A systematic review for palliative care clinical indicators for pain
Final report
Acknowledgements
The Systematic Review of Palliative Care Clinical Indicators for Pain project was funded by the Victorian Department of Health to support the work of the Palliative Care Clinical Network.
The project team acknowledges the assistance of CareSearch in conducting the literature review.
We also thank UltraFeedback for their pro bono support in developing and hosting the web survey.
The project team would like to express its appreciation to the project advisory committee for their guidance and support. The project team is also grateful to those who contributed greatly to this project by participating in interviews and the online survey. Successful completion of this project would not be possible without their kind support.
Contents
......
List of tables......
List of figures......
Executive summary......
Phased introduction of indicators according to site-specific capacity......
Introduction......
Background......
Project objectives......
Project scope......
1. Methodology......
1.1 Literature review......
What......
Why......
How......
1.2 Expert panel......
1.2.1 Round 1 – appropriateness voting......
1.2.2 Round 2 – necessity voting......
1.2.3 Result validating......
1.3 In-depth interview and survey......
1.3.1 Survey design......
1.3.2 Data analysis......
2. Results and discussion......
2.1 Literature review result......
Figure 1: Indicators by type......
Figure 2: Indicators by setting......
Figure 3: Indicators by detail level......
2.2 Expert panel result......
2.2.1 Outcomes from round 1 – appropriateness......
Table 1: List of agreed indicators from round 1......
Table 2: List of changes to indicators from round 1......
Table 3: List of indicators complied with the relaxed rule from round 1......
Table 4: List of highly discordant indicators from round 1......
Table 5: List of indeterminate indicators from round 1......
Outcomes from round 2 – necessity......
Table 6: List of agreed indicators from round 2......
Table 7: List of changes to indicators from round 2......
Table 8: List of indicators complied with the relaxed rule from round 2......
2.2.2 Validating voting results......
2.2.3 Result and discussion......
2.3 Survey result......
2.3.1 Respondent profile......
Figure 4: Service types of respondents......
Figure 5: Service delivery areas of respondents......
Figure 6: Health regions of respondents......
Figure 7: Staff numbers of respondents......
2.3.2 Tools and quality improvement initiatives in use......
Figure 8: Tools and quality programs in use by respondents......
2.3.3 Data entry......
Table 9: Discipline......
2.3.4 Top benefits and barriers......
Table 10: Top three benefits and barriers......
2.3.5 Cluster analysis result......
Figure 9: Perception profiles of respondent groups......
Figure 10: Perception profiles of respondent groups – radar......
Table 11: Group vs service type......
Figure 11: Distribution of groups by service type......
Table 12: Group vs region......
Figure 12: Distribution of groups by departmental region......
Table 13: Group vs service delivery areas......
Figure 13: Service delivery areas of groups......
Table 14: Group vs staff number......
Figure 14: Distribution of Groups by staff numbers......
Table 15: Group vs usage time of quality improvement projects......
Figure 15: PCOC participation time in groups......
Table 16: Group vs usage time of LCP......
Figure 16: LCP participation time of groups......
Table 17: Group vs usage time of assessment tools......
Figure 17: Assessment tools using time of groups......
3. Recommendations......
3.1 General recommendations......
3.1.1 Minimum requirement......
3.1.2 Individual organisation......
Figure 18: Factors and stages of implementation for individual organisations......
Table 18: Indicative coordination time for the three phases......
Table 19: Breakdown of indicative time requirement......
3.1.3 Statewide implementation......
Figure 19: Stages of implementation for organisational level and network level......
Table 20: Breakdown of indicative time requirement of network coordination......
3.2 Recommended solutions to barriers......
3.2.1 General resource issues......
3.2.2 Lack of IT support......
3.2.3 Low awareness within an organisation......
3.2.4. Leads to extra work for staff......
3.2.5 Lack of ongoing funding to support data entry......
3.2.6 Lack of staff with the appropriate skills......
3.2.7 Lack of support from staff......
3.2.8 Lack of support from management......
3.2.9 Low priority within our organisation......
3.2.10 Not related to patient care......
3.3 Suggestions for services within each group characterised in the survey......
3.3.1 General suggestions......
3.3.2 The enthusiast group......
3.3.3 The conservative group......
3.3.4 The cautious group......
Appendix 1: Databases searched......
Appendix 2: Terms used for literature search and results......
Table A1: Search strategy applied to all databases......
Table A2: The PubMed search strategy incorporating the CareSearch palliative care filter...
Appendix 3: Candidate indicators for expert panel......
Appendix 4: Survey content......
Your service......
Clinical tools used......
Details on PCOC usage......
Details on ESAS usage......
Details on LCP usage......
Details on MEOLCP usage......
Details on RUG-ADL usage......
Details on Karnofsky usage......
Details on ECOG usage......
Details on BPI usage......
Details on other tool usage......
Details on other tool usage no. 2......
Appendix 5: Data specification for clinical indicators for pain......
Definitions and benchmarks of recommended indicators......
Use of a validated pain scale......
Assessing pain for a new patient......
Regular pain assessment......
Providing a bowel regimen with an opioid......
Prescribing for breakthrough pain......
Scheduled pain medication for severe pain......
Data elements required for each indicator......
Data elements definition......
References......
List of tables
Table 1: List of agreed indicators from round 112
Table 2: List of changes to indicators from round 113
Table 3: List of indicators complied with the relaxed rule from round 113
Table 4: List of highly discordant indicators from round 114
Table 5: List of indeterminate indicators from round 114
Table 6: List of agreed indicators from round 215
Table 7: List of changes to indicators from round 215
Table 8: List of indicators complied with the relaxed rule from round 216
Table 9: Discipline20
Table 10: Top three benefits and barriers21
Table 11: Group vs service type24
Table 12: Group vs region25
Table 13: Group vs service delivery areas26
Table 14: Group vs staff number27
Table 15: Group vs usage time of quality improvement projects 28
Table 16: Group vs usage time of LCP 29
Table 17: Group vs usage time of assessment tools30
Table 18: Indicative coordination time for the three phases34
Table 19: Breakdown of indicative time requirement 35
Table 20: Breakdown of indicative time requirement of network coordination 37
List of figures
Figure 1: Indicators by type10
Figure 2: Indicators by setting11
Figure 3: Indicators by detail level11
Figure 4: Service types of respondents 18
Figure 5: Service delivery areas of respondents18
Figure 6: Health regions of respondents19
Figure 7: Staff numbers of respondents19
Figure 8: Tools and quality programs in use by respondents20
Figure 9: Perception profiles of respondent groups23
Figure 10: Perception profiles of respondent groups – radar23
Figure 11: Distribution of groups by service type24
Figure 12: Distribution of groups by departmental region25
Figure 13: Service delivery areas of groups26
Figure 14: Distribution of Groups by staff numbers27
Figure 15: PCOC participation time in groups28
Figure 16: LCP participation time of groups29
Figure 17: Assessment tools using time of groups30
Figure 18: Factors and stages of implementation for individual organisations32
Figure 19: Stages of implementation for organisational level and network level35
Executive summary
This project is one of four initial projects undertaken on behalf of the Palliative Care Clinical Network (PCCN) to address a key priority area of Victorian palliative care strategic directions 2011–2015 (Department of Health 2011), namely ‘Providing quality care supported by evidence’.
This project has three main objectives. The first is to undertake a review of the evidence base for clinical indicators for pain in palliative care practice. The second is to recommend a group of clinical indicators for pain to the PCCN, for statewide implementation. The third and major part of the project is to develop a business case for organisations to use in adopting these indicators into their organisational operational plans.
A comprehensive literature review was conducted and an expert panel established to determine candidate clinical indicators to recommend. An important factor to note is that a Cochrane-style systematic review was not within the remit of this project. A survey was conducted to determine major perceived barriers and benefits to implementing these indicators. Service providers’ attitudes towards quality improvement programs were also assessed via the online survey.
The literature review used a broad search strategy provided by CareSearch. Seventy-four references were identified from several major health databases, including Medline (1950–2010) and Embase (1980–2010). An additional 22 references were identified through reference tracking. From these references, together with guidelines and policies published by government departments and Australian and international organisations, the researchers identified 113 clinical indicators for pain, which fall into four major categories: outcome, structure, process and symptom. This project focused on process indicators for clinical-level quality improvement to complement and avoid duplication with national projects such as the Palliative Care Outcomes Collaboration. From these, 29 indicators were chosen by the project team for consideration by a seven-member expert panel with backgrounds in medical, nursing and management, and derived mostly from the Victorian palliative care sector.
The expert panel followed a modified RAND/UCLA Appropriateness Method approach to achieve a final set of indicators, rating the 29 indicators on the following criteria: appropriateness (assessing validity, feasibility and generalisability) and necessity (in terms of being fundamental to care and consistent with quality of care). An independent shadow rater with both a management and nursing background validated the expert panel’s results. The resultant six indicators recommended for implementation by the Victorian Department of Health through the PCCN were pertinent to two areas of pain management, namely pain assessment and analgesic prescribing.
The recommended indicators are as follows:
•pain assessment indicators
–use of a validated pain scale
–assessing pain for a new patient
–regular pain assessment
•analgesic prescribing indicators
–prescribing for breakthrough pain
–scheduled pain medication for severe pain
–providing a bowel regimen with an opioid.
The online survey items were developed in conjunction with the concurrent PCCN assessment tools project and were based on interviews with five palliative care managers and the research team. The survey included items about current use of tools and participation in quality improvement projects, and asked about barriers, benefits and attitudes towards clinical tools and quality improvement projects in use. Respondents were asked to rate their level of agreement with the questionnaire items about specific barriers and benefits using a five-point Likert scale. The survey was sent to 60 service providers, 38 of whom (63 per cent) responded. Responding services represented the range of Victorian palliative care service providers when compared with the Palliative care service delivery framework (SDF) (Aspex Consulting 2010). Compared with SDF, community services were more highly represented in survey respondents while consultancy and inpatient services were less represented. No publicly funded day hospice responded to the survey. Survey respondents’ service delivery areas and regions are distributed similarly to the SDF mapping.
The analysis of the survey data revealed that the main benefits of quality improvement projects perceived by service providers were that they enable benchmarking, demonstrate care practices and upskill staff. The main perceived barriers were that they lead to extra work for staff, and that there is a lack of IT support and a lack of ongoing funds to support data entry.
Three different types of services were identified through cluster analysis of all perceptions and attitudes. They were named as enthusiast, conservative and cautious according to their characteristics. Locality, service type, service area and organisation size did not seem to have a very strong influence or correlation on perceptions. There was a pattern that those groups participating in most quality improvement projects had been using quality projects or assessment tools for a longer time than those less actively participating.
To help Victorian palliative care service providers to implement the recommended clinical indicators, stages are identified for both individual organisations and the statewide network. For an individual organisation, the recommended stages are: the pilot stage, the integration stage and the continuous improvement stage. Organisational change, culture building for quality improvement, education and communication are considered key factors throughout all stages. For the statewide network, the stages are referred to as: the modelling stage, the expanding stage and the collective improvement stage.
Phased introduction of indicators according to site-specific capacity
Members of the so-called enthusiast group would be well placed to act as models for other services in the modelling stage of statewide implementation. Organisations of the so-called conservative group will likely be ready to participate in quality improvement implementation in the expanding stage of implementation. Introducing validated pain tools into routine clinical care rather than undertaking to implement the recommended indicators is considered more suitable initially for the cautious group, with the purpose of increasing awareness and willingness to participate and graduated introduction. A detailed process and methodology are suggested for implementation in all settings, along with brief solutions against each barrier.
The project team recommended the following as minimum requirements to introduce the recommended indicators:
•a validated tool for pain assessment to be adopted by each palliative care provider
•documentation of the required elements for the recommended indicators in a precise and timely way that facilitates quality improvement
•demonstration project(s) in typical palliative care settings to establish initial benchmarks and to showcase improvements in the quality of care for patients by implementing the recommended indicators.
It is recommended that the PCCN facilitate and support the coordination of the demonstration project(s) for the modelling stage of statewide implementation.
Introduction
Background
As part of its strategic approach to addressing the goals of the national strategy, the Victorian Department of Health allocated funding to uncover areas of deficit of care in the Victorian palliative care sector, and to develop strategies and identify aids that may contribute to realising the national goals.
The Palliative Care Clinical Network (PCCN) was established by the Department of Health’s Palliative Care team to oversee the clinical elements and implementation of:
•Strengthening palliative care: Policy and strategic directions 2011–2015 (Department of Health 2011)
•a service delivery framework and service capability framework
•the Clinical Service Improvement program.
In an evaluation of the 2004–09 palliative care policy’s implementation, there were several recommendations about the key strategic priorities to be addressed for 2011–15. This project arises from the recommendation ‘Establish a PCCN and a statewide program for the uptake of evidence into clinical practice’ under strategic direction 6 of the policy ‘Quality care at all times’.
Project objectives
This project has three components. The first is to undertake a review of the evidence base for clinical indicators for pain in palliative care practice. The background review includes published guidelines and other key documents summarising expert opinion and recommended best practice, recognising that the evidence base for such indicators remains weak.
The second component of the project is to recommend a group of clinical indicators for pain to the PCCN, for statewide implementation.
The third and major part of the project is to develop a business case for organisations to use in adopting these indicators into their organisational operational plans. This component of the project focused on how the recommended indicators will become part of the quality framework for palliative care organisations across Victoria. The implementation of these indicators was tailored to different levels of palliative care service delivery, in keeping with the service delivery framework and service capability framework. Through establishing statewide clinical indicators for pain in palliative care practice, services will be supported in delivering the highest quality care for their patients.
Project scope
The project included a review of existing literature and quality improvement projects in Australia and internationally. The project did not include a Cochrane-style systematic review.
The project recognised the quality improvement projects currently underway in Australia, including The National Standards Assessment Program (NSAP), Palliative Care Outcomes Collaboration (PCOC), Australian and New Zealand Society of Palliative Medicine (ANZSPM), CareSearch and the National Pain Summit’s Pain and Palliative Care Working Group, and will draw from and align with the outcomes and recommendations of these projects wherever possible.
The project aimed to provide Victorian palliative care organisations with a methodology by which the recommended indicators might be integrated into their existing quality improvement programs. It recognised that many organisations in Victoria currently participate in PCOC, NSAP and other relevant quality improvement programs and that the recommendations of this project need to be sensitive to and support previous commitment to quality improvement.
A business case was developed that will assist organisations to implement and evaluate the impact of introduction of the recommended indicators into their quality improvement activities.
The project recommended to the department a frequency of reporting of data and methodology for benchmarking pain clinical indicators, working closely with departmental data analyst for palliative care. It also developed guideline(s) and requirement(s) to help organisations assess and collect clinical indicator data, as well as guideline(s) and requirement(s) for developing educational information about indicators and relative data collection tools.
The project did not include implementing or piloting the tools in any palliative care setting, nor did it develop a database for organisations to collect the data. In recognition that the science of implementing medical knowledge and quality improvement is in its infancy, this project did not include research into the outcomes of implementing the recommended pain clinical indicators.
1. Methodology
1.1 Literature review
A comprehensive literature review was conducted to identify current data collection and indicator use by Australian and international services. The literature review included a review of academic literature, including unpublished articles and conference abstracts, and grey literature, including reports and guidelines from service providers, governments and professional associations.