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Short report

European palliative care guidelines: how well do they meet the needs of people with impaired cognition? E L Sampson,1,2 J T van der Steen,3 S Pautex,4 P Svartzman,5 V Sacchi,6 L Van den Block,7 N Van Den Noortgate8

For numbered affiliations see end of article. Correspondence to Dr E L Sampson, Division of Psychiatry, Marie Curie Palliative Care Research Department, University College London, 67-71 Riding House Street, London W1W 7EJ, UK; [email protected] Received 30 October 2014 Revised 12 February 2015 Accepted 11 March 2015

To cite: Sampson EL, van der Steen JT, Pautex S, et al. BMJ Supportive & Palliative Care Published Online First: [ please include Day Month Year] doi:10.1136/bmjspcare-2014000813

ABSTRACT Objective Numbers of people dying with cognitive impairment (intellectual disability (ID), dementia or delirium) are increasing. We aimed to examine a range of European national palliative care guidelines to determine if, and how well, pain detection and management for people dying with impaired cognition are covered. Methods Questionnaires were sent to 14 country representatives of the European Pain and Impaired Cognition (PAIC) network who identified key national palliative care guidelines. Data was collected on guideline content: inclusion of advice on pain management, whether cognitively impaired populations were mentioned, assessment tools and management strategies recommended. Quality of guideline development was assessed with the Appraisal of Guidelines Research and Evaluation (AGREE) instrument. Results 11 countries identified palliative care guidelines, 10 of which mentioned pain management in general. Of these, seven mentioned cognitive impairment (3 dementia, 2 ID and 4 delirium). Half of guidelines recommended the use of pain tools for people with cognitive impairment; recommended tools were not all validated for the target populations. Guidelines from the UK, the Netherlands and Finland included most information on pain management and detection in impaired cognition. Guidelines from Iceland, Norway and Spain scored most highly on AGREE rating in terms of developmental quality. Conclusions European national palliative care guidelines may not meet the needs of the growing population of people dying with cognitive impairment. New guidelines should consider suggesting the use of observational pain tools for people with cognitive impairment. Better recognition of their needs in palliative care guidelines may drive improvements in care.

INTRODUCTION Adequate pain control is a vital component of good palliative care. Identifying and managing pain can be challenging in people who have difficulty communicating their needs, for example those with intellectual disability (ID), delirium or dementia. These conditions are common; in Europe it is estimated that 6.3 million people have dementia1 and 4.2 million have ID.1 These are pervasive disorders, but impaired cognition can also be caused by delirium, which fluctuates and occurs in 58–88% of people in the weeks or hours preceding death.2 Pain is common in people with ID and dementia who often have chronic conditions3 4 but it is often underdetected and poorly treated.5 6 This has a profound impact on quality of life, psychosocial and physical functioning6 and quality of dying.7 Our ageing population and the increasing longevity of people with ID means that more people will be dying with impaired cognition and chronic painful conditions.8 9 Detecting pain in people with impaired cognition is challenging. People may be unable to report pain themselves. Observation of behaviour and other parameters, for example decline in function and physiological changes has been recommended,6 however, the use of pain tools needs to be assimilated into every day practice and this can be challenging.10 One method of encouraging implementation is by recommending the use of tools in national palliative care guidelines. We aimed to review whether national palliative care guidelines in Europe consider pain assessment and management for the increasing numbers of adults with ID, dementia, or other forms of cognitive impairment.

Sampson EL, et al. BMJ Supportive & Palliative Care 2015;0:1–5. doi:10.1136/bmjspcare-2014-000813

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Short report Specific objectives were to: 1. Assess whether palliative care guidelines refer to pain management in people with impaired cognition; 2. Describe which cognitively impaired populations are included in the guidelines (ID, dementia, delirium); 3. Describe which pain assessment tools are recommended; 4. Describe any specific pain management recommendations for people with impaired cognition; 5. Assess the quality of guideline development according to standardised criteria; 6. Assess the level of European consensus on the detection and management of pain for people with impaired cognition in national palliative care guidelines.

METHODS The European Union, through their Cooperation in Science and Technology (COST) funding stream, funds: ‘Pain and Impaired Cognition’ (PAIC) which aims to develop and refine existing tools and guidelines (http://www.cost-td1005.net). Countries in the network at the time of the survey (2012–2013) were Belgium, Cyprus, Denmark, France, Germany, Israel, Italy, the Netherlands, Norway, Romania, Spain, Switzerland and UK. We took a pragmatic approach by asking PAIC network members to identify the key/most prominent or widely used guideline in each member country. If a generic palliative care guideline was not available then raters chose the most widely used cancer care guidelines. This method was successfully used in a review of European guidelines for psychosocial interventions in dementia.11 If members of our network were unable to assist or, a country was not involved in the network, we identified leaders in palliative care through the European Association for Palliative Care (EAPC) or through personal contacts. This achieved responses from additional countries (Iceland and Finland). Two members from each country gathered information on guideline content using a data extraction form written specifically for the project. This included items on whether the guideline contained specific reference to pain and in particular people with impaired cognition, whether guidance was given on pain assessment (ie, use of specific pain tools and which were recommended) and whether there were specific recommendations for pain management in this population. Raters achieved consensus on the methodological quality of the guidelines using the Appraisal of Guidelines Research and Evaluation-V.1 (AGREE V.1) score, a standardised tool designed to assess the quality of guideline development.12 The tool and standardised instructions on its use are available in a range of European languages. It examines quality indicators for guideline development with 23 items covering six domains: purpose and scope (8 points maximum), degree of stakeholder involvement (16 points maximum), rigour of development (28 points maximum), clarity and presentation (16 points

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maximum), applicability (12 points maximum) and editorial independence (8 points maximum). Observed scores for each domain were standardised as percentages.12 The AGREE scale shows good psychometric properties with acceptable reliability for most domains (Cronbach’s α 0.64–0.88).12 RESULTS Guideline content

Of the countries contacted, we received 13 replies by the end of 2013 (see table 1). National palliative care guidelines in Germany were ‘work in progress’, ( planned completion late 2014). At the time of the survey, Cyprus did not have national palliative care guidelines. Belgium had palliative care guidelines which did not include pain. No response was received from Denmark or France. Of the 10 which included pain management in general, 7 mentioned cognitive impairment. Four included guidance for patients with delirium, three for people with dementia, two for ID and one for coma/vegetative state. Only 4/11 palliative care guidelines recommended the use of specific pain tools in cognitive impairment (Italy, the Netherlands, Spain, UK); Verbal Rating Scale (VRS), Visual Analogue Scale (VAS), Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC), Pain Assessment In Advanced Dementia scale (PAINAD), Doloplus and Doloplus-2 and the Disability distress assessment tool (DisDAT). Two guidelines referred to other guidelines; “Guideline Dementia and Palliative care for People with Learning Disability” (the Netherlands) and “The Assessment of Pain in Older Adults—National Guidelines” (UK). Only two guidelines (the Netherlands and Finland) made specific recommendations for pain management in people with cognitive impairment. Quality of guideline development on the AGREE scale

Most guidelines gave a clear description of their scope and purpose; scores for this domain ranged from 62.5% to 100% (median 100). The scores for stakeholder involvement were lower ranging from 43.8% to 93.8% (median 75) with two guidelines involving patient views and preferences. The majority of guidelines scored well on the rigour of their development (25–100%, median 75) and were clearly presented (62.5–100%, median 81.3). Editorial independence was harder to assess with four sets of guidelines scoring 50% or less (median 62.5). Overall guidelines from Norway (86.4%) and Iceland (85.2%) scored highest on the AGREE scale. DISCUSSION The palliative care guidelines we assessed did not universally consider the needs of people with cognitive impairment. Delirium was the most commonly mentioned form of cognitive impairment, followed by dementia (3 guidelines), ID (2) and coma or persistent

Sampson EL, et al. BMJ Supportive & Palliative Care 2015;0:1–5. doi:10.1136/bmjspcare-2014-000813

No – – – – – – – –

Does guideline include pain management? Do the guidelines mention cognitive impairment? What types of cognitive impairment are included? Dementia Learning disability Delirium Coma/vegetative state Is there guidance on pain assessment in these groups? Are any particular tools recommended?

Yes Yes No No Yes No No No

Yes No Yes No Yes No

Icelandc

Yes Yes

Finlandb Yes No – No No No No No No

Israeld

No No No No Yes VRS

Yes Yes

Italye

Yes Yes No No Yes GDPCPLD

Yes Yes

The Netherlandsf

No No Yes No No No

Yes No

Norwayg

Yes No No Yes Yes No

Yes Yes

Romaniah

No No No No No PACSLAC Doloplus No

Yes Yes

Spaini

No No No No No No

Yes No

Switzerlandj

No Yes Yes No Yes DisDAT Doloplus 2 Abbey No

Yes Yes

UKk

Guidance provided on pain management in people with – Yes No No No Yes No No No cognitive impairment AGREE rating Scope and purpose (8) 62.5 100 100 75 75 100 100 100 100 75 100 Stakeholder involvement (16) 43.8 75 81.3 81.3 68.8 75 81.3 93.8 56.25 75 81.3 Rigour of development (28) 82.1 78.6 100 67.9 75 75 92.9 60.7 100 75 25 Clarity and presentation (16) 93.8 68.8 100 100 81.3 81.3 81.3 62.5 100 100 81.3 Applicability (12) 18.8 50 41.7 33.3 25 25 66.7 50 50 50 50 Editorial independence (8) 25 75 62.5 100 25 50 100 62.5 100 100 25 Total quality scores 62.5 73.9 85.2 75 63.6 69.3 86.4 69.3 85.3 79.1 55.7 Source a. General guidelines for palliative care from the Federale Palliative Zorg Vlaanderen (Belgium). b. Suomalaisen Lääkäriseuran Duodecimin ja Suomen Palliatiivisen Lääketieteen yhdistyksen asettama työryhmä (Finland). c. Klínískar leiðbeiningar um líknarmeðferð (Clinical guidelines on Palliative Care; Iceland). d. Pain management in patients with cancer pain (Israel). e. Terapia del dolore in oncologia (pain management in oncology; Italy). f. Pijn: Integraal Kankercentrum Nederland (Dutch Cancer Centre Netherlands; the Netherlands). g. Nasjonalt handlingsprogram med retningslinjer for palliasjon i kreftomsorgen (Norway). h. Minimal Standards for Palliative Care in Homes, in Hospitals and Ambulatory System (Romania). i. Guía de Práctica Clínica sobre Cuidados Paliativos (Spain). j. Recommendations sur L’EXACERBATION DOULOUREUSE (Switzerland). k. SIGN Palliative care guidelines 3rd edition (UK). AGREE, Appraisal of Guidelines Research and Evaluation; DisDAT, Disability Distress Assessment Tool; GDPCPLD, Guideline dementia and palliative care for people with learning disability; PACSLAC, Pain Assessment Checklist for Seniors with Limited Ability to Communicate; VRS, Verbal Rating Scale.

Belgiuma

Content with regards to pain detection and management for people with cognitive impairment and quality of development of European palliative care guidelines

Guideline domain

Table 1

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Short report vegetative state (1). Some of the recommended tools were not validated or specifically designed for these cognitively impaired populations. For example only one tool, the DisDAT, was specifically developed for people with ID and this was actually developed for ‘distress’ rather than pain specifically. There was little consensus among the guidelines about which pain tools should be used, despite systematic reviews highlighting which tools have the best psychometric properties, for example, in dementia, Herr et al.13 Given how common delirium is in people who are dying there are few validated pain scales for this population. However, we found that in general, the quality of guideline development was good. We assume that using pain assessment tools will improve end of life care, but, they may also detect other forms of discomfort14 and there are numerous barriers to the implementation and use of these scales in usual practice10 and clinicians may be confused by contradictory recommendations in guidelines. Strengths and limitations

This study was not intended to be a full systematic or exhaustive review of palliative care guidelines. We took a pragmatic approach asking participants to choose the most widely used guideline in their country; it may be challenging to identify national guidelines using a ‘traditional’ systematic review approach as many are not published in the scientific literature. These results are indicative and a more comprehensive survey would be required to make definitive conclusions about how well the pain management needs of people with cognitive impairment are considered. In addition, pain management could be examined from the contrasting perspective of national dementia care guidelines. There may be many more local guidelines in use which we have not assessed. It is a strength that we did not limit this review of guidelines to those translated into English and we used extensive research and personal networks and contact through pan-European organisation (EAPC) to identify guidelines for review. It is challenging to standardise quality ratings across different countries but the AGREE guidelines are simple with instruction manuals and assessment forms translated into most European languages. The quality scores of palliative care guidelines are similar in range to those found in other reviews suggesting our raters interpreted their use correctly.11

EAPC who have recently published a White paper on dementia, have a role in promoting the needs of these vulnerable patients.15 Author affiliations 1 Division of Psychiatry, Marie Curie Palliative Care Research Department, University College London, London, UK 2 Liaison Psychiatry, North Middlesex University Hospital, Barnet Enfield and Haringey Mental Health Trust, London, UK 3 Department of General Practice & Elderly Care Medicine, VU University Medical Center, EMGO Institute for Health and Care Research, Amsterdam, The Netherlands 4 Department of Community Medicine, Primary Care and Emergency Medicine, Geneva University Hospitals and University of Geneva, Switzerland 5 Family Medicine Department, Ben-Gurion University of the Negev, Beersheba, Israel 6 Peter Hodgkinson Centre, Lincoln County Hospital, Lincoln, UK 7 Department of Family Medicine and Chronic Care, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB), Brussels, Belgium 8 Department of Geriatric Medicine, Ghent University, Ghent, Belgium Acknowledgements The authors acknowledge Dr Jovita Lewis who assisted with the initial data collection. They would like to thank other members of the COST action who translated and rated their country’s guidelines or provided translation expertise; Dr Anne-Nora Mergam, Anna-Maria Hartikainen, Dr Valgerdur Sigurdardottir, Dr Inge van Mansom and Dr Maartje Klapwijk; Dr Ragnhild Helgesen, Dr Magdalena Budisteanu and Dr Daniela Mosoiu; Dr Lourdes Rexach Cano and Professors Stefan Lautenbacher and Wilco Achterberg who chair and co-chair the COST action. Contributors ELS developed the original study idea, wrote the protocol, collated study data and drafted the final manuscript. JTvdS, NVDN, LVdB, SP, PS and VS, commented on the study protocol, collated study data, assisted with translation and revised the final manuscript. ELS is the guarantor of the manuscript. Funding This work was supported by the European Union Cooperation in Science and Technology (COST) Action, TD-1005. ELS’s post is supported by Marie Curie Cancer Care programme grant funding [MCCC-FPR-11-U]. Competing interests None. Provenance and peer review Not commissioned; externally peer reviewed.

REFERENCES Clinical and policy implications

Good pain assessment and management are vital components of palliative care. In future, given increasing numbers of people will be dying with some form of cognitive impairment, it is vital that palliative care guidelines consider the needs of this growing population; this study provides a baseline for assessing changes in this. Patient advocacy groups for those with ID and dementia, and organisations such as the 4

1 Wittchen HU, Jacobi F, Rehm J, et al. The size and burden of mental disorders and other disorders of the brain in Europe 2010. Eur Neuropsychopharmacol 2011;21:655–79. 2 Hosie A, Davidson PM, Agar M, et al. Delirium prevalence, incidence, and implications for screening in specialist palliative care inpatient settings: a systematic review. Palliat Med 2013;27:486–98. 3 Zwakhalen SM, Koopmans RT, Geels PJ, et al. The prevalence of pain in nursing home residents with dementia measured using an observational pain scale. Eur J Pain 2009;13:89–93.

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Short report 4 Janicki MP, Davidson PW, Henderson CM, et al. Health characteristics and health services utilization in older adults with intellectual disability living in community residences. J Intellect Disabil Res 2002;46(Pt 4):287–98. 5 McGuire BE, Daly P, Smyth F. Chronic pain in people with an intellectual disability: under-recognised and under-treated? J Intellect Disabil Res 2010;54:240–5. 6 Scherder E, Herr K, Pickering G, et al. Pain in dementia. Pain 2009;145:276–8. 7 Shega JW, Hougham GW, Stocking CB, et al. Patients dying with dementia: experience at the end of life and impact of hospice care. J Pain Symptom Manage 2008;35: 499–507. 8 Brayne C, Gao L, Dewey M, et al. Dementia before death in ageing societies—the promise of prevention and the reality. PLoS Med 2006;3:e397. 9 Patja K, Livanainen M, Vesala H, et al. Life expectancy of people with intellectual disability: a 35-year follow-up study. J Intellect Disabil Res 2000;44(Pt 5):591–9. 10 Zwakhalen SM, van’t Hof CE, Hamers JP. Systematic pain assessment using an observational scale in nursing home

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residents with dementia: exploring feasibility and applied interventions. J Clin Nurs 2012;21:3009–17. Vasse E, Vernooij-Dassen M, Cantegreil I, et al. Guidelines for psychosocial interventions in dementia care: a European survey and comparison. Int J Geriatr Psychiatry 2012;27:40–8. AGREE Collaboration. Development and validation of an international appraisal instrument for assessing the quality of clinical practice guidelines: the AGREE project. Qual Saf Health Care 2003;12:18–23. Herr K, Bursch H, Ersek M, et al. Use of pain-behavioral assessment tools in the nursing home: expert consensus recommendations for practice. J Gerontol Nurs 2010;36:18–29. Jordan A, Regnard C, O’Brien J, et al. Pain and distress in advanced dementia: choosing the right tools for the job. Palliat Med 2012;26:873–8. van der Steen JT, Radbruch L, Hertogh CM, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med 2014;28:197–209.

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European palliative care guidelines: how well do they meet the needs of people with impaired cognition? E L Sampson, J T van der Steen, S Pautex, P Svartzman, V Sacchi, L Van den Block and N Van Den Noortgate BMJ Support Palliat Care published online April 13, 2015

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References

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European palliative care guidelines: how well do they meet the needs of people with impaired cognition?

Numbers of people dying with cognitive impairment (intellectual disability (ID), dementia or delirium) are increasing. We aimed to examine a range of ...
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