Assessing Palliative Care Content in Dementia Care Guidelines A Systematic Review Accepted Manuscript Assessing Palliative Care Content in Dementia Care Guidelines A Systematic Review Pamela Durepos,[.]
Accepted Manuscript Assessing Palliative Care Content in Dementia Care Guidelines: A Systematic Review Pamela Durepos, RN, MSc, Abigail Wickson-Griffiths, RN, PhD, Afeez Abiola Hazzan, PhD, Sharon Kaasalainen, RN, PhD, Vasilia Vastis, MB, BCh, BAO, Lisa Battistella, MLIS, Alexandra Papaioannou, MD, FRCPC, FACP PII: S0885-3924(16)31210-6 DOI: 10.1016/j.jpainsymman.2016.10.368 Reference: JPS 9325 To appear in: Journal of Pain and Symptom Management Received Date: August 2016 Revised Date: 18 October 2016 Accepted Date: 30 October 2016 Please cite this article as: Durepos P, Wickson-Griffiths A, Hazzan AA, Kaasalainen S, Vastis V, Battistella L, Papaioannou A, Assessing Palliative Care Content in Dementia Care Guidelines: A Systematic Review, Journal of Pain and Symptom Management (2017), doi: 10.1016/ j.jpainsymman.2016.10.368 This is a PDF file of an unedited manuscript that has been accepted for publication As a service to our customers we are providing this early version of the manuscript The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain ACCEPTED MANUSCRIPT PALLIATIVE CONTENT IN DEMENTIA GUIDELINES Review Article 16-00499R1 RI PT Assessing Palliative Care Content in Dementia Care Guidelines: A Systematic Review Pamela Durepos, RN, MSc1; Abigail Wickson-Griffiths, RN, PhD2,; Afeez Abiola Hazzan, PhD3; Sharon, Kaasalainen, RN, PhD1; Vasilia Vastis, MB, BCh, BAO4, Lisa Battistella, MLIS5, Alexandra Papaioannou, MD, FRCPC, FACP6 School of Nursing, McMaster University, Hamilton, Canada; 2Faculty of Nursing, University of Regina, Regina, Canada; 3Summerset Analytics, Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Canada; 4School of Nursing, McMaster University, Hamilton, Canada; 5Royal College of Surgeons, Dublin, Ireland; 6Hamilton Health Sciences, Hamilton, Canada; 7Geriatric Education and Research in Aging Sciences (GERAS) Centre at McMaster University and Hamilton Health Sciences / St Peter’s Hospital, Hamilton, Canada M AN U SC Abbreviated title: Palliative Content in Dementia Guidelines palliative care, dementia, Alzheimer’s, guidelines, systematic review TE D Key words: Word count: 4030 Re-Submitted to the Journal of Pain and Symptom Management, October 17, 2016 EP Please address all correspondence to the first author at: AC C Pamela Durepos Faculty of Health Sciences, 3N25F McMaster University 1280 Main Street West Hamilton, ON L8S 4K1 Phone: (289) 895-8945 Fax: (905) 524-5199 Email: lapospm@mcmaster.ca Version 2: Oct 17, 2016 ACCEPTED MANUSCRIPT PALLIATIVE CONTENT IN DEMENTIA GUIDELINES Abstract Context: RI PT Families of persons with dementia continue to report unmet needs during end-of-life Strategies to improve care and quality of life for persons with dementia include development of clinical practice guidelines (CPG) and an integrative palliative approach SC Objectives: We aimed to assess palliative care content in dementia CPGs in order to identify the presence or M AN U limitations of recommendations and discussion pertaining to common issues or domains affected by illness as described by the Canadian Hospice Palliative Care ‘Square of Care’ Design: A systematic review of databases and grey literature was conducted for recent CPGs TE D Guidelines meeting inclusion criteria were evaluated using the Appraisal of Guidelines Research and Evaluation II (AGREE-II) instrument Quality CPGs were analyzed through organizational template analysis using illness domains described by the ‘Canadian Hospice Palliative Care Results: EP Association Model’ The study protocol is registered at PROSPERO (CRD 42015025369) AC C Eleven CPGs were selected and analyzed from 3779 citations Nine guidelines demonstrated the maximum level of content regarding physical, psychological and social care Conversely, spiritual care was either absent (three) or minimal (three) in CPGs Six CPGs did not address loss or grief and seven CPGs did not address or had minimal content regarding end-of-life (EOL) care Conclusions: Version 2: Oct 17, 2016 ACCEPTED MANUSCRIPT PALLIATIVE CONTENT IN DEMENTIA GUIDELINES The lack of content surrounding grief represents a gap for this population at high-risk for complicated grief and chronic sorrow Results of this review require attention by CPG spiritual care, EOL and grief AC C EP TE D M AN U SC Accepted for publication: October 30, 2016 RI PT developers and researchers to development of evidence-based recommendations surrounding Version 2: Oct 17, 2016 ACCEPTED MANUSCRIPT PALLIATIVE CONTENT IN DEMENTIA GUIDELINES Introduction Dementia is a progressive syndrome commonly related to chronic RI PT neurodegenerative, life-limiting diseases such as Alzheimer’s [1] Prevalence is increasing and it is estimated that 46.8 million people are living with dementia worldwide This number will rise to 74.7 million by 2030 and reaching 131.5 million by 2050 [2] SC Dementia is characterized by an uncertain journey of cognitive and functional decline distinct from other diseases Physical, psychological and behavioural symptoms increase M AN U during the advanced stages of dementia and can negatively influence family and patient experiences during end-of-life (EOL) [3] Palliative care aims reduce and prevent suffering thereby improving quality of life [4] Although traditionally provided during EOL, persons and families coping with chronic diseases such as dementia can receive comfort and support, smoother transitions between TE D levels of care and improved quality of life from early introduction of palliative care interventions [3] Dementia is difficult to prognosticate which creates a barrier to the EP traditional provision and coordination of palliative care services at EOL [1, 3] Dementia is also under-recognized as chronic or terminal illness, which may diminish health care AC C providers decision to provide or promote palliative care interventions [1] The concept of a palliative approach to care describes an integrative model, which can guide the care of persons at any stage of chronic illness, dispelling the myth that palliative care is only for EOL [5, 6] A palliative approach to care integrates key elements of palliative care including: open communication regarding illness prognosis and trajectory; advance care planning; psychosocial and spiritual support; and pain or symptom Version 2: Oct 17, 2016 ACCEPTED MANUSCRIPT PALLIATIVE CONTENT IN DEMENTIA GUIDELINES management, with the usual care persons are receiving across settings at all time-points of illness [5] The national framework ‘The Way Forward’ developed by the Canadian RI PT Hospice Palliative Care Association (CHPCA) in collaboration with the End-of-Life Care Coalition of Canada and the Government of Canada delineates strategies to integrate a palliative approach into all health care services and settings [5] In combination with an SC integrative approach, the CHPCA ‘Square of Care Model to Guide Palliative Care’ asks clinicians to assess, manage and plan for eight domains of issues: disease management, M AN U physical, social, practical, psychological, spiritual, EOL and grief or loss needs through all stages of illness [6] For persons with dementia whom can experience lengthy, debilitating symptoms in conjunction with comorbidities, an integrative palliative approach comprises one strategy to improve quality of life and death [5, 6] Clinical practice guidelines (CPGs) comprise another strategy to improve quality TE D and consistency of care by summarizing and presenting evidence-informed recommendations for clinicians [7] While consensus is building amongst experts that EP palliative care is essential for persons with dementia, it is unclear if palliative care content is integrated in current CPGs for management of dementia Furthermore, while CPGs AC C exclusive to EOL or palliative care offer valuable recommendations for persons with dementia, clinicians may not refer to these guidelines until death is imminent, negating the needs of patients throughout the disease trajectory The objective of this systematic review therefore is to assess and quantify the palliative care content within current international dementia care guidelines to increase awareness within clinicians and identify potential need for revision Limitations in content may identify research priorities for evidence-based interventions Version 2: Oct 17, 2016 ACCEPTED MANUSCRIPT PALLIATIVE CONTENT IN DEMENTIA GUIDELINES Methods Search Strategy and Selection Criteria RI PT The procedure for this review was informed by the Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA) standards as well as previous systematic reviews of CPGs [8-10] The protocol for this systematic review is registered on SC PROSPERO (CRD 42015025369) An systematic literature search guided by evidencedbased search strategies was conducted in May 2015 by a master’s prepared librarian for M AN U CPGs describing the management of dementia in four databases including: CINAHL, EMBASE, Medline and PsychInfo using comprehensive search terms such as “dementia” or “Alzheimer’s disease” and “practice guideline” or “clinical protocol” or “consensus development” or “practice guideline” [11] Full search terms are included with the study protocol Inclusion criteria of guidelines consisted of: Treatment/management for: Alzheimer’s disease, Fronto-temporal, TE D Vascular, or Lewy Body dementia Published or updated, in whole or in part in 2008 or later Multifaceted practice recommendations Affiliation with a professional society, government or non-government AC C EP organization, or association Method of systematic development described Alternatively guidelines were excluded due to following criteria: Treatment/management for: Mild Cognitive impairment, Korsakoff’s, Human immunodeficiency virus (HIV) dementia, intellectual disability or Creutzeldt-Jakob’s dementia Version 2: Oct 17, 2016 ACCEPTED MANUSCRIPT PALLIATIVE CONTENT IN DEMENTIA GUIDELINES Published prior to 2008 without update Exclusive recommendations regarding one practice or symptom (e.g RI PT behaviours, palliation, pain, diagnosis) Exclusive recommendations for a single discipline (e.g nursing) Guideline was not associated with a professional, national/governmental SC organization, society or association Method of recommendation development (including literature review) was M AN U not described The literature search was limited to articles published in English between 2008 and May 2015 to capture CPGs currently in use Broad management guidelines as opposed to specialized CPGs for topics such as pain, palliative care, or medications were selected for review to permit assessment of palliative care content integrated within general guidelines TE D The majority of organization CPG development manuals cite a time frame of between two and five years for revision [12] For CPGs classified as an update of a previous version, the EP original guideline was retrieved and included during data extraction A search of grey literature utilizing the same terms and screening criteria was AC C conducted online using the search engine ‘Google Scholar’ The web pages of local, national and international organizations associated with neurology or cognitive impairment such as the Alzheimer Society of Canada, European Federation of Neurological Sciences and the American Geriatric Society were scrutinized and organizations contacted via telephone or email for pertinent information regarding guidelines Seven CPG catalogues were searched including: National Guideline Clearinghouse, International Guideline Network, the Canadian Medical Association InfoBase, Database of Abstracts of Reviews of Version 2: Oct 17, 2016 ACCEPTED MANUSCRIPT PALLIATIVE CONTENT IN DEMENTIA GUIDELINES Effects, Clinical Guideline Portal Australia, Scottish Intercollegiate Guideline Network and the New Zealand Guidelines Group Reference lists of relevant articles, including past RI PT systematic reviews of dementia care CPGs were scrutinized, and guidelines retrieved via hand searches A team of five researchers utilized DistillerSR software for article screening [13] SC Titles and abstracts were screened by two independent reviewers, with relevant articles selected for full text review Disagreements concerning inclusion or exclusion of CPGs M AN U were resolved through discussion and referral to a third reviewer following procedures and criteria outlined in the protocol A PRISMA flowchart demonstrating the search and study process is presented in Figure [14] Quality Assessment The quality of CPGs meeting inclusion criteria were assessed using the AGREE-II TE D instrument, which critiques guidelines based on eight domains including: scope and purpose, stakeholder involvement, rigour of development, clarity of presentation, EP applicability, and editorial independence and allows reviewers to impart an overall rating between and [14] Reviewers utilized an online tutorial for training and completed two AC C practice assessments reviewed by the principal investigator to ensure inter-rater agreement and reliability Guidelines achieving 60% or greater in the rigour of development domain and an overall assessment of four or greater by two independent reviewers were selected for data extraction and analysis High Agree II scores in the domain of rigour ensured CPGs had undergone rigorous development with recommendations graded according to quality evidence Data Extraction and Analysis Version 2: Oct 17, 2016 ACCEPTED MANUSCRIPT PALLIATIVE CONTENT IN DEMENTIA GUIDELINES The CHPCA ‘Square of Care’ model www.chpca.net provided a holistic framework for organizational template analysis of CPGs [6, 15] This method of content analysis RI PT allowed data to be coded, extracted and appraised in comparison to a pre-existing framework (i.e Square of Care) guiding palliative care Two reviewers independently coded the text of included CPGs (i.e recommendations or discussion points) and SC supporting documents according to the model’s eight domains / issues (disease management, physical, psychological, social, spiritual, practical, end-of-life, grief/loss) and M AN U subcategories, classifying content as present or absent with excerpts as proof Additional coding according to the process of care provision further described in the ‘Square of Care’ (i.e assessment, information sharing, decision-making, care planning, care delivery and confirmation) was beyond the scope of this review Data overlapping between multiple domains was extracted to the single domain perceived as most relevant TE D Results were compared and disagreements were resolved through discussion The principal author then performed frequency counts of content [6, 15], grading palliative care EP content within the eight CPG domains as absent (0% subcategories addressed), minimal (< 50% subcategories addressed), moderate (> than 50% subcategories addressed), or AC C maximum (100% of subcategories addressed) A second author reviewed the analysis to ensure accuracy Master themes were identified across the data Results The literature search of databases and grey literature resulted in 2490 articles being screened after duplicates were removed During screening, 1071 were determined not to be CPGs and 1293 were not aimed at dementia The authors found that many CPGs addressed four main diseases associated with dementia within one singular guideline, whereas Version 2: Oct 17, 2016 ACCEPTED MANUSCRIPT PALLIATIVE CONTENT IN DEMENTIA GUIDELINES 17 aggressiveness of EOL care among 266 consecutive cancer decedents, the authors found that the aggressiveness of EOL care was significantly lower in the early referral group RI PT (1.91±0.59 versus 2.14±0.78, adjusted p