Defining and measuring unmet palliative care needs among people with life-limiting illness: a scoping review of international evidence

Defining and measuring unmet palliative care needs among people with life-limiting illness: a scoping review of international evidence | medRxiv /* */ /* */ <!-- <!-- /*! * yepnope1.5.4 * (c) WTFPL, GPLv2 */ (function(a,b,c){function d(a){return"[object Function]"==o.call(a)}function e(a){return"string"==typeof a}function f(){}function g(a){return!a||"loaded"==a||"complete"==a||"uninitialized"==a}function h(){var a=p.shift();q=1,a?a.t?m(function(){("c"==a.t?B.injectCss:B.injectJs)(a.s,0,a.a,a.x,a.e,1)},0):(a(),h()):q=0}function i(a,c,d,e,f,i,j){function k(b){if(!o&&g(l.readyState)&&(u.r=o=1,!q&&h(),l.onload=l.onreadystatechange=null,b)){"img"!=a&&m(function(){t.removeChild(l)},50);for(var d in y[c])y[c].hasOwnProperty(d)&&y[c][d].onload()}}var j=j||B.errorTimeout,l=b.createElement(a),o=0,r=0,u={t:d,s:c,e:f,a:i,x:j};1===y[c]&&(r=1,y[c]=[]),"object"==a?l.data=c:(l.src=c,l.type=a),l.width=l.height="0",l.onerror=l.onload=l.onreadystatechange=function(){k.call(this,r)},p.splice(e,0,u),"img"!=a&&(r||2===y[c]?(t.insertBefore(l,s?null:n),m(k,j)):y[c].push(l))}function j(a,b,c,d,f){return q=0,b=b||"j",e(a)?i("c"==b?v:u,a,b,this.i++,c,d,f):(p.splice(this.i++,0,a),1==p.length&&h()),this}function k(){var a=B;return a.loader={load:j,i:0},a}var l=b.documentElement,m=a.setTimeout,n=b.getElementsByTagName("script")[0],o={}.toString,p=[],q=0,r="MozAppearance"in l.style,s=r&&!!b.createRange().compareNode,t=s?l:n.parentNode,l=a.opera&&"[object Opera]"==o.call(a.opera),l=!!b.attachEvent&&!l,u=r?"object":l?"script":"img",v=l?"script":u,w=Array.isArray||function(a){return"[object Array]"==o.call(a)},x=[],y={},z={timeout:function(a,b){return b.length&&(a.timeout=b[0]),a}},A,B;B=function(a){function b(a){var a=a.split("!"),b=x.length,c=a.pop(),d=a.length,c={url:c,origUrl:c,prefixes:a},e,f,g;for(f=0;f<d;f++)g=a[f].split("="),(e=z[g.shift()])&&(c=e(c,g));for(f=0;f<b;f++)c=x[f](c);return c}function g(a,e,f,g,h){var i=b(a),j=i.autoCallback;i.url.split(".").pop().split("?").shift(),i.bypass||(e&&(e=d(e)?e:e[a]||e[g]||e[a.split("/").pop().split("?")[0]]),i.instead?i.instead(a,e,f,g,h):(y[i.url]?i.noexec=!0:y[i.url]=1,f.load(i.url,i.forceCSS||!i.forceJS&&"css"==i.url.split(".").pop().split("?").shift()?"c":c,i.noexec,i.attrs,i.timeout),(d(e)||d(j))&&f.load(function(){k(),e&&e(i.origUrl,h,g),j&&j(i.origUrl,h,g),y[i.url]=2})))}function h(a,b){function c(a,c){if(a){if(e(a))c||(j=function(){var a=[].slice.call(arguments);k.apply(this,a),l()}),g(a,j,b,0,h);else if(Object(a)===a)for(n in m=function(){var b=0,c;for(c in a)a.hasOwnProperty(c)&&b++;return b}(),a)a.hasOwnProperty(n)&&(!c&&!--m&&(d(j)?j=function(){var a=[].slice.call(arguments);k.apply(this,a),l()}:j[n]=function(a){return function(){var b=[].slice.call(arguments);a&&a.apply(this,b),l()}}(k[n])),g(a[n],j,b,n,h))}else!c&&l()}var h=!!a.test,i=a.load||a.both,j=a.callback||f,k=j,l=a.complete||f,m,n;c(h?a.yep:a.nope,!!i),i&&c(i)}var i,j,l=this.yepnope.loader;if(e(a))g(a,0,l,0);else if(w(a))for(i=0;i (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0];var j=d.createElement(s);var dl=l!='dataLayer'?'&l='+l:'';j.src='//www.googletagmanager.com/gtm.js?id='+i+dl;j.type='text/javascript';j.async=true;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-P4HH5NV'); Skip to main content Home About Submit ALERTS / RSS Search for this keyword Advanced Search Defining and measuring unmet palliative care needs among people with life-limiting illness: a scoping review of international evidence View ORCID Profile Therese Johansson , Melanie Diggle , View ORCID Profile Anne Finucance , View ORCID Profile Joanna M Davies , View ORCID Profile Irene J Higginson , View ORCID Profile Katherine E Sleeman , View ORCID Profile Lorna K Fraser , View ORCID Profile Fliss E M Murtagh , View ORCID Profile Anna E Bone doi: https://doi.org/10.1101/2025.07.07.25330993 Therese Johansson 1 Cicely Saunders Institute of Palliative Care , Policy & Rehabilitation, Florence Nightingale, Faculty of Nursing , Midwifery & Palliative Care, King’s College London , London, UK Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Therese Johansson For correspondence: therese.johansson{at}kcl.ac.uk Melanie Diggle 1 Cicely Saunders Institute of Palliative Care , Policy & Rehabilitation, Florence Nightingale, Faculty of Nursing , Midwifery & Palliative Care, King’s College London , London, UK Find this author on Google Scholar Find this author on PubMed Search for this author on this site Anne Finucance 2 Clinical Psychology, School of Health in Social Science, University of Edinburgh , Edinburgh, UK Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Anne Finucance Joanna M Davies 1 Cicely Saunders Institute of Palliative Care , Policy & Rehabilitation, Florence Nightingale, Faculty of Nursing , Midwifery & Palliative Care, King’s College London , London, UK Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Joanna M Davies Irene J Higginson 1 Cicely Saunders Institute of Palliative Care , Policy & Rehabilitation, Florence Nightingale, Faculty of Nursing , Midwifery & Palliative Care, King’s College London , London, UK Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Irene J Higginson Katherine E Sleeman 1 Cicely Saunders Institute of Palliative Care , Policy & Rehabilitation, Florence Nightingale, Faculty of Nursing , Midwifery & Palliative Care, King’s College London , London, UK Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Katherine E Sleeman Lorna K Fraser 1 Cicely Saunders Institute of Palliative Care , Policy & Rehabilitation, Florence Nightingale, Faculty of Nursing , Midwifery & Palliative Care, King’s College London , London, UK Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Lorna K Fraser Fliss E M Murtagh 3 Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull , Hull, UK Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Fliss E M Murtagh Anna E Bone 1 Cicely Saunders Institute of Palliative Care , Policy & Rehabilitation, Florence Nightingale, Faculty of Nursing , Midwifery & Palliative Care, King’s College London , London, UK Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for Anna E Bone Abstract Full Text Info/History Metrics Supplementary material Data/Code Preview PDF Abstract Background Quantifying palliative care needs and whether they are met is essential for effective service planning and provision. Estimates of palliative care needs are widely reported but less is known about unmet needs, with no accepted definition of this construct or guidance on how to measure it. Aim To investigate how unmet palliative care needs for adults with advanced life-limiting illness have been defined, measured, and reported in the evidence. Design Scoping review following the Joanna Briggs Institute guidelines. Data sources In October 2024, we systematically searched MEDLINE, EMBASE, CINAHL, and PsycINFO for quantitative and mixed-methods studies published after 2000. Additional backward and forward citation and manual searching of grey literature sources were performed. Data on the definitions, measurement and reporting of unmet needs were extracted and charted and summarised narratively using inductive content analysis and framework synthesis. Results Seventy studies were included: nine reviews and 61 primary evidence studies from 16 countries. Only 11 (16%) studies explicitly defined unmet palliative care needs, usually as a discrepancy between required and received care. We identified three approaches to measurement: of unmet palliative care needs: 1) symptoms and concerns ; 2) access to services ; and 3) sufficiency of service provision to resolve symptoms and concerns . Conclusions This novel review highlights a lack of consensus regarding the definition, measurement and reporting of unmet palliative care needs. Three approaches identified in the review emphasise different aspects of unmet needs: their strengths and limitations are discussed and guidance on their use is provided for various end-users. What is already known about the topic? Prevalence of palliative care needs are widely reported in research and policy, but how unmet needs are defined and measured is less well understood. What this paper adds Few studies provide a clear, detailed definition of unmet palliative care needs. We identify three main approaches to measuring unmet needs in palliative care research, by quantifying: 1) Symptoms and concerns; 2) Access to services; and 3) Sufficiency of service provision to resolve symptoms and concerns. There is little focus on non-cancer populations and few reports of involvement of patients and carers in studies measuring unmet palliative care needs. Implications for practice, theory or policy Methodological strengths and limitations of the three identified approaches to measuring unmet palliative care needs are discussed. To address the knowledge gaps identified, recommendations for reporting of definitions and how these are operationalised are provided. Background With population ageing, rising multimorbidity, and increasing health-related suffering ( 1 – 4 ), providing timely and adequate palliative care is becoming a major public health priority. Despite palliative care being recognized as a human right ( 5 ), barriers to access persist, leaving some needs unmet. Unmet care needs are concerning at the individual, group and societal level. Assessing and quantifying unmet palliative care needs of a population is essential to inform effective planning and delivery of healthcare services and reduce inequitable access ( 6 – 8 ), yet guidance on how best to define and measure this construct is lacking. In healthcare research, care needs are commonly defined using Bradshaw’s typology as the ‘ability to benefit from healthcare services’ ( 9 ). These needs can be further categorised as: 1) felt need (individual perceptions of need); 2) expressed need (perceived need resulting in demanded care); 3) normative need (defined by experts and thus largely based on healthcare professionals’ perceptions) and 4) comparative need (needs compared across different groups) ( 9 ). While other frameworks for conceptualising need exist, e.g., Maslow’s hierarchy of need, Bradshaw’s typology is particularly useful in palliative care as it highlights who determines the need (which influences what is reported as need) rather than simply the what the need is ( 10 ). A needs assessment is a process to determine need for care services in relation to health problems, either at the individual level (e.g., clinical assessments of patients’ healthcare needs) or population-level (e.g., evaluating community needs for care services) ( 11 ). A review by Franks et al. ( 12 ) identified two main methods for population-level palliative care needs assessment: an epidemiological approach based on symptom prevalence among patients in advanced stages of life-limiting conditions presumed to benefit from palliative care; and an approach based on healthcare service use. It is also vital to understand how many do not have their palliative care needs met, but the lack of an accepted definition of unmet palliative care needs makes estimations difficult. The present review expands on Franks et al.’s findings by focusing on unmet palliative care needs while broadening the scope beyond prior reviews, which have often focused on unmet needs in specific patient groups or care settings( 13 , 14 ).To inform our search strategies for, we constructed operational definitions of ‘palliative care need’ and ‘unmet palliative care need’ from definitions of needs and unmet needs in the broader health and care literature ( 15 – 18 ) and the World Health Organisation’s classification of palliative care as a holistic care approach to improve the quality of life of patients with life-limiting illness and their families ( 5 , 19 ). To operationalise this, we defined palliative care needs as “the ability for people with life-limiting illness to benefit from available care to manage a range of symptoms and concerns including physical, psychological, social, spiritual, informational, and practical”. These needs can be addressed by specialist and/or generalist palliative care professionals, or a combination of both ( 20 ). We defined unmet palliative care needs as “the difference or gap between required or expected care and actual care received by people with life-limiting illness”. This review aimed to clarify concepts in the literature by addressing the question: How have unmet palliative care needs for adults with advanced life-limiting illness been defined, measured, and reported in the evidence? Methods Design This scoping review follows the methodological guidelines set out by the Joanna Briggs Institute (JBI) ( 21 ) and is reported according to the Preferred Reporting Items for Systematic Reviews and Meta Analyses extension for Scoping Reviews (PRISMA ScR) ( 22 ). The review protocol was registered on the Open Science Framework (registration reference: https://doi.org/10.17605/OSF.IO/M8DHA ). Eligibility criteria We included studies reporting quantitative data on how unmet needs of adults (aged 18+ years) with advanced life-limiting illness were defined, measured and reported. Table 1 presents the full inclusion and exclusion criteria. Peer-reviewed quantitative and mixed-methods studies were included, as were systematic and scoping reviews reporting results from quantitative and mixed-methods studies. Grey literature (reports but not published abstracts) that quantitatively measured unmet palliative care needs was also included. Only English-language sources were included. To ensure that the review built on the review by Franks et al. (2000) ( 12 ), we only included papers and grey literature evidence published in 2001 or after. View this table: View inline View popup Download powerpoint Table 1. Inclusion and exclusion criteria for the literature database searches. Search strategy An initial PubMed scoping search of identified relevant published articles and identify target papers. Keywords from titles and abstracts and index terms assigned to the articles from the initial search informed the final search strategy for MEDLINE (Ovid), EMBASE (Ovid), CINAHL (EBSCO) and PsycINFO (Ovid) (see Supplemental file 1). The search strategy was developed in collaboration with an information specialist and adapted for each database and/or information source. Target papers for inclusion in the search strategy were set to check the robustness of the search. All databases were searched on 2 October 2024. Grey literature was hand-searched by one reviewer (MD) across relevant websites (Hospice UK, National Council for Palliative Care, Marie Curie, Macmillan Cancer Support, The Kings Fund, The Nuffield Trust, RAND and RAND Europe, The Lien Foundation, The Health Foundation, The Strategy Unit and World Health Organisation). Additional grey literature was identified through Open Grey and Google Scholar (using the first 100 references) ( 21 ). Forward citation searching of included studies was undertaken using Scopus. Study selection All papers identified from the searches were imported into Covidence and duplicates removed. Titles and abstracts were screened against the inclusion criteria by a single reviewer (TJ/MD/LF/AF), with a subset of 20% papers independently screened by a second reviewer to ensure screening consistency. Full-text screening was conducted by a single reviewer (TJ/MD), with 20% independently screened by a second reviewer (AF/LF) to check agreement. Any disagreements were resolved through discussion with a third reviewer. Data extraction and charting Data from eligible papers and evidence sources were extracted verbatim, where possible, by a single reviewer (TJ/MD/AB) using a bespoke data extraction form in Covidence (see Supplement file 2). A second reviewer (AB/AF) independently checked 20% of the extracted data for accuracy. Any discrepancies between the reviewers were settled through discussion with a third reviewer. Our extraction form was adapted from the JBI template ( 21 ) to fit the review aim, to capture data on study characteristics (e.g. authors, publication year, study design, population); how unmet palliative care needs were defined and measured; and reported (e.g., presentation of study findings of prevalence of unmet needs). For systematic reviews, only review authors’ definitions and operationalisations of unmet palliative care needs, and conclusions regarding its measurement were extracted (excluding primary study results). Data were extracted at study-level; if several papers reported the same study, only one set of data was extracted. Data were recorded and analysed in Microsoft Excel. Data analysis Following scoping review guidance, no quality appraisal was conducted, as the aim was to provide a descriptive overview of the available evidence rather than assess study quality) ( 23 , 24 ). Data analysis focused on summarising relevant study findings, both by charting and by narrative summary using inductive content analysis ( 21 , 25 ). Whether studies defined unmet palliative care needs or not was inductively coded as ‘yes’ (a clear explanation of ‘unmet needs’ within a palliative or supportive care context), ‘partially’ (addressing unmet needs, often using prior research findings suggesting issues with palliative care access, but without explicitly delineating the construct) and ‘no’ (no explanation of the construct). To identify and map the dimensions of unmet needs captured in existing measures, we conducted a framework synthesis ( 21 , 26 ) based on the domains in Goni-Fuste et al.’s ( 27 ) review of comprehensive palliative care needs assessments, encompassing Physical , Psychological , Spiritual , Social , Information , Financial / legal (e.g., preparing wills), Practical (e.g. household tasks), Autonomy (e.g., dependency on others), Role activities (e.g., difficulties with employment), Personal issues (e.g., handling personal affairs), Healthcare (e.g., support from healthcare professionals). Domains were added as needed ( 26 ). Results The searches and study inclusion are presented in a PRISMA flow diagram in Figure 1 ( 28 ). The database searches identified a total of 4,513 sources after duplicates were removed. Following the title and abstract screening, 274 sources were sought for full-text review. After full-text screening against inclusion and exclusion criteria, 70 studies (reported in 74 peer-reviewed scientific papers, and in one grey literature source) were included. Download figure Open in new tab Figure 1. PRISMA flow diagram of study selection. The included studies were published between 2001-2024. In total, 61 were primary evidence studies (i.e., original research) ( 29 – 90 ), and nine were reviews ( 91 – 99 ). The original studies (n=61) were conducted in 16 countries, primarily Western countries such as the United States (n=23), Australia (n=9), Canada (n=5), and the United Kingdom (n=5). Study descriptives Study designs Details of study characteristics are presented in Table 2 . Most included studies used observational designs: commonly cross-sectional (n=43, 59%), prospective cohort (n=8, 11%), and retrospective cohort (n=6, 9%) designs. The primary evidence studies that directly measured unmet palliative care needs, mostly used convenience samples (n=49, 80%). Only two primary evidence studies reported on patient and public involvement (PPI): one mentioned PPI input when developing the measure ( 86 ), and one other pilot-tested their questionnaire to ensure it was not too distressing ( 31 ). View this table: View inline View popup Table 2. Characteristics of included studies (n=70), ordered by study design. Populations and settings As shown in Table 2 , most studies (n=45, 64%) focused on unmet needs within a single disease group, commonly advanced cancer (n=36, 51%), with three (3%) studies comparing two groups. One-third of studies (n=23, 33%) included patients or decedents with any life-limiting illness. Study settings varied: most studies used hospital settings (n=40,57%) (including cancer centres and outpatient clinics), whereas 11 (16%) focused on palliative care services (including hospices, hospital units, and home care). Eleven (16%) studies included participants from any care setting, and four (6%) did not specify a setting. Definitions of unmet palliative care needs Details of how studies defined, measured, and reported unmet palliative care needs are presented in Table 3 . Only 11 (16%) studies explicitly provided a definition of unmet palliative care needs, whereas 23 (33%) partially defined the concept – often with reference to prior research on care needs. More than half (n=36, 51%) provided no definition. View this table: View inline View popup Table 3. Definitions, measurement and reporting of unmet palliative care needs in the included studies (n=70). Definitions varied but often emphasised a perceived discrepancy between the care required or desired and the care received, such as “the disparity between the supports that an individual perceives as necessary and those that are actually provided” ( 93 ). Other definitions highlighted presence of unfulfilled care needs, e.g., “needs that are either not addressed or receive insufficient attention” ( 97 ). Some studies focused on specific outcomes., e.g., conceptualising unmet needs as lacking “the requirement of some action or resource that is necessary, desirable or useful to attain optimal well-being " ( 33 ) or “when basic requirements to maintain quality of life have not been met” ( 98 ). Partial definitions were usually presented as part of the study rationale, to suggest that care needs in specific patient groups or care settings might not be met. One study stated that “problems in the quality of life are not always correctly identified, and needs for care sometimes remain unmet” ( 88 ). Other studies implied that known issues of under-utilisation of palliative care meant that care needs might not be met, such as arguing that “Deficits in [palliative] care in any domains may result in multidimensional, unmet needs" ( 43 ). Where studies specified care services that can help address unmet needs in their definition, few were explicit about which these services were or made any distinction between specialist and generalist palliative care. Measurement of unmet palliative care needs Approaches to measurement While few studies defined unmet palliative care needs, most described the approach used to measure it (i.e., the operationalisation), whether explicitly or implicitly. We identified three main approaches to measuring unmet palliative care needs: 1) Symptoms and concerns (studies using symptom prevalence to indicate unmet needs, without explicitly determining whether these symptoms were addressed or not); 2) Access to services (studies focusing on measuring service referrals or contacts, with little consideration of care outcomes); and 3) Sufficiency of service provision to resolve symptoms and concerns (studies addressing a perceived gap between the care provided and care deemed necessary to resolve symptoms and concerns). These approaches were not mutually exclusive and occasionally combined to varying degrees. Examples of each approach are presented in Table 4 . View this table: View inline View popup Download powerpoint Table 4. Examples of approaches to measuring unmet palliative care needs in the included studies. 1. Symptoms and concerns The first approach to measurement of unmet needs relates to identifying and reporting the presence of one or more symptoms or concerns. Descriptions of what constituted a symptom or concern varied. Some studies narrowly focused on certain levels of specific symptoms, e.g., prevalence of pain being operationalised as having unmet need for pain relief ( 34 ). Other studies acknowledged accumulation of several symptoms or concerns, or these being present across various domains as indicating unmet need ( 43 , 47 ), while others included anything that the patient deemed a problem or concern ( 76 ). Studies focusing on symptoms and concerns were often based on self or proxy reports of felt needs (in contrast to normative needs). 2. Access to services The second approach to measurement of unmet needs relates to the access to or provision of care. This includes absence of referral to specific services (such as specialist palliative care) for people who might benefit from this care, e.g., due to having specific diagnoses or other clinical characteristics. Access to palliative services (whether generalist or specialist) was generally presumed to meet needs and often described in terms of maintaining or improving quality of life, whereas lack of contact with palliative services was indicative of unmet needs. These studies were often larger-scale studies using medical records ( 73 ) or clinical screening tools, e.g., the Palliative Care and Rapid Emergency Screening (P-CaRES) tool ( 61 ), to make inferences about people missing out on palliative care receipt at cohort or population level. As such these largely represent normative needs, i.e., as determined by professionals ( 9 ). This approach seldom distinguished between types of palliative care services, e.g., studies reporting overall rates of palliative care referrals ( 40 , 42 , 77 ). Availability of palliative care services was generally assumed, with only one study explicitly considering the lack of services across geographical regions ( 75 ). 3. Sufficiency of service provision to resolve symptoms and concerns Most studies’ approaches to measuring unmet palliative care needs related to insufficient care provision. This included the presence of symptoms, concerns or problems that were either not addressed at all, not adequately addressed (according to the patient or their family), or not satisfactorily resolved (for which the patient wanted further professional attention). This approach emphasises a gap or discrepancy between a desired or expected standard of care and what has been provided. Studies often measured insufficient provision of care by asking patients or proxies (usually patients’ families or, less commonly, healthcare professionals) first whether a problem or concern was present and then the extent to which it was adequately provided for and addressed, thus primarily capturing felt need ( 9 ). This approach was primarily used by small-scale survey studies using convenience samples to describe patients’ perspectives on the presence of unresolved issues, although some were larger scale ( 51 , 79 ). Sources of information for measuring unmet palliative care needs in primary evidence studies Among primary evidence studies that measured unmet need, methods for measurement varied in terms of who and what was the source of information for the assessment (see Table 3 ). Most studies used self-reported data (n=39, 68%) collected using research questionnaires or patient reported or patient-centred outcome measures (PROMs or PCOMs). Proxy-reported data by bereaved family members, e.g., using mortality follow-back surveys were also common (n=15, 25%). These methods largely capture felt needs (i.e., an individual’s perceived need for care). Clinical assessments by healthcare professionals (often through use of screening tools) (n=8, 11%) or researchers (n=8, 11%) were less common, representing normative need ( 9 ). Instruments and timing of measurement in primary evidence studies As shown in Table 3 , named instruments or measures were used in 42 (69%) of the primary evidence studies, whereas nine (15%) used unnamed questionnaires, and one (2%) used an unnamed structured interview. The most used named measure was the Supportive Care Needs Survey - Short Form (SCNS-SF34) (n=8, 13%), followed by the Problems and Needs in Palliative Care - short version (PNPC-sv) (n=5, 8%), both of which were initially developed for cancer patients. Unmet needs were estimated using administrative medical records in nine (15%) studies. Almost half did not report the time period during which unmet needs were measured (n=30, 49%). Of those that specified a time interval, self-reported unmet needs commonly related to the past month (n=15, 25%). In studies using samples of decedents, the time interval of interest was usually the last month of life (n=4, 7%) or last week of life (n=3, 5%). Only three studies reported longitudinal measurements of unmet needs over time ( 47 , 83 , 89 ). Reporting of unmet palliative care needs in primary evidence studies Some of the 61 primary evidence studies reported unmet needs at the item-level, usually as the proportion of patients with a specific unresolved symptom ( 34 , 39 , 80 ). Most, however, reported unmet needs at the domain-level by combining responses to several items related to a specific domain of care (e.g., ( 65 , 69 )). Our mapping of the unmet care needs reported in the primary evidence captured eleven distinct domains of needs ( Table 3 ). Ten of these were identified in the framework by Goni-Fuste et al. (2021), with the addition of “Sexuality” which was reported in 14 (23%) studies. Of the 52 primary evidence studies that measured unmet palliative needs using a questionnaire or interview, most used multi-domain measures that allowed a holistic assessment of unmet palliative care needs: 38 (73%) captured three dimensions or more, while only four (8%) focused solely on one domain (spiritual needs ( 48 , 66 , 69 )) and physical function ( 56 )). In total, 26 studies (43%) reported one single metric of unmet palliative care needs, usually as a percentage of participants needing palliative care but not adequately receiving it. These rates ranged from 10% in a 2023 study of hospitalised patients in United States ( 73 ) to 30% among people with non-cancer conditions in a 2008 health omnibus survey in Australia ( 42 ). Other studies calculated unmet needs by aggregating items and/or domains from the measure, which was commonly reported as prevalence of having one or more unmet needs (e.g., “71.8% of patients reported at least one unmet supportive care need” ( 83 )), sometimes with reference to severity (e.g., “48% reported one or more moderate or high unmet needs” ( 86 )). Some studies presented a mean or median number of unmet needs within the group (e.g., “The median number of total unmet needs identified was 3” ( 74 )). Discussion Key findings This scoping review examines how existing evidence has defined, measured and reported unmet palliative care needs across disease groups and care settings. Only 11 out of 70 (16%) defined the theoretical construct of unmet needs. The review also found variability in approaches to measurement and reporting across studies, identifying three main approaches to measuring unmet palliative care needs: 1) the presence or severity of symptoms and concerns; 2) the level of access to palliative care services; and 3) symptoms and concerns that remain unresolved despite service provision. Unmet palliative care needs were commonly identified using self-reported data about the presence of symptoms and concerns and whether these were resolved by the care provided. Similar to previous reviews on unmet palliative care needs in the emergency department ( 100 ) and in nursing homes ( 101 ), we found that the lack of explicit definition hinders consistent measurement and comparisons across studies, making it difficult to determine how best to measure or estimate unmet need at the population-level. This lack of clarity creates ambiguity about what is being assessed and risks conflating unmet needs with related concepts, such as satisfaction with care or quality of life. There is also a conceptual distinction between unmet needs as outcomes (e.g. inadequate pain relief), and reasons for unmet needs (e.g., not accessing to palliative care services), which was rarely noted in the included studies. Expanding on the findings of Franks et al. ( 12 ) on population-level palliative care needs assessments, our review identifies three approaches to measuring unmet needs in the existing literature. The first approach, Symptoms and concerns , involves quantifying prevalence or burden of problems. This approach corresponds to Franks et al. ( 12 ) ‘epidemiological approach’ and is not dependent on whether patients are known to services or not. Patient reported or patient-centred outcome measures (PROMs and PCOMs) can be very helpful for collecting these data and, depending on how many domains a measure captures, this approach enables a holistic assessment of palliative care needs. For example, the Integrated Palliative care Outcome Scale (IPOS) is a valid and reliable measure for multi-domain symptoms and concerns, allowing evaluation of the complexity of needs for care ( 102 ). Wide international use of PROMs and increasing integration with patient record systems further aids access to comparable data for research. Nevertheless, this approach has limitations, as having unmet needs do not necessarily mean professional help is desired, and it may not clarify which professionals or services should meet any needs identified. The second approach, Access to services , infers unmet palliative care needs from access to services, aligning with Franks et al.’s ( 12 ) healthcare utilisation approach. Service use is usually documented in medical records and often readily available in national patient registers, which facilitates their use in research, policymaking, and commissioning. While evaluating access to services, e.g., referrals, can elucidate care gaps or inequities indicative of underserved populations, this approach requires that patients are correctly identified as having palliative care needs in the first place ( 103 ). Moreover, uptake of palliative care services might not reflect actual needs for care ( 42 ), and access to services alone cannot indicate whether needs are met or if the care delivered improves the patient’s situation ( 90 ). The third approach identified in this review, Sufficiency of service provision to resolve symptoms and concerns , is the most comprehensive as it combines aspects of the first two in operationalising unmet needs (presence of symptoms and concerns but also whether services adequately addressed these). Studies using this approach more often distinguished between having an unmet problem and desire for care, showing that patients did not necessarily want professional attention even for serious problems, especially within social, sexual and spiritual domains ( 57 , 69 , 88 ). This approach is helpful for evaluating outcomes of care and person-centredness ( 104 ), i.e., not only determining whether symptoms are present, or care delivered, but whether the care met individual needs. Focusing on the gap between desired and received care can risk overestimating unmet needs if expectations of symptom relief at the end of life are unrealistic. For example, a symptom like fatigue ( 105 ) is known to be common towards the end-of-life but difficult to fully relieve even with optimal currently available treatment. Studies adopting this approach must consider the subjective nature of measurement and how the person making the assessment might influence estimations of unmet need, since reports of symptom relief can vary between family members and healthcare professionals ( 106 ). Each approach has its strengths and limitations, and all can help estimating unmet palliative care needs, depending on context and research question. For example, the Symptoms and concerns approach is well suited for intervention studies to assess changes in needs over time in response to a care intervention. The Access to services approach is helpful for service mapping studies, and the Sufficiency of service provision to resolve symptoms and concerns approach could be used to inform future post-bereavement survey research. Appropriateness of the approaches may also vary according to the healthcare system from which the evidence is derived ( 107 ). As already mentioned, the approaches do not distinguish between which services should meet which level of unmet needs. Future research should examine how variation in service use might be associated with management of needs across the physical, psychological, spiritual and social domains. The high proportions of unmet needs reported in the included studies also raise questions about ‘acceptable’ levels of unmet needs at the population-level. The definitions of unmet needs presented in this review covered a wide span, ranging from care for optimal well-being ( 33 ) to basic requirements for maintaining quality of life ( 98 ), and provide little clarity about what constitutes a feasible standard. What this review adds Resource limitations invariably mean that specialist palliative care access is prioritised for the most urgent and complex cases ( 108 ), and it is not surprising that the existing research has focused on identifying specialist palliative care needs. However, better understanding of whether specialist palliative care services meet patients’ needs is crucial to inform decision-making about funding, planning and delivering high-quality care ( 109 ). Despite 25 years since Franks et al.’s ( 12 ) review highlighted poor-quality and inconsistent population-level estimates of palliative care needs, the literature is largely based on cross-sectional studies using self-reported data from convenience samples, with few studies using population-based or representative samples. To provide a comprehensive understanding of unmet palliative care needs, multi-domain multi-level assessments like those presented in the third approach to measurement are well-suited to capture both felt and normative need, particularly when combining objective data sources, like service provision, and subjective experiences of the care received. In Box 1 we provide further recommendations for advancing research, policy and practice and building a more robust evidence-base for estimating the prevalence of unmet needs in the general population. Additional considerations of data collection methods are provided in Supplement file 3. Box 1. General and audience-specific recommendations based on the review findings. View this table: View inline View popup Download powerpoint Routine data collection from continuous multi-domain needs assessments is crucial to advance the understanding of unmet palliative care needs at the population-level and inform policymakers and commissioners in the planning and delivery of palliative and end-of-life care ( 18 , 111 ). For studies using administrative data from medical records, standardising the use of clinical variables in screening tools in care practice would enhance consistency in identification of unmet palliative care needs. Challenges remain, however, regarding how needs are disclosed, as limited awareness of available services or resources can hinder people from recognising unmet needs ( 112 ), and lack of trust and power imbalances can hinder requests for support, particularly for potentially sensitive topics such as mental health issues, living situations, or family relationships ( 74 ). Strengths and limitations This is the first scoping review to summarise how unmet palliative care needs has been defined, measured and reported in existing literature. While prior reviews have focused on the psychometric properties of measures of unmet palliative care needs ( 13 , 14 , 113 ), this review contributes with new knowledge about overarching theoretical and operational aspects of the existing evidence on unmet palliative care needs. A strength of this review is the inclusion of grey literature as well as use of forward and backward citation searches to mitigate the risk of omitting relevant sources. We also present data at the study-level, thereby avoiding double counting duplicate data sets across sources ( 24 ). Although the methodological variation of included studies hindered conclusions to be drawn regarding reported prevalence of unmet palliative care needs, this is not a limitation for the current study since scoping reviews aim to identify and describe the breadth of existing evidence and not synthesise study findings ( 114 ). By not limiting our inclusion criteria to specific disease groups or care settings, we provide a comprehensive overview of how unmet palliative care needs has been researched in various contexts, with the objective to expand on the work of Franks et al. ( 12 ) and further the understanding of prevalence of unmet palliative needs are measured. However, our review also has limitations. Including only quantitative or mixed-methods studies and reviews reduces the range of evidence sources and may limits the completeness of the findings, as we might have missed important conceptual work from qualitative sources. The lack of quality appraisal and risk of bias assessment is another inherent limitation to scoping reviews ( 115 ) but also allows for a more rapid review process. Conclusion This is the first scoping review to summarise the existing literature on how unmet palliative care needs have been defined, measured and reported across disease groups and care settings. Even though quantifying unmet palliative care needs is crucial for planning and equitable delivery of palliative care services, our review demonstrates that studies rarely explicitly define the construct and there is considerable variation in how unmet needs are measured and reported. Clear reporting of definitions and operationalisations of unmet palliative care needs is required to harmonise the evidence base and subsequently enable estimation of the proportion of people with unmet needs at the population-level. We identify three distinct approaches to measurement of unmet palliative care needs and provide guidance on their use for various end-users. Data Availability This review is registered on the Open Science Framework (https://doi.org/10.17605/OSF.IO/M8DHA). The full search strategy is provided in the Supplementary material. Inclusion/exclusion criteria are presented in the article. Additional data will be made available upon request. Declarations Authorship T.J. and M.D. were responsible for the design of the study, with critical input from all authors. M.D. and T.J. developed the search strategy, M.D. conducted the searches. T.J., M.D., A.F, and L.F. screened articles for inclusion. T.J., A.B., A.F., and M.D extracted data. T.J. charted the data; A.B., T.J and M.D. conducted qualitative synthesis. All authors contributed to analysis and interpretation of data. T.J. drafted and revised the manuscript. All authors critically revised the manuscript for intellectual content, and read and approved the final manuscript. Funding This study was conducted as part of the DUE_Care ( D efining and estimating u nmet palliativ e care needs in the UK) project, which is funded by the end-of-life charity, Marie Curie, and carried out by King’s College London (grant MCCRP-23-02). Marie Curie supports research into palliative and end of life care to improve the care that is provided to people affected by any terminal illness. For more information visit http://www.mariecurie.org.uk/ . I.J.H. is an UK National Institute for Health and Care Research (NIHR) Senior Investigator (Emeritus), F.E.M.M is an NIHR Senior Investigator, and L.K.F is an NIHR Research Professor. The views expressed in this article are those of the authors and not necessarily those of the UK NIHR, or the UK Department of Health and Social Care. AF is funded by a Marie Curie Senior Research Fellowship (MCRFS-20-101). K.E.S. is the Laing Galazka Chair in palliative care at King’s College London, funded through an endowment from Cicely Saunders International and the Kirby Laing Foundation. Conflicts of interest The authors declare that there is no conflict of interest with respect to the research, authorship, or publication of this article. Ethics and consent Ethical approval was not required for this review as there was no direct patient contact or access to individual participant data. Data sharing This review is registered on the Open Science Framework ( https://doi.org/10.17605/OSF.IO/M8DHA ). The full search strategy is provided in the Supplementary material. Inclusion/exclusion criteria are presented in the article. Additional data will be made available upon request. 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Share Defining and measuring unmet palliative care needs among people with life-limiting illness: a scoping review of international evidence Therese Johansson , Melanie Diggle , Anne Finucance , Joanna M Davies , Irene J Higginson , Katherine E Sleeman , Lorna K Fraser , Fliss E M Murtagh , Anna E Bone medRxiv 2025.07.07.25330993; doi: https://doi.org/10.1101/2025.07.07.25330993 Share This Article: Copy Citation Tools Defining and measuring unmet palliative care needs among people with life-limiting illness: a scoping review of international evidence Therese Johansson , Melanie Diggle , Anne Finucance , Joanna M Davies , Irene J Higginson , Katherine E Sleeman , Lorna K Fraser , Fliss E M Murtagh , Anna E Bone medRxiv 2025.07.07.25330993; doi: https://doi.org/10.1101/2025.07.07.25330993 Citation Manager Formats BibTeX Bookends EasyBib EndNote (tagged) EndNote 8 (xml) Medlars Mendeley Papers RefWorks Tagged Ref Manager RIS Zotero Tweet Widget Facebook Like Google Plus One Subject Area Palliative Medicine Subject Areas All Articles Addiction Medicine (566) Allergy and Immunology (863) Anesthesia (295) Cardiovascular Medicine (4408) Dentistry and Oral Medicine (443) Dermatology (379) Emergency Medicine (606) Endocrinology (including Diabetes Mellitus and Metabolic Disease) (1505) Epidemiology (15201) Forensic Medicine (30) Gastroenterology (1119) Genetic and Genomic Medicine (6568) Geriatric Medicine (666) Health Economics (994) Health Informatics (4508) Health Policy (1365) Health Systems and Quality Improvement (1606) Hematology (537) HIV/AIDS (1262) Infectious Diseases (except HIV/AIDS) (15901) Intensive Care and Critical Care Medicine (1103) Medical Education (619) Medical Ethics (144) Nephrology (665) Neurology (6571) Nursing (345) Nutrition (998) Obstetrics and Gynecology (1139) Occupational and Environmental Health (954) Oncology (3319) Ophthalmology (967) Orthopedics (369) Otolaryngology (420) Pain Medicine (435) Palliative Medicine (129) Pathology (662) Pediatrics (1686) Pharmacology and Therapeutics (691) Primary Care Research (710) Psychiatry and Clinical Psychology (5419) Public and Global Health (9200) Radiology and Imaging (2190) Rehabilitation Medicine and Physical Therapy (1367) Respiratory Medicine (1191) Rheumatology (593) Sexual and Reproductive Health (709) Sports Medicine (529) Surgery (709) Toxicology (99) Transplantation (288) Urology (265) (function(){function c(){var b=a.contentDocument||a.contentWindow.document;if(b){var d=b.createElement('script');d.innerHTML="window.__CF$cv$params={r:'9fe668fcddb6e2c5',t:'MTc3OTIyODQwMA=='};var a=document.createElement('script');a.src='/cdn-cgi/challenge-platform/scripts/jsd/main.js';document.getElementsByTagName('head')[0].appendChild(a);";b.getElementsByTagName('head')[0].appendChild(d)}}if(document.body){var a=document.createElement('iframe');a.height=1;a.width=1;a.style.position='absolute';a.style.top=0;a.style.left=0;a.style.border='none';a.style.visibility='hidden';document.body.appendChild(a);if('loading'!==document.readyState)c();else if(window.addEventListener)document.addEventListener('DOMContentLoaded',c);else{var e=document.onreadystatechange||function(){};document.onreadystatechange=function(b){e(b);'loading'!==document.readyState&&(document.onreadystatechange=e,c())}}}})();