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Indian Journal of Palliative Care
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©2022 Published by Scientic Scholar on behalf of Indian Journal of Palliative Care
Anurag Sarkar, Seema Mishra, Sushma Bhatnagar
AIIMS Delhi
Professor and Head of the Department
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 benet from aggressive treatment.
Hence an integrative approach is taken where palliation of symptoms rather
than aggressive treatment is preferred.
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.
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.
Data of 27patients were retrieved. Palliative referral was done for
3patients, 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.
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.
Dr.Vidya N, Ms. Sunitha K S, Ms. Sunitha K S
Swami Vivekananda Youth Movement Palliative Care Centre Mysore
e burden of serious health-related suering is huge and can
be alleviated by eective 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 dicult task.
To understand the role of telemonitoring for enhancing compliance to
prescription.
Patients with pain score of 7/10 and above were
initiated on morphine under doctors’ supervision and discharged aer
explaining the dose. ese patients are followed up through telephone
calls once in a week with predetermined questionnaires and entered in
Excel sheets.
77 patients - 563 calls by 6 nurses, good pain relief reported by
64/77patients over the period of 6months, suboptimal pain relief reported
by13/77patients (16%), 185 episodes of suboptimal (76 partial, 106 poor)
pain relief-32.8% of calls. Telephonic dose adjustment eective in 27-9.3%,
home visits required for 11 episodes, 12 linked to nearby care provider and
137 needed visit to palliative centre.
Telemonitoring aims at continuum of care at patient comfort,
cost eective, convenient for caregiver and the patient. Telephone call
as a reminder for adherence, early identication and management
of breakthrough pain & management of adverse eects. Arranging
rells - indenting, procuring and stocking of morphine. Retrieval of
morphine from expired patients.
Punita Lal, Shagun Misra, Neeraj Rastogi, Anshika Gupta,
Vishwas Kapoor and Shaleen Kumar
Department of Radiotherapy, SGPGI, Rai Bareli Road, Lucknow-226014
COVID-19 pandemic was a huge and an unprecedented strain
on the health care system. Getting medical help was dicult. Although the
government allowed cancer care to continue even during the lockdown
phase, but it was dicult for patients to travel for treatment, especially during
the advanced/terminal phases. We looked into the changing paradigm and
some of the quantiable aspects such as the impact of the pandemic on
palliative cancer care services, tailoring of treatment at an individual level
etc, and report our ndings.
is was a retrospective audit of the year 2020. For the
purpose of analysis, the year was divided into 4 phases of 3months each.
e impact of pandemic on footfall in palliative cancer care clinic, changing
Oral Presentation
Abstracts
paradigms of care and therapeutic alterations made at an individual level
were studied.
On average, 150-200patient 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. Aparadigm shi was observed
in palliative care services provided-physical visits reduced (93% to 50%) and
telephonic consultations suddenly gained wide acceptance (11% to 50%).
Palliative cancer care services were impacted signicantly during
the pandemic. Telephonic consults gained wider acceptance during this period.
India
Ajit Raj Verma, Dr.Puneet Rathore
All India Institute of Medical Sciences, NewDelhi
As oral cancers contribute to major chunk of head and neck
cancers and therefore aects oral intake in patients resulting in nutritional
deciency hence a commonly encountered problem in head and neck cancer
patients.
Nutritional triaging of head and neck cancer patients presenting
rst time to tertiary palliative care centre in India to provide appropriate
symptom management and nutritional interventions.
Our study was a prospective observational study of
74patients suering from head and neck malignancy presented rst 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.
Screening was done for total of 74patients. In 74patients, 7 were
suering 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 PG-
SGA nutritional assessment tool on their rst visit to department. Aer
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.
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 rst visit to palliative medicine
department in India.
DrShweta Chawak1, DrMahati Chittem2,
Prof Phyllis Butow3, DrHaryana 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”
Question prompt lists (QPL) is an intervention that addresses
patients’ and primary family caregivers’ (PFCs’) unmet needs by facilitating
question-asking behaviour.
To develop two QPLs, one for Indian cancer patients undergoing
radiation therapy (RT) and other for their PFCs.
e 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) dra 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 sta (n=20)
regarding the acceptability and utility of the QPLs.
In Phase I, two themes were identied: (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 dra
QPLs were nalised and translated using EORTC guidelines. In Phase III,
most patients and PFCs reported the QPLs were easy to read, they did not
nd it dicult to ask the physician. Conversely, medical sta reported
concerns that the patients may nd it dicult to discuss the questions with
their physician.
is study produced QPLs for Indian cancer patients and their
PFCs. Participants reported a need for the QPL and recognised its benets.
However, patient-PFCs felt the physicians should be responsive, suggesting a
need for an oncologist-led QPL.
Rajashree Srivastava, Dr.Shikha Srivastava
Galgotias University
Research in parental perspectives are pivotal in gaining
understanding of parents’ experiences, issues, concerns and attitude in
paediatric palliative care which aects their decision making. However
only a limited number of such studies have included the rst-person
perspective of parents. e aim of this article is to understand the
contribution of previous research on parental perspectives in paediatric
palliative care.
Asystematic review of studies was conducted. PubMed
and Indian Journal of Palliative Care were searched where studies published
within 10years 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.
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 nancial
Abstracts
perspective, based on which the articles were reviewed according to their
reporting of these key themes.
is 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, nancial, psychological, cultural and social.
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)
e COVID-19 pandemic has shaken the whole world from
the core. We faced unexpected wavering and the aermath of the virus
spread which proved to be unpredictable.
e study aimed to assess the impact of COVID-19 on the family
members of COVID-19 positive patients.
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. e
analysis was done with the help of thematic qualitative analysis method for
verbatim (transcripts) and documented responses of the participants.
e study revealed that family members who had to assist their
relatives during hospitalisation were suering from psychological distress
and living in a period of uncertainty. is dicult time produced dire
consequences for them in almost all the spheres of life. It gravely aected
family’s economic, social and mental conditions. Obvious positive eects
observed on the environment, adopting health habits and strengthened
personal bonding among family members.
Policymakers can harness concerted eorts with adequate plan
and policies for aiding in a strong psychological support for family members
to combat the aer-eects of the deadly virus along with real-time patient
management.
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
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
rst to second wave.
In-depth interviews were conducted with health-care
professionals (HCPs) from FBHs serving rural and urban population across
India. ematic analysis was conducted.
Ten interviews were conducted, six and four during rst 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 aected.
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, rst 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,
sta care, quick response and adaptations to community needs, building
on established relationship with communities were strengths of FBHs
service provision. By dening and redening quality using a PC lens, FBHs
strengthened patient care services.
FBHs remained open and continued providing consistent
good quality person-centred care to all. Novel approaches were adapted
to overcome challenges, oen achieving good outcomes despite limited
resources.
IRB Min No:13134 (OBSERVE) dated 22/7/2020
Nil.
Mamta Parihar, Dr.Manoj Kamal, Arvind Kumar Sharma,
Ramswaroop Garva
Dr.S.N. Medical College Jodhpur
e early identication, impeccable assessment and holistic
care in term of symptom management, physical, psychosocial and spiritual
care of the patients suering with cancer is the pre-requisite to improve
quality of life. Decision making about the treatment plan can be dicult for
patient, relatives and health care professionals. Although, palliative care was
integrated in National health policy but limited knowledge precludes the
benet 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.
Total 200 Nursing Students & Sta were enrolled in this study
(From Government Nursing College Jodhpur, Geetanjali Hospital Udaipur
and AIIMS Hospital Jodhpur). e knowledge of participants assessed by
pre-test questionnaire. Athree days training programme was imparted to all
the participants. e change in knowledge and attitude of participants were
assessed by post-test questionnaire. e statistical analysis was performed
with SPSS 22.0. e P value <0.05 considered signicant.
Abstracts
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 signicant (P= 0.000). e change in attitude towards patients
and their family members were statistically signicant following training
(0.001).
e End of Life Nursing Education Consortium (ELNEC)
training programme is eective 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.
End of life nursing education consortium (ELNEC), Pain,
Palliative Care management.
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
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). is warrants the need to start structured educational
programmes such as End of life care nursing education consortium
(ELNEC). ELNEC aims to improve nursing sta knowledge and attitude
in PC and EOL care, however the PC competency of nurses aer such
programmes has not been investigated in India.
e study aims to assess the impact of ELNEC on Indian nurses’
knowledge and attitude in PC and care of dying.
Aer approval from the institutional ethics committee
and informed consent, this prospective study included 108 registered
nurses. e 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.
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 signicant
change showing a more positive attitude of nurses in care of dying.
According to the study’s ndings, the ELNEC programme was
eective in improving nurses’ knowledge and attitudes toward PC. us,
it is desirable to include ELNEC programme in Indian nursing education
curriculum to improve PC and EOL care services.
Jyoti Inamdar, Dr.Sriharika
King George V Memorial
Patients and caregivers referred to palliative care experience
stress, due to the prolonged disease course, psychosocial and nancial
burdens. It is necessary to address the primary caregiver stress, to ensure
their well-being which in turn optimises patient care.
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.
50 primary caregivers were identied 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 7days. e scale was administered pre
and post intervention.
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.
Pre
Low 15(30%) 25(55.55)
Moderate 25(50%) 15(33.33%)
High 10(20%) 05(11.11%)
Tot al 50 45
is study showed that there was a signicant 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.
India
Shubhangi Rohidas Sarode, Dr.Anil Kumar,
Subodh Kumar
AIMS New Delhi
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. e family caregivers of
patients receiving comforting care experience high levels of anxiety and
depression. ere is a strong necessity to assess and treat depression and
anxiety in caregivers of cancer patients to increase the quality of life.
e aim of the present study was to investigate the anxiety and
depression among caregivers of cancer patients in the Delhi-NCR region,
India.
e sample consisted of 127 caregivers of cancer patients.
Participants completed Beck Anxiety Inventory (BAI) and Beck Depression
Abstracts
Inventory (BDI). Descriptive statistics, as well as inferential statistics (the
Pearson correlation coecient), were used to analyse the obtained data in
SPSS.
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 ±
21.47years, respectively. Among all the cancer patients, 22% (n=28) were
in age range of 1–5years, 15.7% (n=20) were in age range of 6–15years,
17.3% (n=22) were in age range of 16–25years, 10.2% (n=13) were in
age range of 26–35years, 18.1% (n=23) were in age range of 36–50years
and 16.5% (n=21) were above 50years 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.
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 aect caregivers’ psychological state is required to
better identify parameters that may predict it.
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
Despite the recent inclusion of palliative care (PC) into the
denition 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).
is 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 reats (SWOT) analysis.
A literature search was conducted using PubMed and
Global Health databases for articles pertaining to paediatric PC programs in
LMICs. We identied 207 articles through database searches and 9 through
hand searching. All articles meeting inclusion criteria were reviewed by two
independent reviewers. e SWOT items were categorised into themes:
Health Care Policy, Education and Research, Service Provision, Opioid
Availability and Advocacy.
21 paediatric PC programmes were identied 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 sta enthusiasm for PC
continuing medical education and interdisciplinary care, whereas common
weaknesses included sta 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.
is 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.
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. e Lancet. 2018Apr7;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)
DrMohammad Ishak Tayoob, DrSpandana Rayala
Pain Relief and Palliative Care Society
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.
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.
111 babies were included in the study who were
referred to palliative care department for either symptom management,
psychosocial support, communication, compassionate care. e study is a
retrospective review of clinical records derived from palliative care forms of
infants who received paediatric palliative care.
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.
is 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.
Abstracts
Vijaya Kadam, DrVandana Kumavat
Tata Memorial Centre
Head, Dept of Pediatrics, CSMH, Kalwa
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 suering. 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 suerings by
multidisciplinary team. A study is being conducted with approval from
Institutional Ethics Committee-Chhatrapati Shivaji Maharaj Hospital.
To assess the quality of life of children with life limiting by using
PEDSQOL 4.0 Generic Core Scale.
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 rst visit and then aer every three
months to the child/caregiver. Holistic care is provided by the multidisciplinary
team. Aer the pandemic, the team is helping the families through telephonic
calls. e care is being provided through liasoning with local doctors and NGOs.
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.
Paediatric palliative care interventions are helping to improve
the quality of life of children with life limiting conditions and their
caregivers.
Rita Moras, DrSwapnali Kadam
Tata Memorial Hospital, Mumbai
Associate Professor, CSMH, Kalwa
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. is would help the team to enter
in the world of child, in turn aiding in management of chronic condition.
To understand the perceptions of children with life-limiting conditions
and nd out how it aects them.
Children above 8years who could write were enrolled under this
project. Consent, assent were taken prior to enrolment. Demographic and
medical records were documented. ey were prompts and cues. ey were
asked to write the diary and return it aer 1month. Narratives derived from
diary was analysed.
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.
It is important to know child’s perspective about the disease so
that interventions can be planned.
J Iyengar, A Ghoshal, MA Muckaden*, C Garg, J K Deodhar,
A Damani, KV Ganpathy
Tata memorial hospital
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.
Retrospective chart review of 34case record forms were conducted
aer waiver of consent and IEC approval. Inclusion criteria: Patients referred
to paediatric palliative care aged between 6 to 18years. Data were analysed
using thematic analysis.
23 were male and 11 were female. 5 major themes were
identied 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.
Communication between children suering from advanced
cancer and their parents/caregivers is a sensitive issue, and non-
communication is oen due to mutual eort to shield each other from
stress of dicult 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 eective.
DrRabiya Abdu Razak Malayil, DrSushma Bhatnagar
AIIMS New Delhi
Abstracts
e prevalence of neuropathic pain aer cancer treatment has
been estimated to be 68.1% in the 1stmonth aer administration of platinum
or taxane based antineoplastic agents. ese agents have increased the
overall survival rate of cancer patients but with development of debilitating
side eects and poor quality of life.
Improvement in neuropathic pain symptoms on VAS scale and
SLANSS scale through gabapentin+supplementation and assessing the QOL
using EORTC QLQC30
100patients with clinically diagnosed neuropathic pain
were enrolled in study. Aer 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 6months.
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. e S-LANSS
(15.39+2.4) and VAS score (6.66+1.06) showed a signicant improvement
between gabapentin alone and gabapentin+Vitamin B12 at 6months follow
up. Likewise, the S-LANSS (15.4+2.39) and VAS score (3.33+1.31) showed a
signicant improvement between gabapentin alone and gabapentin + Vitamin
B12+Vitamin D3cases at 6months follow up. e EORTC QLQ30 score at
6months also showed signicant improvement during follow up visits.
Gabapentin+supplements shows signicant 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.
erefore, we can recommend the use of nutritional supplements along with
gabapentin to mitigate the neuropathic pain symptoms in cancer patients.
DrRevathy Vijayakumar, DrSushma Bhatnagar
AIIMS NewDelhi
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 suer from cancer pain. Cancer pain
causes suering which encompasses not only physical but psychological
suering as well and thereby results in reduced quality of life in these
patients. us, 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 eects.
To see the reduction in usage of analgesics in patients’ post-
intervention and also to see the improvement in QoL in these patients
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 aer
the procedure, pain relief based on NRS before and aer procedure and
improvement in Qol post procedure. QoL: Using EQ-5D-5L
Data is under evaluation. Expected outcome is to
quantify the pain relief in palliative care patients with chronic pain aer
interventional pain therapy.
Arun Vivek, DrArun Vivek, Tutor, DrRajashree KC
Department of Pain and Palliative Medicine, Amrita Institute of Medical
Sciences
visiting consultant, R/N Ajisha
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-inammatory
eect 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 eect or when higher
doses of opioids or NSAIDs cause toxic eects (4).
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
ecacy of Nefopam
Observational study
Amrita Institute of Medical Sciences, Kochi
Numerical rating scale (NRS)
is is an interim analysis and currently only 50patients have
been taken up for the data analysis
All patients on Nefopam from 18years and above
Patients unable to report on NRS
•Aerinstitutionalethicalclearanceandinformedconsent,
pain score of the patients were assessed and documented before and aer
administration of Nefopam (24 and 48 hrs aer) e subsequent result was
then categorised as following: i. 0-2: Mild pain relief ii. 3-4: Moderate pain
relief iii. > or = 5: Signicant pain relief
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
Abstracts
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 signicant pain relief accounting to 83% of which 17% of
patients had signicant pain relief
Nefopam is a good analgesic as an alternative or as an add on in
palliative care patients.
1. Heel RC, Brogden RN, Pakes GE, Speight TM, Avery GS. Nefopam:
a review of its pharmacological properties and therapeutic ecacy.
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. 2014Apr;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 aer renal
transplantation: A randomised trial. Acta Anaesthesiol. Scand.
2015;59:1068–1075. doi: 10.1111/aas.12519.
Mrs. Mudita Yadav, Mrs. Rupali Malwadkar,
Dr.Mohamed Adnan Khan
Sukoon Nilaya Palliative Care Center
Stroke is a condition that checks all the boxes for
implementing palliative care (PC) as dened by the WHO. ere 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.
1 Recognising the symptoms in patients suering from stroke. 2
Review and implementation of the nursing practices in palliative care in
stroke.
15 patients with stroke were recognised, their records and
interventions done were reviewed. Modied Rankin Scale (mRS) and
Edmonton Symptom Assessment System (ESAS) were used to assess the
results.
Out of the 15 cases selected, 2 expired and the remaining
13 showed signicant 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.
A nurse’s role in stroke recovery includes assessment,
identication, 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.
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.
To assess the burden of physical symptoms and unmet palliative care
needs in PLWHA in a tertiary care setting.
A cross sectional study of PLWHA presenting to the
retroviral disease clinic was conducted over a 6months (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.
Among 97patients who participated, 61.9% belonged to the age
group of 45-64 years. e total mean ESAS-R scores was 20.38 ± 17.07
and 42.26% reported severe symptoms. e 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 signicant
association between symptom burden and palliative care requirement [p
value < 0.05].
PLWHA have a substantial symptom burden and their PC
needs are oen unmet. Integration of PC services with antiretroviral
treatment is imperative for enhancing the quality of life.
Dr.Shrikant Atreya, Dr.Jenifer Jeba, Dr.Chaitanya Patil,
Dr.Rajam Iyer, Dr.DJ Christopher, Dr.Sujeet Rajan
Tata Medical Center, Kolkata
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.
e 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.
An exploratory survey method using Google Survey
forms and SurveyMonkey were emailed to respiratory physicians between
December 2020 and May 2021.
Abstracts
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 benecial. ey 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.
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.
erefore, concerted eorts 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.
Kahkasha, Burhanuddin Qayyumi
Homi Bhabha Cancer Hospital And Research Centre
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 dierent regions amongst a single country
like India.
Objectively quantify the level of palliative care available in the various
states of India.
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
e 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.
Only the state of Kerala and Tamil Nadu had high integration
and provision for palliative care in India. e 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
Dr.Shikha Jain, DrAnjum 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 6days Hands – On training for 320
doctors and nurses working in Govt. Hospitals from 2018-2020.
MAP: 15 Training Sessions were covered for all the 34 districts.
Participants were from all the levels – District Hospital, Community Health
Centre, Primary Health Centre. e structured program included theory
and hands on exposure and evaluation (case presentation, objective test to
assess change in knowledge, attitude and perception of competence)
Morphine: - e mechanism of procurement is extremely
complex in the government sector. Requests by trained doctors were not
sanctioned by the superior ocer (fearing diversion).
e major hurdle in implementation
is that the decision makers are transferred oen. Sustaining the training and
service is a challenge;
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’ e
patient:HCW ratio is also a threat to growth
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 eectively (Cancer Control
Programme data).
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.
e 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 ocials and policy makers involved in hospitals need to
be oriented toward palliative care for better delivery.
Abstracts
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
WHO recommends improving access to palliative care (PC)
as a core component of health systems, with an emphasis on primary health
care. e 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. ere is however a concern about
the inequity in access to PC services.
Since there is lack of data on assessment of unmet
need for PC in India. e 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. is 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.
Across-sectional household survey was undertaken in 2 blocks
of Pune district. e study was able to achieve (n=4935) random samples
against an estimated (n=3242). Descriptive and inferential statistics (χ2 test)
were generated. e 33-item PNPC questionnaire was cross tabulated with
gender to address the study objectives.
Signicant 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. Signicant
associations were also reported for domains of autonomy, social,
psychological and spiritual issues as per PNPC.
e study highlights the importance of unpacking PC into
the symptoms that males and females experience dierently. As PC
is not clearly understood, signicant 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.
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
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.
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
Suering (SHS). e 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.
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. e present paper report
baseline-endline gures 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.
e pre-post analysis of SHS symptoms and its intensity
reporting showed signicant dierences 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 signicantly reported
post the intervention activities. Intensity reporting of symptoms pain
(U=2655838.500; p<0.0001), weakness (U=941170.00; p<0.0001), fatigue
Abstracts
(U=814561.500; p<0.0001), depressed mood (U=91000.00; p<0.0001)
and insomnia (U=91810.500; p<0.0001) were signicant in the surveyed
households.
e objective of this intervention study was to provide practical
guidance on integrating PC and symptom relief into public health care
systems. e results indicate that the intervention may have contributed to
a change in health seeking behaviour. e community members were more
likely to report symptoms post the intervention. e 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.
Pragya Misra, Priyasi Surolia, Arati Hota
BMCHRC, Jaipur
Distress is common among cancer patients, adversely
aecting 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}
To examine the applicability and challenges in implementing distress
thermometer among cancer patients.
Adescriptive study was carried out at BMCHRC, Jaipur. Study
was conducted with 593patients. Randomised sampling was done. NCCN
Distress ermometer (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.
Among 593patients 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 signicant 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 group40.41% (78/193) and illiterate 37.90% (58/153). e mean
time duration of implementing DT with each patient was 9.7minutes (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 signicantly associated with distress (r-0.03/p-0.44).
Distress really exists and clinical implication highlights the
need to identify the distress among cancer patients. ere is signicant
level of distress among them irrespective of stage of cancer and that should
be assessed and addressed by using clinical practice guidelines. e study
also documents a signicant 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.
Mrs. Parveen, Dr.Sujata Sathpathy
AIIMS, Delhi
Associate professor, psychology, AIIMS, Delhi
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 le the whole health care system
in an abysmal situation. Lockdown kind of situation added to the misery of
people. All these factors have aected people as well as HCW economically,
socially and psychologically.
is 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.
Our study comprised 164 clinical nurses, out of which
110 were posted in the non-COVID area while 54 were in the COVID
area. e 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.
e 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.
Self-administered tools have been provided to the clinical nurses
and got lled from both the areas i.e. COVID and non-COVID of the
AIIMS, Delhi. e signicant dierence 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 signicantly 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 non-
COVID area is found signicantly correlated with a professional attitude and
negatively correlated with subjective happiness.
Perceived discrimination, profession and one’s ability
to regulate behaviour eects the level of anxiety and depression. But
surprisingly burnout was not found signicant in any population.
Ms. Kusum K Rohilla, Prof C Vasantha Kalyani,
Dr.Amit Gupta, Dr.Sweety Gupta, Prof Manoj Gupta
All India Institute Of Medical Sciences, Rishikesh
Pranayama originated thousand years ago in Indian
tradition, which is popular in creating healthy mind and body. Practice of
Abstracts
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 signicant 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.
e study aim is to evaluate the eectiveness of pranayama on
functional recovery, resilience and quality of life among advanced
gallbladder cancer patients at AIIMS, Rishikesh
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.
Atotal of 150patients 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).
CONSORT diagram of study showing ow of participants throughout trail
Pranayama eectiveness in terms of functional recovery by FIM scale,
resilience by BRS scale and quality of life by EORTC QLQ BIL-21 questionnaire
during pretest, 15days, 1month, 2months, 3months and 4months.
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 benecial 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 4months. Each session lasts between 10-15minutes.
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 4months. Each session lasts
between 30-45minutes.
e research protocol was approved by the Institutional Ethical Committee
of AIIMS, Rishikesh with a letter reference number AIIMS/IEC/19/912. e
study was registered under CTRI (Clinical Trials Registry of India) with a
letter reference number CTRI/2021/01/030791.
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
signicantly dierence in control and experimental groups by following
pranayama therapy for 4months.
Good adherence* (n = 10)
nd
rd
Patients
Bhastrika pranayama 20.1 24.2 27 28
Caregiver
Sudershan Kriya 21.3 24.8 27.6 28.2
*Good adherence: utilization more than 15 session per month were taken
as good adherence.
According to the ndings, 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.
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,
NewDelhi, 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
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. ough there are
some international studies on palliative cases in patients with MBO there
is no study in Indian population e 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
>18years.
To access symptom burden and QOL in
patients of MBO admitted in PCU tertiary cancer centre in India.
Abstracts
To study early possibility of oral restoration in patients
of MBO.
Patients presented to the PCU, were included in the study based
on inclusion and exclusion criteria. e patients’ demographic prole,
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 signicant.
A total of 44 patients were enrolled. e 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. e 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. e
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. e 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. e most common, frequent, severe
and distressing symptom was pain on MSAS followed by vomiting, lack of
energy and diculty sleeping. We were successful in early restoration of oral
feeding in 42patients (95.5%) at the time of discharge.
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.
Dr Rabiya Abdu Razak Malayil, Dr Sushma Bhatnagar
Aiims New Delhi
e prevalence of CIPN has been estimated to be 68.1% in
the 1st month aer administration of platinum (oxaliplatin/carboplatin)
or taxane based antineoplastic agents (paclitaxel/docetaxel). e
incidence of coasting phenomenon is seen in 60% of patients at the end
of cancer treatment. ese agents have increased the overall survival rate
of cancer patients but with development of debilitating side eects 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. erefore, it is of at
most importance to develop prophylactic measures to prevent CIPN so that
the patients can be cancer free and not suer from debilitating neuropathy
induced by cancer treatment.
Improvement in quality of life using EORTC QLQ30 and
chemotherapy induced neuropathic pain symptoms on VAS scale and
SLANSS scale through selective nutritional supplementation.
A total of 103 patients with clinically diagnosed
CIPN were enrolled in the study. Aer taking informed written consent,
EORTCQLQ30 and EORTC-CIPN20 were assessed along with a baseline
workup of Vitamin B12 and Vitamin D3 levels. ey were categorised into
two groups – Decient group and Non decient group. Decient group
had been given gabapentin and the decient component (either Vitamin
B12 or Vitamin D3 or both) whereas the Non decient 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.
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. e
S-LANSS pain score (10.57 v 5.24, P < .05) and visual analogue scale
score (3.91 v 2.88, P < .05) showed a signicant 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 signicant 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 .
e current data shows the treatment of neuropathic pain using
gabapentin + nutritional supplements shows signicant improvement in the
quality of life and reduction of pain as compared to gabapentin alone cases
at 6-month follow-up. erefore, we can recommend the use of nutritional
supplements along with gabapentin to mitigate the neuropathic symptoms
in cancer patients.
Annie Jacob, Jenifer Jeba S., Susithra D.N, Ramu Kandasamy,
otampuri Shanthi Prasoona, Bharathi Srilatha G., Shakila
Murali, angarathi 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
Assessment and support of psychosocial distress and needs
is a key component in palliative care provision. is can be compromised in
busy outpatient settings for dierent reasons.
is 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.
e QI project was undertaken between April-
September 2021. e 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.
e interventions included; development and use of a screening checklist to
identify outpatients at risk for psychosocial distress, organisation of patient/
medical records ow, restructuring psychologists’ schedule, provision of
designated spaceand patient follow-up based on distress scores. Reliability
and sustainability were ensured with appropriate documentation and
delegation of ownership to team members.
e SMART goal to increase psychosocial assessments of repeat
outpatients by 20% was achieved to more than 45%. Assessment for new
Abstracts
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.
e A3 methodology of understanding process ow, identifying
root causes, narrowing on the ‘vital few’ helped focus on key interventions
that need to be in place to achieve the SMART goal. is process facilitated
team discussions, learning QI methodology and in improving assessment of
psychosocial distress.
Dr. Leena V Gangolli, Dr.Vinodkumar Gangolli
Sukoon Nilaya Palliative Care Centre, Mumbai
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. e chronically
ill and the elderly are at higher risk for loneliness, which itself is a risk factor
for higher morbidity and mortality.
To discuss the concept of loneliness in the context of geriatric palliative
care and discuss approaches for its prevention and management.
A case discussion describes the care of an elderly woman
with early cognitive impairment who was socially withdrawn and refusing
to eat.
A series of non-pharmacological social interventions used by the
care team resulted in her socially interacting as well as eating normally.
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.
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 identication and prompt referral of patients is lacking in
advanced malignancies with MSCC. e eect of early dexamethasone
therapy and radiotherapy causing an early regain of neurological and
autonomic dysfunction is not extensively studied.
e 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 nd 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.
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 lled for QOL assessment, and
RADES risk score was assessed for overall survival estimate.
e 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 aer 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 signicant 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).
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 benet patients with
MSCC.
Quality of life, Malignant Spinal Cord Compression,
Performance status
Dr Devdutt Sharma, Dr Ashwin Mathur, Dr Yogendra
Singhal, Dr Gaurav Sharma
SMS Hospital Jaipur
Understanding the prole of end users is a key input for
designing a service. is 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 aer 15 days
of treatment.
All patients attending the OPD will be required to ll a
questionnaire (NCCN Distress ermometer and Problem List-Version
Abstracts
2.2020) on their rst visit. is questionnaire will be analysed to assess their
distress levels on their preliminary visit.
Sample size is calculated at 95% condence interval, assuming
maximum variance and 50% satisfaction of services. At the relative error of
10% minimum sample size calculated is 400
Signicant 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.
Palliative Medicine, NCCN Distress ermometer
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
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.
To assess the occurrence of hypercalcaemia and its outcome in solid
tumours.
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 prole were analysed.
20patients were found to have been treated for hypercalcaemia
during this period. Median age of presentation was 49years. Among them
8 were male and 12females. 7patients 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.
e incidence of malignancy related hypercalcaemia is
generally associated with advanced stage disease and not exclusively
associated with metastatic bone disease. is entity portends poor outcome
and aids in discussing further goal of care.
Avtar Bajwa1*, Anjum Khan Joad1, Vinita Jain1
1Bhagwan Mahaveer Cancer Hospital and Research Centre, Jaipur, India
To assess the knowledge of sta nurses
working in the Intensive Care Unit (ICU) towards care of dying patients and
to assess the eectiveness of a planned teaching programme on knowledge
of the care of dying patient among sta nurses working in the ICU.
A quasi-experimental design with pre-test post-test design was
used to evaluate the eectiveness of planned teaching program for the study.
e content validity of tool and planned teaching programme was established
by ve experts in the eld of nursing. e pilot study was conducted on 30
items for its clarity, unambiguous content and feasibility on similar subjects.
e main study was carried out on 60 sta nurses by non-probability
convenient sampling technique. A structured knowledge questionnaire
was administered for data collection to sixty nurses. e tool consists of 8
questions in sociodemographic variables and 30 in level of knowledge
questionnaire. e demographic Performa: Age group, year of experience,
type of basic nursing preparation, gender, religion. e 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 aer
conducting a planned teaching programme on care of dying patients
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%).
e overall mean knowledge score pre test was 19.85±2.97, post test was
25.58±3.22. e mean dierence of pre versus post group in both hospitals
was (5.733) and the t-ratio was statistically signicant as the obtained value
(10.11) is higher than the tabulated value (2.00) required for t-ratio to be
signicant at 0.05 level of condence.
Nurses can help the patient and their family during the last
hours, in grief and bereavement support. is period, leading to death is
associated with physical, psychological, spiritual and social distress which
can be alleviated by nurses who are working in ICU. is comprehensive
care can be provided with excellent clinical skills, compassion and
understanding which will reduce suering 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 eective in increasing the knowledge of ICU
nurses. rough this ICU nurses will enhance their knowledge and full all
aspects of care of dying patients and deliver a better care and service.
None declared
