Generic selectors
Exact matches only
Search in title
Search in content
Post Type Selectors
Search in posts
Search in pages
Filter by Categories
Book Review
Brief Report
Case Letter
Case Report
Case Series
Commentary
Current Issue
Editorial
Erratum
Guest Editorial
Images
Images in Neurology
Images in Neuroscience
Images in Neurosciences
Letter to Editor
Letter to the Editor
Letters to Editor
Letters to the Editor
Media and News
None
Notice of Retraction
Obituary
Original Article
Point of View
Position Paper
Review Article
Short Communication
Systematic Review
Systematic Review Article
Technical Note
Techniques in Neurosurgery
Generic selectors
Exact matches only
Search in title
Search in content
Post Type Selectors
Search in posts
Search in pages
Filter by Categories
Book Review
Brief Report
Case Letter
Case Report
Case Series
Commentary
Current Issue
Editorial
Erratum
Guest Editorial
Images
Images in Neurology
Images in Neuroscience
Images in Neurosciences
Letter to Editor
Letter to the Editor
Letters to Editor
Letters to the Editor
Media and News
None
Notice of Retraction
Obituary
Original Article
Point of View
Position Paper
Review Article
Short Communication
Systematic Review
Systematic Review Article
Technical Note
Techniques in Neurosurgery
Generic selectors
Exact matches only
Search in title
Search in content
Post Type Selectors
Search in posts
Search in pages
Filter by Categories
Book Review
Brief Report
Case Letter
Case Report
Case Series
Commentary
Current Issue
Editorial
Erratum
Guest Editorial
Images
Images in Neurology
Images in Neuroscience
Images in Neurosciences
Letter to Editor
Letter to the Editor
Letters to Editor
Letters to the Editor
Media and News
None
Notice of Retraction
Obituary
Original Article
Point of View
Position Paper
Review Article
Short Communication
Systematic Review
Systematic Review Article
Technical Note
Techniques in Neurosurgery
View/Download PDF

Translate this page into:

Original Article
15 (
2
); 349-356
doi:
10.25259/JNRP_7_2024

Palliative care needs of stroke patients at a tertiary care center in South India

Department of Neurology, Government Medical College, Thiruvananthapuram, Kerala, India
Department of Neurology, Queens University, Queens University School of Medicine, Kingston, Ontario, Canada
Department of Palliative Care, Pallium India, Thiruvananthapuram, Kerala, India
Department of Nursing, Government Medical College Thiruvananthapuram, Medical College, Thiruvananthapuram, Kerala, India
Department of Oncology, Queens University, Queens University School of Medicine, Kingston, Ontario, Canada.

*Corresponding author: Praveen Panicker, Department of Neurology, Government Medical College, Thiruvananthapuram, Kerala, India. panicker85@gmail.com

Licence
This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-Share Alike 4.0 License, which allows others to remix, transform, and build upon the work non-commercially, as long as the author is credited and the new creations are licensed under the identical terms.

How to cite this article: Panicker P, Iype T, Appireddy R, Ajithan A, Lijimol AS, Sasikumar A, et al. Palliative care needs of stroke patients at a tertiary care center In South India. J Neurosci Rural Pract. 2024;15:349-56. doi: 10.25259/JNRP_7_2024

Abstract

Objectives:

Stroke survivors have palliative care needs in multiple domains, which are overlooked. Accurate estimation of these is pivotal in ensuring proper rehabilitation and planning interventions to improve quality of life (QoL). We aimed to assess the palliative care needs of stroke patients in various domains in a structured manner at the neurology service of a tertiary care center in South India.

Materials and Methods:

Seventy-five consecutive stroke patients presenting to the neurology service were recruited over six months with assessment across various domains including symptom burden, physical domain, activities of daily living (ADL), psychiatric/psychological domain, and QoL at baseline and with follow-up at one month and three months.

Results:

Despite improvement in the conventional stroke impairment measures among stroke survivors, there were significant unmet needs across various domains; 98% were severely or entirely dependent on ADL at three-month follow-up; and pain and insomnia were the most frequent (33% incidence) troubling symptoms encountered. There were substantial mental health related issues. The QoL measurement tools employed were the stroke impact assessment questionnaire (SIAQ), a novel tool and the World Health Organization Quality Of Life Brief Version (WHO-QOL-BREF). SIAQ scores at one month showed that 19 patients (42.22%) had their QoL severely affected, and 36 patients (80%) showed the same trend at the three-month follow-up. WHO-BREF scores showed that 27 (62%) did not report good QoL, and 32 (73%) were found not to be satisfied with their health at a one-month follow-up.

Conclusion:

There is a significant burden of unmet palliative care needs among stroke survivors in India across various domains.

Keywords

Quality of life
Palliative care
Activities of daily living
Stroke
Developing countries

INTRODUCTION

In India and other low- and middle-income countries (LMICs), the stroke burden is exceptionally high, with temporal data showing an increasing prevalence of ischemic and hemorrhagic strokes.[1,2] Stroke is the fourth leading cause of death and the fifth leading cause of DALY’s in India.[3] Although organized stroke unit care has improved stroke survival and outcomes,[4] specialized services are concentrated in urban areas.[5] There are enormous lacunae in the support and rehabilitation services available to stroke patients in India, especially in a rural setting.[5] The problem is compounded by the escalating burden of noncommunicable diseases, including stroke in India and other LMIC, coupled with limited access to prevention, treatment, and rehabilitation services.[6] The higher prevalence of poverty and the impact of poverty on stroke prevalence impact access to stroke care across the continuum.[7] The burden on caregivers of stroke survivors is very high and is influenced by stroke characteristics (stroke severity and disability) and socioeconomic status.[8]

Serious health suffering (SHS) associated with illness or injury can compromise the physical, social or emotional functioning of stroke patients and their families and needs to be addressed with medical and non-medical interventions.[9] In LMICs, 44% of deaths in all age groups are associated with SHS.[9] Stroke ranks as the second most common cause of non-decedent SHS worldwide and in LMICs.[9] Palliative care provides an integrated approach that improves the quality of life (QoL) of patients and their families facing a life-threatening illness by utilizing early identification, assessment, and treatment of problems such as pain, psychosocial distress, and spiritual struggles.[10] In the context of limited resources, the palliative care approach must adopt a safe, effective, and low-cost “Essential Package” to address SHS.[9]

The literature on the palliative care needs of stroke patients is sparse, especially from LMICs. The palliative care needs of stroke patients are different from other illnesses. The natural history of stroke with abrupt onset disability leaves little time for the patient or caregiver to cope with the tragic situation.[11] Higher palliative care needs in various domains (psychological, psychiatric, and functional dependence) are associated with low QoL in stroke survivors.[12] Higher disability and socioeconomic and demographic profile (rural residence, education, and marital status) of the stroke patients are often associated with increased palliative care needs.[13]

A qualitative study from South India identified multiple palliative care needs for stroke patients and their families.[14] Expanding on this approach, we sought to describe the palliative care needs of stroke patients and families using multiple validated instruments across various domains.

MATERIALS AND METHODS

Study Design-This prospective observational study recruited consecutive acute stroke patients admitted to a Neurology unit at Thiruvananthapuram Medical College over six months (September 2019–June 2020) with follow-up at one month and three months after stroke onset.

The objective of the study was to measure the palliative care needs of imaging-confirmed stroke patients.

Our stroke unit has two stroke emergency admission days per week. We use four to six beds out of the 16 intensive care unit beds on admission days. Subsequently, depending on the recovery, we shift them to one of the two high-care step-down beds and then to the 13 general ward beds. The average admission during the week is around 10-12. Patients coming within the window period undergo an emergency computed tomography (CT) scan, and CT angiogram, and eligible patients are thrombolysed. We do not have an in-house facility for thrombectomy.

Palliative care needs were measured across multiple domains: symptom burden, physical domain (stroke impairment [National Institutes of Health Stroke Scale-NIHSS, Canadian neurological scale], disability scales [modified Rankin scale-mRS], activities of daily living [ADL] Barthel Index [BI]), psychiatric/psychological domain (depression [Patient Health Questionnaire-9 (PHQ-9) questionnaire] and anxiety [Generalized Anxiety Disorder-7 (GAD-7) questionnaire]), QoL domain (stroke impact assessment questionnaire [SIAQ] and the World Health Organization Quality Of Life Brief Version [WHO-QOL-BREF]).[15-21] Symptom burden was addressed by looking into the presence of 12 stroke-related symptoms as part of the assessment at baseline using a questionnaire. The WHO-QOL (100 items) and WHO-QOLBREF (26 items) are QoL scales developed to be culturally appropriate across different cultures in collaboration with multiple international centers.[19] Local language (Malayalam) translated versions of the questionnaires (GAD-7, PHQ-9, and WHO-QOL-BREF) were used. Patients with stroke confirmed on imaging (CT/magnetic resonance imaging) were eligible to be enrolled in the study. According to the protocol, data collection was done by a research nurse using a pre-designed case record form [Table 1]. The SIAQ was developed by investigators in our team in the context of South India’s medical system and has undergone validation (Neurology India, in press). The SIAQ is a stroke-specific comprehensive patient-reported outcome measure (PROM) validated for assessment beyond one month of stroke. There are 30 items, with scores ranging from 0 to 60, covering eight principal domains: Sensory, motor, social, economic, emotional, behavioral, cognitive, and communication.

Table 1: Overview of timeline of data collection and scales used.
Baseline 1 m follow-up 3 m follow-up
Demographic and socioeconomic data X
Symptom burden X
NIHSS X X
Modified Rankin scale X X
Barthel index X X
Canadian neurological scale X X
SIAQ X X
WHO-QOL-BREF X X
PHQ-9 X X X
GAD-7 X X X

NIHSS: National Institutes of Health Stroke Scale, PHQ-9: Patient Health Questionnaire 9, GAD-7: Generalized anxiety disorder 7, SIAQ: Stroke impact assessment questionnaire, WHO-QOL-BREF: World Health Organization Quality of life Brief Version

Statistical analysis

Mean and median measured the central tendency. Standard deviation and interquartile interval showed the variability. Paired t-test was used to measure the difference in means within a sample. The patient’s identity has been anonymized.

Ethics approval was obtained from the Institutional Human Ethics Committee, and informed consent was obtained from patients.

RESULTS

Seventy-five patients were enrolled at baseline. At one month follow-up, three died and eight were lost to follow-up. There were three further deaths in three months.

Our study cohort had a higher proportion of males (65%), rural residents, married (76%), lower education attainment, and lower occupational strata. The complete sociodemographic profile is presented in Table 2.

Table 2: Sociodemographic profile of the patients.
Variable n(%) n=75
Age categories
  Less than 51 years 23 (31)
  51–70 years 40 (53)
  More than 70 years 12 (16)
Age (median [IQR] years) 62 (48–68)
Sex
  Males 49 (65)
  Females 26 (35)
Marital status
  Never married 2 (3)
  Currently married 57 (76)
  Separated 4 (5)
  Widowed 12 (16)
Occupation categories
  Skilled worker (skilled/semi-skilled) 15 (20)
  Others (professional/semi-professional/clerk/shop owner/farm 8 (11)
  Unskilled 23 (31)
  Unemployed 28 (38)
Educational categories
  Above high school (prof/grad/post-secondary) 8 (11)
  High school 23 (31)
  Below high school (middle/prim/illiterate) 44 (59)
Location of residence
  Urban 21 (28)
  Rural 54 (72)
Number of dependent adults
  None 40 (53.)
  One 33 (44)
  Two 2 (2.67)
Number of dependent children
  None 62 (82.67)
  One 4 (5.33)
  Two 8 (10.67)
  Three 1 (1.33)
Age of the oldest child (median [IQR]) 35 (21–42)
Age of the youngest child (median [IQR]) 28 (15–38)
Type of house*
  Katcha 23 (30.67)
  Pakka 51 (68)
Kuppuswamy socioeconomic score 2019
  Mean (SD) 11.18 (5.73)
  Median (IQR) 9 (7–13)
Kuppuswamy socioeconomic scale 2019 (3 categories)
  Upper and Upper middle 12 (16)
  Lower middle 19 (25.33)
  Upper lower and lower 44 (58.67)
Data missing for one patient. n: Number of patients. Kutcha House: The walls and/or roof of which are made of material other than those mentioned above, such as unburnt bricks, bamboos, mud, grass, reeds, thatch, and loosely packed stones are treated as kutcha house. A pucca house is one, which has walls and roof made of the following material. Wall material: Burnt bricks, stones (packed with lime or cement), cement concrete, timber, ekra, etc., IQR: Interquartile range, SD: Standard deviation

The prevalence of comorbidities and health-related behavior (smoking and alcohol) is presented below in Table 3.

Table 3: Health-related behaviors and comorbidities.
Variable n(%) (n=75)
Smoking status
  Not a smoker 38 (50.67)
  Cigarette 21 (28.00)
  Hand rolled cigarettes 14 (18.67)
  Others -Chewing/snuff 2 (2.67)
Alcohol use
  Never drunk 39 (52)
  Former/past drinker 23 (30.67)
  Current mild moderate drinker 8 (10.67)
  Current heavy drinker 3 (4.00)
  Unknown 2 (2.67)
Hypertension 61 (81.33)
Diabetes 43 (57.33)
Dyslipidemia 15 (20)
Hepatitis B positive status 1 (1.33)
COPD 1 (1.33)
Coronary artery disease 21 (28)

COPD: Chronic obstructive pulmonary disease, n: Number of patients.

Most patients had an ischemic stroke (93%), with 50% receiving thrombolysis and 85% having a moderate-severe stroke. The details of stroke characteristics are presented in Table 4.

Table 4: Stroke characteristics at baseline.
Stroke type n(%) (n=75)
  Ischemic 70 (93.33)
  Hemorrhagic 5 (6.67)
  Thrombolysis 37 (49.3)
Location of infarct on CT scan
  • No infarct seen 01 (01.3)
  • Cortical infarct 51 (68.0)
  • Subcortical infarct/Lacunar infarct 13 (17.3)
  • Cortical infarct and subcortical 05 (06.7)
  • ICH 05 (06.7)
NIHSS
  • Severe (NIHSS >15) 19 (25.33)
  • Moderate (NIHSS 5–14) 45 (60.0)
  • Mild (NIHSS 1–4) 11 (14.7)

CT: Computed tomography, ICH: Intracerebral hemorrhage, NIHSS: National Institutes of Health Stroke Scale, n: Number of patients.

A considerable proportion of respondents (40%) were not interested in answering the mental health screening questionnaire over the phone. In the cohort that responded to the GAD-7 questionnaire, 48% had minimal anxiety and ~11% had mild anxiety symptoms, with none having moderate/severe anxiety. Among the respondents to PHQ-9, 8% did not have any signs of depression, 35% had minimal depression, 13% had mild depression, and none had evidence of moderately severe or severe depression.

The mRS score and BI at three months are presented in Table 5. Independent outcome/mild disability (mRS 0–2) was seen in 36% and a moderate disability (mRS 3–4) at three months in 48%. A considerable proportion of stroke survivors had severe to total dependency for ADLs at three months.

Table 5: mRS and Barthel index at three months.
Distribution of individual scores n(%) (n=67)
mRS 0 (no symptoms) -
  mRS 1 (no significant disability despite symptoms) 10 (13.3)
  mRS 2 (slight disability) 17 (22.7)
  mRS 3 (moderate disability) 21 (28.0)
  mRS 4 (moderately severe disability) 12 (16.0)
  mRS 5 (severe disability) 01 (1.3)
  mRS 6 (expired) 06 (8)
Overall mRS outcome
  Good outcome (mRS 0–2) 27 (36.00)
  Poor outcome (mRS 3–6) 40 (64.00)
Barthel index score 3 month (n=61)
  Total dependency (0–20) 24 (39.34)
  Severe dependency (21–60) 36 (59.02)
  Moderate dependency (61–90) 01 (1.64)
  Slight dependency (91–99) 00 (00.0)

mRS: Modified Rankin scale

The symptom burden is presented in Table 6. The most frequent three encountered were pain (33.3%), insomnia (33.3%), and fatigue (17.30%).

Table 6: Symptom burden of stroke patients.
Symptoms Frequency (%) n=75
Pain 25 (33.3)
Constipation 09 (12.0)
Dyspnea 04 (05.3)
Diarrhea 01 (01.3)
Nausea 12 (16.0)
Vomiting 05 (06.7)
Dizziness 07 (09.3)
Insomnia 25 (33.3)
Numbness 13 (17.3)
Fatigue 13 (17.3)
Dysphagia 12 (16.0)
Bedsore 01 (01.3)

n: Number of patients.

The various stroke impairment scales, disability scales, anxiety, and depression questionnaires and the QoL scales are summarized in Table 7. There was a statistically significant improvement in stroke impairment and disability scales at three months compared to baseline and is in line with the expected natural history of stroke recovery. The QoL scales showed a significant burden in multiple domains at baseline, which significantly improved at three months in the physical, psychological, and environmental domains. The social relations domain scores narrowly missed the statistically significant improvement, possibly highlighting the lack of adequate social support for stroke survivors and their families.

Table 7: Summary of stroke outcomes and palliative care needs at baseline, one month and three months.
Baseline (n=75, enrolled) 1 month (n=64; 3-died, 8-lost to follow-up) 3 months (n=61; 6-died, 8-lost to follow-up) Paired ‘t’ test for baseline vs 1 months (p value) n=64 Paired ‘t’ test for baseline vs 3 months (p value) n=61
Mean (SD) Median (IQR) Mean (SD) Median (IQR) Mean (SD) Median (IQR)
Canadian neurological scale 8.14 (2.01) 8.5 (7-10) - - 5.21 (1.26) 5 (4.5-6) <0.001 <0.001
SIAQ 37.02 (13.21) 38 (27-47.5) 19.87 (4.84) 19 (16-23) 23.8 (4.91) 23 (20-27) <0.001 <0.001
NIHSS scale 10.89 (5.78) 10 (6-15) - - 5.69 (4.27) 5 (2-8) <0.001 <0.001
Barthel index 38.12 (21.13) 35 (20-55) - - 27.13 (10.55) 25 (20-30) 0.09 <0.001
Modified Rankin scale 4 (1) 4 (3-5) - - 3 (1.4) 3 (2-4) <0.001 <0.001 (n=67)
GAD-7 score* 4.06 (3.44) 3 (2-6) 3.46 (2.41) 3 (2-5) 2.8 (1.97) 3 (1-5) NA 0.005$
PHQ-9 score** 3.06 (2.93) 2 (1-4) 5.58 (5.04) 5 (2-7) 2.87 (2.47) 2 (1-5) NA 0.51$
WHO BREF
  Physical health Domain 48 (12.44) 50 59.84 (8.24) 63 74.54 (11.53) 75 <0.001 <0.001
  Psychological Domain 49.66 (12.93) 50 63.23 (9.68) 63 77.89 (11.77) 81 <0.001 <0.001
  Social relationships Domain 47.64 (19.60) 50 54.51 (12.74) 53 53.5 (15.44) 50 0.07 0.06
  Environment Domain 59.06 (12.61) 63 63.89 (10.95) 63 65.20 (10.21) 63 0.06 0.01
missing in 26 subjects at baseline, 30 subjects at 1m follow up, 30 subjects at 3m follow up, **missing in 25 subjects at baseline, 30 subjects at 1m follow up, 32 subjects at 3m follow up∫missing in 14 subjects at 3 months follow up, $ n=41 subjects. SD: Standard deviation, IQR: Interquartile range, SIAQ: Stroke Impact Assessment Questionnnaire, NIHSS-National Institute Of Health Stroke Scale, GAD: Generalised Anxiety Disorder, PHQ-Physical Health Questionnaire, ∫: missing in 14 subjects at 3 months follow up, NA: Not assessed because of missing data

DISCUSSION

Our results indicate that stroke patients have substantial palliative care needs within multiple domains. At three months, the stroke impairment scales (mRS, BI, NIHSS, and Canadian Neurological Scale [CNS]) showed improvement compared to baseline. Nevertheless, the social domain failed to show improvement at three months follow-up. We will discuss the findings from our study in the context of unmet palliative care needs.

The BI, which assesses independence for ADL, and the mRS, a subjective global disability scale, are two traditional stroke outcome measures used in stroke clinical trials.[18,22-24] An independent functional status (mRS 0–2) was achieved in 36% of subjects at three months and is comparable to stroke outcomes from other studies.[18,25] Despite a higher proportion of patients achieving a good outcome, as defined by mRS, a considerable proportion (98%) were severely or entirely dependent on BI. The mRS and BI scores differ in sensitivity and responsiveness to stroke recovery and explain our findings.[26] Our data show high rates of dependency for ADLs among stroke survivors and highlighting the unmet palliative care needs of survivors.

Our data also suggest a mental health burden (anxiety and depression) among stroke survivors; however, data were missing for many survivors. The prevalence of post-stroke depression and anxiety is high in stroke survivors and can directly impact their QoL.[27-29] This highlights the need to consider and address stroke survivors’ mental health with adequate screening and early referral for professional intervention, hopefully translating to a better QoL. The possible reasons for missing data include a lack of interest in answering questionnaires and the stigma surrounding mental health in India.[30,31]

There was a high symptom burden in stroke patients at baseline. This was not assessed at the follow-up given the high response burden from other questionnaires. In a cross-sectional study from China at a stroke rehabilitation center, which tried for a multi-dimensional assessment of symptom burden (including frequency, severity, and distress) within one year among stroke survivors, the mean number of symptoms in patients with stroke was found to be 11.7 ± 3.5.[32] Limb weakness was the most frequent and participation restriction was the most distressing among 19 different stroke-related symptoms contributing to the symptom burden. The number of stroke survivors’ symptoms was more than other debilitating chronic diseases such as cancer.[33,34] Dyspnea, pain, and respiratory secretions were identified as the three critical issues encountered by patients dying following a stroke diagnosis.[35] Another study from Europe identified dyspnea and pain as the most prevalent symptoms in the last days of dying stroke patients referred for palliative care.[36] Addressing these distressing symptoms is a significant challenge for the stroke palliative care team. Proper assessment of these is a crucial step in the planning of palliative intervention.

We attempted a QoL assessment using a stroke-specific tool (SIAQ) and a generic tool (WHO-QOL-BREF).[19] Our data set’s WHO-QOL-BREF scores are like other studies in the literature.[37] Among 44 individuals, WHO-BREF scores showed that 27 (62%) did not report good QoL, and 32 (73%) were found not to be satisfied with their health at a one-month follow-up. The QoL scores in physical health, psychological, and environmental domains showed statistically significant improvement at three-month follow-up. The QoL score for the social relationship domain did not differ significantly compared to the baseline measurement. The trend for an improvement in QoL scores in stroke survivors is expected.[38] The previous data show a difference in the degree of improvement across the QoL domains, which is in line with our findings.[38]

The novel tool, SIAQ, was developed by a team of researchers at our institution, keeping in mind the far-reaching consequences of stroke. SIAQ encompasses eight different domains and is culturally appropriate for the Indian context. The SIAQ scores at one-month and three-month follow-up reflect a poor QoL among stroke survivors in the present study. The QoL judged using SIAQ showed severe affection in 19 (42.22%) out of 45 patients assessed at one month, while 36 patients (80%) showed the same trend at the three-month follow-up. Higher dependency at three months, and low scores on QoL scales, reflect the unmet palliative care needs of stroke patients.

Palliative care is often confused with the end of life care.[39] According to the WHO, palliative care can be defined as care to improve the QoL and relieve suffering for patients with life-threatening disease(s).[40] Palliative care can be initiated at any stage of the disease. It can address multiple domains such as physical, psychosocial, and spiritual health.[40] A structured approach to integrating palliative care needs is recommended.[11] Attempts at integration of palliative care services with oncology care in India and LMIC couniries have been ongoing for quite some time.[10] As newer advances are being made in stroke imaging and definitive stroke treatment, including vascular interventions, minimal emphasis has been placed on the care and rehabilitation of stroke survivors who are left with a severe disability. Most patients from our study live in rural areas and often belong to lower socioeconomic strata. People from similar Indian and other LMIC settings have limited access to structured rehabilitation and palliative care services. There is accumulating evidence to suggest a growing unmet need of stroke survivors and caregivers.[41,42] Patients’ unmet needs in these various spheres need accurate estimation to facilitate patient-oriented care and optimal utilization of stroke care services. There is a growing recognition of the need to train neurologists in palliative care (Neuropalliative care); this includes integrating and expanding care services to patients with stroke, neuromuscular diseases, parkinsonism, and dementia.[43-46] Stroke is a leading cause of disability globally, and stroke patients have complex palliative care needs. Integrating palliative care into conventional stroke care can improve QoL for the patients and their families.[47,48] The data from developing countries show the disparities in the use of palliative care for stroke across different health systems influenced by patients’ age, sex, race, religion, and hospital characteristics.[49] Treating physicians in India and other LMICs, seldom find adequate time to address the suffering and symptom burden of stroke survivors and caregivers due to the higher caseload. There is a need to incorporate assessment of palliative care needs and palliative care service delivery models into routine stroke care in India and other LMICs.

Reaching this goal will require some innovative strategies and partnerships. We hope that an emphasis on assessing various domains of QoL to assess palliative care needs will address the SHS of stroke survivors and their caregivers.

This study’s strengths include the prospective nature of the study, assessing multiple domains of palliative care needs, and the use of validated and local language (Malayalam) translated versions of the scales (GAD-7, PHQ-9, and WHO-QOLBREF). The limitation of the study includes the loss to follow up of patients for three months outcome, given their rural residence and the disabling nature of the stroke. The missing three-month outcome data were due to the patients’ reluctance to provide the information over the phone. The COVID-19 pandemic also hampered the follow-up data collection. The lack of caregiver burden data prevents a holistic picture of the patient and the family. We also could not obtain the correct proportion of individuals who could resume their vocation. Finally, only patients receiving thrombolysis were admitted to the neurology unit, from where patients were recruited into the study. This makes our cohort unrepresentative of all stroke types. In addition, there is limited literature from India and other LMIC countries in this area.[14] The specific region of South India where this study has been conducted has an average annual household income of just above rupees 2 lakhs per year as per official government data (which meets the middle income criteria of the World Health Organization). This is above the national average household income. Hence, other underdeveloped regions of the country are likely to have even more unmet needs among stroke survivors.

Future studies should further explore the palliative care needs of stroke patients in India and other LMICs. Future studies focusing on interventions aimed at addressing the palliative care needs of stroke survivors would be helpful. A holistic assessment of stroke survivors, using PROMs, can help identify QOL’s impact beyond motor disability in various domains. The information obtained can be used to plan palliative care and stroke rehabilitation services in a structured manner and help plan further studies.

None of the authors report conflicts of interest.

We received seed funding from the State Board for Medical Research, Government of Kerala, India.

CONCLUSION

There is a significant burden of unmet palliative care needs in various domains among stroke survivors. It is pivotal that stroke care providers strive to address these needs to ensure better quality of life.

Ethical approval

The research/study approved by the Institutional Review Board at Government Medical College, Thiruvananthapuram, number HEC No.08/17/2019/MCT, dated September 03, 2019.

Declaration of patient consent

The authors certify that they have obtained all appropriate patient consent.

Conflicts of interest

There are no conflicts of interest.

Use of artificial intelligence (AI)-assisted technology for manuscript preparation

The authors confirm that there was no use of artificial intelligence (AI)-assisted technology for assisting in the writing or editing of the manuscript and no images were manipulated using AI.

Financial support and sponsorship

Supported by State Board Of Medical Research, Kerala.

References

  1. , , , , , , et al. The global burden of hemorrhagic stroke: A summary of findings from the GBD 2010 study. Glob Heart. 2014;9:101-6.
    [CrossRef] [PubMed] [Google Scholar]
  2. , , , , , , et al. The global burden of ischemic stroke: Findings of the GBD 2010 study. Glob Heart. 2014;9:107-12.
    [CrossRef] [PubMed] [Google Scholar]
  3. . The India: Health of the nation's states - the India state-level disease burden initiative In: Public Health Foundation. .
    [Google Scholar]
  4. . Organised inpatient (stroke unit) care for stroke. Cochrane Database Syst Rev. 2013;2013:CD000197.
    [Google Scholar]
  5. , . Stroke epidemiology and stroke care services in India. J Stroke. 2013;15:128-34.
    [CrossRef] [PubMed] [Google Scholar]
  6. . India's escalating burden of non-communicable diseases. Lancet Glob Health. 2018;6:e1262-3.
    [CrossRef] [PubMed] [Google Scholar]
  7. , , , . Poverty and stroke in India: A time to act. Stroke. 2007;38:3063-9.
    [CrossRef] [PubMed] [Google Scholar]
  8. , , , , . Burden faced by caregivers of stroke patients who attend rural-based medical teaching hospital in Western India. Ann Indian Acad Neurol. 2020;23:38-43.
    [CrossRef] [PubMed] [Google Scholar]
  9. , , , , , , et al. Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: The Lancet Commission report. Lancet. 2018;391:1391-454.
    [CrossRef] [PubMed] [Google Scholar]
  10. , , . Palliative care in India: Situation assessment and future scope. Indian J Cancer. 2015;52:99-101.
    [CrossRef] [PubMed] [Google Scholar]
  11. , , . Palliative care for stroke patients and their families: Barriers for implementation. Front Neurol. 2019;10:164.
    [CrossRef] [PubMed] [Google Scholar]
  12. , , . Psychosocial problems, quality of life, and functional independence among Indian stroke survivors. Stroke. 2010;41:2932-7.
    [CrossRef] [PubMed] [Google Scholar]
  13. , , , . Factors associated with physical and psychosocial problems among Indian stroke survivors. Indian J Palliat Care. 2019;25:18-23.
    [Google Scholar]
  14. , , , . A qualitative study on palliative needs of stroke patients in an Indian tertiary care setting-doctors' perspective. Indian J Palliat Care. 2019;25:84-91.
    [Google Scholar]
  15. , , , . A brief measure for assessing generalized anxiety disorder: The GAD-7. Arch Intern Med. 2006;166:1092-7.
    [CrossRef] [PubMed] [Google Scholar]
  16. , . Functional evaluation: The barthel index. Md State Med J. 1965;14:61-5.
    [CrossRef] [Google Scholar]
  17. , , . The PHQ-9: Validity of a brief depression severity measure. J Gen Intern Med. 2001;16:606-13.
    [CrossRef] [PubMed] [Google Scholar]
  18. , . Outcomes validity and reliability of the modified Rankin scale: Implications for stroke clinical trials: A literature review and synthesis. Stroke. 2007;38:1091-6.
    [CrossRef] [PubMed] [Google Scholar]
  19. WHOQOL - Measuring Quality of Life. Available from: https://www.who.int/substance_abuse/research_tools/whoqolbref/en [Last accessed on 2024 Feb 12]
    [Google Scholar]
  20. , , , , , , et al. Improved reliability of the NIH stroke scale using video training. NINDS TPA Stroke Study Group. Stroke. 1994;25:2220-6.
    [CrossRef] [PubMed] [Google Scholar]
  21. , , , , , . The Canadian neurological scale: Validation and reliability assessment. Neurology. 1989;39:638-43.
    [CrossRef] [PubMed] [Google Scholar]
  22. , . The Barthel Index and modified Rankin Scale as prognostic tools for long-term outcomes after stroke: A qualitative review of the literature. Curr Med Res Opin. 2007;23:1627-36.
    [CrossRef] [PubMed] [Google Scholar]
  23. , , , , . Measuring disability in stroke: Relationship between the modified Rankin scale and the Barthel index. J Neurol. 2007;254:1113-7.
    [CrossRef] [PubMed] [Google Scholar]
  24. , , , , . Health utility weighting of the modified rankin scale: A systematic review and meta-analysis. JAMA Netw Open. 2020;3:e203767.
    [CrossRef] [PubMed] [Google Scholar]
  25. , , , , , , et al. Effect of treatment delay, age, and stroke severity on the effects of intravenous thrombolysis with alteplase for acute ischaemic stroke: A meta-analysis of individual patient data from randomised trials. Lancet. 2014;384:1929-35.
    [CrossRef] [PubMed] [Google Scholar]
  26. . Differences in psychometric properties, cut-off scores, and outcomes between the Barthel Index and Modified Rankin Scale in pharmacotherapy-based stroke trials: Systematic literature review. Curr Med Res Opin. 2009;25:1329-41.
    [CrossRef] [PubMed] [Google Scholar]
  27. , , , , . Post-stroke depression: Prevalence, associated factors and impact on quality of life among outpatients in a Nigerian hospital. S Afr J Psychiatr. 2018;24:1058.
    [CrossRef] [PubMed] [Google Scholar]
  28. , , , , , , et al. Depression among stroke survivors: A community-based, prospective study from Kolkata, India. Am J Geriatr Psychiatry. 2013;21:821-31.
    [CrossRef] [PubMed] [Google Scholar]
  29. , , . Anxiety after stroke: A systematic review and meta-analysis. J Rehabil Med. 2018;50:769-78.
    [CrossRef] [PubMed] [Google Scholar]
  30. , . Stigma and discrimination as a barrier to mental health service utilization in India. Int Health. 2013;5:6-8.
    [CrossRef] [PubMed] [Google Scholar]
  31. , , , , , , et al. Non-response and related factors in a nationwide health survey. Eur J Epidemiol. 2001;17:991-9.
    [CrossRef] [PubMed] [Google Scholar]
  32. , , , , . Symptom experience and symptom burden of patients following first-ever stroke within 1 year: A cross-sectional study. Neural Regen Res. 2018;13:1907-12.
    [CrossRef] [PubMed] [Google Scholar]
  33. , , . Validation of the Arabic version of the memorial symptom assessment scale among lebanese cancer patients. J Pain Symptom Manage. 2015;50:559-65.
    [CrossRef] [PubMed] [Google Scholar]
  34. , , . Symptom prevalence and management of cancer patients in Lebanon. J Pain Symptom Manage. 2012;44:386-99.
    [CrossRef] [PubMed] [Google Scholar]
  35. , , , . Identifying palliative care issues in inpatients dying following stroke. Ir J Med Sci. 2016;185:741-4.
    [CrossRef] [PubMed] [Google Scholar]
  36. , , , . The last days of dying stroke patients referred to a palliative care consult team in an acute hospital. Eur J Neurol. 2010;17:73-7.
    [CrossRef] [PubMed] [Google Scholar]
  37. , , , , , . Cognitive impairment and quality of life among stroke survivors in Nigeria. Psychol Rep. 2007;100:876-82.
    [CrossRef] [PubMed] [Google Scholar]
  38. , , , , , . Quality of life during the first two years post stroke: The restore4stroke cohort study. Cerebrovasc Dis. 2016;41:19-26.
    [CrossRef] [PubMed] [Google Scholar]
  39. Available from: https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care [Last accessed on 2024 Feb 12]
  40. . WHO definition of palliative care Geneva: World Health Organization; .
    [Google Scholar]
  41. , , , , . The unmet needs of stroke survivors and stroke caregivers: A systematic narrative review. J Stroke Cerebrovasc Dis. 2020;29:104875.
    [CrossRef] [PubMed] [Google Scholar]
  42. , , , , , . Long-term unmet needs after stroke: Systematic review of evidence from survey studies. BMJ Open. 2019;9:e028137.
    [CrossRef] [PubMed] [Google Scholar]
  43. , , , , , . Need for palliative care for neurological diseases. Neurol Sci. 2016;37:1581-7.
    [CrossRef] [PubMed] [Google Scholar]
  44. , , , , , , et al. How integrated are neurology and palliative care services? Results of a multicentre mapping exercise. BMC Neurol. 2016;16:63.
    [CrossRef] [PubMed] [Google Scholar]
  45. , , , , , , et al. Neuropalliative care: Priorities to move the field forward. Neurology. 2018;91:217-26.
    [CrossRef] [PubMed] [Google Scholar]
  46. . Palliative care and the Indian neurologist. Ann Indian Acad Neurol. 2016;19(Suppl 1):S40-4.
    [CrossRef] [PubMed] [Google Scholar]
  47. , , , , , , et al. Palliative and end-of-life care in stroke: A statement for healthcare professionals from the American Heart Association/American Stroke Association. Stroke. 2014;45:1887-916.
    [CrossRef] [PubMed] [Google Scholar]
  48. , , , . The palliative care needs of acute stroke patients: A prospective study of hospital admissions. Age Ageing. 2010;39:554-9.
    [CrossRef] [PubMed] [Google Scholar]
  49. , , , . Palliative care for hospitalized patients with stroke: Results from the 2010 to 2012 National Inpatient Sample. Stroke. 2017;48:2534-40.
    [CrossRef] [PubMed] [Google Scholar]
Show Sections