Globally, the prevalence of life-limiting chronic illnesses, such as cardiovascular diseases, cancer, respiratory diseases, and diabetes, have surpassed infectious diseases as the leading cause of death in adults.1 In 2011, it was estimated that over 29 million individuals died from chronic, life-limiting conditions that would be appropriate for palliative care, such as dementia, cancer, cardiovascular diseases, liver cirrhosis, chronic obstructive lung disease, diabetes, HIV/AIDS, kidney failure, multiple sclerosis, and Parkinson disease.2
Palliative care is a term that has been refined in recent years in response to changing societal views of end-of-life care. The term “palliative care” originated within hospice settings, which focus on patients who are terminally ill (i.e. prognosis of living less than six months) and are no longer seeking disease-altering treatments. Palliative care and end-of-life care continue to be conflated.3 This is problematic as modern palliative care has evolved into a broader concept that extends beyond hospice care offered near death. This misunderstanding of palliative care has perpetuated ongoing stigma and created barriers to effective utilization of palliative care services.4
Currently, the World Health Organization defines palliative care as:
“an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”2(p.5)
This care is appropriate for all people suffering from a life-limiting chronic illness, which is defined as an illness that can develop slowly, over a period of months to years, that is considered incurable and progressive in nature, and it is anticipated that death could be a direct consequence of the illness.5 Palliative care can be provided at any time during the illness trajectory, from diagnosis to death, and simultaneously with curative or disease-focused treatments.6 Palliative-care providers focus on pain and symptom management, communication, establishing care goals, addressing physical and psychosocial symptoms, spiritual issues, prognostic understanding, and assisting with treatment decision-making, coping, and coordinating individualized care.7
Current health care models often rely on referral-based palliative care, which may lead to unequal access to service delivery or individuals receiving palliative care late in their disease progression.8 Seow et al.9 examined palliative care access in Ontario, Canada, and identified that of the 235,159 decedents from 2010 to 2012, patients with cancer were twice as likely to receive palliative care services compared to those who died from organ failure or frailty. Providing early palliative care (EPC) has been identified as one method to increase access to palliative care services for people with illnesses that have a less predictable trajectory, such as organ failure.10-12 Early palliative care is a proactive approach to establishing goals of care, providing symptom management, and optimizing quality of life among those diagnosed with any life-limiting chronic illness, thereby expanding the reach of traditional palliative care services.6,13,14
Temel and colleagues7 completed a seminal randomized controlled trial involving patients with lung cancer (N = 151). Participants received either an early specialist palliative care intervention, based on diagnosis of advanced cancer early in the disease progression (within eight weeks) and using a performance status scale (e.g. Eastern Cooperative Oncology Group) integrated with standard oncologic care, or standard oncologic care alone. Quality of life was measured using the Functional Assessment of Cancer Therapy-Lung and the Lung Cancer Subscale. Participants who received early specialist palliative care reported significantly higher quality-of-life scores (98.0 vs 91.5; P = 0.03). Similarly, Zimmerman and colleagues15 completed a study (N = 461) in Canada using a specialist palliative care clinic to deliver an EPC intervention to patients diagnosed with advanced lung, gastrointestinal, genito-urinary, breast, or gynecological cancer who had a survival prognosis of six to 24 months; the control group received referral-based palliative care. Authors reported a significant improvement in quality of life, symptom control, and satisfaction with care at four months in the intervention group.
Preliminary studies have outlined several benefits of EPC, primarily in the cancer population, but have offered varying definitions of the term.7,15 Early palliative care has been defined using specific disease stages (e.g. stage III and IV using the Global Initiative for Chronic Obstructive Lung Disease criteria),16 symptom burden identified using assessment tools (e.g. Functional Assessment of Chronic Illness Therapy),17 in relation to time of death (e.g. three months prior to death),18 or time from diagnosis of an incurable disease (e.g. within eight weeks of a diagnosis of metastatic cancer).7 Moreover, implementation strategies of EPC differed significantly. Authors chose to deliver EPC using specialist palliative care teams7 or nursing specialists,19 sometimes with occupational therapists or physiotherapists.13
Prior to initiating this review, a systematic search was completed to identify any existing scoping reviews examining EPC using the JBI Database of Systematic Reviews and Implementation Reports, Cochrane Database of Systematic Reviews, CINAHL, and PubMed Central. No publications were identified that used this approach to explore definitions of EPC. However, one Cochrane systematic review was found that utilized a meta-analysis to examine EPC in cancer populations. Haun et al.20 synthesized the findings of seven randomized and cluster-randomized controlled trials (N = 1614 participants) to compare effects of EPC versus usual/standard cancer care, and found EPC significantly improved health-related quality of life and symptom intensity. A lack of consistency in definitions and interventions utilized between studies was noted as a limitation of this review. Similarly, another qualitative review completed by Tassinari et al.21 noted inconsistencies between definitions and implementation of EPC in the studies and cited this as a major limitation in the synthesis of data, recommending further research investigating how EPC is defined across studies.
The purpose of this scoping review is to explore the breadth of available definitions and implementation strategies of EPC among those diagnosed with life-limiting chronic illnesses. This will be achieved by i) completing a systematic search and analysis of all papers that use the term EPC, ii) extracting all available definitions of EPC among persons with life-limiting chronic illnesses, and iii) describing how EPC has been implemented in a variety of health care settings.
How is EPC defined and implemented in the literature for those diagnosed with a life-limiting chronic illness?
This scoping review will consider all studies that define their participants as adults (aged 18 years and older) who have been diagnosed with a life-limiting chronic illness.
The concept of interest is an “early palliative care” approach. As this term is not well understood, all literature (academic and gray) that offers a novel definition and implementation strategy of EPC will be examined in this review.
This scoping review will consider studies completed in all health care settings. Literature will be included from all countries or sociocultural settings.
Types of sources
This review will include gray literature and peer-reviewed qualitative and quantitative studies: experimental, quasi-experimental, prospective, retrospective, case-control, analytical cross-sectional, phenomenological, ethnographic, and narrative studies. Studies that are reviews of original studies, conference proceedings, opinion pieces, and those that cite definitions from other published sources will be excluded.
A scoping review is the preferred methodology to address the research question as it allows for a broad exploration of existing research in this emerging field and can inform existing working definitions.22
This protocol has been prepared in accordance with JBI methodology.23
The search strategy will aim to locate both published and unpublished studies. A three-step search strategy will be used in this review.
Stage one. The initial search will include the following databases: MEDLINE (Ovid), CINAHL (EBSCO), Embase (Ovid), PsycINFO (Ovid), Web of Science Core Collection, Cochrane Library (Ovid), and ProQuest (Health and Medicine and Sociology Collections). Given that there are no controlled vocabulary terms for early palliative care, all databases will be searched to locate articles that include “early adj1 palliative” in the title and/or abstract field (see Appendix I for MEDLINE search). The outlined search strategy will retrieve information from both academic as well as gray literature.
Stage two. A gray literature search will be completed using ProQuest, CADTH, Google, and SUMSearch, with an exact keyword search for “early palliative care.” The results will be limited to national and international guidelines.
Stage three. The reference lists of all studies included for analysis will be examined for additional sources that should be included in the review.
Sources published in English will be included. There will be no date limitation on the search strategy.
Once all searches are complete, citations will be collated and uploaded into EndNote X7 (Clarivate Analytics, PA, USA) and duplicates removed. Titles and abstracts will be screened by two independent reviewers to assess for eligibility based on the above inclusion criteria. Those articles that meet inclusion criteria will have full texts uploaded and their details imported into the JBI System for the Unified Management, Assessment and Review of Information (JBI SUMARI; JBI, Adelaide, Australia). The full text of selected citations will be assessed in detail by the two reviewers for final decisions on inclusion. Reasons for exclusion of full-text studies that do not meet the inclusion criteria will be recorded and reported in the scoping review. Any discrepancies that arise between the reviewers at each stage of the study selection process with be resolved through discussion or with a third reviewer. Studies that provide definitions of EPC based on original articles will be identified using Covidence software (Veritas Health Innovation, Melbourne, Australia), which will allow the research team to track which studies are using existing definitions. The results of the search and reasons for exclusion will be reported using a PRISMA-ScR flow diagram.24
Data will be extracted from studies included in the review by two independent reviewers using the standardized JBI data extraction tool for scoping reviews (Appendix II).23 The data extracted will include details related to the concept of this scoping review, such as inclusion criteria for EPC, definition of EPC, disease being studied, and implementation strategy. An iterative process will be used; researchers may add additional extraction characteristics to the instrument after a pilot phase (i.e. in which data from 10 studies will be extracted and assessed for congruency between reviewers).25 Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer.
Data analysis and presentation
The information retrieved will be organized based on type of disease, care setting and/or type of facility delivering services, definition of EPC, the medical professionals responsible for delivering care, and which palliative care approach or intervention was used. Results will be presented using a narrative synthesis presented in table form.
This review will contribute to the primary reviewer's (CK) PhD thesis.
Appendix I: Search strategy
Ovid MEDLINE. Search completed 18 June 2019.
From database inception (1946) to present.
Appendix II: Data extraction instrument
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