critical Care, AIIMS, Bathinda, Punjab, India.

Email: idmayankgupta6682@gmail.com

²Assistant Professor, Department of Anaesthesiology and Critical Care, AIIMS, Bathinda, Punjab, India.

Email: idgopikanwat@gmail.com

³Karamjot Singh- Data Science Post-graduate student at University of Essex, UK, Email: karampruthi@gmail.com

Introduction: Palliative care (PC) training is conspicuously absent in Indian nursing education curricula which is an obstacle to deliver quality care at the end of life (EOL). This warrants the need to start structured educational programmes such as End of life care nursing education consortium (ELNEC). ELNEC aims to improve nursing staff knowledge and attitude in PC and EOL care, however the PC competency of nurses after such programmes has not been investigated in India.

Aim: The study aims to assess the impact of ELNEC on Indian nurses’ knowledge and attitude in PC and care of dying.

Material & Method: After approval from the institutional ethics committee and informed consent, this prospective study included 108 registered nurses. The study conducted a pre- and post-training questionnaire using Palliative Care Quiz of Nursing (PCQN) and Frommelt Attitude Toward Care of the Dying Scale Form B (FATCOD-B) to evaluate knowledge about PC and attitude towards EOL care respectively. Both the scores were assessed twice, one at the beginning and the other at the end of the programme.

Results: For PCQN, the mean total score increased from 8.45 ± 1.88 to 10.16 ± 1.89 (p = 0.0001). FATCOD- B scores also showed a statistically significant change showing a more positive attitude of nurses in care of dying.

Conclusion: According to the study’s findings, the ELNEC programme was effective in improving nurses’ knowledge and attitudes toward PC. Thus, it is desirable to include ELNEC programme in Indian nursing education curriculum to improve PC and EOL care services.

Stress and coping mechanisms for primary caregivers in a palliative care centre

Jyoti Inamdar, Dr. Sriharika

King George V Memorial

Introduction: Patients and caregivers referred to palliative care experience stress, due to the prolonged disease course, psychosocial and financial burdens. It is necessary to address the primary caregiver stress, to ensure their well-being which in turn optimises patient care.

Aim: 1. To evaluate the stress in primary caregivers were registered in the tele-consultation services. 2. To discuss coping strategies to overcome the stress encountered.

Methodology: 50 primary caregivers were identified from a single unit palliative care centre. A ‘Perceived Stress Scale’ obtained from open access public domain source, was administered to evaluate their stress. Individual and family counselling, self-care, distraction, avoidance, 4D principle, relaxation, motivational interviewing was administered telephonically for 3 sessions per caregiver once in every 7 days. The scale was administered pre and post intervention.

Result: Perceived stress scale for 50 primary caregivers. It was observed that pre interventional results showed 30% low, 50%moderate and 10% high stress level. Post interventional study of 45 caregivers showed 55.55% low, 33.33% moderate and 11.11% high stress level.

Conclusion: This study showed that there was a significant reduction in post interventional stress levels. Hence, analysing stress and providing coping strategies for the same is of great value for primary caregivers and is a very important aspect of palliative care.

To investigate the anxiety and depression among caregivers of cancer patients in the Delhi-NCR region, India

Shubhangi Rohidas Sarode, Dr. Anil Kumar, Subodh Kumar

AIMS New Delhi

Introduction: During the challenging time of COVID-19 pandemic, the oncology community faces extraordinary issues to enhance the mental health of people with cancer and their caregivers. The family caregivers of patients receiving comforting care experience high levels of anxiety and depression. There is a strong necessity to assess and treat depression and anxiety in caregivers of cancer patients to increase the quality of life.

Aim: The aim of the present study was to investigate the anxiety and depression among caregivers of cancer patients in the Delhi-NCR region, India.

Methods: The sample consisted of 127 caregivers of cancer patients. Participants completed Beck Anxiety Inventory (BAI) and Beck Depression Inventory (BDI). Descriptive statistics, as well as inferential statistics (the Pearson correlation coefficient), were used to analyse the obtained data in SPSS.

Results: The study revealed that the majority of caregivers were male (66.9%), also the majority of the cancer patients were male (61.4%). The mean ages of caregivers and patients were 33.28 ± 10.24 and 27.71 ± 21.47 years, respectively. Among all the cancer patients, 22% (n=28) were in age range of 1–5 years, 15.7% (n=20) were in age range of 6–15 years, 17.3% (n=22) were in age range of 16–25 years, 10.2% (n=13) were in age range of 26–35 years, 18.1% (n=23) were in age range of 36–50 years and 16.5% (n=21) were above 50 years old. 70.9% (n=90) had blood cancer. Female caregivers of the cancer patients were more anxious as compared to male caregivers and was not statistically significant with the gender of the caregivers (p>0.05). But, male caregivers of the cancer patients were more depressed as compared to female caregivers and was not statistically significant with the gender of the caregivers (p>0.05). Depression among caregivers has a strong positive correlation with anxiety among caregivers and is statistically significant at a 0.01 level of significance.

Conclusion: Female caregivers of the cancer patients were more anxious as compared to male caregivers whereas male caregivers of the cancer patients were more depressed as compared to female caregivers. Further investigation of the factors that may affect caregivers’ psychological state is required to better identify parameters that may predict it.

A review of paediatric palliative care programmes in low- and middle-income countries: utilising a strengths, weaknesses, opportunity and threats framework for analysis

Alexzandra Hughes-Visentin, Dr. Megan Doherty

University of Ottawa-Faculty of Medicine

Children’s Hospital of Eastern Ontario, 401 Smyth Rd Ottawa ON, K1H8L1, and Dr. Supriya Sarvode (St. Jude Children’s Research, Hospital Memphis, TN, USA

Introduction: Despite the recent inclusion of palliative care (PC) into the definition of Universal Health Coverage by the World Health Organization, access remains limited to over 20 million children in need who reside in low- and middle-income-countries (LMICs) (1-3).

Aim: This study analysed published data on paediatric palliative care programs in LMICs to identify the common barriers and successes to programme implementation and provision using a Strengths, Weaknesses, Opportunity and Threats (SWOT) analysis.

Material & Method: A literature search was conducted using PubMed and Global Health databases for articles pertaining to paediatric PC programs in LMICs. We identified 207 articles through database searches and 9 through hand searching. All articles meeting inclusion criteria were reviewed by two independent reviewers. The SWOT items were categorised into themes: Health Care Policy, Education and Research, Service Provision, Opioid Availability and Advocacy.

Results: 21 paediatric PC programmes were identified including four (19%) programmes in low-income countries, six (29%) programmes in lower-middle income countries and eleven (52%) programmes in upper-middle income countries. Common strengths included staff enthusiasm for PC continuing medical education and interdisciplinary care, whereas common weaknesses included staff burnout and home-care services. Common opportunities included increased funding support and integration of PC into local undergraduate and graduate medical curricula, whereas common threats included limited opioid availability and delayed referral due to low programme awareness.

Conclusion: This review provides insight into common successes and barriers experienced by paediatric PC programmes in LMICs, which is invaluable towards the implementation and expansion of current and future paediatric PC programmes.

References

1. Connor SR, Downing J, Marston J. Estimating the Global Need for Palliative Care for Children: A Cross-sectional Analysis. J Pain Symptom Manage. 2017;53(2):171–7.

2. Knaul FM, Farmer PE, Krakauer EL, Lima LD, Bhadelia A, Kwete XJ, et al. Alleviating the access abyss in palliative care and pain relief— an imperative of universal health coverage: the Lancet Commission report. The Lancet. 2018 Apr 7;391(10128):1391–454.

3. Universal health coverage (UHC) [Internet]. [cited 2019 Apr 4]. Available from: https://www.who.int/news-room/fact-sheets/detail/universal-health-coverage-(uhc)

Palliative care for newborns in India: Initial experiences of a hospital-based Neonatal Palliative Care team at a Tertiary Government Children’s Hospital – Retrospective study

Dr Mohammad Ishak Tayoob, Dr Spandana Rayala

Pain Relief and Palliative Care Society

Introduction: Neonatal palliative care is a multidisciplinary approach that acknowledges the families values, beliefs and perceptions is vital to provide seamless and inclusive care to the neonate and support families in the long term. Neonatal palliative care helps parents to cope when a diagnosis of life limiting illness is made. Losing a child puts caregivers under tremendous risk for developing psychological problems such as anxiety, depression, prolonged grief and poor quality of life.

Aim: Examine the referral patterns, characteristics and patterns of care for infants referred to a hospital-based neonatal palliative care team at a tertiary children’s hospital in Hyderabad, India.

Material & Method: 111 babies were included in the study who were referred to palliative care department for either symptom management, psychosocial support, communication, compassionate care. The study is a retrospective review of clinical records derived from palliative care forms of infants who received paediatric palliative care.

Results: Most common reason for referral to palliative care was communication of poor prognosis in 54 babies (48%). 34 (30%) babies referred for counselling and long term follow up care. 12 babies (11%) referred for wound dressing, 7 babies (6%) for compassionate extubation.

Conclusion: This study adds to the literature of various conditions that are referred to neonatal palliative care department, various ways palliative care team can be helpful in providing care to the baby as well as the family in need.

Assessment of quality of life of children with life limiting conditions in a tertiary care centre, Kalwa, Thane

Vijaya Kadam, Dr Vandana Kumavat

Tata Memorial Centre

Head, Dept of Pediatrics, CSMH, Kalwa

Introduction: Paediatric palliative care aims to improve quality of life of children and their families. Patient related outcome have become standard method to evaluate health related suffering. PEDSQOL 4.0 Generic Core Scale demonstrates good reliability. It consists of 4 domains: Physical, emotional, social and school functioning. Paediatric palliative care project of Department of Palliative Medicine, Tata Memorial Hospital at Chhatrapati Shivaji Maharaj Hospital, Kalwa has enrolled 512 children with various conditions like thalassemia, cerebral palsy, epilepsy. Interventions include management of physical, psycho-social and spiritual sufferings by multidisciplinary team. A study is being conducted with approval from Institutional Ethics Committee-Chhatrapati Shivaji Maharaj Hospital.

Aim: To assess the quality of life of children with life limiting by using PEDSQOL 4.0 Generic Core Scale.

Method: Children of age above 8 years who have been registered under Paediatric Palliative Care Project have been enrolled in the study. PEDSQOL 4.0 Generic Core Scale is administered at the first visit and then after every three months to the child/caregiver. Holistic care is provided by the multidisciplinary team. After the pandemic, the team is helping the families through telephonic calls. The care is being provided through liasoning with local doctors and NGOs.

Result: Around 65% children have shown improvement in social and psychological domains. 48% children have shown improvement in physical domain. Due to COVID pandemic, the scholastic domain could not be assessed.

Conclusion: Paediatric palliative care interventions are helping to improve the quality of life of children with life limiting conditions and their caregivers.

My diary- how i cope with my illness

Rita Moras, Dr Swapnali Kadam

Tata Memorial Hospital, Mumbai Associate Professor, CSMH, Kalwa

Introduction: Paediatric palliative care team would like to understand children’s understanding about disease, prognosis and how they cope. Children do not always prefer direct communication with the health care providers. Play and storytelling are some tools but in busy set up these methods may not be possible. Tata Memorial Centre has started a Paediatric Palliative Care project with Chhatrapati Shivaji Maharaj Hospital, Kalwa since June 2019. Around 500 children with life limiting conditions have been registered. Along with holistic management, play and diversion activities are routinely conducted. Diary writing is a qualitative research methodology to know the thoughts and feelings of child. This would help the team to enter in the world of child, in turn aiding in management of chronic condition.

Aim: To understand the perceptions of children with life-limiting conditions and find out how it affects them.

Method: Children above 8 years who could write were enrolled under this project. Consent, assent were taken prior to enrolment. Demographic and medical records were documented. They were prompts and cues. They were asked to write the diary and return it after 1 month. Narratives derived from diary was analysed.

Result: In the qualitative analysis of 12 diaries, it was noted that awareness about the illness was good. Children with neurological conditions have limitation in daily activities. Many have various hobbies. Concern for parents’ hardships was noted. Some children have faced social isolation which led to low self-esteem & less social interactions.

Conclusion: It is important to know child’s perspective about the disease so that interventions can be planned.

Child’s understanding of advanced cancer at a tertiary cancer centre when faced with advancing disease - a retrospective chart review

J Iyengar, A Ghoshal, MA Muckaden*, C Garg, J K Deodhar, A Damani, KV Ganpathy

Tata memorial hospital

Background and Aims: Many children, above 6 years, have some understanding of disease. Children might be unwilling to talk, due to various barriers. Understanding children’s perception about cancer is important to facilitate communication between the parent’s and the child.

Methods: Retrospective chart review of 34 case record forms were conducted after waiver of consent and IEC approval. Inclusion criteria: Patients referred to paediatric palliative care aged between 6 to 18 years. Data were analysed using thematic analysis.

Results: 23 were male and 11 were female. 5 major themes were identified as follows: 1) Child’s understanding of disease diagnosis and prognosis - not knowing what the disease is (4/34) and avoiding talking about it (1/34), guessing about the diagnosis and prognosis to knowing the exact diagnosis and prognosis (11/34), 2) Nature of communication between parents and the child - varied from either collusion on the side of the parents/the children, partial communication or complete and open communication. 3) Barriers to communication arose out of mutual concern, 4) Child’s means of support - relatives, siblings, friends (33/34) and coping by diversion (1/34) and 5) Interventions used during counselling - resource building for coping better, interpersonal communication and psychoeducation.

Conclusion: Communication between children suffering from advanced cancer and their parents/caregivers is a sensitive issue, and noncommunication is often due to mutual effort to shield each other from stress of difficult conversations. Lack of communication contributes to poor coping and forces children to seek comfort in other sources leaving parents distressed. Psychological interventions like resource building and psychoeducation are effective.

A roadmap to neuropathic pain management and quality of life in cancer patients

Dr Rabiya Abdu Razak Malayil, Dr Sushma Bhatnagar

AIIMS New Delhi

Introduction: The prevalence of neuropathic pain after cancer treatment has been estimated to be 68.1% in the 1^st month after administration of platinum or taxane based antineoplastic agents. These agents have increased the overall survival rate of cancer patients but with development of debilitating side effects and poor quality of life.

Aim: Improvement in neuropathic pain symptoms on VAS scale and SLANSS scale through gabapentin+supplementation and assessing the QOL using EORTC QLQC30

Material & Method: 100 patients with clinically diagnosed neuropathic pain were enrolled in study. After consent, screened for neuropathic symptoms using SLANSS and VAS scale and QOL was assessed using EORTC QLQ30. Two groups- gabapentin+supplementation and gabapentin alone group followed up at an interval of 3 and 6 months.

Results: 103 patients- (49) Ca breast, (35) Ca lung and (19) Ca ovary, followed up for 6 months. Mean age was 47.15 years, 72 females and 31 males. Comparative statistical analysis done between gabapentin treated cases and gabapentin+supplementation cases at 6 months. The S-LANSS (15.39+2.4) and VAS score (6.66+1.06) showed a significant improvement between gabapentin alone and gabapentin+Vitamin B12 at 6 months follow up. Likewise, the S-LANSS (15.4+2.39) and VAS score (3.33+1.31) showed a significant improvement between gabapentin alone and gabapentin + Vitamin B12+Vitamin D3 cases at 6 months follow up. The EORTC QLQ30 score at 6 months also showed significant improvement during follow up visits.

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Conclusion: Gabapentin+supplements shows significant improvement in reduction of pain as compared to gabapentin alone cases at 6-month follow-up, better QOL in patients with early interventions for neuropathic pain. Therefore, we can recommend the use of nutritional supplements along with gabapentin to mitigate the neuropathic pain symptoms in cancer patients.

Interventional analgesia in palliative medicine: a cross-sectional study on improvement in qol and reduction in opioid requirements

Dr Revathy Vijayakumar, Dr Sushma Bhatnagar

AIIMS New Delhi

Introduction: As per data released by WHO in 2019 almost 55% of patients undergoing treatment for cancer and 66% of patients with advanced metastatic cancer or terminal cancer suffer from cancer pain. Cancer pain causes suffering which encompasses not only physical but psychological suffering as well and thereby results in reduced quality of life in these patients. Thus, addressing the issue of pain management in these patients is of utmost importance. Procedural pain therapies is an important advance in chronic pain management, especially for patients under palliative care. It has gained attention for its potential to improve pain control and overcome the analgesic dose limiting side effects.

Aim: To see the reduction in usage of analgesics in patients’ post-intervention and also to see the improvement in QoL in these patients

Material & Methods: Retrospective cross-sectional study. Sample: Patients registered under palliative care at BRAIRCH, AIIMS DELHI and NCI, JHAJJAR who have underwent interventional pain therapies from October 2016 - October 2021. Data will be collected from existing medical records regarding patient’s details, diagnosis, opioid requirement before and after the procedure, pain relief based on NRS before and after procedure and improvement in Qol post procedure. QoL: Using EQ-5D-5L

Results & Conclusion: Data is under evaluation. Expected outcome is to quantify the pain relief in palliative care patients with chronic pain after interventional pain therapy.

Prevalence of nefopam use in palliative care patients, its indications and outcomes – an observational study

Arun Vivek, Dr Arun Vivek, Tutor, Dr Rajashree KC

Department of Pain and Palliative Medicine, Amrita Institute of Medical Sciences visiting consultant, R/N Ajisha

Introduction: Nefopam is a centrally acting, non-opioid, non-steroidal, analgesic (1). Its potency is at par with moderate doses of opioid analgesics (1). It does not cause respiratory depression nor has any anti-inflammatory effect and does not inhibit platelets (2). It is useful in patients with solid tumours, haematological malignancies, post operative pain and neuropathic pain (2, 3). Nefopam is used for its opioid sparing effect or when higher doses of opioids or NSAIDs cause toxic effects (4).

Aim: 1. To assess the prevalence of use of Nefopam in palliative care patients 2. To assess the indications for Nefopam use 3. To assess the analgesic efficacy of Nefopam

Study design: Observational study

Study setting: Amrita Institute of Medical Sciences, Kochi

Study tools: Numerical rating scale (NRS)

Sample size: This is an interim analysis and currently only 50 patients have been taken up for the data analysis

Inclusion Criteria: All patients on Nefopam from 18 years and above

Exclusion Criteria: Patients unable to report on NRS

Methodology: • After institutional ethical clearance and informed consent, pain score of the patients were assessed and documented before and after administration of Nefopam (24 and 48 hrs after) The subsequent result was then categorised as following: i. 0-2: Mild pain relief ii. 3-4: Moderate pain relief iii. > or = 5: Significant pain relief

Result: 1. In majority of the cases Nefopam was used as an adjuvant to opioids, and only in 15% cases Nefopam was used as a single drug without opioids 2. In almost 40% of cases, Nefopam was started due to contraindication of NSAIDS 3. Most of the patients either had nociceptive or mixed type of pain 4. Almost 66% cases had moderate pain relief, 50% of them being purely nociceptive 5. Majority of the patients have shown to have moderate to significant pain relief accounting to 83% of which 17% of patients had significant pain relief

Conclusion: Nefopam is a good analgesic as an alternative or as an add on in palliative care patients.

References

1. Heel RC, Brogden RN, Pakes GE, Speight TM, Avery GS. Nefopam: a review of its pharmacological properties and therapeutic efficacy. Drugs. 1980 Apr;19(4):249-67. doi: 10.2165/00003495-198019040-00001. PMID: 6991238.

2. Kim KH, Abdi S. Rediscovery of nefopam for the treatment of neuropathic pain. Korean J Pain. 2014 Apr;27(2):103-11. doi: 10.3344/ kjp.2014.27.2.103. Epub 2014 Mar 28. PMID: 24748937; PMCID: PMC3990817.

3. V Subramaniam A, Salem Yehya AH, Oon CE. Molecular Basis of Cancer Pain Management: An Updated Review. Medicina (Kaunas). 2019;55(9):584. Published 2019 Sep 12. doi:10.3390/ medicina55090584

4. Kim S.Y., Huh K.H., Roh Y.H., Oh Y.J., Park J., Choi Y.S. Nefopam as an adjunct to intravenous patient-controlled analgesia after renal transplantation: A randomised trial. Acta Anaesthesiol. Scand. 2015;59:1068–1075. doi: 10.1111/aas.12519.

Stroke: through the perspective of a palliative care nurse

Mrs. Mudita Yadav, Mrs. Rupali Malwadkar, Dr. Mohamed Adnan Khan

Sukoon Nilaya Palliative Care Center

Introduction: Stroke is a condition that checks all the boxes for implementing palliative care (PC) as defined by the WHO. There is a great need of palliative care in stroke, with a key contribution of the nursing team. An observational study was carried out to highlight the role of palliative nursing care in stroke patients in a single unit in an urban setup and describe the interventions done and the results observed.

Aim: 1 Recognising the symptoms in patients suffering from stroke. 2 Review and implementation of the nursing practices in palliative care in stroke.

Methodology: 15 patients with stroke were recognised, their records and interventions done were reviewed. Modified Rankin Scale (mRS) and Edmonton Symptom Assessment System (ESAS) were used to assess the results.

Results: Out of the 15 cases selected, 2 expired and the remaining 13 showed significant improvements in mRS and ESAS indicating satisfactory rehabilitation and symptom alleviation. Interventions like administering medications, wound dressing, feeding, hygiene, bowel/ bladder care, positioning, seeking timely references from specialists, communicating and self-care training greatly enhanced the quality of life of the patients.

Conclusion: A nurse’s role in stroke recovery includes assessment, identification, monitoring, administering treatment, training and rehabilitation. It was observed that palliative nursing in stroke remarkably impacted the quality of life of a patient, hence there is a great scope for palliative care nursing in stroke patients.

Assessment of palliative care needs in people living with hiv/aids (PLWHA) in a tertiary care setting in South India

Dr. Prinu Jose, Dr. Pankaj Singhai, Dr. Sindhu H Manjunath, Dr. Naveen Sulakshan Salins, Dr. Muralidhar Varma, Dr. Kavitha Saravu

Kasturba Medical College, Manipal

Introduction: In India, as per HIV Estimation 2019 report, there are around 23.48 lakh PLWHA. Even though retro positive patients require palliative care (PC) for physical and psychological problems, there is limited baseline information on their symptom burden and PC requirement in low-income settings.

Aim: To assess the burden of physical symptoms and unmet palliative care needs in PLWHA in a tertiary care setting.

Material & Method: A cross sectional study of PLWHA presenting to the retroviral disease clinic was conducted over a 6 months (January 2019-June 2019). Supportive and Palliative Care Indicators Tool for a Low-income Setting (SPICT-LIS) and Edmonton Symptom Assessment System-Revised (ESAS-R) were utilised. Cross tabulation, Chi-square and T test were used for bivariate analysis.

Results: Among 97 patients who participated, 61.9% belonged to the age group of 45-64 years. The total mean ESAS-R scores was 20.38 ± 17.07 and 42.26% reported severe symptoms. The most common of the severe symptoms were tiredness, lack of appetite and depression. As per the SPICT-LIS tool, 43% of patients were found to require PC. Majority had a poor performance status and 23% were depending on others for care. On comparing the ESAS-R with SPICT-LIS criteria, there was a significant association between symptom burden and palliative care requirement [p value < 0.05].

Conclusion: PLWHA have a substantial symptom burden and their PC needs are often unmet. Integration of PC services with antiretroviral treatment is imperative for enhancing the quality of life.

Perspective of respiratory physicians towards need and integration of palliative care in advanced respiratory diseases

Dr. Shrikant Atreya, Dr. Jenifer Jeba, Dr. Chaitanya Patil, Dr. Rajam Iyer, Dr. DJ Christopher, Dr. Sujeet Rajan

Tata Medical Center, Kolkata

Introduction: Patients with chronic life limiting or advanced respiratory disease often suffer from high symptom burden requiring palliative care to alleviate symptoms, improve quality of life and restore human dignity.

Aim: The present study explored the perception of respiratory physicians and their current practice of integration of palliative care for adult patients with chronic advanced respiratory diseases.

Material & Method: An exploratory survey method using Google Survey forms and SurveyMonkey were emailed to respiratory physicians between December 2020 and May 2021.

Results: 172 respiratory physicians responded to the survey. Most (n=153; 88.9%) respiratory physicians perceived integration with palliative care early on in the disease trajectory of advanced respiratory disease as beneficial. They did not feel referring to palliative care would lead to loss of autonomy in patient care (n=107; 62.21%) and sixty six (38.37%) strongly disagreed that the referral would result in a sense of abandonment or loss of hope in patients. Further exploration into the training needs of respiratory physicians revealed that 121 (70.35%) felt the need for training in pain and symptom management followed by end of life care and communication skills.

Conclusion: Respiratory physicians in our study had inclination towards palliative care integration into their routing clinical practice. Majority of them expressed the need for enhancing their skills in palliative care. Therefore, concerted efforts at integration and a mutual exchange of knowledge between respiratory physicians and palliative care physicians will ensure that patients with advanced respiratory disease are provided high quality palliative care.

Mapping the level of palliative care across the 29 states in India by using a pragmatic online survey method

Kahkasha, Burhanuddin Qayyumi

Homi Bhabha Cancer Hospital And Research Centre

Background: Although palliative care (PC) has been accepted to be one of the ‘best kept secret of health care’, it is gaining increased acceptance, policy impetus, greater funding and research grants in the recent years across the globe. However, there are tremendous disparities in the amount of PC give across various countries and also different regions amongst a single country like India.

Aim: Objectively quantify the level of palliative care available in the various states of India.

Methodology: We conducted an online questionnaire-based survey of experts from all the 29 states of the Indian Union. It had 10 basic modules with each having 6 levels of development in that aspect. Spearman correlation was done to compare the scores with the human development index, GDP and health coverage of each state

Results: The following categories (a.) no known palliative care activity, (b.) Capacity-building palliative care activity, (c.) Isolated palliative care provision, (d.) Generalised palliative care provision (e.) Palliative care services at a preliminary stage of integration to mainstream health care services, (f.) Palliative care services at an advanced stage of integration to mainstream health care services were seen in 11%, 23%, 46%, 13% and 6% respectively.

Conclusion: Only the state of Kerala and Tamil Nadu had high integration and provision for palliative care in India. The majority had isolated provision of care with regards to palliation and thus more needs to be done on the ground to fortify the palliative care in majority of the Indian states.

Institutional Ethics committee approval- Taken

‘Palliative care- where the patient needs it’ state wide training under nppc in Rajasthan

Dr. Shikha Jain, Dr Anjum Khan Joad

OHUM Healthcare Pvt Ltd

Bhagwan Mahaveer Cancer Hospital and Research Centre

National Programme for Palliative Care aims to train health care professionals, integrate palliative care in the National Health care system and improve access to opioids.

National Health Mission collaborated with Bhagwan Mahaveer Cancer Hospital And Research Centre to deliver 6 days Hands – On training for 320 doctors and nurses working in Govt. Hospitals from 2018-2020.

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MAP: 15 Training Sessions were covered for all the 34 districts.

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Participants were from all the levels – District Hospital, Community Health Centre, Primary Health Centre. The structured program included theory and hands on exposure and evaluation (case presentation, objective test to assess change in knowledge, attitude and perception of competence)

Challenges Morphine: - The mechanism of procurement is extremely complex in the government sector. Requests by trained doctors were not sanctioned by the superior officer (fearing diversion).

Implementation and Sustainability: The major hurdle in implementation is that the decision makers are transferred often. Sustaining the training and service is a challenge;

Manpower: HCWs working with the government have transferrable jobs and multiple responsibilities. To quote a participant ‘As the only senior HCW I am in charge of post mortems, drug store and clinical services’ The patient: HCW ratio is also a threat to growth

Knowledge: Misconceptions about Morphine among the HCWs cleared. Under the cancer control programme follow-up chemotherapy has been authorised at district hospitals, and our trained HCPs are now enabled to deliver supportive and palliative care more effectively (Cancer Control Programme data).

Services: In keeping with WHO principles of ‘delivering PC where the patients is’ PC is now available at the level of Primary Health Centre. Home care services were introduced into the small cities.

Lessons for future programmes: The implementation of palliative care can be assured if its services have some weightage in Quality Assurance Programme run by state govt. which provides ranking to govt. health institutions. Higher officials and policy makers involved in hospitals need to be oriented toward palliative care for better delivery.

The unmet need of palliative care in general health services in rural populations: an analysis based on gender

Dr. Prakash Fernandes, Dr. Saju Joseph, Dr. Pankaj Rajmane, Dr. Sirazul Sahariah, Dr. Swati Jadhav, Rasenjit Sakhare, Dr. Prasad Rane, Rajesh Jainjangde, Dr. Kranti Rayamane

Cipla Palliative Care and Training Centre (A unit of Cipla Foundation)

Cipla Palliative Care and Training Centre, Warje, Pune Email: saju.joseph@ciplacare.com

Cipla Palliative Care and Training Centre, Warje, Pune Email: pankaj.rajmane@ciplacare.com

Prince Aly Khan Hospital, Agha Khan Health Services, Mumbai Email: sirazul.sahariah@pakh.net

Prince Aly Khan Hospital, Agha Khan Health Services, Mumbai Email: swati.jadhav@pakh.net

Cipla Palliative Care and Training Centre, Warje, Pune Email: prasenjit.sakhare@ciplacare.com

Indian Cancer Society, Mumbai, Email: prasad.rane@pakh.net

Prince Aly Khan Hospital, Agha Khan Health Services, Mumbai Email: rjainjangde66@gmail.com

Cipla Palliative Care and Training Centre, Warje, Pune Email: kranti.rayamane@cipla.com

Introduction: WHO recommends improving access to palliative care (PC) as a core component of health systems, with an emphasis on primary health care. The National Health Policy launched by GOI in 2017 acknowledges the rising trend of NCD in the community and has recognised the role of PC services in enhancing the quality of care. There is however a concern about the inequity in access to PC services.

Aim & Objectives: Since there is lack of data on assessment of unmet need for PC in India. The present study tried to gather evidence towards the feasibility of converging PC within the public health system by documenting the unmet needs for PC in rural population. This paper explores how men and women reported their problems and needs of care based on the 33-item Problems and Needs in Palliative Care questionnaire (PNPC) tool.

Methods: A cross-sectional household survey was undertaken in 2 blocks of Pune district. The study was able to achieve (n=4935) random samples against an estimated (n=3242). Descriptive and inferential statistics (χ² test) were generated. The 33-item PNPC questionnaire was cross tabulated with gender to address the study objectives.

Results: Significant association across gender has been reported for daily activities, such as personal transportation (Male=346, 13%, Female=549, 21%; p<0.0001) and doing light household work (Male=190, 7%, Female=324, 12%; p<0.0001). Physical symptoms such as fatigue (Male=388, 15%, Female=662, 25%; p<0.0001), sleeping (Male=173, 6%, Female=289, 11%; p<0.002), shortness in breath (Male=261, 10%, Female=448, 17%; p<0.0001) and prickling or numb sensation (Male=279, 11%, Female=495, 19%; p<0.0001) were again considerably reported by females. Significant associations were also reported for domains of autonomy, social, psychological and spiritual issues as per PNPC.

Conclusion: The study highlights the importance of unpacking PC into the symptoms that males and females experience differently. As PC is not clearly understood, significant work is required, within public health systems groups and the larger community to describe and assist their understanding of what PC can do. Interventions must take into consideration and be accessible especially to women. Opening access issues with community and patients as stakeholders requires multi-level persistence and commitment on the part of governments, apex bodies and services themselves.

Can we integrate palliative care and symptom relief into primary health care? Lessons from an intervention study in bhor and purandar blocks of Pune

Dr. Kranti Rayamane, Dr. Saju Joseph,

Dr. Vivek Nirabhawane, Dr. Sirazul Sahariah,

Dr. Swati Jadhav , Akhila Koparkar, Dr. Prasad Rane, Rajesh Jainjangde, Dr. Prakash Fernandes

Cipla Palliative Care and Training Centre (A unit of Cipla Foundation)

Cipla Palliative Care and Training Centre, Warje, Pune Email: saju.joseph@ciplacare.com

Cipla Palliative Care and Training Centre, Warje, Pune Email: vivek.nirabhawane@ciplacare.com

Prince Aly Khan Hospital, Agha Khan Health Services, Mumbai Email: sirazul.sahariah@pakh.net

Prince Aly Khan Hospital, Agha Khan Health Services, Mumbai Email: swati.jadhav@pakh.net

Cipla Palliative Care and Training Centre, Warje, Pune Email: akhila.koparkar@ciplacare.com

Indian Cancer Society, Mumbai, Email: prasad.rane@pakh.net

Prince Aly Khan Hospital, Agha Khan Health Services, Mumbai Email: rjainjangde66@gmail.com

Cipla Palliative Care and Training Centre, Warje, Pune Email: prakash.fernandes@cipla.com

Introduction: Integration of palliative care (PC) into public health care systems is essential for the achievement of the SDG on universal health coverage. India has a national PC policy and a NCD programme. We therefore have the opportunity to provide a responsive health care system especially when both these are integrated.

Aim & Objectives: Intervention research was undertaken to assess the feasibility of a community-based PC intervention and support programme. ASHA workers were trained to identify symptoms using a checklist developed from Lancet Commission’s report on Serious Health related Suffering (SHS). The ASHA workers would then refer the patients to appropriate health facility and follow them at regular interval for treatment adherence and support. Community awareness activities regarding common SHS and PC were also undertaken.

Methods: Intervention study with quasi-experimental pre-post design was undertaken in rural Pune. Baseline and endline surveys were undertaken in general community by adapting the PNPC tool. The present paper report baseline-endline figures on 19 common SHS symptoms and its intensity recognised and reported by survey respondents. Household surveys of (n=4935) at baseline and (n=2960) at endline was achieved. Descriptive and inferential statistics (χ² test and Mann Whitney test) were generated to highlight the changes.

Results: The pre-post analysis of SHS symptoms and its intensity reporting showed significant differences amongst the surveyed households. Pain (Baseline=2261, 46%, Endline=2435, 82%; p<0.0001), weakness (Baseline=1098, 22%, Endline=1973, 67%; p<0.0001), fatigue (Baseline=1051, 21%, Endline=1812, 61%; p<0.0001), depressed mood (Baseline=456, 9%, Endline=511, 17%; p<0.0001), insomnia (Baseline=461, 9%, Endline=468, 16%; p<0.0001) to name a few were significantly reported post the intervention activities. Intensity reporting of symptoms pain (U=2655838.500; p<0.0001), weakness (U=941170.00; p<0.0001), fatigue (U=814561.500; p<0.0001), depressed mood (U=91000.00; p<0.0001) and insomnia (U=91810.500; p<0.0001) were significant in the surveyed households.

Conclusion: The objective of this intervention study was to provide practical guidance on integrating PC and symptom relief into public health care systems. The results indicate that the intervention may have contributed to a change in health seeking behaviour. The community members were more likely to report symptoms post the intervention. The implication of this study is intended, to assist anyone involved with planning, implementing and managing PC integration and symptom control in public health care systems.

Is distress screening critically important: among cancer patients?

Pragya Misra, Priyasi Surolia, Arati Hota

BMCHRC, Jaipur

Introduction: Distress is common among cancer patients, adversely affecting quality of life and cancer care. An Indian study reported that patients (23%) diagnosed with cancer (irrespective of type or stage of cancer) had moderate-to-severe levels of anxiety and depression on the hospital anxiety and depression scale, which led to emotional distress ^{1}

Aim: To examine the applicability and challenges in implementing distress thermometer among cancer patients.

Methods: A descriptive study was carried out at BMCHRC, Jaipur. Study was conducted with 593 patients. Randomised sampling was done. NCCN Distress Thermometer (DT) and problems list was used to screen distress. Demographic data have been collected by using separate form. Informed consent taken from the participants. Descriptive data analysis has been done to calculate R-Value, Mean, Median, Mode & SD.

Results: Among 593 patients 57.34% (340) were male and 42.66% (253) were female. Middle age adult (36-55 yrs) were 42.66% and older adult (>55yrs) were 41.82%. Majority of the patients were of CA head & neck i.e. 200 (33.73%) followed by breast cancer i.e. 80 (13.49%). Moderate to severe distress was in 38.62% (229/593) patients. Clinically significant distress were prominent among breast cancer patients i.e. 45% (36/80) followed by head & neck cancer patients i.e. 41% (82/200). Moderate to severe distress was high among higher educational group 40.41% (78/193) and illiterate 37.90% (58/153). The mean time duration of implementing DT with each patient was 9.7 minutes (SD ± 4.28). In the problem list physical distress (78.59%) and emotional distress (50.42%) were the most common compare to spiritual distress i.e. 5.90%. Age was significantly associated with distress (r- 0.03/p-0.44).

Conclusion: Distress really exists and clinical implication highlights the need to identify the distress among cancer patients. There is significant level of distress among them irrespective of stage of cancer and that should be assessed and addressed by using clinical practice guidelines. The study also documents a significant level of challenges regarding the duration of implementing DT, the language barrier i.e. the patient had trouble understanding the word ‘distress’. It was seen that patients who have scored high on DT may not necessarily need help. Multidisciplinary team is required for the management of distress symptoms.

Reference

1. Santre M, Rathod J, Maidapwad S. Prevalence of emotional distress in cancer patients. IOSR J Dent Med Sci. 2014; 13:09–14.

A comparative study to assess psychosocial and behavioural changes among health care personnel working in COVID and non-COVID areas during COVID 19 pandemic

Mrs. Parveen, Dr. Sujata Sathpathy

AIIMS, Delhi

Associate professor, psychology, AIIMS, Delhi

Introduction: COVID-19 is a new addition to the plethora of infectious diseases. Uncertainty about the course of the disease, absence of proper treatment, underdeveloped infrastructure, unstructured and frequently changing guidelines and improper planning left the whole health care system in an abysmal situation. Lockdown kind of situation added to the misery of people. All these factors have affected people as well as HCW economically, socially and psychologically.

Aim: This study is to assess and compare the psychosocial (perceived happiness, professional attitude), behavioural changes (depression, anxiety, burnout and subjective happiness) and the generalised ability of one to regulate behaviour under stressful situations among health care personnel who are working in COVID & non-COVID area.

Material & Method: Our study comprised 164 clinical nurses, out of which 110 were posted in the non-COVID area while 54 were in the COVID area. The data has been collected in the month of July-December 2020 and assessed for psychosocial factors and behavioural changes in both areas separately by using standardised and self-developed validated tools. The eventual outcome was analysed in terms of various factors including perceived happiness, professional attitude, depression, anxiety, burnout and subjective happiness, etc. utilising standard statistical methods.

Results: Self-administered tools have been provided to the clinical nurses and got filled from both the areas i.e. COVID and non-COVID of the AIIMS, Delhi. The significant difference is found in the level of depression, perceived discrimination and professional attitude between HCW working in COVID & non-COVID areas. Perceived discrimination and professional attitude are found to be significantly correlated with depression and anxiety in COVID and non-COVID areas. Generalised ability to regulate behaviour is found to be negatively correlated with anxiety and depression and related with a professional attitude in the non-COVID area. Burnout in the nonCOVID area is found significantly correlated with a professional attitude and negatively correlated with subjective happiness.

Conclusion: Perceived discrimination, profession and one’s ability to regulate behaviour effects the level of anxiety and depression. But surprisingly burnout was not found significant in any population.

A randomised control trial to assess effectiveness of pranayama on functional recovery, resilience and quality of life among advanced gallbladder cancer patients at AIIMS, Rishikesh

Ms. Kusum K Rohilla, Prof C Vasantha Kalyani,

Dr. Amit Gupta, Dr. Sweety Gupta, Prof Manoj Gupta

All India Institute Of Medical Sciences, Rishikesh

Introduction: Pranayama originated thousand years ago in Indian tradition, which is popular in creating healthy mind and body. Practice of pranayama creates balance, which further result in healthy mind and body. WHO also stated that has pranayama are valuable asset to improve physical activity and QOL among the most of cancer patients. Various pranayama based trials has reported improvement in physical and mental health of cancer patients. Studies reported that there is a significant reduction in stress, fatigue, anxiety and depression and improve lung capacity, sleep quality and overall well-being among cancer patients and their family members with pranayama.

Aim: The study aim is to evaluate the effectiveness of pranayama on functional recovery, resilience and quality of life among advanced gallbladder cancer patients at AIIMS, Rishikesh

Methods: The present study was a randomised control trial which was conducted in AIIMS, Rishikesh. Patients who are over the age of 18 and have advanced gall bladder cancer were included in present study. Patients were randomly assigned to groups based on their stage of advanced gallbladder cancer (Stages III and IV). Using a random numbers block generated with SEALED ENVELOP software, eligible and consenting patients were randomly assigned (1:1) to intervention group (IG) and control group (CG). The study’s participants were recruited between July 2019 and July 2021. CONSORT flow diagram, which depicts the flow of patient recruitment during the study period. A total of 150 patients were evaluated and then randomly assigned to the intervention group (IG) or the control group (CG), so recruitment rate was 98.3% (128/130×100).

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CONSORT diagram of study showing flow of participants throughout trail

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Pranayama effectiveness in terms of functional recovery by FIM scale, resilience by BRS scale and quality of life by EORTC QLQ BIL-21 questionnaire during pretest, 15 days, 1 month, 2 months, 3 months and 4 months.

In pranayama, bhastrika is an important breath exercise. Bhastrika entails a rapid and forceful inhaling and expiration powered by the diaphragm’s movement. An audible sound accompanies the passage of air. It energises the entire body and mind while also being beneficial to the respiratory and digestive systems. Under pranayama therapy, practical session was conducted for each patient regarding steps of bhastrika pranayama and instructed to practice it daily until 4 months. Each session lasts between 10-15 minutes.

Sudarshan Kriya yoga is unique breathing practice which involves cyclical breathing patterns and it has an impact on individual physical and psychological health. In pranayama therapy, practical session was conducted for each gallbladder cancer patient’s caregiver regarding steps of sudarshan kriya and instructed to practice it daily until 4 months. Each session lasts between 30-45 minutes.

The research protocol was approved by the Institutional Ethical Committee of AIIMS, Rishikesh with a letter reference number AIIMS/IEC/19/912. The study was registered under CTRI (Clinical Trials Registry of India) with a letter reference number CTRI/2021/01/030791.

Results: Results showed that patients and caregivers had good adherence to pranayama during whole study. Physical mobility (0.00*), resilience (0.00*), quality of life (0.003*) of patients and caregiver burden (0.00*) were significantly difference in control and experimental groups by following pranayama therapy for 4 months.

Good adherence* (n = 10)

Conclusions: According to the findings, pranayama reduces stress, exhaustion, anxiety and depression while also improving lung capacity, sleep quality and general well-being in advanced cancer patients and their families.

Assessment of symptom burden and quality of life in patients of malignant bowel obstruction in a tertiary care centre in India

Bikash Anand, Sushma Bhatnagar, Seema Mishra, Nishkarsh Gupta, Sachidanand Jee Bharti, Rakesh Garg, Vinod Kumar, Dr. Bikash Anand, Junior Resident

Dept. of Onco-Anaesthesia and Palliative Medicine, Dr. B.R. Ambedkar Institute Rotary Cancer Hospital, All India Institute of Medical Sciences, New Delhi, India

Department of Onco-Anaesthesia and Palliative Medicine, AIIMS, Ansari Nagar- 110029, New Delhi Dr. Bikash Anand; Junior Resident E-mail: bikash.jovial@gmail.com

Background: We have various medical and surgical managements regarding malignant bowel obstruction (MBO), but the studies assessing quality of life (QOL) and symptom burden in such patients is limited. Though there are some international studies on palliative cases in patients with MBO there is no study in Indian population The data regarding the QOL and symptom burden in such patients may help us in improving the treatment strategies. In this study, we analysed the symptom burden and QOL in patients age >18 years.

Objective- Primary objective: To access symptom burden and QOL in patients of MBO admitted in PCU tertiary cancer centre in India.

Secondary objective: To study early possibility of oral restoration in patients of MBO.

Methods: Patients presented to the PCU, were included in the study based on inclusion and exclusion criteria. The patients’ demographic profile, disease and treatment status was recorded. Functional status, QOL and symptom burden of patients were assessed using ECOG performance status score, EORTC-QLQ C30 and Memorial symptom assessment scale (MSAS) respectively. P-value <0.05 were considered statistically significant.

Results: A total of 44 patients were enrolled. The median age of the patients was 42.5 years ranging from 19 to 66 years. About 45.4% of patients presented with ECOG PS 3 followed by 43.18% with ECOG PS 2. The pain intensity measured at admission was mean of NRS 6.98 (SD 1.517) and at discharge was NRS 2.45 (SD 0.951) with p value <0.05. The global health status of the study population was found to be 31.25+20.58. In terms of functional scales, cognitive functioning scored highest with mean score being 74.24+22.29, lowest with physical functioning score being 41.81+27.63. We found that the GDI score was 1.93+0.65. The score for total MSAS, MSAS-PHYS and MSAS-PSYCH was found to be 2.44+0.44, 2.66+0.53 and 2.17+0.45 respectively. The most common, frequent, severe and distressing symptom was pain on MSAS followed by vomiting, lack of energy and difficulty sleeping. We were successful in early restoration of oral feeding in 42 patients (95.5%) at the time of discharge.

Conclusion: It was seen that patients with MBO have a high symptom burden, both physical and psychological, which lead to their poorer quality of life. We found that the most common, frequent, severe and distressing symptom was pain. Hence, it is very necessary to have good assessment of symptom burden to provide better QOL in such group of patient.

Quality of life improvement in chemotherapy induced peripheral neuropathy through selective nutritional supplementation

Dr Rabiya Abdu Razak Malayil, Dr Sushma Bhatnagar

Aiims New Delhi

Background : The prevalence of CIPN has been estimated to be 68.1% in the 1st month after administration of platinum (oxaliplatin/carboplatin) or taxane based antineoplastic agents (paclitaxel/docetaxel). The incidence of coasting phenomenon is seen in 60% of patients at the end of cancer treatment. These agents have increased the overall survival rate of cancer patients but with development of debilitating side effects like motor and sensory symptoms-numbness, paraesthesia, dysaesthesias, loss of balance, muscle weakness and burning pain which poses a great challenge for oncologists to warrant a reduction in the dosage or stop the chemotherapeutic course to mitigate CIPN symptoms. Therefore, it is of at most importance to develop prophylactic measures to prevent CIPN so that the patients can be cancer free and not suffer from debilitating neuropathy induced by cancer treatment.

Aim: Improvement in quality of life using EORTC QLQ30 and chemotherapy induced neuropathic pain symptoms on VAS scale and SLANSS scale through selective nutritional supplementation.

Materials and Methods: A total of 103 patients with clinically diagnosed CIPN were enrolled in the study. After taking informed written consent, EORTCQLQ30 and EORTC-CIPN20 were assessed along with a baseline workup of Vitamin B12 and Vitamin D3 levels. They were categorised into two groups – Deficient group and Non deficient group. Deficient group had been given gabapentin and the deficient component (either Vitamin B12 or Vitamin D3 or both) whereas the Non deficient group received only gabapentin as primary treatment. Both the groups were followed up at an interval of 3 months and 6 months with SLANSS,VAS scale, EORTC QLQ C30 and EORTC CIPN20.

Results: 103 patients were enrolled in this study- 49 cases of Ca breast, 35 cases of Ca lung and 19 cases of Ca ovary, they were followed up for a period of 6 months. Mean age was 43.94 years (range 28 to 68 years) consisting of 72 females and 31 males respectively. A comparative statistical analysis was done between gabapentin treated cases and those with gabapentin + nutritional supplementation cases at 6 months. The S-LANSS pain score (10.57 v 5.24, P &lt; .05) and visual analogue scale score (3.91 v 2.88, P &lt; .05) showed a significant improvement between gabapentin alone and gabapentin+Vitamin B12 at 6 months follow up. Likewise, the S-LANSS pain score (10.57 v 6.7, P <.05) and visual analogue scale score (3.91 v 3, P <.05) showed a significant improvement between gabapentin alone and GABAPENTIN + Vitamin B12+Vitamin D3 cases at 6 months follow up. Patients who received gabapentin+nutritional supplementation had a better quality of life in the 6 months follow up period .

Conclusion: The current data shows the treatment of neuropathic pain using gabapentin + nutritional supplements shows significant improvement in the quality of life and reduction of pain as compared to gabapentin alone cases at 6-month follow-up. Therefore, we can recommend the use of nutritional supplements along with gabapentin to mitigate the neuropathic symptoms in cancer patients.

Effective screening of palliative care outpatients for psychosocial distress and needs

Annie Jacob, Jenifer Jeba S., Susithra D.N, Ramu Kandasamy, Thotampuri Shanthi Prasoona, Bharathi Srilatha G., Shakila Murali, Thangarathi Celine, Terrymize I.*,

Karen Anderson** Palliative Care Unit, Christian Medical College, Vellore, Tamil Nadu, Institute of Palliative Medicine, Trichur, Kerala *, School of Arts and Humanities, Edith Cowan University, Western Australia**.

Christian Medical College

Introduction: Assessment and support of psychosocial distress and needs is a key component in palliative care provision. This can be compromised in busy outpatient settings for different reasons.

AIM: This quality improvement (QI) project aimed to increase the psychosocial assessment by 10% and 20% from the baseline 68% and 11% for new and repeat outpatients respectively.

Material & Method: The QI project was undertaken between April-September 2021. The A3 methodology was used for problem solving. Fish-bone analysis and Pareto charts were used to identify the root cause and develop key drivers; team discussions were used to develop interventions. The interventions included; development and use of a screening checklist to identify outpatients at risk for psychosocial distress, organisation of patient/ medical records flow, restructuring psychologists’ schedule, provision of designated space and patient follow-up based on distress scores. Reliability and sustainability were ensured with appropriate documentation and delegation of ownership to team members.

Results: The SMART goal to increase psychosocial assessments of repeat outpatients by 20% was achieved to more than 45%. Assessment for new outpatients was sustained around the baseline of 68%. Screening checklist, patient follow-up plan, having structured time/space and involvement of social worker in supporting patients with mild distress helped support more patients and families.

Conclusion: The A3 methodology of understanding process flow, identifying root causes, narrowing on the ‘vital few’ helped focus on key interventions that need to be in place to achieve the SMART goal. This process facilitated team discussions, learning QI methodology and in improving assessment of psychosocial distress.

Loneliness in the elderly; a geriatric palliative care approach to an underrecognised epidemic

Dr. Leena V Gangolli, Dr.Vinodkumar Gangolli

Sukoon Nilaya Palliative Care Centre, Mumbai

Introduction: Palliative care aims to alleviate distressing symptoms like pain, breathlessness, nausea, vomiting and social, psychological and spiritual distress caused by life limiting diseases like cancer, organ failure etc. Social isolation and loneliness are a form of social distress but are poorly recognised as distressing symptoms that need to be actively addressed. The chronically ill and the elderly are at higher risk for loneliness, which itself is a risk factor for higher morbidity and mortality.

Aim: To discuss the concept of loneliness in the context of geriatric palliative care and discuss approaches for its prevention and management.

Methodology: A case discussion describes the care of an elderly woman with early cognitive impairment who was socially withdrawn and refusing to eat.

Results: A series of non-pharmacological social interventions used by the care team resulted in her socially interacting as well as eating normally.

Conclusion: Psychosocial, non-pharmacological interventions to address loneliness in the elderly are an important component of geriatric palliative care.

At present, the advocacy, training and service provision in palliative care is aimed at alleviating distressing symptoms like pain, breathlessness, nausea, vomiting and social and psychological distress caused by the life limiting disease like cancer, organ failure etc. However, there is a need to recognise loneliness as a distressing symptom and risk factor for the elderly.

Interventions like elder clubs, geriatric day care, home based outreach, volunteer networks, neighbourhood or community groups are important interventions for geriatric palliative care and need to be initiated and supported.

Pattern of patients presenting with malignant spinal cord compression in palliative care unit at a tertiary care centre of india – an observational study

Dr Krishnapriya V

AIIMS Delhi 110049

Metastatic spinal cord compression (MSCC) is considered as one of the major debilitating health-burden and hence remains an oncological emergency. Due to lack of proper knowledge on early symptoms of onset of MSCC, early identification and prompt referral of patients is lacking in advanced malignancies with MSCC. The effect of early dexamethasone therapy and radiotherapy causing an early regain of neurological and autonomic dysfunction is not extensively studied.

Objective: The primary objective was to study the pattern of patients presenting with malignant spinal cord compression and the treatment outcome at the time of discharge. Also to find out the correlation of time of presentation with quality of life in these patients and the role of rehabilitative measures provided in palliative care unit.

Methods: An observational study of cancer patients admitted in department of palliative care unit B.R.A Ambedkar building AIIMS Delhi between August 2019 and March 2021 with malignant spinal cord compression >18 years. A total of 52 patients were assessed. Patients symptoms was assessed by NRS scale, ECOG performance scale, and neurological examination at time of admission. EORTC-BM 22 was filled for QOL assessment, and RADES risk score was assessed for overall survival estimate.

Results: The mean age of the study population was found to be 41 and gender distribution was 25 males (46.15%) and 28 females (53.85%). Most common was carcinoma breast 19.31% followed by lung cancer (13.46 %). 50% presented with less than 1 year, 25.45% developed MSCC between 1 year to 2 years since diagnosis and rest developed MSCC after 2 years since diagnosis. Average time from onset of symptoms to presentation was between 48 hours and 2 weeks. Only one patient out of 52 patients presented within 48 hours of onset of symptoms. Patients who received all the three treatment with (dexamethasone/RT/physiotherapy) were 11 (21.1%) and they also showed significant reduction in pain (NRS) using paired t test (p value – 0.00). 2 out of 11 patients had improvement in lower-limb power (p-value 0.478). and out of 13 patients who received RT 4 patients showed gain in power (p- value 0.088). Overall EORTC score was reduced from 69.46 to 59.17 (10.29).

Conclusion: Patients with MSCC have a high symptom burden, both physical and psychological, which lead to their poorer quality of life. Time since onset of symptoms and early treatment can benefit patients with MSCC.

Key words: Quality of life, Malignant Spinal Cord Compression, Performance status

A descriptive observational study to assess the level of distress in patients attending OPD

Dr Devdutt Sharma, Dr Ashwin Mathur, Dr Yogendra Singhal, Dr Gaurav Sharma

SMS Hospital Jaipur

Introduction: Understanding the profile of end users is a key input for designing a service. This study is to assess the magnitude of distress (practical, physical, family, emotional problems and spiritual/religious concerns) in patients attending OPD in Department of Palliative Medicine, SMS Hospital, Jaipur and evaluate the change in distress level after 15 days of treatment.

Methodology: All patients attending the OPD will be required to fill a questionnaire (NCCN Distress Thermometer and Problem List-Version 2.2020) on their first visit. This questionnaire will be analysed to assess their distress levels on their preliminary visit.

Sample size: Sample size is calculated at 95% confidence interval, assuming maximum variance and 50% satisfaction of services. At the relative error of 10% minimum sample size calculated is 400

Conclusion\Results: Significant level of distress was found in patients attending OPD in our setup. Addressing this along with their symptomatology will helping providing holistic care to them.

Key words: Palliative Medicine, NCCN Distress Thermometer

Clinical Characteristics and treatment outcome of Hypercalcaemia of Malignancy

Aviral Rastogi, Pragya Singh, Atokali Chophy, Ravi Roshan, Sharanya Nair, Namitha RS, Sweety Gupta, Deepa Joseph, Prof Manoj Gupta

All India Institute of Medical Sciences, Rishikesh

Background: Hypercalcaemia is the most common life-threatening metabolic disorder associated with malignancy, occurring in approximately 10-30% of patients with cancer. It occurs primarily in those with more advanced disease and is generally indicative of a poor prognosis.

Aim: To assess the occurrence of hypercalcaemia and its outcome in solid tumours.

Materials and Method: Retrospective analysis of cancer patients undergoing treatment from January 2020 to December 2021 was conducted in our department. Hospital records of patients hospitalised with hypercalcaemia and their clinicodemographic profile were analysed.

Results: 20 patients were found to have been treated for hypercalcaemia during this period. Median age of presentation was 49 years. Among them 8 were male and 12 females. 7 patients had breast cancer and 6 with head and neck malignancy. Among them only 5 had proven bone metastasis. 55% (11) were in moderate range of hypercalcaemia (12-14mg/dl). 5 had mild and 4 had severe hypercalcaemia. Most of the patients (60%) who had moderate and severe hypercalcaemia also had deranged KFT. 95% of the patients were receiving palliative treatment. Management was done with iv hydration and bisphosphonate. Average days of hospitalisation were 12.7. Presently out of these patients 4 had expired and 12 are lost to follow-up.

Conclusion: The incidence of malignancy related hypercalcaemia is generally associated with advanced stage disease and not exclusively associated with metastatic bone disease. This entity portends poor outcome and aids in discussing further goal of care.

The effectiveness of a planned teaching programme on knowledge of the care of dying patient among the staff nurses working in intensive care units

Avtar Bajwa¹*, Anjum Khan Joad¹, Vinita Jain¹

¹Bhagwan Mahaveer Cancer Hospital and Research Centre, Jaipur, India Background and Objectives: To assess the knowledge of staff nurses working in the Intensive Care Unit (ICU) towards care of dying patients and to assess the effectiveness of a planned teaching programme on knowledge of the care of dying patient among staff nurses working in the ICU.

Methods: A quasi-experimental design with pre-test post-test design was used to evaluate the effectiveness of planned teaching program for the study. The content validity of tool and planned teaching programme was established by five experts in the field of nursing. The pilot study was conducted on 30 items for its clarity, unambiguous content and feasibility on similar subjects. The main study was carried out on 60 staff nurses by non-probability convenient sampling technique. A structured knowledge questionnaire was administered for data collection to sixty nurses. The tool consists of 8 questions in sociodemographic variables and 30 in level of knowledge questionnaire. The demographic Performa: Age group, year of experience, type of basic nursing preparation, gender, religion. The following questions were also asked of each respondent: Previous education on death and dying, perception about prior education on the subject of death and dying, Have you had any personal experiences with death? Post test was conducted after conducting a planned teaching programme on care of dying patients

Results: Pre-test knowledge: 53.30% of ICU nurses had an inadequate knowledge (0-50%) and 16.70% moderate knowledge (51-75%) and 30.00% had adequate knowledge (76-100%). Post-test knowledge 30.0% of ICU nurses had an inadequate knowledge (0-50%) and 23.30% of had a moderate knowledge (51-75%) and 46.70% had adequate knowledge (76-100%). The overall mean knowledge score pre test was 19.85±2.97, post test was 25.58±3.22. The mean difference of pre versus post group in both hospitals was (5.733) and the t-ratio was statistically significant as the obtained value (10.11) is higher than the tabulated value (2.00) required for t-ratio to be significant at 0.05 level of confidence.

Conclusion: Nurses can help the patient and their family during the last hours, in grief and bereavement support. This period, leading to death is associated with physical, psychological, spiritual and social distress which can be alleviated by nurses who are working in ICU. This comprehensive care can be provided with excellent clinical skills, compassion and understanding which will reduce suffering as well as support and maintain patient’s dignity, respect and comfort. Teaching programmes for nurses need to incorporate comprehensive teaching about dying patients. Structured teaching programmes are effective in increasing the knowledge of ICU nurses. Through this ICU nurses will enhance their knowledge and fulfil all aspects of care of dying patients and deliver a better care and service.

Disclosure of Interest: None declared