research introduction
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014
Educational Intervention in End-of-Life
Care: An Evidence-Based Analysis
I Nevis
December 2014
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 2
Suggested Citation
This report should be cited as follows:
Nevis I. Educational intervention in end-of-life care: an evidence-based analysis. Ont Health Technol Assess Ser
[Internet]. 2014 December;14(17):1–30. Available from: http://www.hqontario.ca/evidence/publications-and-ohtac- recommendations/ontario-health-technology-assessment-series/eol-educational-interventions
Permission Requests
All inquiries regarding permission to reproduce any content in the Ontario Health Technology Assessment Series
should be directed to [email protected].
How to Obtain Issues in the Ontario Health Technology Assessment Series
All reports in the Ontario Health Technology Assessment Series are freely available in PDF format at the following
URL: http://www.hqontario.ca/evidence/publications-and-ohtac-recommendations/ontario-health-technology-
assessment-series.
Conflict of Interest Statement
The members of the Division of Evidence Development and Standards at Health Quality Ontario are impartial.
There are no competing interests or conflicts of interest to declare.
Indexing
The Ontario Health Technology Assessment Series is currently indexed in MEDLINE/PubMed, Excerpta
Medica/Embase, and the Centre for Reviews and Dissemination database.
Peer Review
All reports in the Ontario Health Technology Assessment Series are subject to external expert peer review.
Additionally, Health Quality Ontario posts draft reports and recommendations on its website for public comment
prior to publication. For more information, please visit:
http://www.hqontario.ca/en/mas/ohtac_public_engage_overview.html.
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 3
About Health Quality Ontario
Health Quality Ontario is an arms-length agency of the Ontario government. It is a partner and leader in
transforming Ontario’s health care system so that it can deliver a better experience of care, better outcomes for
Ontarians, and better value for money.
Health Quality Ontario strives to promote health care that is supported by the best available scientific evidence. The
Evidence Development and Standards branch works with expert advisory panels, clinical experts, scientific
collaborators, and field evaluation partners to conduct evidence-based reviews that evaluate the effectiveness and
cost-effectiveness of health interventions in Ontario.
Based on the evidence provided by Evidence Development and Standards and its partners, the Ontario Health
Technology Advisory Committee—a standing advisory subcommittee of the Health Quality Ontario Board—makes
recommendations about the uptake, diffusion, distribution, or removal of health interventions to Ontario’s Ministry
of Health and Long-Term Care, clinicians, health system leaders, and policymakers.
Health Quality Ontario’s research is published as part of the Ontario Health Technology Assessment Series, which is
indexed in MEDLINE/PubMed, Excerpta Medica/Embase, and the Centre for Reviews and Dissemination database.
Corresponding Ontario Health Technology Advisory Committee recommendations and other associated reports are
also published on the Health Quality Ontario website. Visit http://www.hqontario.ca for more information.
About the Ontario Health Technology Assessment Series
To conduct its comprehensive analyses, Evidence Development and Standards and its research partners review the
available scientific literature, making every effort to consider all relevant national and international research;
collaborate with partners across relevant government branches; consult with expert advisory panels, clinical and
other external experts, and developers of health technologies; and solicit any necessary supplemental information.
In addition, Evidence Development and Standards collects and analyzes information about how a health intervention
fits within current practice and existing treatment alternatives. Details about the diffusion of the intervention into
current health care practices in Ontario add an important dimension to the review.
The Ontario Health Technology Advisory Committee uses a unique decision determinants framework when making
recommendations to the Health Quality Ontario Board. The framework takes into account clinical benefits, value for
money, societal and ethical considerations, and the economic feasibility of the health care intervention in Ontario.
Draft Ontario Health Technology Advisory Committee recommendations and evidence-based reviews are posted for
21 days on the Health Quality Ontario website, giving individuals and organizations an opportunity to provide
comments prior to publication. For more information, please visit: http://www.hqontario.ca/evidence/evidence-
process/evidence-review-process/professional-and-public-engagement-and-consultation.
Disclaimer
This report was prepared by the Evidence Development and Standards branch at Health Quality Ontario or one of its
research partners for the Ontario Health Technology Advisory Committee and was developed from analysis,
interpretation, and comparison of scientific research. It also incorporates, when available, Ontario data and
information provided by experts and applicants to HQO. The analysis may not have captured every relevant
publication and relevant scientific findings may have been reported since the development of this recommendation.
This report may be superseded by an updated publication on the same topic. Please check the Health Quality Ontario
website for a list of all publications: http://www.hqontario.ca/evidence/publications-and-ohtac-recommendations.
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 4
Abstract
Background
End-of-life care is a complex service. The education of health care providers, patients nearing end of life,
and informal caregivers plays a vital role in increasing knowledge about the care options available. This
review looks at whether education helps improve outcomes for patients nearing the end of life and for
their informal caregivers.
Objectives
To systematically review and study the effectiveness of educational interventions for health care
providers, patients nearing the end of life, and informal caregivers to improve patient and informal
caregiver outcomes.
Data Sources
We performed a literature search using Ovid MEDLINE, Ovid MEDLINE In-Process and Other Non-
Indexed Citations, Ovid Embase, Cumulative Index to Nursing & Allied Health Literature (CINAHL),
and EBM Reviews for studies published from January 1, 2003, to October 31, 2013.
Review Methods
We conducted this review according to published guidelines and using a prespecified protocol. We
included primary studies that evaluated any educational intervention in end-of-life care for health care
providers, patients, or informal caregivers and measured patient or informal caregiver quality of life using
validated scales.
Results
The database search yielded 2,468 citations; we included 6 studies in the review. Studies reported on
educational interventions for health care providers, patients nearing the end of life, and informal
caregivers. After an educational intervention, patients nearing the end of life had better symptom control
and informal caregivers had improved quality of life. However, there was no significant change in patient
quality of life or pain control, or in informal caregiver or health care provider satisfaction. There was no
decrease in resource utilization.
Limitations
Most studies did not report data adequately, did not define “routine care” and were not blinded.
Allocation concealment was also inadequately reported.
Conclusions
Based on moderate quality evidence, education of health care providers, patients nearing the end of life,
and informal caregivers improved patient symptom control and informal caregiver quality of life.
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 5
Plain Language Summary
End-of-life care is complicated. It is important for health care providers, other care givers, and patients
nearing the end of life to know what options are available for end-of-life care. This review looks at
whether education helps make things better for patients nearing the end of life, as well as for their
caregivers. We found that education improved patients’ symptom control and caregivers’ quality of life.
Education did not improve patients’ quality of life, and it did not improve health care provider or
caregiver satisfaction. We did not find evidence that education reduces emergency department visits,
admissions to intensive care, or the number of days in hospital.
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 6
Table of Contents
List of Tables ............................................................................................................................................... 7
List of Figures .............................................................................................................................................. 8
List of Abbreviations .................................................................................................................................. 9
Background ............................................................................................................................................... 10 Objectives of Analysis ................................................................................................................................................. 10 Clinical Need and Target Population ........................................................................................................................... 10
Conceptual Framework ...................................................................................................................................... 11 Technology/Technique ................................................................................................................................................ 11
Evidence-Based Analysis .......................................................................................................................... 12 Research Question ....................................................................................................................................................... 12 Research Methods........................................................................................................................................................ 12 Statistical Analysis ...................................................................................................................................................... 13 Quality of Evidence ..................................................................................................................................................... 13 Results of Evidence-Based Analysis ........................................................................................................................... 14
Study Characteristics .......................................................................................................................................... 15 Educational Interventions ................................................................................................................................... 16 Outcomes ............................................................................................................................................................ 17
Conclusions ................................................................................................................................................ 21
Acknowledgements ................................................................................................................................... 22
Appendices ................................................................................................................................................. 24 Appendix 1: Literature Search Strategies .................................................................................................................... 24 Appendix 2: Evidence Quality Assessment ................................................................................................................. 26
References .................................................................................................................................................. 28
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 7
List of Tables
Table 1: Body of Evidence Examined According to Study Design ............................................................ 15 Table 2: Characteristics of the Included Studies ......................................................................................... 15 Table 3: Educational Interventions Used in the Included Studies .............................................................. 16 Table 4: Patient Quality of Life .................................................................................................................. 17 Table 5: Informal Caregiver Quality of Life ............................................................................................... 17 Table 6: Pain Control .................................................................................................................................. 18 Table 7: Symptom Control .......................................................................................................................... 18 Table 8: Informal Caregiver and Health Care Provider Satisfaction .......................................................... 19 Table 9: Number of Hospital Days and Emergency Department Visits ..................................................... 19 Table 10: Intensive Care Unit Admissions ................................................................................................. 20 Table A1: GRADE Evidence Profile for the Comparison of Educational Intervention and Usual Care .... 26 Table A2: Risk of Bias Among Randomized Controlled Trials for the Comparison of Educational
Intervention and Usual Care .......................................................................................................... 27
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 8
List of Figures
Figure 1: Conceptual Framework ............................................................................................................... 11 Figure 2: Citation Flow Chart ..................................................................................................................... 14 Figure 3: Informal Caregiver Quality of Life ............................................................................................. 18 Figure 4: Symptom Control ........................................................................................................................ 19 Figure 5: Intensive Care Unit Admissions .................................................................................................. 20
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 9
List of Abbreviations
EoL End of life
GRADE Grading of Recommendations Assessment, Development, and Evaluation
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 10
Background
Objectives of Analysis
To systematically review studies that included educational interventions for health care providers, patients nearing the end of life (EoL), and informal caregivers to improve patient and informal
caregiver outcomes.
To determine the effectiveness of educational interventions for improving quality of life in patients nearing EoL and informal caregivers.
Clinical Need and Target Population
Patients nearing the end of life have a progressive, life-threatening disease and no possibility of obtaining
remission, stabilization, or modification of the course of illness. (1) EoL is a difficult and highly
emotional experience, not only for the patients themselves, but also for their informal caregivers and
health care providers. Ideally, EoL care should make the experience much more manageable for patients
and their informal caregivers. We know that education can increase one’s sense of self-control and
In July 2013, the Evidence Development and Standards (EDS) branch of Health Quality Ontario (HQO) began work on developing an evidentiary framework for end of life care. The focus was on adults with advanced disease who are not expected to recover from their condition. This project emerged from a request by the Ministry of Health and Long-Term Care that HQO provide them with an evidentiary platform on strategies to optimize the care for patients with advanced disease, their caregivers (including family members), and providers.
After an initial review of research on end-of-life care, consultation with experts, and presentation to the Ontario Health Technology Advisory Committee (OHTAC), the evidentiary framework was produced to focus on quality of care in both the inpatient and the outpatient (community) settings to reflect the reality that the best end-of-life care setting will differ with the circumstances and preferences of each client. HQO identified the following topics for
analysis: determinants of place of death, patient care planning discussions, cardiopulmonary resuscitation, patient, informal caregiver and healthcare provider education, and team-based models of care. Evidence-based analyses were prepared for each of these topics.
HQO partnered with the Toronto Health Economics and Technology Assessment (THETA) Collaborative to evaluate the cost-effectiveness of the selected interventions in Ontario populations. The economic models used administrative data to identify an end-of-life population and estimate costs and savings for interventions with significant estimates of effect. For more information on the economic analysis, please contact Murray Krahn at [email protected].
The End-of-Life mega-analysis series is made up of the following reports, which can be publicly accessed at http://www.hqontario.ca/evidence/publications-and-ohtac-recommendations/ohtas-reports-and-ohtac- recommendations.
End-of-Life Health Care in Ontario: OHTAC Recommendation
Health Care for People Approaching the End of Life: An Evidentiary Framework
Effect of Supportive Interventions on Informal Caregivers of People at the End of Life: A Rapid Review
Cardiopulmonary Resuscitation in Patients with Terminal Illness: An Evidence-Based Analysis
The Determinants of Place of Death: An Evidence-Based Analysis
Educational Intervention in End-of-Life Care: An Evidence-Based Analysis
End-of-Life Care Interventions: An Economic Analysis
Patient Care Planning Discussions for Patients at the End of Life: An Evidence-Based Analysis
Team-Based Models for End-of-Life Care: An Evidence-Based Analysis
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 11
theoretical well-being, but there is very little research to show whether educating health care providers,
patients nearing EoL, and their informal caregivers can improve outcomes for patients and informal
caregivers.
Conceptual Framework
The conceptual framework in Figure 1 is derived from Stewart et al. (2) In their report, the authors discuss
how the quality of life of patients nearing EoL and their informal caregivers is influenced by their
personal and social environment, as well as by the structure and process of care. The patient’s situation
and clinical condition, along with the support they and their informal caregivers receive, affect the quality
of their health care and in turn their quality of life. Variations in the health care system and how patients
and informal caregivers access it may further contribute to outcomes for patients and informal caregivers.
Decision-making processes, information available to the dying person, organization of care, and the
patient’s informal caregivers may also influence outcomes. The patient’s personal and social environment
and the structure and process of care become part of education, determining quality-of-life and system-
level outcomes. (2)
Figure 1: Conceptual Framework
Technology/Technique
Education is “that multidisciplinary practice, which is concerned with designing, implementing, and
evaluating educational programs that enable individuals, families, groups, organizations, and communities
to play active roles in achieving, protecting, and sustaining health.” (3) Health education is “any
combination of learning experiences designed to facilitate voluntary actions conducive to health.” (4)
Ontario health care providers receive continuing medical education on a wide range of topics, but
education on EoL care may not be provided regularly. As part of EoL care, health care providers may also
need to co-ordinate education for patients nearing EoL and their informal caregivers.
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 12
Evidence-Based Analysis
Research Question
Do educational interventions in EoL care for health care providers, patients nearing the end of life, or
informal caregivers improve the quality of life of patients or informal caregivers compared with usual
education?
Research Methods
Literature Search
Search Strategy
A literature search was performed on December 2, 2013, using Ovid MEDLINE, Ovid MEDLINE In-
Process and Other Non-Indexed Citations, Ovid Embase, EBSCO Cumulative Index to Nursing & Allied
Health Literature (CINAHL), and EBM Reviews, for studies published from January 1, 2003, to October
31, 2013. (Appendix 1 provides details of the search strategies.) Abstracts were reviewed by a single
reviewer and, for those studies meeting the eligibility criteria, full-text articles were obtained. Reference
lists were also examined for any additional relevant studies not identified through the search.
Inclusion Criteria
English-language full-text publications
published between January 1, 2003, and October 31, 2013
randomized controlled trials and systematic reviews (with or without meta-analyses)
EoL population as defined by individual studies
studies in adult populations (patients 18 years and older)
any type of educational intervention delivered to those nearing EoL, their informal caregivers, or health care providers
Exclusion Criteria
studies in mixed EoL populations (adults and children) where data extraction was not possible
studies in pediatric populations (patients < 18 years)
EoL after acute trauma (e.g., accidents)
observational studies, case reports, editorials, letters, comments, conference abstracts, and cross- sectional studies
Outcomes of Interest
Primary Outcomes
patient quality of life as measured with a validated scale
informal caregiver quality of life as measured with a validated scale
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 13
Secondary Outcomes
patient pain control
patient symptom control
informal caregiver and health care provider satisfaction
number of hospital days and emergency department visits
intensive care unit admissions
Statistical Analysis
We analyzed data using Review Manager Version 5. (5) We pooled mean differences and standard errors
from the primary studies (when available) to obtain a point estimate with 95% confidence intervals using
a random effects model. (6-8) We calculated Q statistics to determine between-study heterogeneity, using
alpha = 0.10 as the criterion for statistical significance. We used I 2 to quantify the magnitude of
heterogeneity, with values of 0% to 30%, 31% to 50%, and > 50% representing mild, moderate, and
notable heterogeneity, respectively. (9) A funnel plot was constructed to check for publication bias. (10)
Quality of Evidence
The quality of the body of evidence for each outcome was examined according to the Grading of
Recommendations Assessment, Development, and Evaluation (GRADE) Working Group criteria. (11)
The overall quality was determined to be high, moderate, low, or very low using a step-wise, structural
methodology.
Study design was the first consideration; the starting assumption was that randomized controlled trials are
high quality. Five additional factors—risk of bias, inconsistency, indirectness, imprecision, and
publication bias—were then taken into account. Limitations in these areas resulted in downgrading the
quality of evidence. Finally, 3 main factors that may raise the quality of evidence were considered: the
large magnitude of effect, the dose response gradient, and any residual confounding factors. (12) For
more detailed information, please refer to the latest series of GRADE articles. (12)
As stated by the GRADE Working Group, the final quality score can be interpreted using the following
definitions:
High High confidence in the effect estimate—the true effect lies close to the estimate of the
effect
Moderate Moderate confidence in the effect estimate—the true effect is likely to be close to the
estimate of the effect, but may be substantially different
Low Low confidence in the effect estimate—the true effect may be substantially different
from the estimate of the effect
Very Low Very low confidence in the effect estimate—the true effect is likely to be substantially
different from the estimate of the effect
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 14
Results of Evidence-Based Analysis
The database search yielded 2,468 citations published between January 1, 2003, and October 31, 2013
(with duplicates were removed). Articles were excluded based on information in the title and abstract.
The full texts of potentially relevant articles were obtained for further assessment. Figure 2 shows the
breakdown of when and for what reason citations were excluded from the analysis.
Six studies (all RCTs) met the inclusion criteria. The reference lists of the included studies were hand-
searched to identify other relevant studies, but no additional citations were included.
Figure 2: Citation Flow Chart
Abbreviation: RCT, randomized controlled trial.
Search results (excluding duplicates) n = 2,468
Study abstracts reviewed n = 2,275
Full text studies reviewed n = 71
Included Studies (6)
RCTs: n = 6
Additional citations identified n = 0
Citations excluded based on title n = 193
Citations excluded based on abstract n = 2,204
Citations excluded based on full text n = 65
Reasons for exclusion
Abstract review: Not population of interest, n = 1,796; not relevant study design, n = 93; not human patients, n = 6; no intervention of interest, n = 252; no outcomes of interest, n = 37; no comparison group, n = 20.
Full text review: Not relevant study design, n = 38; no intervention of interest, n = 9; no comparison, n = 8; no outcomes of interest, n = 10.
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 15
For each included study, the study design was identified and is summarized below in Table 1, a modified
version of a hierarchy of study design by Goodman, 1996. (13)
Table 1: Body of Evidence Examined According to Study Design
Study Design Number of Eligible Studies
RCTs
Systematic review of RCTs
Large RCT 6
Small RCT
Observational Studies
Systematic review of non-RCTs with contemporaneous controls
Non-RCT with contemporaneous controls
Systematic review of non-RCTs with historical controls
Non-RCT with historical controls
Database, registry, or cross-sectional study
Case series
Retrospective review, modelling
Studies presented at an international conference
Expert opinion
Total 6
Abbreviation: RCT, randomized controlled trial.
Study Characteristics
Table 2 summarizes the characteristics of the included studies.
Table 2: Characteristics of the Included Studies
Author, Year Country Sample Size, N
EoL Population Mean Age, y (SD) I/C
Male, n (%) I/C
Patient Care Setting
Pelayo- Alvarez et al, 2013 (14)
Spain 117 Advanced cancer
69 (11) / 70 (11) 39 (62) / 31 (57) Primary care
Curtis et al, 2013 (15)
United States
1,717 Advanced chronic diseasea
65 (14) / 66 (14) 455 (59) / 534 (56) Hospital
Curtis et al, 2011 (16)b
United States
396 Advanced chronic diseasea
58 (15) / 59 (15) 66 (37) / 55 (26) Hospital
Meyers et al, 2011 (17)
United States
441 Advanced cancer
NR / NR NR / NR Hospital
Bakitas et al, 2009 (18)
United States
279 Advanced cancer
65 (10) / 65 (12) 90 (62) / 78 (58) Hospital
McMillan et al, 2006 (19)
United States
220 Advanced cancer
71 (11) / 70 (13) 56 (63)/ 51 (56) Community- dwelling, hospice care
Abbreviations: C, control; EoL, end of life; I, intervention; NR, not reported; SD, standard deviation. aIncluded chronic obstructive pulmonary disease, congestive heart failure, end-stage liver disease, and terminal cancer. bCluster randomized trial.
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 16
Educational Interventions
Table 3 describes the educational interventions used in the 6 included studies. Educational interventions
were for health care providers, patients nearing EoL, or informal caregivers. Health care providers
included clinicians, nurses, internal medicine residents, and palliative care fellows. Interventions were
compared to usual care or usual education.
Table 3: Educational Interventions Used in the Included Studies
Author, Year Intervention Population
Intervention (Domains) Control
Educational of Health Care Providers
Pelayo-Alvarez et al, 2013 (14)
Primary care physicians
96-hour online training program for palliative care self-training (communication)
Voluntary traditional palliative care training course
Curtis et al, 2013 (15)
Internal medicine residents and fellows, nurses
Brief didactic overview, skills practice using simulation, reflective discussions on palliative and EoL communication (communication)
Usual education
Curtis et al, 2011 (16)
Clinicians Grand rounds, workshops, and video presentations; academic detailing of specific barriers to improving EoL care; implementation of system supports that increased knowledge, enhanced attitudes, and modelled appropriate behaviours (communication, knowledge, and attitudes)
Usual palliative care
Education of Informal Caregivers and Patients
Meyers et al, 2011 (17)
Patients and informal caregivers
Three conjoint in-person educational sessions that addressed a problem known to affect patients with cancer (including physical or psychological symptoms or issues related to resources or relationships) and communicating with the health care team (symptom management)
Usual palliative care
Bakitas et al, 2009 (18)
Patients Educational approach to encourage patient activation, self-management, and empowerment (symptom management and coping skills)
Usual care participants were allowed to use all oncology and supportive services without restrictions, including referral to interdisciplinary palliative care service
McMillan et al, 2006 (19)
Informal caregivers Problem-solving training and therapy (coping skills)
Usual hospice care
Abbreviation: EoL, end of life.
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 17
Outcomes
Patient Quality of Life
Table 4 describes the findings of 5 studies that reported on patient quality of life. (14-18) Educating either
health care providers or patients and informal caregivers did not lead to significant improvement in the
quality of life of patients nearing EoL.
Table 4: Patient Quality of Life
Author, Year Sample Size, N I/C
Quality of Life Scale P value
Education of Health Care Providers
Pelayo-Alvarez et al, 2013 (14) 63/54 Rotterdam Symptom Checklist global scale > 0.05
Curtis et al, 2013 (15) 771/946 Quality of End-of-Life Care questionnaire 0.34
Curtis et al, 2011 (16) 182/214 Quality of Dying and Death questionnaire 0.33
Education of Patients and Informal Caregivers
Meyers et al, 2011 (17) 324/117 City of Hope quality-of-life instruments 0.70
Bakitas et al, 2009 (18) 145/134 Functional Assessment of Chronic Illness Therapy–Palliative Care
0.15
Abbreviation: C, control; I, intervention.
Informal Caregiver Quality of Life
Table 5 describes the findings of 3 studies that looked at informal caregiver quality of life. (15;17;19) The
study by Curtis et al (15) described educational intervention for health care providers and reported no
significant difference in informal caregiver quality of life. The other 2 studies (17;19) described
educational interventions for patients nearing EoL and their informal caregivers and reported a significant
difference in informal caregiver quality of life. When 2 studies educating patients and caregivers were
pooled in meta-analysis, there was improvement in informal caregiver quality of life (Figure 3).
Table 5: Informal Caregiver Quality of Life
Author, Year Sample Size, N I/C
Quality of Life Scale P value
Education of Health Care Providers
Curtis et al, 2013 (15) 421/401 Quality of End-of-Life Care questionnaire 0.33
Education of Patients and Informal Caregivers
Meyers et al, 2011 (17) 324/117 City of Hope quality-of-life instruments 0.02
McMillan et al, 2006 (19) 111/109 Caregiver Quality of Life Index–Cancer 0.03
Abbreviation: C, control; I, intervention.
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 18
Figure 3: Informal Caregiver Quality of Life
Abbreviations: CI, confidence interval; df, degrees of freedom; I2, degree of heterogeneity; IV, instrumental variable; SE, standard error.
Patient Pain Control
Table 6 describes 2 studies that looked at patient pain control. (14;16) There was no significant
improvement in pain control after educational interventions for health care providers.
Table 6: Pain Control
Author, Year Sample Size, N I/C
Pain Control Scale P value
Pelayo-Alvarez et al, 2013 (14) 63/54 Brief Pain Inventory Palliative Care Outcome Scale NS
Curtis et al, 2011 (16) 165/144a Chart abstraction 0.81
Abbreviation: I, intervention; C, control; NS, not significant. aMeasured as a secondary outcome in a smaller sample.
Patient Symptom Control
Table 7 describes 3 studies that reported on overall symptom management. Two reported a statistically
significant improvement in symptom control among patients nearing EoL. (15;19) Meta-analysis showed
overall improvement of symptoms in patients nearing EoL (Figure 4). Table 7: Symptom Control
Author, Year Sample Size, N I/C
Primary Symptom(s)
Symptom Scale P value
Education of Health Care Providers
Curtis et al, 2013 (15) 771/946 Depression 8-item Personal Health Questionnaire 0.006
Education of Patients and Informal Caregivers
Bakitas et al, 2009 (18) 145/134a All symptomsb Edmonton Symptom Assessment Scale 0.83
McMillan et al, 2006 (19) 111/109a All symptoms Memorial Symptom Assessment Scale < 0.001
Abbreviation: I, intervention; C, control. aMeasured as a secondary outcome in a smaller sample. bExcept for constipation, dizziness, and pain, which were statistically significant.
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 19
Figure 4: Symptom Control
Abbreviations: CI, confidence interval; df, degrees of freedom; I2, degree of heterogeneity; IV, instrumental variable; SE, standard error.
Informal Caregiver and Health Care Provider Satisfaction
Table 8 describes 2 studies that reported on informal caregiver and health care provider satisfaction.
(14;16) Neither caregiver nor health care provider satisfaction significantly differed after an educational
intervention for health care providers. Table 8: Informal Caregiver and Health Care Provider Satisfaction
Author, Year Sample Size, N I/C
Satisfaction Scale P value
Caregiver Satisfaction
Pelayo-Alvarez et al, 2013 (14) 48/36a Spanish version of SERVQUAL NS
Curtis et al, 2011 (16) 182/214 Quality of Dying and Death questionnaire 0.66
Health Care Provider Satisfaction
Curtis et al, 2011 (16) 71/106a Quality of Dying and Death questionnaire 0.81
Abbreviation: I, intervention; C, control; NS, not significant. aMeasured as a secondary outcome in a smaller sample.
Number of Hospital Days and Emergency Department Visits
Table 9 describes the findings of 1 study (18) that reported on number of hospital days and emergency
department visits. There was no significant difference after an educational intervention for patients.
Table 9: Number of Hospital Days and Emergency Department Visits
Author, Year Sample Size, N I/C
Outcome Mean, N I/C
P value
Bakitas et al, 2009 (18) 145/134 Hospital days 2.6/2.8a 0.60
ED visits 0.28/0.38a 0.62
Abbreviation: C, control; ED, emergency department; I, intervention; NR, not reported; SD, standard deviation. aConfidence interval not reported.
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 20
Intensive Care Unit Admissions
Table 10 describes the findings of 2 studies that reported on intensive care unit admissions. There was no
significant difference in admissions after an educational intervention for health care providers. (16;18)
Meta-analysis showed no significant difference when results were pooled (Figure 5).
Table 10: Intensive Care Unit Admissions
Author, Year Sample Size, N I/C
Parameter Estimate (95% CI) P value
Curtis et al, 2011 (16) 182/214 Number of days in the ICU HR 0.86 (0.73–1.01)
0.07
Bakitas et al, 2009 (18) 145/134 Mean number of ICU admissions 0.03 intervention/0.05 control (NR)
0.36
Abbreviation: C, control; CI, confidence interval; HR, hazard ratio; I, intervention; ICU, intensive care unit.
Figure 5: Intensive Care Unit Admissions
Abbreviations: CI, confidence interval; df, degrees of freedom; I2, degree of heterogeneity; IV, instrumental variable; SE, standard error.
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 21
Conclusions
Educational interventions for health care providers that were focused on improving communication skills,
knowledge, and attitudes towards EoL care:
significantly improved patient symptom control (moderate quality evidence) but did not significantly improve pain control (moderate quality evidence)
did not significantly improve informal caregiver quality of life, informal caregiver satisfaction, or health care provider satisfaction (moderate quality evidence)
did not improve resource utilization, including number of hospital days, emergency department visits, or intensive care unit admissions (moderate quality evidence)
did not significantly improve patient quality of life (low quality evidence)
Educational interventions for informal caregivers and patients that were focused on symptom
management and coping skills:
significantly improved informal caregiver quality of life (moderate quality evidence)
significantly improved patient symptom control (moderate quality evidence)
did not improve resource utilization, including number of hospital days, emergency department visits, or number of intensive care unit admissions (moderate quality evidence)
did not significantly improve patient quality of life (low quality evidence)
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 22
Acknowledgements
Editorial Staff
Jeanne McKane, CPE, ELS(D)
Medical Information Services
Corinne Holubowich, BEd, MLIS
Health Quality Ontario’s Expert Advisory Panel on End-of-Life Care
Panel Member Affiliation(s) Appointment(s)
Panel Co-Chairs
Dr Robert Fowler Sunnybrook Research Institute
University of Toronto
Senior Scientist
Associate Professor
Shirlee Sharkey St. Elizabeth Health Care Centre President and CEO
Professional Organizations Representation
Dr Scott Wooder Ontario Medical Association President
Health Care System Representation
Dr Douglas Manuel Ottawa Hospital Research Institute
University of Ottawa
Senior Scientist
Associate Professor
Primary/Palliative Care
Dr Russell Goldman Mount Sinai Hospital, Tammy Latner Centre for Palliative Care
Director
Dr Sandy Buchman Mount Sinai Hospital, Tammy Latner Centre for Palliative Care
Cancer Care Ontario
University of Toronto
Educational Lead
Clinical Lead QI
Assistant Professor
Dr Mary Anne Huggins Mississauga Halton Palliative Care Network; Dorothy Ley Hospice
Medical Director
Dr Cathy Faulds London Family Health Team Lead Physician
Dr José Pereira The Ottawa Hospital
University of Ottawa
Professor, and Chief of the Palliative Care program at The Ottawa Hospital
Dean Walters Central East Community Care Access Centre Nurse Practitioner
Critical Care
Dr Daren Heyland Clinical Evaluation Research Unit Kingston General Hospital
Scientific Director
Oncology
Dr Craig Earle Ontario Institute for Cancer Research Cancer Care Ontario
Director of Health Services Research Program
Internal Medicine
Dr John You McMaster University Associate Professor
Geriatrics
Dr Daphna Grossman Baycrest Health Sciences Deputy Head Palliative Care
Social Work
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 23
Panel Member Affiliation(s) Appointment(s)
Mary-Lou Kelley School of Social Work and Northern Ontario School of Medicine
Lakehead University
Professor
Emergency Medicine
Dr Barry McLellan Sunnybrook Health Sciences Centre President and Chief Executive Officer
Bioethics
Robert Sibbald London Health Sciences Centre
University of Western Ontario
Professor
Nursing
Vicki Lejambe Saint Elizabeth Health Care Advanced Practice Consultant
Tracey DasGupta Sunnybrook Health Sciences Centre Director, Interprofessional Practice
Mary Jane Esplen De Souza Institute University of Toronto
Director Clinician Scientist
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 24
Appendices
Appendix 1: Literature Search Strategies
Databases searched: EBM Reviews - Cochrane Database of Systematic Reviews <2005 to October
2013>, EBM Reviews - ACP Journal Club <1991 to November 2013>, EBM Reviews - Database of
Abstracts of Reviews of Effects <4th Quarter 2013>, EBM Reviews - Cochrane Central Register of
Controlled Trials <October 2013>, EBM Reviews - Cochrane Methodology Register <3rd Quarter 2012>,
EBM Reviews - Health Technology Assessment <4th Quarter 2013>, EBM Reviews - NHS Economic
Evaluation Database <4th Quarter 2013>, Embase <1980 to 2013 Week 47>, Ovid MEDLINE(R) <1946
to November Week 3 2013>, Ovid MEDLINE(R) In-Process & Other Non-Indexed Citations <November
27, 2013>
Search Strategy
# Searches Results
1 exp Terminal Care/ 86915
2 exp Palliative Care/ use mesz,acp,cctr,coch,clcmr,dare,clhta,cleed or exp Terminally Ill/
use mesz,acp,cctr,coch,clcmr,dare,clhta,cleed 45676
3 exp palliative therapy/ use emez or exp terminally ill patient/ use emez or exp terminal
disease/ use emez or exp dying/ use emez 73127
4
((End adj2 life adj2 care) or EOL care or (terminal* adj2 (care or caring or ill* or
disease*)) or palliat* or dying or (Advanced adj3 (disease* or illness*)) or end
stage*).ti,ab.
340496
5 or/1-4 434706
6 exp *Education/ 848145
7 (educat* or curricul* or classroom* or train* or learn* or teach*).ti,ab. 2018594
8 or/6-7 2417444
9 5 and 8 29080
10 exp "Quality of Life"/ 386073
11 exp Patient Readmission/ use mesz,acp,cctr,coch,clcmr,dare,clhta,cleed 8614
12 exp hospital readmission/ use emez 15144
13 (quality of life or QOL or emergency room visit* or hospital readmission*).ti,ab. 390236
14 or/10-13 547409
15 9 and 14 3417
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 25
16 limit 15 to english language [Limit not valid in CDSR,ACP Journal
Club,DARE,CCTR,CLCMR; records were retained] 3138
17 limit 16 to yr="2003 -Current" [Limit not valid in DARE; records were retained] 2345
18 remove duplicates from 17 1607
CINAHL
# Query Results
S1 (MH "Terminal Care+") 39,250
S2 (MH "Palliative Care") 19,910
S3 (MH "Terminally Ill Patients+") 7,716
S4 ((End N2 life N2 care) or EOL care or (terminal* N2 (care or caring or ill* or disease*)) or
palliat* or dying or (advanced N3 (disease* or illness*)) or end stage*) 52,768
S5 S1 OR S2 OR S3 OR S4 60,774
S6 (MM "Education+") 264,924
S7 (educat* or curricul* or classroom* or train* or learn* or teach*) 583,322
S8 S6 OR S7 645,534
S9 S5 AND S8 10,187
S10 (MH "Quality of Life+") 57,754
S11 (MH "Readmission") 4,769
S12 (quality of life or QOL or emergency room visit* or hospital readmission*) 77,877
S13 S10 OR S11 OR S12 84,483
S14 S9 AND S13 1,138
S15
S9 AND S13
Limiters - Published Date: 20030101-20131231; English Language
861
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 26
Appendix 2: Evidence Quality Assessment
Table A1: GRADE Evidence Profile for the Comparison of Educational Intervention and Usual Care
Number of Studies (Design)
Risk of Bias Inconsistency Indirectness Imprecision Publication Bias Upgrade Considerations
Quality
Patient Quality of Life
5 (RCTs) (14-18) Serious limitations (–1)a
Serious limitations (–1)b
No serious limitations
No serious limitations
Undetected None ⊕⊕ Low
Informal Caregiver Quality of Life
3 (RCTs) (15;17;19) Serious limitations (–1)a
No serious limitations
No serious limitations
No serious limitations
Undetected None ⊕⊕⊕ Moderate
Patient Pain Control
2 (RCTs) (14;16) Serious limitations (–1)a
No serious limitations
No serious limitations
No serious limitations
Undetected None ⊕⊕⊕ Moderate
Patient Symptom Control
3 (RCTs) (15;18;19) Serious limitations (–1)a
No serious limitations
No serious limitations
No serious limitations
Undetected None ⊕⊕⊕ Moderate
Informal Caregiver Satisfaction
2 (RCTs) (14;16) Serious limitations (–1)a
No serious limitations
No serious limitations
No serious limitations
Undetected None ⊕⊕⊕ Moderate
Health Care Provider Satisfaction
1 (RCT) (16) Serious limitations (–1)a
No serious limitations
No serious limitations
No serious limitations
Undetected None ⊕⊕⊕ Moderate
Number of Hospital Days
1 (RCT) (18) Serious limitations (–1)a
No serious limitations
No serious limitations
No serious limitations
Undetected None ⊕⊕⊕ Moderate
Number of Emergency Department Visits
1 (RCT) (18) Serious limitations (–1)a
No serious limitations
No serious limitations
No serious limitations
Undetected None ⊕⊕⊕ Moderate
Intensive Care Unit Admissions
2 (RCTs) (16;18) Serious limitations (–1)a
No serious limitations
No serious limitations
No serious limitations
Undetected None ⊕⊕⊕ Moderate
Abbreviations: GRADE, Grading of Recommendations Assessment, Development, and Evaluation; RCT, randomized controlled trial. aConcealment and blinding were unclear.
bResults were inconsistent among the different studies.
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 27
Table A2: Risk of Bias Among Randomized Controlled Trials for the Comparison of Educational Intervention and Usual Care
Author, Year Allocation Concealment
Blinding Complete Accounting of Patients and Outcome
Events
Selective Reporting Bias
Other Limitations
Pelayo-Alvarez et al, 2013 (14) No limitations Limitationsa No limitations No limitations No limitations
Curtis et al, 2013 (15) Limitationsb No limitations No limitations No limitations Limitationsc
Curtis et al, 2011 (16) Limitationsb Limitationsd No limitations No limitations Limitationsc
Meyers et al, 2011 (17) Limitationsb Limitationsa No limitations No limitations No limitations
Bakitas et al, 2009 (18) Limitationsb Limitationsa No limitations No limitations No limitations
McMillan et al, 2005 (19) Limitationsb Limitationsa No limitations No limitations No limitations
aBlinding unclear. bConcealment unclear. cPotential for non-response/response bias. dNo blinding.
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 28
References
(1) Van MW, Aertgeerts B, De CK, Thoonsen B, Vermandere M, Warmenhoven F, et al. Defining
the palliative care patient: a systematic review. Palliat Med. 2013;27(3):197-208.
(2) Stewart AL, Teno J, Patrick DL, Lynn J. The concept of quality of life of dying persons in the
context of health care. J Pain Symptom Manage. 1999;17(2):93-108.
(3) Report of the 1990 joint committee on health education terminology. J Sch Health.
1991;61(6):251-4.
(4) Green LW, Kreuter MW. Health promotion planning: an educational and ecological approach.
3rd ed. Mountain View (CA): Mayfield Publishing Company; 1999. 621 p.
(5) Review Manager (RevMan) [computer program]. Version 5.0. Copenhagen: The Nordic
Cochrane Centre, The Cochrane Collaboration; 2008.
(6) DerSimonian R, Laird N. Meta-analysis in clinical trials. Control Clin Trials. 1986;7(3):177-88.
(7) Laird NM, Mosteller F. Some statistical methods for combining experimental results. Int J
Technol Assess Health Care. 1990;6(1):5-30.
(8) van Houwelingen HC, Arends LR, Stijnen T. Advanced methods in meta-analysis: multivariate
approach and meta-regression. Stat Med. 2002;21(4):589-624.
(9) Higgins JP, Thompson SG. Quantifying heterogeneity in a meta-analysis. Stat Med.
2002;21(11):1539-58.
(10) Song F, Khan KS, Dinnes J, Sutton AJ. Asymmetric funnel plots and publication bias in meta-
analyses of diagnostic accuracy. Int J Epidemiol. 2002;31(1):88-95.
(11) von EE, Altman DG, Egger M, Pocock SJ, Gotzsche PC, Vandenbroucke JP. The Strengthening
the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for
reporting observational studies. PLoS Med. 2007;4(10):e296.
(12) Guyatt GH, Oxman AD, Schunemann HJ, Tugwell P, Knottnerus A. GRADE guidelines: a new
series of articles in the Journal of Clinical Epidemiology. J Clin Epidemiol. 2011;64(4):380-2.
(13) Goodman C. Literature searching and evidence interpretation for assessing health care practices.
Stockholm, Sweden: Swedish Council on Technology Assessment in Health Care. 1996. 81 p.
SBU Report No. 119E.
(14) Pelayo-Alvarez M, Perez-Hoyos S, Agra-Varela Y. Clinical effectiveness of online training in
palliative care of primary care physicians. J Palliat Med. 2013;16(10):1188-96.
(15) Curtis JR, Back AL, Ford DW, Downey L, Shannon SE, Doorenbos AZ, et al. Effect of
communication skills training for residents and nurse practitioners on quality of communication
with patients with serious illness: a randomized trial. JAMA. 2013;310(21):2271-81.
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 29
(16) Curtis JR, Nielsen EL, Treece PD, Downey L, Dotolo D, Shannon SE, et al. Effect of a quality-
improvement intervention on end-of-life care in the intensive care unit: a randomized trial. Am J
Respir Crit Care Med. 2011;183(3):348-55.
(17) Meyers F, Carducci M, Loscalzo M, Linder J, Greasby T, Beckett L. Effects of a problem-solving
intervention (COPE) on quality of life for patients with advanced cancer on clinical trials and
their caregivers: Simultaneous Care Educational Intervention (SCEI): linking palliation and
clinical trials. J Palliat Med. 2011;14(4):465-73.
(18) Bakitas M, Lyons KD, Hegel MT, Balan S, Brokaw FC, Seville J, et al. Effects of a palliative
care intervention on clinical outcomes in patients with advanced cancer: The project ENABLE II
randomized controlled trial. JAMA. 2009;302(7):741-9.
(19) McMillan SC, Small BJ, Weitzner M, Schonwetter R, Tittle M, Moody L, et al. Impact of coping
skills intervention with family caregivers of hospice patients with cancer: a randomized clinical
trial. Cancer. 2006;106(1):214-22.
Ontario Health Technology Assessment Series; Vol. 14: No. 17, pp. 1–30, December 2014 30
Health Quality Ontario
130 Bloor Street West, 10th Floor
Toronto, Ontario
M5S 1N5
Tel: 416-323-6868
Toll Free: 1-866-623-6868
Fax: 416-323-9261
Email: [email protected]
www.hqontario.ca
ISSN 1915-7398 (online)
ISBN 978-1-4606-4872-8 (PDF)
© Queen’s Printer for Ontario, 2014