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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

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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.

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The Ontario Health Technology Assessment Series is currently indexed in MEDLINE/PubMed, Excerpta

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All reports in the Ontario Health Technology Assessment Series are subject to external expert peer review.

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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.

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cost-effectiveness of health interventions in Ontario.

Based on the evidence provided by Evidence Development and Standards and its partners, the Ontario Health

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of Health and Long-Term Care, clinicians, health system leaders, and policymakers.

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About the Ontario Health Technology Assessment Series

To conduct its comprehensive analyses, Evidence Development and Standards and its research partners review the

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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

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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

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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

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List of Abbreviations

EoL End of life

GRADE Grading of Recommendations Assessment, Development, and Evaluation

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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.

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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

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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.

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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.

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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.

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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

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