Quality indicators and patient outcome measures for palliative care in cancer patients: a systematic review
Chase Peng Yun Ng1, Moira Hegyi1, Grant Lewison1, Tania Pastrana2, Eve Namisango3, James Cleary4, Barbara Hasties5, Eric Kabisa6, Helena Musau7, Kathryn Spangenberg8, Paola Ruiz9, Zipporah Ali10, Mertixell Mallafre-Larrosa11, Alfredo Polo11, Julie Torode12, Ajay Aggarwal13, Richard Sullivan1 and Mevhibe Hocaoglu12
1King’s College London, Institute of Cancer Policy, London WC2R 2LS, UK
2Department of Palliative Medicine, Medical Faculty RWTH Aachen University, Aachen 52062, Germany
3African Palliative Care Association, Makindye, Kampala, Uganda
4Supportive Oncology, Department of Medicine, Division of Hematology/Oncology, Indiana University School of Medicine, Indianapolis, IN 46202, USA
5Team Humanity International, Amsterdam 1082MT, The Netherlands
6Rwanda Palliative Care and Hospice Organization (RPCHO), Kigali, Rwanda
7Kenyatta University Teaching Research and Referral Hospital, Box 7674 - 00100, GPO, Nairobi, Kenya
8Komfo Anokye Teaching Hospital, Box 1934, Adum-Kumasi, Ghana
9La Asociación Cuidados Paliativos de Colombia ASOCUPAC, Cali, Colombia
10Kenya Hospices and Palliative Care association (KEHPCA), Nairobi, 20854-00202 Kenya
11City Cancer Challenge, Geneva, 1204 Switzerland
12Cicely Saunders Institute King’s College London, London SE5 9RS, UK
13Health Services Research & Policy, London School of Hygiene & Tropical Medicine, London WC1E 7HT, UK
Abstract
Introduction: With the exponential rise in global cancer incidence, the surge in demand for palliative care has outstripped capacity, limiting patients’ access to quality and holistic palliative care, especially in low- and middle-income countries. Despite an upturn in research activity, evidence in palliative care remains limited, given its complexity as well as the shortage of standardised quality indicators (QIs) and patient outcome measures (POMs). The objective of this systematic review is to assess the QIs and POMs used to evaluate palliative care service on aggregated and individual levels.
Methods: We undertook a systematic review following the Preferred Reporting Items for Systematic Reviews and Meta-analysis guidelines to determine the QIs and/or POMs of palliative care in patients with non-communicable diseases. A Web of Science, EMBASE, PubMed and SOCSCI search between 1 January 2013 and 31 Dec 2022 identified 41 articles. We appraised the quality of all studies using the mixed methods appraisal tool.
Results: 26.8% of studies focus on QIs, while 73.2% used POMs. >90% of palliative care research took place in high-income settings. Across domains of palliative care, the outcome of care is most studied, while the structure and process of palliative care are understudied. QIs and POMs identified often had overlapping themes. Due to the multidimensionality and intricacy of palliative care, evidence is limited, patchy and heterogenous in quality.
Discussion: There is an overall lack of standardisation of QIs and POMs, as well as variability in evidence of palliative care research. We recommend that stakeholders collaborate to develop a standardised repository of metrics for monitoring and evaluating palliative care services at both individual and system levels, with a particular focus on structural and process indicators. Incorporating validated, patient-centred measures and selecting key items as quality indicators will enable meaningful tracking of changes, guiding resource allocation and driving improvements in patient-centred care. Furthermore, exploring alternative research designs is essential to enhance feasibility, uphold ethical integrity and strengthen the robustness of future studies.
Keywords: palliative care, quality indicator, outcome measure, cancer, global oncology, structure of care, process of care
Correspondence to: Richard Sullivan and Mevhibe Hocaoglu
Email: Richard sullivan@kcl.ac.uk and hocaoglu@kcl.ac.uk
Published: 20/06/2025
Received: 27/02/2025
Publication costs for this article were supported by ecancer (UK Charity number 1176307).
Copyright: © the authors; licensee ecancermedicalscience. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Introduction
Cancer remains a worldwide public health challenge, despite the growing investments in research and development towards preventative and treatment interventions [1]. The global cancer incidence is projected to reach 30.2 million new cases and 16.3 million cancer-related deaths by the year 2040 [2, 3] Concurrently, the need for palliative care over the years has increased and it has been estimated that globally 40 million people currently require palliative care [4]. However, only about 14% of this number receive palliative care services [5].
Palliative care is defined as care that improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual [5] Over the years, international health groups, such as the World Health Organisation (WHO), non-governmental organisations and governments have increasingly prioritised access to palliative care for cancer patients, especially in low- and middle-income countries (LMICs) [6, 7]. This attention has stimulated research activities in palliative medicine. According to a systematic review conducted in 2008, the proportion of palliative care and hospice research publications from all Ovid Medline publications rose from 0.08% in 1970 to 0.38% in 2005 [8] A recent publication looking at global palliative care research using a bibliometric review and mapping analysis quantified that palliative care publications increased by around fourfold from 2002 to 2020, with a 19% 5-year increase projected in 2025 [9].
Despite the rise in research output, evidence on measuring the scope of need and effectiveness of palliative care remains limited and of low quality [8, 10]. The paucity of evidence could be attributed to the lack of standardised quality indicators (QIs) and patient outcome measure (POM) in palliative care. QIs are defined, measurable items referring to the outcome, process or structure of care for a particular type of patient or clinical circumstance on an aggregated level [11]. They are often described with a numerator, a denominator and a performance standard, which form the benchmark for healthcare systems to evaluate and monitor their palliative care service holistically. On the other hand, POMs are focused on patient- or family-level status and response to symptoms and conditions in all domains on an individual level [12].
To address this problem, the National Coalition for Hospice and Palliative Care published the fourth edition of the National Consensus Project Clinical Practice (NCP) Guidelines for Quality Palliative Care in 2018 with the aim to standardise and outline evidence-based processes and practices of safe and reliable high-quality palliative care in all settings [13]. To ensure that palliative care is inclusive, the guideline divides palliative care into eight domains: 1. structure and process of care; 2. physical aspects of care; 3. psychological and psychiatric aspects of care; 4. social aspects of care; 5. spiritual, religious and existential aspects of care; 6. cultural aspects of care; 7. care of the patient nearing the end of life and 8. ethical and legal aspects of care [14]. While the effort is commendable and progressive, a systematic review led by Ahluwalia et al [15] revealed that the quality of evidence supporting the guideline remains low despite substantial support in clinical practice [15]. Another systematic review of palliative care assessment tools using the eight domains identified, led by Aslakson et al [16], further highlighted the nonuniform application and the shortage of QIs in evaluating the structure and process of palliative care.
In the field of oncology, the European Society of Medical Oncology (ESMO) had recognised this problem since 2003 and promoted formal integration of oncology and palliative care services based on WHO recommendations through an accreditation programme, focusing on credentialling, education, training and research of palliative care in addition to service provision[17]. It created QIs for hospitals to compare the structure and process of their palliative care service on a systemic level, thus complementing the NCP guidelines which focus on the different aspects of patient outcome. In this review, we adapted the domains from both institutions to ensure that all structure, process and outcome of care are adequately represented and evaluated to inform future palliative care practice holistically.
As palliative care is often translatable in practice across cancer patients and patients with other non-communicable diseases, the objectives of our systematic review were to evaluate the palliative care QIs and POMs for patients living with all non-communicable diseases. We aimed to identify gaps in quality assessment of the palliative care service, especially in cancer care delivery across healthcare systems in different income settings, and to highlight validated QIs and POMs that have the potential to be used as standards in wider settings, especially for cancer patients in the LMICs.
Methods
Our approach was guided by the Arksey and O’Malley [18] framework and supported by the Levac et al. [19] recommendation. The Arksey and O’Malley [18] framework comprised the following: (i) identifying the research question, (ii) identifying relevant studies, (iii) study selection, (iv) charting the data and (v) collating, summarising and reporting the results and (vi) consultation. An optional sixth stage of consultation was proposed by Arksey and O’Malley [18] as a measure to seek insight from stakeholders beyond what was found in the literature [17]. This scoping review included consultation with an expert reference group of stakeholders as we were interested in both the palliative care QIs and results/functionality of POMs [19].
Identification of relevant studies
The systematic review was designed using the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA). Studies published between 1st January 2013 and 31st December 2022 were searched on 4 online databases using Web of Science, EMBASE, PUBMED and SOCSCI using a complex bibliometric filter (Appendix A). The search terms were agreed upon following two consensus meetings of the expert reference group to identify relevant publications reflecting palliative care and quality indicators/ measures for both cancer and non-cancer patients globally.
Inclusion criteria
The inclusion criteria were as follows: any qualitative, quantitative and mixed-method studies on QIs and POMs of palliative care relevant to all types of chronic non-communicable diseases in English language.
Exclusion criteria
Studies with the sole therapeutic intent of prolonging life expectancy and not the quality of life of patients were excluded. Studies that did not use any qualitative or quantitative quality or patient-level outcome measures of palliative care were also excluded. Review articles, case reports, letters, abstracts, conference proceedings, editorials, expert opinions, preclinical studies, protocols and laboratories studies were excluded.
Data selection
The titles and abstracts were assessed by two independent reviewers, Peng Yun Ng (PN) and Moira Hegyi (MH), to minimise reviewer errors and bias. All identified abstracts underwent full-text review by PN and MH. PN and MH extracted data from each included study, assessing its quality and any uncertainties or discrepancies were resolved through discussion with RS and AA.
Data extraction
The data included in the extraction are as follows:
- Location of study
- Characteristics of study (funding, research design, sample size, aim and outcome of study)
- Disease (cancer or non-cancer chronic non-communicable disease)
- Type of palliative care service (home care, inpatient care, outpatient care, hospice, bereavement support and caregiver support)
- Purpose of palliative care intervention (education, research and service provision)
- Domain of palliative care service
- Structure of care: human resource, facilities and equipment organisational
- Outcome of care: physical, psychological, social, spiritual, ethics and legal
- Process of care
- Type of quality indicators/patient outcome measures
Quality appraisal of included studies
To assess the quality of the included studies, we used the mixed methods appraisal tool (MMAT), version 2018 [20]. The quality appraisal procedure was carried out by two independent reviewers, PN and MH. The quality of the evidence will be graded using the following percentage scores: (1) 0%–50% will represent low-quality evidence, (2) 51%–75% will represent average quality evidence and (3) 76%–100% will represent good quality evidence. We evaluated various study methodologies including qualitative, quantitative and mixed-methods studies, using this quality appraisal method. We summarised the detailed breakdown of the quality appraisal of each study in a table.
Results
Search strategy
569 publications potentially relevant to QIs and POMs for palliative care were initially identified by the complex bibliometric filter. After the abstracts and titles were screened, 420 studies were not included due to them being (1) review articles, case reports, letters, abstract, conference proceeding, editorials, expert opinions, preclinical studies, protocols and laboratories studies, (2) not relevant to palliative care and chronic non-communicable disease and (3) non-English. Of the remaining 149 studies, a further 107 studies were excluded as 24 studies focused solely on improving the survival of the patients instead of their quality of life; and 84 studies did not utilise any measurable palliative care QIs or POMs. 41 publications fulfilled the search criteria and are summarised in Tables S1 and S2 (Appendix A and B). The search strategy is illustrated in Figure 1.
Palliative care research activity
Disease
58.5% (n = 24) of studies focused on cancer patient [21, 22, 24, 25, 27–29, 31, 32, 34, 35, 37, 38, 40–45, 49, 54, 56, 57, 59], while 41.5% (n = 17) focused on non-cancer NCD such as dementia, chronic kidney disease and Parkinson’s [26, 30, 33, 36, 39, 46–48, 50–53, 55, 58, 60, 61]. There were 26.8% (n = 11) true quality indicator studies [21–31] and 73.2% (n = 30) patient outcome measures [32–61].
Methodology
85.4% of the studies (n = 35) were quantitative [21–24, 26–34, 36, 38–40, 42–46, 48–51, 53–61]; 11.9% (n = 5), qualitative [25, 35, 37, 41, 47] and 2.4% (n = 1), mixed methods [52]. The majority of the quantitative studies were non-randomised (71.4%, n = 25) [21–24, 27, 28, 30, 32, 33, 36, 38–40, 42, 44–46, 49–51, 53, 56–58, 61] and descriptive (22.2%, n = 8), [26, 29, 31, 34, 43, 48, 55, 59] while only two of them were randomised (5.6%, n = 2) [54, 60].
Figure 1. PRISMA flow chart of identification for articles for inclusion.
Location
As illustrated in Figure 2, Palliative care research in quality indicators and patient outcome measures was highly concentrated in Europe, 36.6% (n = 15), [29, 34, 37, 38, 40–42, 47, 49, 51, 52, 54, 56, 57, 60] and North America, 31.7% (n = 13) [21, 23–28, 31, 32, 50, 58, 59, 61] especially the United States. Asia was the origin of 22.0% (n = 9) of the literature, [22, 30, 33, 36, 43–46, 55] whereas the Middle East, South America, Africa and Australia only contributed 2.4% each [35, 39, 48, 53]. Only 7.3% (n = 3) of literature was published from LMICs [35, 39, 44].
Figure 2. Hotspots of palliative care studies related to quality indicators and patient outcome measures by Continent and Country.
Quality assessment
All included studies of various methodologies were evaluated and graded using the MMAT (ver 2018). The outcomes of the quality assessment are summarised in Table 1.
29 out of 41 studies (70.7%) were graded as having high-quality evidence (75%–100% score), [23, 25–27, 29–31, 33–39, 41–43, 45–52, 56, 58, 60, 61] while 12 (29.3%) studies were graded as medium quality evidence (50%–75% score) [22, 24, 25, 28, 32, 44, 49, 53–55, 57, 59]. For the 11 QI studies, the grade assessment was high for 72.7% (n = 8) and medium for 27.3% (n = 3). As none of the studies were scored as having low-quality evidence (0%–50% score), the results of the review remain unchanged with sensitivity analysis.
Type of palliative care services
Palliative care QI and POM studies were identified across various palliative care settings, predominantly in inpatient/acute (26.8%, n = 11) [21, 22, 27, 29, 31, 48–50, 53, 60, 61] and outpatient care (14.6%, n = 6), as depicted in Figure 3 [24, 25, 32, 34, 56, 58]. They are also commonly used to evaluate the quality of palliative care in the context of home care (9.8%, n = 4) [26, 30, 36, 42] and caregiver support (7.3%, n = 3), [45, 51, 52] as well as hospice (4.9%, n = 2) [23, 35] and bereavement support (2.4%, n = 1) [47].
Domain
The palliative care QIs and POMs can be categorised into three domains: structure of care, process of care and outcome of care as shown in Figure 4.
Table 1. Quality appraisal of all included studies using the 2018 mixed method appraisal tools.
Figure 3. Types of palliative care services with quality indicators.
Figure 4. Quality indicators across domains of palliative care.
FATCODS = Frommelt Attitudes Toward Care of the Dying; NipCAS = Neonatal Palliative Care Attitude Scale; OPTION-12 = Observing Patient Involvement Scale; AGCCS = Anticipatory Grief Counseling Competency Scale; PC = palliative care; MDT= Multidisciplinary Team; EoL = End of Life; APCU = Acute Palliative Care Unit; LoS = Length of Stay; MMCG = Marwit-Meuser Caregiver Grief; FPCS = Family Perceptions of Care Scale; CriSTAL = Criteria for Screening and Triaging to Appropriate aLternative care; NEST = Needs at the End-of-Life Screening Tool; ED =; FACIT = Change in Functional Assessment of Cancer Illness Therapy; FACT-G = The Functional Assessment of Cancer Therapy - General; PSQI = Pittsburg Sleep Quality Index; MDASI = M.D. Anderson Symptom Inventory; EORTC QLQ-C30 = European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire core; MFI = Multidimensional Fatigue Inventory; SF = Short Form; PROMIS = patient-reported outcomes measurement information system; ESAS = Edmonton Symptom Assessment System; FAACT ACS = Functional Assessment of Anorexia/Cachexia Therapy Anorexia Cachexia Subscale; NLS = Nutrition Literacy Scale; IPOS = Integrated Palliative Outcome Set; BTcP = Breakthrough cancer Pain; HADS = Hospital Anxiety and Depression Scale; MDI = Major Depression Inventory; NIH-HEALS = National Institute Health Healing Experience of All Life Stressors; PANAS = Positive and Negative Affect Schedule; NCCN = National Comprehensive Cancer Network; BSI= Brief Symptom Inventory; COPE = Coping Orientation to Problems Experienced; SCNS = Supportive Care Needs Survey; HHI = Herth Hope Index; CARQ = Concerns about Cancer Recurrence Questionnaire; DRS = Decision Regret Scale; DCS = Decisional Conflict Scale; ACP = Advanced Care Planning
Structure of care
Based on the WHO report on palliative care, structure of care could be divided into three subdomains: human resource, facilities and equipment as well as organisation. Six of the POM studies focused on human resource ranging from clinicians’ attitude to palliative care, such as from melt attitudes toward care of the dying (FATCODS) and neonatal palliative care attitude scale (NipCAS), to their competency in grief counselling and shared decision-making skills using anticipatory grief counselling competency scale (AGCCS) an observing patient involvement scale respectively [33, 39, 45, 55, 57, 58]. The remaining two papers focussed on QIs, quantifying the palliative care workforce across different services i.e. number of palliative care nurse practitioner and caregiver retention rate [25, 50]. In terms of facilities and equipment, the QIs identified were cost related to unscheduled emergency end-of-life (EoL) care, cost of home-care palliative service and number of acute hospital bed days [25, 29, 30]. It is worth noting that there were no QIs assessing the availability of palliative care medication, equipment and various services across primary, secondary and tertiary care. The only QI for organisational structure of palliative care was for the availability of a multidisciplinary communication system [25].
Process of care
16 out of 41 studies (39.0%) used QIs and POMs to evaluate the process of PC provision [21–23, 25–28, 31, 36, 50–54, 59, 61]. The 17 QIs and POMs identified broadly fell into three categories – the rate of utilisation of PC services, caregiver burden and EoL care screening. The rate of patients approaching their end-of-life attending the emergency department or requiring emergency home visits, rate of hospitalisation, rate of admission to intensive care unit before death, rate of admission to hospice, frequency and timing of PC consult from diagnosis and rate of systemic therapy were QIs used to measure the utilisation of various types of palliative care provided. On the other hand, caregiver burden were assessed using modified caregiver strain index, Zarit Scale, Marwit-Meuser Caregiver Grief (MMCG) and family perceptions of care scale [26, 51, 52]. Except for MMCG, these POMs assessed caregivers in the form of self-administered instruments, across their financial, physical, psychological, social and personal domain. MMCG focused purely on grief and has been validated in patients with brain injury, Alzheimer’s dementia and cancer [52]. To facilitate identification of patients who might benefit from PC, Criteria for Screening and Triaging to Appropriate aLternative care (CriSTAL) and needs at the end-of-life screening tool (NEST) were utilised [53, 61]. CRiSTAL relied on patient demographics (age, comorbidities), previous admissions as well as investigations including ECG and urinalysis [53]. On the other hand, NEST was a 13-question comprehensive screening tool co-developed with patients to evaluate their needs holistically across four core themes – for Needs (social), for Existential matters, for Symptoms and for Therapeutic matters [61].
Outcome of care
22 out of 41 studies (53.7%) assessed outcomes of palliative care [24, 26, 32, 34, 35, 37, 38, 40–44, 46–49, 51, 52, 54, 56, 59, 60]. 14 of those studies evaluated the physical symptoms and needs of the patients. The most popular POM (n = 6) identified was the 30-question EORTC-QLQ-C30, which focused on daily function of cancer patients and their perception of health and quality of life [34, 37, 38, 41, 42, 56]. It broadly screened patients of various physical, psychological and social care needs, but did not include spiritual and ethics-related subdomains of care. Similarly, the Functional assessment of cancer therapy (FACT-G), Edmonton Symptom Assessment System (ESAS), Change in Functional Assessment of Cancer Illness Therapy (FACIT) and M.D. Anderson Symptom Inventory (MDASI) assessed cancer patients on their physical and psychological symptoms as well as functional needs [32, 40, 59]. MDASI also contained assessments specific to different types of cancer such as Acute Myeloid Leukaemia (AML) [32]. Patient-reported Outcomes Measurement Information System (PROMIS) is a POM newly developed to standardise ways to quantify patient-reported outcomes, such as pain, fatigue, physical functioning, emotional distress and social role participation and track changes in research settings [37]. The Integrated Palliative Care Outcome Set (IPOS) covered all the same domains but further included spiritual care within its assessment [54]. On the other hand, Pittsburgh Sleep Quality Index, Multidimensional Fatigue Inventory and Functional Assessment of Anorexia/Cachexia Therapy Anorexia Cachexia Subscale focused on the specific physical symptoms of sleep, fatigue and anorexia, respectively [32, 34, 43]. Nutrition literacy scale was developed to assess patients’ knowledge of their nutrition status and requirement to optimise dietary plans [46].
The psychological subdomain was the second most commonly assessed (n = 12, 29.3%) with widely used and validated POMs adopted from the psychiatric field, such as Hospital Anxiety and Depression Scale and major depression inventory [32, 34, 35, 40, 41, 47, 52, 54, 56, 59, 60]. Other POMs used include the healing experience of all life stressors tool, a 35-item questionnaire developed by the NIH Clinical Centre Pain and Palliative Care Service as a psycho-social-spiritual measure of healing that quantified and tracked positive change in response to significant life events and positive and negative affect schedule, which was a psychometric scale to gauge the patients’ positive and negative affect [35, 47]. In addition, the National Comprehensive Cancer Network Distress Thermometer was developed and used for cancer patients to rate their level of distress subjectively on a weekly basis in clinical and research settings [54]. Similarly, the brief symptom inventory assessed the psychological distress of patients but it lacked validity among cancer patients, especially adolescents and young adults [56]. Coping orientation to problems experienced inventory, on the contrary, focused on the ability of patients coping emotionally and physically with the distress from the significant life events [44, 52]. Concerns about Cancer Recurrence Questionnaire-4 was used to evaluate the level of fear using the frequency, intrusiveness and degrees of distress the patients reported [34].
Social and spiritual care were the joint third most common (n = 6, 14.6%) subdomains [26, 32, 34, 35, 41, 42, 51, 54, 59]. For the social aspect of care, besides the aforementioned EORTC-QLQ-C30, FACT-G and IPOS, Supportive Care Needs Survey-Sort Form was used to evaluate the social care needs of cancer patients [54]. It has been validated in multiple countries and found to be culturally appropriate to inform supportive care requirements. Finally, the percentage of patients dying in their place of preference was also used as a QI to support PC [26].
Spiritually, the herth hope index was a 12-question POM tool used to quantify different unique dimensions of hope in clinical settings taking into consideration the philosophical, religious, sociological and psychological factors [32]. However, a recent systematic review revealed wide variability in its applicability and validity across cultures [62]. Decision regret scale and decisional conflict scale were designed and developed to measure the uncertainties and regret patients faced with decisions made and evaluate the quality of shared decision making [34, 51].
Ethics and legal aspects of care were the least studied (n = 2, 4.8%) subdomain within the outcome of care domain [24, 51]. The QIs identified in our review were the documentation rates of advanced care planning and prognosis in hospital and nursing care home settings.
Discussion
Lack of standardisation of quality indicators and patient outcome measures
The results of this review principally highlight the overall lack of standardisation of QIs and POMs related to palliative care. Within each of the three domains of structure, process and outcome of care, multiple QIs and POMs were used to assess the same subdomains and nearly half of the studies used multiple metrics. This can be attributed to a lack of guidance and methods to search, compare and appraise the validity and reliability of QIs and POMs designed for the same domain. POMs assessing the physical and psychological aspects of care, were by far the most prominent in the 41 studies screened. However, 15 and 11 different POMs were used within these two subdomains respectively. For example, FACT-G, ESAS and FACIT assess identical physical symptoms of patients on different subscales, deriving different outcomes from different interpretations [37, 40, 59, 60]. The lack of standardised POMs makes direct comparisons and meta-analyses difficult and hinders the possibility of using longitudinal data for intervention comparison. Furthermore, there is a trend of disease-specific POMs to assess the various morbidities associated with individual conditions. To illustrate, MDASI is a POM tailored to AML/ MDS, specifically evaluating malaise, diarrhoea, muscle weakness and skin symptoms associated to the condition [32]. While it is beneficial to evaluate symptoms unique to the patient cohort, these trends have inevitably reduced the adaptability of the POMs.
Lack of quality indicators in structure and process of care
There are generally fewer QIs evaluating the quality of structure and process of care. This trend was observed in the review conducted by Aslakson et al [16], yet the disparity persists to date. Despite being the second most commonly assessed domain, the process of care was evaluated mostly by QIs within the category of rate of utilisation of PC services, instead of caregiver burden and EoL care screening. Of the 10 studies focusing on the structure of care, eight zeroed in on human resources, while only two assessed the organisational structure and facilities and equipment. It is paramount to address the research underactivity in these domains as their QIs are fundamental for stakeholders in the set-up and provision of palliative care services, especially in resource-limited LMICs. QIs focussing on the structure of care should quantify human resource, infrastructure and equipment available currently and in preparation of the future in order to plan workforce, allocate budget and organise the service in an optimal way. To complement it, QIs targeting at process of care should evaluate the utilisation of palliative care services across acute and community settings in the real world. Future work on health economics and implementation science using QIs in palliative care will be crucial in bridging the gap in the structure and process of care domains.
Variability of evidence
Despite 70% of included studies having high-quality evidence according to the MMAT, certain research methodologies are underutilised in palliative care research. The criticisms of PC studies include the fact that they were predominantly descriptive with a wide variation in sample size and in outcome measures [63]. The various complex physical, psychological, social and spiritual problems faced by patients, families and service providers often made the design and conduct of palliative care research challenging. Issues of participant burden, sample heterogeneity, data attrition and ethics were well described [64].
In our review, only two RCTs were included and only one of which was graded as high quality and neither of which used a blinded outcome assessment [54, 60]. Of the non-randomised studies, most did not account for confounders and several had incomplete outcome data. On a side note, only five of the included studies were qualitative in nature. As the complexity of patients and caregivers’ experiences are often not accurately reflected in quantitative assessments and measures, qualitative studies are vital in providing insights into the subsequent development and validation of quantitative surveys.
Recommendations
Given the lack of standardisation of QIs and POMs, the shortage of QIs in structure and process of care, as well as the variability of evidence, we recommend the development of a palliative care QI and POM repository, ideally set up by an accredited institution, such as the WHO, ESMO or NCP, to guide and frame research in palliative care. The existence of validated metrics will help align clinical practice, facilitate audit and accelerate research for clinicians, service provider and academics. Previous successful initiatives in Flanders and the Netherlands have focused on creating standardised POM sets, which apply to all palliative care settings and patient groups to allow for ease of comparison [12] While this is one approach, another could be to focus on specific disease populations, separating cancer from non-cancer NCDs to allow for easier modifications of standardised tools to assess disease-specific morbidities. MDASI which contains both a general instrument to assess quality of life in cancer patients and a dedicated section for AML cancer patients, is a good example [32]. In addition, a QI and POM repository would also facilitate the expansion of research into LMICs. Less than 10% of the studies (n = 3) in our review were from LMICs, highlighting a yawning geographical gap in palliative care research activity. This may be because most published QIs and POMs were developed in high-income settings and therefore did not accurately reflect the resources and treatment options available in many health systems in LMIC. Finally, as treatment capacity expands, the assessment tools used in LMICs will need to be equally dynamic [6]. A repository would be particularly useful in developing and disseminating tools for these settings.
In addition, we encourage researchers to explore alternative research designs that can be more feasible in real-world palliative care without compromising on its integrity and robustness. One example is the use of desirable alternative or delayed interventions for control groups, such as randomised fast-track or wait-list designs paired with intention-to-treat analysis. This design helps maintain group equivalency over time without compromising on ethics, as either the fast-track or wait-list arm ensures that all participants receive the treatment [64]. Other strategies include cluster sampling, narrative research and action research.
Conclusion
The rise in global cancer incidence has led to a concomitant increase in demand for palliative care. However, despite an upturn in research, there is a lack of standardisation of quality indicators and patient outcome measures overall with limited evidence in various domains of palliative care. Henceforth, we recommend stakeholders co-develop a quality indicator and outcome measure repository to promote uniformity and equal representation of all aspects of palliative care. Emphasis should be on developing and validating QIs for the structure and process of palliative care which are currently understudied. We believe standardised and validated QIs and POMs will provide the foundation to build, monitor and evaluate palliative care services that are holistic for cancer patients and feasible for integration into health systems across all income settings.
Conflicts of interest
The authors have no conflicts of interest to declare.
Funding
RS and PN are funded by Medical Research Council Global Alliance of Chronic Disease Grant ACCI No GACD-025. RS and PN are also funded by BASO/ Rosetrees Research Grant in Cancer Surgery. The funders have no role in study design; in the collection, analysis, and interpretation of data; in the writing of the manuscript; and in the decision to submit the manuscript for publication.
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Appendix A
Palliative care quality indicators search terms
Palliative care: ‘palliative care’ [MeSH Terms] OR (‘palliative’[All Fields] AND ‘care’[All Fields]) OR ‘palliative care’[All Fields] hospice care: ‘hospice care’[MeSH Terms] OR (‘hospice’[All Fields] AND ‘care’[All Fields]) OR ‘hospice care’[All Fields] end of life care: ‘terminal care’[MeSH Terms] OR (‘terminal’[All Fields] AND ‘care’[All Fields]) OR ‘terminal care’[All Fields] OR (‘end’[All Fields] AND ‘life’[All Fields] AND ‘care’[All Fields]) OR ‘end of life care’[All Fields] OR ‘hospice care’[MeSH Terms] OR (‘hospice’[All Fields] AND ‘care’[All Fields]) OR ‘hospice care’[All Fields] OR (‘end’[All Fields] AND ‘life’[All Fields] AND ‘care’[All Fields])
Cancer: ‘cancer’s’[All Fields] OR ‘cancerated’[All Fields] OR ‘canceration’[All Fields] OR ‘cancerization’[All Fields] OR ‘cancerized’[All Fields] OR ‘cancerous’[All Fields] OR ‘neoplasms’[MeSH Terms] OR ‘neoplasms’[All Fields] OR ‘cancer’[All Fields] OR ‘cancers’[All Fields] patients: ‘patient’s’[All Fields] OR ‘patients’[MeSH Terms] OR ‘patients’[All Fields] OR ‘patient’[All Fields] OR ‘patients’s’[All Fields]
Quality: ‘qualities’[All Fields] OR ‘quality’[All Fields] OR ‘quality’s’[All Fields] measures: ‘measurability’[All Fields] OR ‘measurable’[All Fields] OR ‘measurably’[All Fields] OR ‘measure’s’[All Fields] OR ‘measureable’[All Fields] OR ‘measured’[All Fields] OR ‘measurement’[All Fields] OR ‘measurement’s’[All Fields] OR ‘measurements’[All Fields] OR ‘measurer’[All Fields] OR ‘measurers’[All Fields] OR ‘measuring’[All Fields] OR ‘measurings’[All Fields] OR ‘measurment’[All Fields] OR ‘measurments’[All Fields] OR ‘weights and measures’[MeSH Terms] OR (‘weights’[All Fields] AND ‘measures’[All Fields]) OR ‘weights and measures’[All Fields] OR ‘measure’[All Fields] OR ‘measures’[All Fields] metrics: ‘benchmarking’[MeSH Terms] OR ‘benchmarking’[All Fields] OR ‘metrics’[All Fields] OR ‘metric’s’[All Fields] OR ‘metronidazole’[MeSH Terms] OR ‘metronidazole’[All Fields] OR ‘metric’[All Fields] patient satisfaction: ‘patient satisfaction’[MeSH Terms] OR (‘patient’[All Fields] AND ‘satisfaction’[All Fields]) OR ‘patient satisfaction’[All Fields] indicators: ‘indicate’[All Fields] OR ‘indicated’[All Fields] OR ‘indicates’[All Fields] OR ‘indicating’[All Fields] OR ‘indicative’[All Fields] OR ‘indicatives’[All Fields] OR ‘indicators and reagents’[Pharmacological Action] OR ‘indicators and reagents’[MeSH Terms] OR (‘indicators’[All Fields] AND ‘reagents’[All Fields]) OR ‘indicators and reagents’[All Fields] OR ‘indicator’[All Fields] OR ‘indicators’[All Fields] OR ‘indice’[All Fields] OR ‘indices’[All Fields]
28 Oct 2023
Appendix B
Table S1. Summary table of all included palliative care quality indicator studies.
Table S2. Summary table of all included palliative care patient outcome measure studies.
