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Table 2 Findings: evidence of palliative care models, interventions or outcomes from south Asia

From: Palliative care in South Asia: a systematic review of the evidence for care models, interventions, and outcomes

Author& Year, Country, Facility, Reference Service/intervention Aim, methods, sample Findings Conclusions
Care models (descriptive)
Ajithakumari et al., 1997 India. The Pain and Palliative Care Society of Calicut [24] Structure: Descriptive only (first year of operation). N/A N/A
One doctor with active participation of trained community volunteers.
Provision:
Free community-based outpatient clinics, home care service.
Activity:
3 to 4 visits per day for 2 days a week.
Seamark et al., 2000, India. Models of care across India [25] Inpatient care units: Descriptive only N/A N/A
a) Hospices
Shanti Avedana Ashram, branches Mumbai, Delhi and Goa.
b) Government Regional Cancer Centres:
11 Government Regional Centres. Few focus on symptom relief:
-Regional Cancer Centre, Trivandrum, Kerala.
-Palliative Care Centre, Calicut, Kerala.
-Pain clinic at Kidwai Memorial Institute of Oncology, Bangalore.
Domiciliary Services:
-Found in Bangalore, Calicut and Delhi cities.
Combined Inpatient and training centre;
-Cipla Cancer and Palliative Care Training Centre, Pune, funded by pharmaceutical company.
Palliative Care education centre;
-Calicut Center
-Shanti Avedna Ashram, Mumbai.
Rajagopal and Palat, 2002, India. Models of Palliative Care in Kerala A) Pain and Palliative Care Society (PPCS)- B) Palliative Care Patient’s Benefit Trust (PCPBT)C) Wayanad Palliative Care Consortium (WPCC) [26] A) PPCS Descriptive: N/A N/A
Provision
Outpatient clinic, home visits and inpatient care, educational programs (certificate and diploma programs).
Activity:
27 districts of Kerala via out reach link clinics.
B) PCPBT
Provision
Rehabilitation of patients and families, their children education support. Also provide financial support for those who lost livelihood due to disease.
C) WPCC
Structure
Regional cooperation model between Govt. hospital, Church and Hindu religious organization.
Bollini et al., 2004 India. Pain and Palliative Care Society (PCCS) [27] Structure Descriptive only N/A N/A
Free of charge community-based services
Provision
Outpatient clinics, supportive home care services, rehabilitation, health professionals’ training, active participation of trained community volunteers.
Most centres licensed to keep oral morphine.
Activity
In 2002, 33 clinics seeing 2000 new patients
Funding:
Private donations and international donors.
Paleri & Numpeli, 2005, India. Models of palliative care in North Kerala [28] Structure: Descriptive only N/A N/A
Volunteers raise funds; provide social, spiritual and financial support to patients; organise rehabilitation programme.
Provision:
100 palliative care services in the India with 65 centres in Kerala. 57 belong to Neighbourhood Network in Palliative
Care (NNPC).
20 palliative care units
40 home care programme
Activity:
350 home visits /week
Trained 3000 volunteers.
Finance:
90% funds raised by local community through donations.
Referral criteria:
Cancer, HIV/AIDS, paraplegia, stroke, old age and debility, psychiatric illness and chronic airway disease.
Kumar, 2007, India. Neighborhood Network in Palliative Care” (NNPC) [29] Structure: Descriptive only: services/ component offered. N/A N/A
Network to empower local community volunteers to identify and provide long term care and palliative care. More than 60 units covering population around 12 million
Provision:
Regular psychosocial and spiritual support. Home care with outpatient clinical and inpatient units in support. Identifying financial problems, patients in need of care. Create awareness in the community.
Activity:
4000 volunteers, 36 doctors and 60 nurses taking care of approx. caseload of 5000 patients.
Volunteer training −16 hours theory session + 4 days clinical training under supervision.
Funding
90% funds raised locally.
Brown et al., 2007, Nepal Collaboration of Nepalese International Network for Cancer Treatment and Research (INCTR) and Nepal Palliative Care Group. Collaboration [30] Structure: Descriptive N/A N/A
Hospice Nepal: 10 bedded, provides home care services, professional education
Kanti Children’s Hospital: sole paediatric palliative care service in Nepal. 2 beds for terminally ill.
Scheer Memorial Hospital: outreach programme to care patients in rural regions, conduct education programme.
Bhaktpur Cancer Hospital: 5 inpatient palliative care beds for, outpatient clinics 2 days/week. 24-hour phone helpline, counselling service.
B.P Koirala Memorial Cancer Hospital: Hospice service, home-based care to terminally ill patients including HIV.
Joint activity:
Education and training for professionals, development of clinical guidelines.
McDermott et al., 2008, India. Palliative home care services in India [31] Kerala: PPCS, NNPC Aims: 138 organizations providing hospice and palliative care services in 16 states and union territories. Concentrated in large cities with the exception of Kerala (n = 63). Barriers to development include: poverty, population density, geography, opioid availability, workforce development, and limited national policy.
New Delhi : CANSupport 1-Systematic overview of current palliative care services across the India No provision in 19 states/union territories. Western concept of hospice and palliative care is reshaped to suit the diverse local economic, social and cultural needs.
Assam : Guwahati Pain and Palliative Care Society (GPPCS): 2-Identify strengths and weaknesses in palliative care development Nongovernmental organizations, public and private hospitals, hospices are main providers.
Structure: Methods:
Volunteer-based -synthesis of peer review and grey literature
Provision: -ethnographic field visits
Outpatient clinic, home-care service -qualitative interviews n = 87 palliative care experts from 12 states
Coverage: -collation of existing public health data
3 towns in Assam (Rangia, Digboi, and Hojai)
Banerjee, 2009, India. CANSupport Home based palliative care for terminal cancer patients [32]. Structure: Evaluation of effectiveness of homecare teams visit in terminal cancer patients (palliative care). N/A  
10 home care teams, each with doctor, nurse and counsellor. Only presents service descriptive data. .
Community network officials, administrative staff
Provision
Home visiting, psychological support, bereavement visit, medicines aid.
Telephone helpline active for 8 hours/day for 5 days a week.
Activity:
Total patients seen by homecare teams in 2008–2009 were 1025. 104 patients were discharged. Each team travels 50–150 km per day. 47 home visits/day by team. First visit- approx. 90–120 minutes. Subsequent visits 30–45 minutes. Usual 12 months under care.
Sallnow et al., 2009, India. Neighbourhood Network in Palliative Care (NNPC) [33] Structure: Descriptive: components of NNPC N/A N/A
Home-based model of palliative care in 14 districts of Kerala, 230 clinics, 60-full time doctors and 150 staff nurses, 200 auxiliary nurses and 10,000 trained volunteers
Provision
Home care, outpatient clinics and in-patient services at Institute of Palliative Medicine (IPM) and private hospital free of charge. Medical and nursing care, spiritual and psychological care, medications, training of family members.
Activity
2500 patients/week
Referral :
End stage, non-malignant conditions (50%)Cancer patients (30%), HIV/AIDS, chronic psychiatric and problems related to old age
Funding
Raised by local community, small donations from community, government of Kerala and some international agencies.
Shad et al., 2011, Pakistan. A) Shaukat Khanum Memorial Cancer Hospital and Research Center B) Aga Khan University Hospital in Karachi C) Paediatric palliative care [34]. A) Structure: Descriptive only N/A N/A
Palliative-care physician and nurses.
Provision:
Inpatient care, outpatient clinics, 24-hour telephone helpline, pain management, training for physicians.
B) Structure:
Palliative care physician, nurse and social worker
Provision:
Inpatient, outpatient service and home care as well, training seminars
C) Children Cancer Hospital, Karachi and Children Hospital, Lahore,
Structure: small inpatient units.
Kumar, 2013, India Kerala State model of palliative care [35] Structure: 90% of all palliative care programs are in state of Kerala, which constitutes 3% of the total population of India. Incorporation of palliative care in the primary healthcare system and public health model initiated by National Rural Health Mission (NRHM) with the palliative care policy of government of Kerala Descriptive N/A Awareness achieved through civil society organizations, media and by NRHM. Decentralized system of governance in Kerala enabled palliative care provision.
Provision:
Medical and nursing services like outpatient clinics home care service by volunteers, nurses and doctors Regular supply of food for needy families.
Support for children from families of poor patients to continue their education.
Transport facilities to referral hospitals.
Rehabilitation. Psychological support by trained volunteers. Awareness campaign through local media.
Funding:
State funding by ministry of health, NRHM, and local self-government.
Outcomes (evaluation data)
Bisht et al., 2010, India. Evaluation of QOL and pain as an outcome variable of palliative care in advanced cancer patients [38]. Structure: Aim: T0 N = 100 Within palliative care, pain management is key in improving quality of life of advanced cancer patients.
Oncology clinics of a tertiary teaching hospital. To evaluate the outcome of palliative care in terms of quality of life and pain control. T1 N = 93
Provision: Study design: Observational prospective Study with 2 month follow-up. T2 N = 51
Pain management, palliative chemotherapy, surgery and radiotherapy. N = 100, mean age 52.57 years. T0 62% reported pain
Home care. Measures: T1 3%
Visual 10 point analogue scale (unspecified). T2 1%
The City of Hope Medical Reduction in pain
Centre Quality of Life survey. VAS scores (mean ± SD) in from T0 to T1 [7.13 ± 2.2 vs.2.62 ± 2.1 (p < 0.001)].
Improvement in
the QOL scores [919.78 ± 271.3 vs. 1280.65 ± 306.8(p < 0.01)]. At T2 1405.49 ± 368.3(p < 0.01)
Moderate correlation between pain intensity and quality of life scores(r = 0.53, p < 0.001).
Santha, 2011 India. Pain and Palliative care units (PPC), Ernakulum district, Kerala, home care services [36]. Structure: Aim: 52% were men (age > 60 yrs)  
22 units, of which 15 offer home care service. “Impact” study 50% beneficiaries are cancer patients
Design: Major findings:
50 patients randomly selected from 15 palliative care units. Significant difference in types of physical problems faced by the patients(Chi-square = 345.495 p = 0.01).
Study design: Retrospective descriptive survey Pain most common
Measures: Also ranked highly: social problems;
Primary data for descriptive survey with structured questionnaires from the respondents. not able to stay in job; financial problems/medical bills
The study period: 6 months, from July 2009 to January 2010 Major benefit of palliative care sig reduction of pain scores.
Dongre et al., 2012, India. Help Age India, rural Tamil Nadu [39]. Structure: Aim: At palliative care programme entry physical quality of life in intervention area =10.47 ± 1.80 SD compared to control 10.17 ± 1.82 SD (p = 0.013); for psychological support 10.13 ± 2.25 SD vs 9.8 ± 2.29 SD (p = 0.043). Programme shows no effect on domain of social relationship and environment. Affordable and effective rural palliative care for elderly population at the village level can be can be set up effectively through and community participation.
Community managed palliative care programme in villages of rural Tamil Naidu state- To evaluate rural palliative care for older people in terms of quality of life  
Provision: Study Design: Prospective cohort with control comparison group.
Home visits by doctor, volunteer, nurse and physiotherapist. Support from Palliative care programme: Home care, Support to buy drugs, rehabilitation support, food, health education, and referral services. Sampling:
Project area (n = 450)
Control area (n = 450)
N = 50 elderly persons, age >60 years in 46 villages
Control = 47 neighbouring villages.
Measure:
WHO-Quality of Life-brief questionnaire.
Follow up period of
study: From year 2007–2008.
Thayyil & Cherumanalil, 2012, India. Local self-government (Panchayats) led community-based home palliative care [37]. Structure: Aim: Diagnoses/needs: 41% degenerative disease, 15.3% malignancies, 13.5% geriatric without any specific diagnosis. The evaluation concludes that the service could address most of the medical, psychosocial, and supportive needs of the patients and reduce their
Nurse, health volunteer, social health activist, community member, health department field worker conduct home visits. To assess patients’ status and services provided Motor dysfunction (41.3%) tiredness (31.7%) and pain (27%), urinary symptoms (25%), bedridden (25%), ulcer (12.5%), oedema (10.6%), tube feeding (5.8%), urinary incontinence (16.3%), bowel control (9.6%) pain and symptoms. No change data reported.
Provision: Study design: Social needs were high with 66.3% receiving cash or material support
Medical supportive care, ulcer care, catheter services and supply of accessories Retrospective record review 2010-2011 Mean duration of care 7.8 ± 5.7 months.
n = 104. 36.5% died during period of study.
Measures: Data on patient problems and time under care extracted.