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<record><TEI><teiHeader><fileDesc><titleStmt><title xml:lang="en">Palliative care in South Asia: a systematic review of the evidence for care models, interventions, and outcomes</title><author><name sortKey="Singh, Taranjit" sort="Singh, Taranjit" uniqKey="Singh T" first="Taranjit" last="Singh">Taranjit Singh</name><affiliation><nlm:aff id="Aff1">Department of Medical Oncology & Haematology, Artemis Health Sciences Institute, Sector 51, Gurgaon, Haryana 122001 India</nlm:aff></affiliation></author><author><name sortKey="Harding, Richard" sort="Harding, Richard" uniqKey="Harding R" first="Richard" last="Harding">Richard Harding</name><affiliation><nlm:aff id="Aff2">Department of Palliative Care, Policy & Rehabilitation, King’s College London, Cicely Saunders Institute, London, UK</nlm:aff></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PMC</idno><idno type="pmid">25925664</idno><idno type="pmc">4422038</idno><idno type="url">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4422038</idno><idno type="RBID">PMC:4422038</idno><idno type="doi">10.1186/s13104-015-1102-3</idno><date when="2015">2015</date><idno type="wicri:Area/Pmc/Corpus">000810</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Corpus" wicri:corpus="PMC">000810</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en" level="a" type="main">Palliative care in South Asia: a systematic review of the evidence for care models, interventions, and outcomes</title><author><name sortKey="Singh, Taranjit" sort="Singh, Taranjit" uniqKey="Singh T" first="Taranjit" last="Singh">Taranjit Singh</name><affiliation><nlm:aff id="Aff1">Department of Medical Oncology & Haematology, Artemis Health Sciences Institute, Sector 51, Gurgaon, Haryana 122001 India</nlm:aff></affiliation></author><author><name sortKey="Harding, Richard" sort="Harding, Richard" uniqKey="Harding R" first="Richard" last="Harding">Richard Harding</name><affiliation><nlm:aff id="Aff2">Department of Palliative Care, Policy & Rehabilitation, King’s College London, Cicely Saunders Institute, London, UK</nlm:aff></affiliation></author></analytic><series><title level="j">BMC Research Notes</title><idno type="eISSN">1756-0500</idno><imprint><date when="2015">2015</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><sec><title>Background</title><p>The increasing incidence of cancer and chronic diseases in South Asia has created a growing public health and clinical need for palliative care in the region. As an emerging discipline with increasing coverage, palliative care must be guided by evidence.</p><p>In order to appraise the state of the science and inform policy and best practice in South Asia this study aimed to systematically review the evidence for palliative care models, interventions, and outcomes.</p></sec><sec><title>Results</title><p>The search identified only 16 articles, reporting a small range of services. The 16 articles identified India as having greatest number of papers (n = 14) within South Asia, largely focused in the state of Kerala. Nepal and Pakistan reported a single study each, with nothing from Bhutan, Afghanistan, Maldives or Bangladesh. Despite the large population of South Asia, we found only 4 studies reporting intervention outcomes, with the remaining reporting service descriptions (n = 12).</p></sec><sec><title>Conclusions</title><p>The dearth of evidence in terms of palliative care outcomes, and the lack of data from beyond India, highlight the urgent need for greater research investment and activity to guide the development of feasible, acceptable, appropriate and effective palliative care services. There is some evidence that suggests implementation of successful and well-developed community based models of palliative care may be replicated in other resource limited settings. Greater investigation to determine outcomes and costs are urgently needed, and require well-designed and validated tools to measure outcomes. Studies are also needed to better understand the cultural context of death and dying for patients and their families in South Asia, and to respond to the growing need for palliative and end-of-life care in the region.</p></sec></div></front><back><div1 type="bibliography"><listBibl><biblStruct></biblStruct><biblStruct></biblStruct><biblStruct><analytic><author><name sortKey="Takiar, R" uniqKey="Takiar R">R Takiar</name></author><author><name sortKey="Nadayil, D" uniqKey="Nadayil D">D Nadayil</name></author><author><name sortKey="Nandakumar, A" uniqKey="Nandakumar A">A Nandakumar</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Payne, S" uniqKey="Payne S">S Payne</name></author><author><name sortKey="Chan, N" uniqKey="Chan N">N Chan</name></author><author><name sortKey="Davies, A" uniqKey="Davies A">A Davies</name></author><author><name sortKey="Poon, E" uniqKey="Poon E">E Poon</name></author><author><name sortKey="Connor, S" uniqKey="Connor S">S 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<front><journal-meta><journal-id journal-id-type="nlm-ta">BMC Res Notes</journal-id><journal-id journal-id-type="iso-abbrev">BMC Res Notes</journal-id><journal-title-group><journal-title>BMC Research Notes</journal-title></journal-title-group><issn pub-type="epub">1756-0500</issn><publisher><publisher-name>BioMed Central</publisher-name><publisher-loc>London</publisher-loc></publisher></journal-meta><article-meta><article-id pub-id-type="pmid">25925664</article-id><article-id pub-id-type="pmc">4422038</article-id><article-id pub-id-type="publisher-id">1102</article-id><article-id pub-id-type="doi">10.1186/s13104-015-1102-3</article-id><article-categories><subj-group subj-group-type="heading"><subject>Research Article</subject></subj-group></article-categories><title-group><article-title>Palliative care in South Asia: a systematic review of the evidence for care models, interventions, and outcomes</article-title></title-group><contrib-group><contrib contrib-type="author" corresp="yes"><name><surname>Singh</surname><given-names>Taranjit</given-names></name><address><email>drtjsingh@gmail.com</email></address><xref ref-type="aff" rid="Aff1"></xref></contrib><contrib contrib-type="author"><name><surname>Harding</surname><given-names>Richard</given-names></name><address><email>richard.harding@kcl.ac.uk</email></address><xref ref-type="aff" rid="Aff2"></xref></contrib><aff id="Aff1"><label></label>Department of Medical Oncology & Haematology, Artemis Health Sciences Institute, Sector 51, Gurgaon, Haryana 122001 India</aff><aff id="Aff2"><label></label>Department of Palliative Care, Policy & Rehabilitation, King’s College London, Cicely Saunders Institute, London, UK</aff></contrib-group><pub-date pub-type="epub"><day>30</day><month>4</month><year>2015</year></pub-date><pub-date pub-type="pmc-release"><day>30</day><month>4</month><year>2015</year></pub-date><pub-date pub-type="collection"><year>2015</year></pub-date><volume>8</volume><elocation-id>172</elocation-id><history><date date-type="received"><day>9</day><month>1</month><year>2015</year></date><date date-type="accepted"><day>31</day><month>3</month><year>2015</year></date></history><permissions><copyright-statement>© Singh and Harding; licensee BioMed Central. 2015</copyright-statement><license license-type="open-access"><license-p>This is an Open Access article distributed under the terms of the Creative Commons Attribution License (<ext-link ext-link-type="uri" xlink:href="http://creativecommons.org/licenses/by/4.0">http://creativecommons.org/licenses/by/4.0</ext-link>), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (<ext-link ext-link-type="uri" xlink:href="http://creativecommons.org/publicdomain/zero/1.0/">http://creativecommons.org/publicdomain/zero/1.0/</ext-link>) applies to the data made available in this article, unless otherwise stated.</license-p></license></permissions><abstract id="Abs1"><sec><title>Background</title><p>The increasing incidence of cancer and chronic diseases in South Asia has created a growing public health and clinical need for palliative care in the region. As an emerging discipline with increasing coverage, palliative care must be guided by evidence.</p><p>In order to appraise the state of the science and inform policy and best practice in South Asia this study aimed to systematically review the evidence for palliative care models, interventions, and outcomes.</p></sec><sec><title>Results</title><p>The search identified only 16 articles, reporting a small range of services. The 16 articles identified India as having greatest number of papers (n = 14) within South Asia, largely focused in the state of Kerala. Nepal and Pakistan reported a single study each, with nothing from Bhutan, Afghanistan, Maldives or Bangladesh. Despite the large population of South Asia, we found only 4 studies reporting intervention outcomes, with the remaining reporting service descriptions (n = 12).</p></sec><sec><title>Conclusions</title><p>The dearth of evidence in terms of palliative care outcomes, and the lack of data from beyond India, highlight the urgent need for greater research investment and activity to guide the development of feasible, acceptable, appropriate and effective palliative care services. There is some evidence that suggests implementation of successful and well-developed community based models of palliative care may be replicated in other resource limited settings. Greater investigation to determine outcomes and costs are urgently needed, and require well-designed and validated tools to measure outcomes. Studies are also needed to better understand the cultural context of death and dying for patients and their families in South Asia, and to respond to the growing need for palliative and end-of-life care in the region.</p></sec></abstract><kwd-group xml:lang="en"><title>Keywords</title><kwd>Palliative care</kwd><kwd>Systematic review</kwd><kwd>End-of-life</kwd><kwd>Terminal</kwd><kwd>Asia</kwd><kwd>South Asia</kwd><kwd>Palliative care models</kwd></kwd-group><custom-meta-group><custom-meta><meta-name>issue-copyright-statement</meta-name><meta-value>© The Author(s) 2015</meta-value></custom-meta></custom-meta-group></article-meta></front><body><sec id="Sec1" sec-type="introduction"><title>Background</title><p>The World Bank defines the subcontinent of South Asia as Afghanistan, Bangladesh, Bhutan, India, Maldives, Nepal, Pakistan and Sri Lanka (also known as the South Asian Association of Regional Cooperation Countries, or SAARC). It has a combined population of about 1.65 billion, or almost a quarter of the total of the world‘s population, and all SAARC countries are classified as lower middle or low-income countries [<xref ref-type="bibr" rid="CR1">1</xref>]. An estimated 571 million people in South Asia survive on less than USD 1.25 a day, and they comprise more than 44% of the developing world’s poor (GNI per capita 1,483 USD, 2013) [<xref ref-type="bibr" rid="CR1">1</xref>].</p><p>The International Agency for Research on Cancer (ICAR) estimated the number of new cancer cases annually in South Asia to be around 1.33 million cases (1 million in India, 148,000 in Pakistan, 122,700 in Bangladesh; Nepal 18,800, Sri Lanka 23,700, Afghanistan 20,000, Bhutan 500 and Maldives 200) [<xref ref-type="bibr" rid="CR2">2</xref>]. In India, more than 80% of cancer patients present at stages 3 and 4 [<xref ref-type="bibr" rid="CR3">3</xref>]. In addition to late presentation, other factors that increase the need for palliative care include inadequate diagnostic facilities and assessment skills; poor availability of chemotherapy and radiotherapy; and absence of opioids [<xref ref-type="bibr" rid="CR4">4</xref>]. GLOBOCAN, estimated that there were 919,400 cancer deaths in the year 2012 in South Asia [<xref ref-type="bibr" rid="CR2">2</xref>,<xref ref-type="bibr" rid="CR5">5</xref>]. The most recent UNAIDS country data (2012) estimates between 2 and 2.5 million people living with HIV and AIDS in South Asia, and 150,000 HIV-related deaths [<xref ref-type="bibr" rid="CR6">6</xref>]. Incidence of other chronic diseases, including end-stage heart failure, renal and respiratory diseases, are projected to rise [<xref ref-type="bibr" rid="CR7">7</xref>-<xref ref-type="bibr" rid="CR9">9</xref>]. The field of palliative care global health is gaining greater attention, aiming to establish appropriate, locally relevant, feasible and effective palliative care for all irrespective of diagnosis, place of care or geographical region [<xref ref-type="bibr" rid="CR10">10</xref>]. The most recent global classification of palliative care provision found no evidence of palliative care provision in 19 Indian states and union territories [<xref ref-type="bibr" rid="CR11">11</xref>]. India and Nepal are categorized under Group 3b, defined as having ‘generalised palliative care provision’. Pakistan, Bangladesh and Sri Lanka are categorized to Group 3a, with ‘isolated palliative care provision’. Afghanistan, Bhutan and Maldives are categorized as Group 1, as there is no known hospice or palliative care activity [<xref ref-type="bibr" rid="CR12">12</xref>].</p><p>The implementation of the WHO’s public health approach to palliative care focuses on education, drug availability, policy and implementation [<xref ref-type="bibr" rid="CR13">13</xref>], but in addition requires local evidence to underpin strategic development of this strategy [<xref ref-type="bibr" rid="CR14">14</xref>]. Other low income regions (principally sub-Saharan Africa) have used systematic reviewing of the state of palliative care evidence in order to identify and appraise the existing evidence base [<xref ref-type="bibr" rid="CR15">15</xref>,<xref ref-type="bibr" rid="CR16">16</xref>], to highlight the required direction in order to achieve quality coverage for all [<xref ref-type="bibr" rid="CR17">17</xref>], and subsequently to rapidly grow the evidence base [<xref ref-type="bibr" rid="CR15">15</xref>,<xref ref-type="bibr" rid="CR18">18</xref>-<xref ref-type="bibr" rid="CR22">22</xref>]. In order to catalyse evidence-based policy, funding and practice, and to identify evidence gaps, the aim of this systematic review was to identify and appraise the existing evidence for palliative care models, interventions and outcomes in South Asia.</p></sec><sec id="Sec2" sec-type="materials|methods"><title>Methods</title><p>The study implemented a systematic literature review in line with PRISMA guidance [<xref ref-type="bibr" rid="CR23">23</xref>].</p><sec id="Sec3"><title>Search strategy</title><p>The following databases were searched in July 2013: Ovid MEDLINE® (1980–2013), PsycINFO (1980–2013), EMBASE (1980–2013) are presented in Table <xref rid="Tab1" ref-type="table">1</xref> search strategy. The search was updated in Feb 2014, and hand searches were conducted of the <italic>Journal of South Asian Development</italic> and <italic>Indian Journal of Palliative Care.</italic> Reference lists from retrieved articles were subsequently hand searched.<table-wrap id="Tab1"><label>Table 1</label><caption><p><bold>Search strategy</bold></p></caption><table frame="hsides" rules="groups"><thead><tr valign="top"><th><bold>#</bold></th><th><bold>Searches</bold></th><th><bold>Results</bold></th></tr></thead><tbody><tr valign="top"><td>1</td><td>hospice.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>27026</td></tr><tr valign="top"><td>2</td><td>terminal.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>791480</td></tr><tr valign="top"><td>3</td><td>terminal care.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>44526</td></tr><tr valign="top"><td>4</td><td>terminally ill.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>22478</td></tr><tr valign="top"><td>5</td><td>palliat*.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>163014</td></tr><tr valign="top"><td>6</td><td>hospice*.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>29311</td></tr><tr valign="top"><td>7</td><td>dying.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>82104</td></tr><tr valign="top"><td>8</td><td>end of life.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>31866</td></tr><tr valign="top"><td>9</td><td>advanced disease.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>30523</td></tr><tr valign="top"><td>10</td><td>life-limiting.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>1977</td></tr><tr valign="top"><td>11</td><td>life-threatening.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>122999</td></tr><tr valign="top"><td>12</td><td>death.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>1327164</td></tr><tr valign="top"><td>13</td><td>bereavement.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>19321</td></tr><tr valign="top"><td>14</td><td>1 or 2 or 3 or 4 or 5 or 6 or 7 or 8 or 9 or 10 or 11 or 12 or 13</td><td>2372812</td></tr><tr valign="top"><td>15</td><td>Asia.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>148258</td></tr><tr valign="top"><td>16</td><td>South-Asia.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>4821</td></tr><tr valign="top"><td>17</td><td>SAARC.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>39</td></tr><tr valign="top"><td>18</td><td>India.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>228512</td></tr><tr valign="top"><td>19</td><td>Pakistan.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>33005</td></tr><tr valign="top"><td>20</td><td>Bangladesh.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>20922</td></tr><tr valign="top"><td>21</td><td>Afghanistan.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>9927</td></tr><tr valign="top"><td>22</td><td>Nepal.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>13672</td></tr><tr valign="top"><td>23</td><td>Sri Lanka.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>11947</td></tr><tr valign="top"><td>24</td><td>Bhutan.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>733</td></tr><tr valign="top"><td>25</td><td>Maldives.mp. [mp = ti, ab, sh, hw, tn, ot, dm, mf, dv, kw, nm, kf, ps, rs, an, ui, tc, id, tm]</td><td>376</td></tr><tr valign="top"><td>26</td><td>15 or 16 or 17 or 18 or 19 or 20 or 21 or 22 or 23 or 24 or 25</td><td>415069</td></tr><tr valign="top"><td>27</td><td>14 and 26</td><td>20649</td></tr><tr valign="top"><td>28</td><td>limit 27 to english language</td><td>18910</td></tr><tr valign="top"><td>29</td><td>limit 28 to human</td><td>17046</td></tr><tr valign="top"><td>30</td><td>limit 29 to yr = “1980 -Current”</td><td>16470</td></tr></tbody></table><table-wrap-foot><p>Database(s): <bold>Embase</bold> 1980 to 2013 Week 33<bold>, Ovid MEDLINE(R)</bold> 1980 to August Week 3 2013<bold>, PsycINFO,</bold> 1806 to September week 1 2013.</p></table-wrap-foot></table-wrap></p><p>See search terms and inclusion exclusion criteria subsection below:</p></sec><sec id="Sec4"><title>Search terms:</title><sec id="Sec5"><title>The union of the following keywords:</title><p><list list-type="bullet"><list-item><p>(hospice, terminal, terminal care, terminally ill, palliat*, hospice*, dying, end of life, advanced disease, life-limiting, life- threatening, death, bereavement,)</p></list-item></list></p></sec><sec id="Sec6"><title>intersected with the union of the following keywords</title><p><list list-type="bullet"><list-item><p>(Asia, South Asia, SAARC, India, Pakistan, Bangladesh, Afghanistan, Nepal, Sri Lanka, Bhutan, Nepal and Maldives)</p></list-item></list></p></sec></sec><sec id="Sec7"><title>Inclusion/exclusion criteria</title><sec id="Sec8"><title>Inclusion</title><p>Data on care for human subjects</p><p>Reported in English language</p><p>Peer reviewed journal publication</p><p>Data from at least one of the SAARC countries</p><p>Data reporting palliative care models (delivery, organisation or content), interventions or outcomes using any study design from at least one of the following settings: home or community care; terminal care; inpatient care; daycare; hospital/acute settings; hospice care; primary care; nursing home; professional or volunteer/lay services; private or government tertiary services; cancer centers; governmental or non-governmental provision; daycare; domiciliary services;</p></sec><sec id="Sec9"><title>Exclusion</title><p>Case studies, commentaries, editorials and case reviews</p><p>Grey literature</p><p>Heterogeneous samples that did not disaggregate patients under palliative care.</p></sec></sec><sec id="Sec10"><title>Data extraction and analysis</title><p>The search was conducted by TS, and the appraisal of articles against inclusion/exclusion criteria agreed with RH. Data were extracted from the retained papers and entered into common tables. The common data extraction headings were country, aims, methods, sample, service description (with subheadings of structure, provision, activity and funding, each populated according to available information), findings, lessons and comments. This enabled aims, models, study designs and findings to be potentially compared. Once the search was conducted, a post-hoc decision was made not to apply quality criteria or to conduct meta-analysis due to the heterogeneity of aims and designs, and low volume of outcome data.</p></sec></sec><sec id="Sec11" sec-type="results"><title>Results</title><p>The papers yielded by the search strategy are reported using the PRISMA flow chart in Figure <xref rid="Fig1" ref-type="fig">1</xref>. A total of 16 studies were retrieved and met the inclusion criteria.<fig id="Fig1"><label>Figure 1</label><caption><p>PRISMA flow chart of search strategy.</p></caption><graphic xlink:href="13104_2015_1102_Fig1_HTML" id="MO1"></graphic></fig></p><p>The data extraction findings are reported in Table <xref rid="Tab2" ref-type="table">2</xref>.<table-wrap id="Tab2"><label>Table 2</label><caption><p><bold>Findings: evidence of palliative care models, interventions or outcomes from south Asia</bold></p></caption><table frame="hsides" rules="groups"><thead><tr valign="top"><th><bold>Author& Year, Country, Facility, Reference</bold></th><th><bold>Service/intervention</bold></th><th><bold>Aim, methods, sample</bold></th><th><bold>Findings</bold></th><th><bold>Conclusions</bold></th></tr></thead><tbody><tr valign="top"><td colspan="5"><bold>Care models (descriptive)</bold></td></tr><tr valign="top"><td rowspan="6">Ajithakumari <italic>et al.,</italic> 1997 <italic>India.</italic> The Pain and Palliative Care Society of Calicut [<xref ref-type="bibr" rid="CR24">24</xref>]</td><td><italic>Structure</italic>:</td><td rowspan="6">Descriptive only (first year of operation).</td><td rowspan="6">N/A</td><td rowspan="6">N/A</td></tr><tr valign="top"><td>One doctor with active participation of trained community volunteers.</td></tr><tr valign="top"><td><italic>Provision:</italic></td></tr><tr valign="top"><td>Free community-based outpatient clinics, home care service.</td></tr><tr valign="top"><td><italic>Activity:</italic></td></tr><tr valign="top"><td>3 to 4 visits per day for 2 days a week.</td></tr><tr valign="top"><td rowspan="15">Seamark <italic>et al.,</italic> 2000, <italic>India.</italic> Models of care across India [<xref ref-type="bibr" rid="CR25">25</xref>]</td><td><italic>Inpatient care units:</italic></td><td rowspan="15">Descriptive only</td><td rowspan="15">N/A</td><td rowspan="15">N/A</td></tr><tr valign="top"><td>a) Hospices</td></tr><tr valign="top"><td>Shanti Avedana Ashram, branches Mumbai, Delhi and Goa.</td></tr><tr valign="top"><td>b) Government Regional Cancer Centres:</td></tr><tr valign="top"><td>11 Government Regional Centres. Few focus on symptom relief:</td></tr><tr valign="top"><td>-Regional Cancer Centre, Trivandrum, Kerala.</td></tr><tr valign="top"><td>-Palliative Care Centre, Calicut, Kerala.</td></tr><tr valign="top"><td>-Pain clinic at Kidwai Memorial Institute of Oncology, Bangalore.</td></tr><tr valign="top"><td><italic>Domiciliary Services:</italic></td></tr><tr valign="top"><td>-Found in Bangalore, Calicut and Delhi cities.</td></tr><tr valign="top"><td><italic>Combined Inpatient and training centre;</italic></td></tr><tr valign="top"><td>-Cipla Cancer and Palliative Care Training Centre, Pune, funded by pharmaceutical company.</td></tr><tr valign="top"><td><italic>Palliative Care education centre;</italic></td></tr><tr valign="top"><td>-Calicut Center</td></tr><tr valign="top"><td>-Shanti Avedna Ashram, Mumbai.</td></tr><tr valign="top"><td rowspan="11">Rajagopal and Palat, 2002, <italic>India.</italic> 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) [<xref ref-type="bibr" rid="CR26">26</xref>]</td><td>A) PPCS</td><td rowspan="11">Descriptive:</td><td rowspan="11">N/A</td><td rowspan="11">N/A</td></tr><tr valign="top"><td><italic>Provision</italic></td></tr><tr valign="top"><td>Outpatient clinic, home visits and inpatient care, educational programs (certificate and diploma programs).</td></tr><tr valign="top"><td><italic>Activity</italic>:</td></tr><tr valign="top"><td>27 districts of Kerala via out reach link clinics.</td></tr><tr valign="top"><td>B) PCPBT</td></tr><tr valign="top"><td><italic>Provision</italic></td></tr><tr valign="top"><td>Rehabilitation of patients and families, their children education support. Also provide financial support for those who lost livelihood due to disease.</td></tr><tr valign="top"><td>C) WPCC</td></tr><tr valign="top"><td><italic>Structure</italic></td></tr><tr valign="top"><td>Regional cooperation model between Govt. hospital, Church and Hindu religious organization.</td></tr><tr valign="top"><td rowspan="9">Bollini <italic>et al.,</italic> 2004 <italic>India.</italic> Pain and Palliative Care Society (PCCS) [<xref ref-type="bibr" rid="CR27">27</xref>]</td><td><italic>Structure</italic></td><td rowspan="9">Descriptive only</td><td rowspan="9">N/A</td><td rowspan="9">N/A</td></tr><tr valign="top"><td>Free of charge community-based services</td></tr><tr valign="top"><td><italic>Provision</italic></td></tr><tr valign="top"><td>Outpatient clinics, supportive home care services, rehabilitation, health professionals’ training, active participation of trained community volunteers.</td></tr><tr valign="top"><td>Most centres licensed to keep oral morphine.</td></tr><tr valign="top"><td><italic>Activity</italic></td></tr><tr valign="top"><td>In 2002, 33 clinics seeing 2000 new patients</td></tr><tr valign="top"><td><italic>Funding</italic>:</td></tr><tr valign="top"><td>Private donations and international donors.</td></tr><tr valign="top"><td rowspan="14">Paleri & Numpeli, 2005, <italic>India.</italic> Models of palliative care in North Kerala [<xref ref-type="bibr" rid="CR28">28</xref>]</td><td><italic>Structure:</italic></td><td rowspan="14">Descriptive only</td><td rowspan="14">N/A</td><td rowspan="14">N/A</td></tr><tr valign="top"><td>Volunteers raise funds; provide social, spiritual and financial support to patients; organise rehabilitation programme.</td></tr><tr valign="top"><td><italic>Provision:</italic></td></tr><tr valign="top"><td>100 palliative care services in the India with 65 centres in Kerala. 57 belong to Neighbourhood Network in Palliative</td></tr><tr valign="top"><td>Care (NNPC).</td></tr><tr valign="top"><td>20 palliative care units</td></tr><tr valign="top"><td>40 home care programme</td></tr><tr valign="top"><td><italic>Activity:</italic></td></tr><tr valign="top"><td>350 home visits /week</td></tr><tr valign="top"><td>Trained 3000 volunteers.</td></tr><tr valign="top"><td><italic>Finance:</italic></td></tr><tr valign="top"><td>90% funds raised by local community through donations.</td></tr><tr valign="top"><td><italic>Referral criteria:</italic></td></tr><tr valign="top"><td>Cancer, HIV/AIDS, paraplegia, stroke, old age and debility, psychiatric illness and chronic airway disease.</td></tr><tr valign="top"><td rowspan="9">Kumar, 2007, <italic>India</italic>. Neighborhood Network in Palliative Care” (NNPC) [<xref ref-type="bibr" rid="CR29">29</xref>]</td><td><italic>Structure</italic>:</td><td rowspan="9">Descriptive only: services/ component offered.</td><td rowspan="9">N/A</td><td rowspan="9">N/A</td></tr><tr valign="top"><td>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</td></tr><tr valign="top"><td><italic>Provision:</italic></td></tr><tr valign="top"><td>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.</td></tr><tr valign="top"><td><italic>Activity:</italic></td></tr><tr valign="top"><td>4000 volunteers, 36 doctors and 60 nurses taking care of approx. caseload of 5000 patients.</td></tr><tr valign="top"><td>Volunteer training −16 hours theory session + 4 days clinical training under supervision.</td></tr><tr valign="top"><td><italic>Funding</italic></td></tr><tr valign="top"><td>90% funds raised locally.</td></tr><tr valign="top"><td rowspan="8">Brown <italic>et al</italic>., 2007, <italic>Nepal</italic> Collaboration of Nepalese International Network for Cancer Treatment and Research (INCTR) and Nepal Palliative Care Group. Collaboration [<xref ref-type="bibr" rid="CR30">30</xref>]</td><td><italic>Structure:</italic></td><td rowspan="8">Descriptive</td><td rowspan="8">N/A</td><td rowspan="8">N/A</td></tr><tr valign="top"><td>Hospice Nepal: 10 bedded, provides home care services, professional education</td></tr><tr valign="top"><td>Kanti Children’s Hospital: sole paediatric palliative care service in Nepal. 2 beds for terminally ill.</td></tr><tr valign="top"><td>Scheer Memorial Hospital: outreach programme to care patients in rural regions, conduct education programme.</td></tr><tr valign="top"><td>Bhaktpur Cancer Hospital: 5 inpatient palliative care beds for, outpatient clinics 2 days/week. 24-hour phone helpline, counselling service.</td></tr><tr valign="top"><td>B.P Koirala Memorial Cancer Hospital: Hospice service, home-based care to terminally ill patients including HIV.</td></tr><tr valign="top"><td><italic>Joint activity</italic>:</td></tr><tr valign="top"><td>Education and training for professionals, development of clinical guidelines.</td></tr><tr valign="top"><td rowspan="9">McDermott <italic>et al.</italic>, 2008, <italic>India.</italic> Palliative home care services in India [<xref ref-type="bibr" rid="CR31">31</xref>]</td><td><italic>Kerala</italic>: PPCS, NNPC</td><td>Aims:</td><td>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).</td><td>Barriers to development include: poverty, population density, geography, opioid availability, workforce development, and limited national policy.</td></tr><tr valign="top"><td><italic>New Delhi</italic><bold>:</bold> CANSupport</td><td>1-Systematic overview of current palliative care services across the India</td><td>No provision in 19 states/union territories.</td><td rowspan="8">Western concept of hospice and palliative care is reshaped to suit the diverse local economic, social and cultural needs.</td></tr><tr valign="top"><td><italic>Assam</italic><bold>:</bold> Guwahati Pain and Palliative Care Society (GPPCS):</td><td>2-Identify strengths and weaknesses in palliative care development</td><td rowspan="7">Nongovernmental organizations, public and private hospitals, hospices are main providers.</td></tr><tr valign="top"><td><italic>Structure:</italic></td><td>Methods:</td></tr><tr valign="top"><td>Volunteer-based</td><td>-synthesis of peer review and grey literature</td></tr><tr valign="top"><td><italic>Provision</italic>:</td><td>-ethnographic field visits</td></tr><tr valign="top"><td>Outpatient clinic, home-care service</td><td>-qualitative interviews n = 87 palliative care experts from 12 states</td></tr><tr valign="top"><td><italic>Coverage</italic>:</td><td rowspan="2">-collation of existing public health data</td></tr><tr valign="top"><td>3 towns in Assam (Rangia, Digboi, and Hojai)</td></tr><tr valign="top"><td rowspan="8">Banerjee, 2009, <italic>India</italic>. CANSupport Home based palliative care for terminal cancer patients [<xref ref-type="bibr" rid="CR32">32</xref>]<sup>.</sup></td><td><italic>Structure:</italic></td><td>Evaluation of effectiveness of homecare teams visit in terminal cancer patients (palliative care).</td><td rowspan="8">N/A</td><td rowspan="8"></td></tr><tr valign="top"><td>10 home care teams, each with doctor, nurse and counsellor.</td><td rowspan="7">Only presents service descriptive data. .</td></tr><tr valign="top"><td>Community network officials, administrative staff</td></tr><tr valign="top"><td><italic>Provision</italic></td></tr><tr valign="top"><td>Home visiting, psychological support, bereavement visit, medicines aid.</td></tr><tr valign="top"><td>Telephone helpline active for 8 hours/day for 5 days a week.</td></tr><tr valign="top"><td><italic>Activity:</italic></td></tr><tr valign="top"><td>Total patients seen by homecare teams in 2008–2009 were 1025. 104 patients were discharged. Each team travels 50–150 km per day. 4<bold>–</bold>7 home visits/day by team. First visit- approx. 90–120 minutes. Subsequent visits 30–45 minutes. Usual 1<bold>–</bold>2 months under care.</td></tr><tr valign="top"><td rowspan="10">Sallnow <italic>et al.,</italic> 2009, <italic>India.</italic> Neighbourhood Network in Palliative Care (NNPC) [<xref ref-type="bibr" rid="CR33">33</xref>]</td><td><italic>Structure</italic>:</td><td rowspan="10">Descriptive: components of NNPC</td><td rowspan="10">N/A</td><td rowspan="10">N/A</td></tr><tr valign="top"><td>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</td></tr><tr valign="top"><td><italic>Provision</italic></td></tr><tr valign="top"><td>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.</td></tr><tr valign="top"><td><italic>Activity</italic></td></tr><tr valign="top"><td>2500 patients/week</td></tr><tr valign="top"><td><italic>Referral</italic><bold>:</bold></td></tr><tr valign="top"><td>End stage, non-malignant conditions (50%)Cancer patients (30%), HIV/AIDS, chronic psychiatric and problems related to old age</td></tr><tr valign="top"><td><italic>Funding</italic></td></tr><tr valign="top"><td>Raised by local community, small donations from community, government of Kerala and some international agencies.</td></tr><tr valign="top"><td rowspan="10">Shad <italic>et al.,</italic> 2011, <italic>Pakistan.</italic> A) Shaukat Khanum Memorial Cancer Hospital and Research Center B) Aga Khan University Hospital in Karachi C) Paediatric palliative care [<xref ref-type="bibr" rid="CR34">34</xref>]<sup>.</sup></td><td>A) <italic>Structure:</italic></td><td rowspan="10">Descriptive only</td><td rowspan="10">N/A</td><td rowspan="10">N/A</td></tr><tr valign="top"><td>Palliative-care physician and nurses.</td></tr><tr valign="top"><td><italic>Provision:</italic></td></tr><tr valign="top"><td>Inpatient care, outpatient clinics, 24-hour telephone helpline, pain management, training for physicians<italic>.</italic></td></tr><tr valign="top"><td>B) <italic>Structure:</italic></td></tr><tr valign="top"><td>Palliative care physician, nurse and social worker</td></tr><tr valign="top"><td><italic>Provision</italic>:</td></tr><tr valign="top"><td>Inpatient, outpatient service and home care as well, training seminars</td></tr><tr valign="top"><td>C) Children Cancer Hospital, Karachi and Children Hospital, Lahore,</td></tr><tr valign="top"><td><italic>Structure:</italic> small inpatient units.</td></tr><tr valign="top"><td rowspan="8">Kumar, 2013, <italic>India</italic> Kerala State model of palliative care [<xref ref-type="bibr" rid="CR35">35</xref>]</td><td><italic>Structure:</italic> 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</td><td rowspan="8">Descriptive</td><td rowspan="8">N/A</td><td rowspan="8">Awareness achieved through civil society organizations, media and by NRHM. Decentralized system of governance in Kerala enabled palliative care provision.</td></tr><tr valign="top"><td><italic>Provision:</italic></td></tr><tr valign="top"><td>Medical and nursing services like outpatient clinics home care service by volunteers, nurses and doctors Regular supply of food for needy families.</td></tr><tr valign="top"><td>Support for children from families of poor patients to continue their education.</td></tr><tr valign="top"><td>Transport facilities to referral hospitals.</td></tr><tr valign="top"><td>Rehabilitation. Psychological support by trained volunteers. Awareness campaign through local media.</td></tr><tr valign="top"><td><italic>Funding:</italic></td></tr><tr valign="top"><td>State funding by ministry of health, NRHM, and local self-government<bold>.</bold></td></tr><tr valign="top"><td colspan="5"><bold>Outcomes (evaluation data)</bold></td></tr><tr valign="top"><td rowspan="11">Bisht <italic>et al.,</italic> 2010, <italic>India.</italic> Evaluation of QOL and pain as an outcome variable of palliative care in advanced cancer patients [<xref ref-type="bibr" rid="CR38">38</xref>]<sup>.</sup></td><td><italic>Structure:</italic></td><td><italic>Aim:</italic></td><td>T0 N = 100</td><td rowspan="11">Within palliative care, pain management is key in improving quality of life of advanced cancer patients.</td></tr><tr valign="top"><td>Oncology clinics of a tertiary teaching hospital.</td><td>To evaluate the outcome of palliative care in terms of quality of life and pain control.</td><td>T1 N = 93</td></tr><tr valign="top"><td><italic>Provision:</italic></td><td><italic>Study design:</italic> Observational prospective Study with 2 month follow-up.</td><td>T2 N = 51</td></tr><tr valign="top"><td>Pain management, palliative chemotherapy, surgery and radiotherapy.</td><td>N = 100, mean age 52.57 years.</td><td>T0 62% reported pain</td></tr><tr valign="top"><td rowspan="7">Home care.</td><td><italic>Measures:</italic></td><td>T1 3%</td></tr><tr valign="top"><td>Visual 10 point analogue scale (unspecified).</td><td>T2 1%</td></tr><tr valign="top"><td>The City of Hope Medical</td><td>Reduction in pain</td></tr><tr valign="top"><td rowspan="4">Centre Quality of Life survey.</td><td>VAS scores (mean ± SD) in from T0 to T1 [7.13 ± 2.2 vs.2.62 ± 2.1 (p < 0.001)].</td></tr><tr valign="top"><td>Improvement in</td></tr><tr valign="top"><td>the QOL scores [919.78 ± 271.3 vs. 1280.65 ± 306.8(p < 0.01)]. At T2 1405.49 ± 368.3(p < 0.01)</td></tr><tr valign="top"><td>Moderate correlation between pain intensity and quality of life scores(r = 0.53, p < 0.001).</td></tr><tr valign="top"><td rowspan="8">Santha, 2011 <italic>India</italic>. Pain and Palliative care units (PPC), Ernakulum district, Kerala, home care services [<xref ref-type="bibr" rid="CR36">36</xref>].</td><td><italic>Structure:</italic></td><td><italic>Aim:</italic></td><td>52% were men (age > 60 yrs)</td><td rowspan="8"></td></tr><tr valign="top"><td rowspan="7">22 units, of which 15 offer home care service.</td><td>“Impact” study</td><td>50% beneficiaries are cancer patients</td></tr><tr valign="top"><td><italic>Design:</italic></td><td>Major findings:</td></tr><tr valign="top"><td>50 patients randomly selected from 15 palliative care units.</td><td>Significant difference in types of physical problems faced by the patients(Chi-square = 345.495 p = 0.01).</td></tr><tr valign="top"><td><italic>Study design:</italic> Retrospective descriptive survey</td><td>Pain most common</td></tr><tr valign="top"><td><italic>Measures:</italic></td><td>Also ranked highly: social problems;</td></tr><tr valign="top"><td>Primary data for descriptive survey with structured questionnaires from the respondents.</td><td>not able to stay in job; financial problems/medical bills</td></tr><tr valign="top"><td>The study period: 6 months, from July 2009 to January 2010</td><td>Major benefit of palliative care sig reduction of pain scores.</td></tr><tr valign="top"><td rowspan="12">Dongre <italic>et al.,</italic> 2012, <italic>India.</italic> Help Age India, rural Tamil Nadu [<xref ref-type="bibr" rid="CR39">39</xref>].</td><td><italic>Structure:</italic></td><td><italic>Aim:</italic></td><td>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.</td><td rowspan="12">Affordable and effective rural palliative care for elderly population at the village level can be can be set up effectively through and community participation.</td></tr><tr valign="top"><td>Community managed palliative care programme in villages of rural Tamil Naidu state-</td><td>To evaluate rural palliative care for older people in terms of quality of life</td><td rowspan="11"></td></tr><tr valign="top"><td><italic>Provision:</italic></td><td><italic>Study Design:</italic> Prospective cohort with control comparison group.</td></tr><tr valign="top"><td rowspan="9">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.</td><td><italic>Sampling:</italic></td></tr><tr valign="top"><td>Project area (n = 450)</td></tr><tr valign="top"><td>Control area (n = 450)</td></tr><tr valign="top"><td>N = 50 elderly persons, age >60 years in 46 villages</td></tr><tr valign="top"><td>Control = 47 neighbouring villages.</td></tr><tr valign="top"><td><italic>Measure:</italic></td></tr><tr valign="top"><td>WHO-Quality of Life-brief questionnaire.</td></tr><tr valign="top"><td><italic>Follow up period of</italic></td></tr><tr valign="top"><td><italic>study:</italic> From year 2007–2008.</td></tr><tr valign="top"><td rowspan="6">Thayyil & Cherumanalil, 2012, <italic>India</italic>. Local self-government (Panchayats) led community-based home palliative care [<xref ref-type="bibr" rid="CR37">37</xref>]<sup>.</sup></td><td><italic>Structure:</italic></td><td><italic>Aim:</italic></td><td><italic>Diagnoses/needs:</italic> 41% degenerative disease, 15.3% malignancies, 13.5% geriatric without any specific diagnosis.</td><td>The evaluation concludes that the service could address most of the medical, psychosocial, and supportive needs of the patients and reduce their</td></tr><tr valign="top"><td>Nurse, health volunteer, social health activist, community member, health department field worker conduct home visits.</td><td>To assess patients’ status and services provided</td><td>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%)</td><td rowspan="5">pain and symptoms. No change data reported.</td></tr><tr valign="top"><td><italic>Provision:</italic></td><td><italic>Study design:</italic></td><td>Social needs were high with 66.3% receiving cash or material support</td></tr><tr valign="top"><td rowspan="3">Medical supportive care, ulcer care, catheter services and supply of accessories</td><td>Retrospective record review 2010-2011</td><td>Mean duration of care 7.8 ± 5.7 months.</td></tr><tr valign="top"><td>n = 104.</td><td>36.5% died during period of study.</td></tr><tr valign="top"><td><italic>Measures:</italic> Data on patient problems and time under care extracted.</td><td></td></tr></tbody></table></table-wrap></p><sec id="Sec12"><title>Summary of aims and countries of origin</title><p>Of the 16 articles retained, 12 reported service description [<xref ref-type="bibr" rid="CR24">24</xref>-<xref ref-type="bibr" rid="CR35">35</xref>], 2 reported service with evaluation data [<xref ref-type="bibr" rid="CR36">36</xref>,<xref ref-type="bibr" rid="CR37">37</xref>] and 2 reported outcomes [<xref ref-type="bibr" rid="CR38">38</xref>,<xref ref-type="bibr" rid="CR39">39</xref>]. 1 article aimed to collect evaluation data, but actually presented only descriptive data [<xref ref-type="bibr" rid="CR32">32</xref>]. 14 articles reported data from India, 1 from Nepal [<xref ref-type="bibr" rid="CR34">34</xref>] and 1 Pakistan [<xref ref-type="bibr" rid="CR30">30</xref>]. No articles were found originating from Afghanistan, Sri Lanka, Bhutan, Maldives, or Bangladesh. Of these 16 papers, the first was published in 1997, and 6 were published during 5 years prior to the search.</p><sec id="Sec13"><title>Service descriptions</title><p>The 11 service descriptions addressed a diversity of care models including home care, cancer centres, hospital consult teams and outpatient clinics. The teams were largely multi-professional, and addressed holistic care needs with an emphasis on rehabilitation and socioeconomic support. The Kerala model is well described in the literature, with a strong community participation approach. Importantly, two pediatric palliative care services were described [<xref ref-type="bibr" rid="CR30">30</xref>,<xref ref-type="bibr" rid="CR34">34</xref>].</p></sec></sec><sec id="Sec14"><title>Methodological designs & findings</title><p>The four papers reporting service evaluations or outcomes used the following designs: a retrospective survey [<xref ref-type="bibr" rid="CR36">36</xref>]a retrospective file review [<xref ref-type="bibr" rid="CR37">37</xref>] a prospective longitudinal cohort [<xref ref-type="bibr" rid="CR38">38</xref>], and a prospective cohort with control comparison group [<xref ref-type="bibr" rid="CR39">39</xref>] and (as stated above, one paper described as an evaluation only provided service description data). No (quasi) experimental designs were identified.</p><p>In terms of the findings, significant improvements in self-report pain among cancer patients were reported (although this prospective study lacked a comparison group [<xref ref-type="bibr" rid="CR38">38</xref>] and improvements in satisfaction and pain relief reported (although this was retrospective, and again had no comparison group [<xref ref-type="bibr" rid="CR36">36</xref>]. The prospective comparative cohort study of palliative care for older people found perceived physical quality of life and psychological support among elderly persons was significantly better than the control villages [<xref ref-type="bibr" rid="CR39">39</xref>], and lastly the retrospective file review of patient problems found a high prevalence of multidimensional needs but did not offer change data to support the conclusion that the service controlled these problems [<xref ref-type="bibr" rid="CR37">37</xref>].</p></sec></sec><sec id="Sec15" sec-type="discussion"><title>Discussion</title><p>It is notable that despite the large population and epidemiology of cancer and HIV, there is very small evidence base from which to determine optimal models and interventions of care. It is a strength that there is such innovation and diversity of models, and the Kerala model has been well described and lauded as an appropriate model which other regions may usefully replicate. In terms of the evidence of feasibility and acceptability of palliative care, India has the strongest available literature from the South Asia region. Indian services should be recognised for their commitment to development and implementation of care services, and neighbouring SAARC countries should be encouraged and enabled to improve their coverage similarly. The work to date on model development and initial evaluation places India in particular in a position of readiness to move to more robust outcomes-focused research. The data provides some data on identification of needs, change over time within cohorts under palliative care, and importantly has been generated across diverse settings. In order to move to robust (quasi) experimental evaluative study designs appropriate for palliative care populations, [<xref ref-type="bibr" rid="CR40">40</xref>] an important next step is the provision of appropriate, valid and reliable outcome measures that reflect the needs of patients and families in India facing life-limiting progressive illness. The development of validation of outcome measurement for African palliative has catalysed research activity in palliative care [<xref ref-type="bibr" rid="CR41">41</xref>,<xref ref-type="bibr" rid="CR42">42</xref>]. Palliative care research in India is timely, as palliative care services have been shown to be plausible and sustained. The apparently successful Indian public health approach to palliative care in Kerala should be evaluated to identify and share successful strategies and lessons learned. Additional lessons that are worthy of investigation are the strengths, challenges and mechanisms of volunteerism in India, and the financing models of services that are community-funded and supported. In light of the service descriptions of paediatric palliative care, it has previously been identified that little evidence exists on outcomes of such models in low and middle income countries [<xref ref-type="bibr" rid="CR16">16</xref>], and we would urge a research focus on this specific population.</p><p>We have noted that the majority of data have been published from India, and this suggests that they are in the relatively better position to drive forward the research activities in the region. Within India we also recognize disparity, as the papers suggest that most published work has originated in the south, mostly in or around the state of Kerala, where the literacy rate ranks among the highest in the country, and the population growth rate the lowest [<xref ref-type="bibr" rid="CR43">43</xref>]. The fact that the search found no articles originating from Afghanistan, Sri Lanka, Bhutan, Maldives, or Bangladesh underlines the importance of undertaking work in these countries, where evidence suggests particularly poor access to palliative care and to opioid pain relief [<xref ref-type="bibr" rid="CR44">44</xref>,<xref ref-type="bibr" rid="CR45">45</xref>]. Qualitative studies are also needed to better understand the cultural context of death and dying for patients and their families in South Asia.</p></sec><sec id="Sec16" sec-type="conclusion"><title>Conclusions</title><p>In conclusion, the body of evidence for palliative care in South Asian Association of Regional Cooperation countries is not reflective of the size of population in need. In light of the limited resources available for health systems, evidence is even more important to guide appropriate and effective services. Without adequate assessment, the provision of appropriate, evidence-based palliative care is unlikely to occur; the need for well-designed and validated tools to measure outcomes is paramount to advancing palliative care in a region marked by dire need for it.</p></sec></body><back><glossary><title>Abbreviations</title><def-list><def-item><term>PRISMA</term><def><p>Preferred Reporting Items for Systematic Reviews and Meta-Analyses</p></def></def-item><def-item><term>SAARC</term><def><p>South Asian Association of Regional Cooperation</p></def></def-item><def-item><term>GNI</term><def><p>Gross National Income</p></def></def-item><def-item><term>USD</term><def><p>United States Dollar</p></def></def-item><def-item><term>ICAR</term><def><p>International Agency for Research on Cancer</p></def></def-item><def-item><term>UNAIDS</term><def><p>Joint United Nations Programme on HIV/AIDS</p></def></def-item><def-item><term>HIV</term><def><p>Human Immunodeficiency Virus</p></def></def-item><def-item><term>AIDS</term><def><p>Acquired Immunodeficiency Syndrome</p></def></def-item><def-item><term>WHO</term><def><p>World Health Organization</p></def></def-item><def-item><term>PPCS</term><def><p>Pain and Palliative Care Society</p></def></def-item><def-item><term>PCPBT</term><def><p>Palliative Care Patient’s Benefit Trust</p></def></def-item><def-item><term>WPCC</term><def><p>Wayanad Palliative Care Consortium</p></def></def-item><def-item><term>NNPC</term><def><p>Neighborhood Network in Palliative Care</p></def></def-item><def-item><term>INCTR</term><def><p>International Network for Cancer Treatment and Research</p></def></def-item><def-item><term>GPPCS</term><def><p>Guwahati Pain and Palliative Care Society</p></def></def-item><def-item><term>IPM</term><def><p>Institute of Palliative Medicine</p></def></def-item><def-item><term>NRHM</term><def><p>National Rural Health Mission</p></def></def-item><def-item><term>QOL</term><def><p>Quality of Life</p></def></def-item><def-item><term>VAS</term><def><p>Visual Analogue Scale</p></def></def-item><def-item><term>PPC</term><def><p>Pain and Palliative Care units</p></def></def-item><def-item><term>NGOs</term><def><p>Non-Governmental Organizations</p></def></def-item></def-list></glossary><fn-group><fn><p><bold>Competing interests</bold></p><p>The authors declare that they have no competing interests.</p></fn><fn><p><bold>Authors’ contributions</bold></p><p>Both authors critically reviewed the manuscript, read and approved the final manuscript.</p></fn></fn-group><ack><title>Acknowledgements</title><p>Dr Taranjit Singh would like to acknowledge the postgraduate education programme at the Cicely Saunders Institute, Kings College London. 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