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Headline
Existing pain assessment tools for patients with dementia are not appropriate for use in hospital; we need new approaches which improve pain communication and management among patients, carers and staff.
Abstract
Background:
Pain and dementia are common in older people, and impaired cognitive abilities make it difficult for them to communicate their pain. Pain, if poorly managed, impairs health and well-being. Accurate pain assessment in this vulnerable group is challenging for hospital staff, but essential for appropriate management. Robust methods for identifying, assessing and managing pain are needed.
Aims and objectives:
Two studies were undertaken to inform the development of a decision support tool to aid hospital staff in the recognition, assessment and management of pain. The first was a meta-review of systematic reviews of observational pain assessment instruments with three objectives: (1) to identify the tools available to assess pain in adults with dementia; (2) to identify in which settings they were used and with what patient populations; and (3) to assess their reliability, validity and clinical utility. The second was a multisite observational study in hospitals with four objectives: (1) to identify information currently used by clinicians when detecting and managing pain in patients with dementia; (2) to explore existing processes for detecting and managing pain in these patients; (3) to identify the role (actual/potential) of carers in this process; and (4) to explore the organisational context in which health professionals operate. Findings also informed development of health economics data collection forms to evaluate the implementation of a new decision support intervention in hospitals.
Methods:
For the meta-review of systematic reviews, 12 databases were searched. Reviews of observational pain assessment instruments that provided psychometric data were included. Papers were quality assessed and data combined using narrative synthesis. The observational study used an ethnographic approach in 11 wards in four UK hospitals. This included non-participant observation of 31 patients, audits of patient records, semistructured interviews with 52 staff and four carers, informal conversations with staff and carers and analysis of ward documents and policies. Thematic analysis of the data was undertaken by the project team.
Results:
Data from eight systematic reviews including 28 tools were included in the meta-review. Most tools showed moderate to good reliability, but information about validity, feasibility and clinical utility was scarce. The observational study showed complex ward cultures and routines, with variations in time spent with patients, communication patterns and management practices. Carer involvement was rare. No pain decision support tools were observed in practice. Information about pain was elicited in different ways, at different times, by different health-care staff and recorded in separate documents. Individual staff made sense of patients’ pain by creating their own ‘overall picture’ from available information.
Limitations:
Grey literature and non-English-language papers were excluded from the meta-review. Sample sizes in the observational study were smaller than planned owing to poor documentation of patients’ dementia diagnoses, gatekeeping by staff and difficulties in gaining consent/assent. Many patients had no or geographically distant carers, or a spouse who was too unwell and/or reluctant to participate.
Conclusions:
No single observational pain scale was clearly superior to any other. The traditional linear concept of pain being assessed, treated and reassessed by single individuals did not ‘fit’ with clinical reality. A new approach enabling effective communication among patients, carers and staff, centralised recording of pain-related information, and an extended range of pain management interventions is proposed [Pain And Dementia Decision Support (PADDS)]. This was not tested with users, but a follow-on study aims to codesign PADDS with carers and clinicians, then introduce education on staff/patient/carer communications and use of PADDS within a structured implementation plan. PADDS will need to be tested in differing ward contexts.
Funding:
The National Institute for Health Research Health Services and Delivery Research programme.
Contents
- Plain English summary
- Scientific summary
- Chapter 1. Background
- Dementia and pain are common and poorly managed
- The policy context
- The impact of dementia on the experience and expression of pain
- Pain in hospital patients with dementia
- The assessment of pain for people with dementia
- Dementia, pain and decision-making
- Aims and objectives
- Development of intervention and follow-on study: health economics and technical specifications
- Study Steering Committee project oversight
- Summary
- Structure of the report
- Chapter 2. Patient and public involvement
- Chapter 3. Meta-review: methods
- Chapter 4. Meta-review: results
- Chapter 5. Observational study: methods
- Chapter 6. Observational study: findings
- Chapter 7. Foundations for the development of the decision support tool
- Chapter 8. Health economics
- Chapter 9. Discussion, conclusions and a way forward
- Acknowledgements
- References
- Appendix 1. Literature search strategy
- Appendix 2. Included and excluded reviews
- Appendix 3. Systematic review methods: additional files
- Appendix 4. Observational study data collection/research instruments
- Appendix 5. Feedback to participants
- Appendix 6. The Pain And Dementia Decision Support system: functional requirements specifications
- Appendix 7. Health economics data collection forms
- List of abbreviations
About the Series
Article history
The research reported in this issue of the journal was funded by the HS&DR programme or one of its preceding programmes as project number 11/2000/05. The contractual start date was in October 2012. The final report began editorial review in October 2015 and was accepted for publication in March 2016. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.
Declared competing interests of authors
Claire Hulme is a member of the National Institute for Health Research Health Technology Assessment Commissioning Board.
Last reviewed: October 2015; Accepted: March 2016.
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