The authors declare that they have no competing interests.
All authors made substantial contributions to the conception and design of the research, were involved in authoring the manuscript and agree to be accountable for all aspects of the work. GL led content on statistical analysis and SG content on cost effectiveness analysis. All authors read and approved the final manuscript.
Care for people with advanced dementia requires a palliative approach targeted to the illness trajectory and tailored to individual needs. However, care in nursing homes is often compromised by poor communication and limited staff expertise. This paper reports the protocol for the IDEAL Project, which aims to: 1) compare the efficacy of a facilitated approach to family case conferencing with usual care; 2) provide insights into nursing home- and staff-related processes influencing the implementation and sustainability of case conferencing; and 3) evaluate cost-effectiveness.
A pragmatic parallel cluster randomised controlled trial design will be used. Twenty Australian nursing homes will be randomised to receive either facilitated family case conferencing or usual care.
In the intervention arm, we will train registered nurses at each nursing home to work as Palliative Care Planning Coordinators (PCPCs) 16 h per week over 18 months. The PCPCs’ role will be to: 1) use evidence-based ‘triggers’ to identify optimal time-points for case conferencing; 2) organise, facilitate and document case conferences with optimal involvement from family, multi-disciplinary nursing home staff and community health professionals; 3) develop and oversee implementation of palliative care plans; and 4) train other staff in person-centred palliative care.
The primary endpoint will be symptom management, comfort and satisfaction with care at the end of life as rated by bereaved family members on the End of Life in Dementia (EOLD) Scales. Secondary outcomes will include resident quality of life (Quality of Life in Late-stage Dementia [QUALID]), whether a palliative approach is taken (e.g. hospitalisations, non-palliative medical treatments), staff attitudes and knowledge (Palliative Care for Advanced Dementia [qPAD]), and cost effectiveness. Processes and factors influencing implementation, outcomes and sustainability will be explored statistically via analysis of intervention ‘dose’ and qualitatively via semi-structured interviews. The pragmatic design and complex nature of the intervention will limit blinding and internal validity but support external validity.
The IDEAL Project will make an important contribution to the evidence base for dementia-specific case conferencing in nursing homes by considering processes and contextual factors as well as overall efficacy. Its strengths and weaknesses will both lie in its pragmatic design.
Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12612001164886. Registered 02/11/2012.
van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P 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. 2013(Epub ahead of print).
Sorrell JM. Use of feeding tubes in patients with advanced dementia: Are we doing harm? Journal of Psychosocial Nursing and Mental Health Services. 2010;48 (5):15–8. doi:http://dx.doi.org/ 10.3928/02793695-20100331-02.
Hines S, McCrow J, Abbey J, Foottit J, Wilson J, Franklin S et al. Effectiveness and appropriateness of a palliative approach to care for people with advanced dementia: A systematic review. Dementia Collaborative Research Centre for carers and consumers, QUT: Brisbane; 2009.
Reuther S, Dichter MN, Buscher I, Vollmar HC, Holle D, Bartholomeyczik S et al. Case conferences as interventions dealing with the challenging behavior of people with dementia in nursing homes: a systematic review. Int Psychogeriatr. 2012;24(12):1891–903. doi:http://dx.doi.org/ 10.1017/S1041610212001342.
Phillips JL, West PA, Davidson PM, Agar M. Does case conferencing for people with advanced dementia living in nursing homes improve care outcomes: evidence from an integrative review? Int J Nurs Stud. 2013;50(8):1122–35. doi:http://dx.doi.org/ 10.1016/j.ijnurstu.2012.11.001.
Beer C, Flicker L, Horner B, Bretland N, Scherer S, Lautenschlager NT et al. Factors associated with self and informant ratings of the quality of life of people with dementia living in care facilities: a cross sectional study. PLoS ONE. 2010;5(12):e15621. doi:http://dx.doi.org/ 10.1371/journal.pone.0015621.
Abernethy AP, Currow DC, Shelby-James T, Rowett D, May F, Samsa GP, et al. Delivery strategies to optimize resource utilization and performance status for patients with advanced life-limiting illness: results from the "palliative care trial" [ISRCTN 81117481]. J Pain Symptom Manage. 2013;45(3):488–505. doi: 10.1016/j.jpainsymman.2012.02.024. CrossRefPubMed
Abernethy AP Shelby-James T, Currow D, Williams H, Phillips P. Individualised multi-disciplinary case conferences: can they be practically added to specialist palliative care? 8th Australian Palliative Care Conference; Sydney. 2007.
Mitchell G, Cherry M, Kennedy R, Weeden K, Burridge L, Clavarino A, et al. General practitioner, specialist providers case conferences in palliative care--lessons learned from 56 case conferences. Aust Fam Physician. 2005;34(5):389–92. PubMed
Mitchell GK, De Jong IC, Del Mar CB, Clavarino AM, Kennedy R. General practitioner attitudes to case conferences: how can we increase participation and effectiveness? Med J Aust. 2002;177(2):95–7. PubMed
Holle D, Kruger C, Halek M, Sirsch E, Bartholomeyczik S. Experiences of nursing staff using dementia-specific case conferences in nursing homes. Am J Alzheimers Dis Other Demen. 2015;30(3):228–37. doi:http://dx.doi.org/ 10.1177/1533317514552320.
Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M et al. Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ. 2008;337:a1655. Also available open-source online at www.mrc.ac.uk/complexinterventionsguidance. doi:http://dx.doi.org/ 10.1136/bmj.a1655.
Mid North Coast (NSW) Division of General Practice (MNCDGP), Coffs Harbour. Toolkit: Creating a Multi-Disciplinary Team Approach to Care Planning In Residential Aged Care Facilities. 2nd ed. Coffs Harbour: MNCDGP: Rural Palliative Care Project, Aged Care GP Panels Initiative and Integrated Network Palliative Care Project; 2007.
Mid North Coast Division of General Practice. Mid North Coast Rural Palliative Care Project: Final report. Coffs Harbour: MNCDGP; 2006.
Abernethy AP, Currow DC, Hunt R, Williams H, Roder-Allen G, Rowett D, et al. A pragmatic 2 x 2 x 2 factorial cluster randomized controlled trial of educational outreach visiting and case conferencing in palliative care-methodology of the Palliative Care Trial [ISRCTN 81117481]. Contemp Clin Trials. 2006;27(1):83–100. CrossRefPubMed
Australian Government Department of Social Services. myagedcare: Find a service. 2012. http://www.myagedcare.gov.au/service-finders#block-finder-aged-care-home-finder-agedcarehome. Accessed 12th November 2013.
Reisberg B. Functional assessment staging (FAST). Psychopharmacol Bull. 1988;24(4):653–9. PubMed
Abernethy A, Shelby-James T, Fazekas B, Woods D, Currow D. The Australia-modified Karnofsky Performance Status (AKPS) scale: a revised scale for contemporary palliative care clinical practice. BMC Palliative Care. 2005;4(7): http://www.biomedcentral.com/content/pdf/1472-684X-4-7.pdf.
Ersek M, Kraybukk B, Hansen N. Evaluation of a train-the-trainer program to enhance hospice and palliative care in nursing homes. J Hospice Palliat Nurs. 2006;8:42–9. CrossRef
Shaw EK, Howard J, West DR, Crabtree BF, Nease Jr DE, Tutt B, et al. The role of the champion in primary care change efforts: from the State Networks of Colorado Ambulatory Practices and Partners (SNOCAP). J Am Board Fam Med. 2012;25(5):676–85. doi: 10.3122/jabfm.2012.05.110281. PubMedCentralCrossRefPubMed
Wenger E, McDermott R, Snyder W. Cultivating communities of practice: a guide to managing knowledge. Cambridge MT: Harvard Business School Press; 2002.
Parker D, Hodgkinson B. A comparison of palliative care outcome measures used to assess the quality of palliative care provided in long-term care facilities: a systematic review. Pall Med. 2010;25(1):5–20. CrossRef
Lindemann E. Symptomatology and management of acute grief. 1944. Am J Psychiatry. 1994;151(6 Suppl):155–60. PubMed
Weiner MF, Martin-Cook K, Svetlik DA, Saine K, Foster B, Fontaine CS. The Quality of Life in Late-stage Dementia (QUALID) Scale. J Am Med Dir Assoc. 2000;1:114–6. PubMed
Chenoweth L, King MT, Jeon Y-H, Brodaty H, Stein-Parbury J, Norman R, et al. Caring for Aged Dementia Care Resident Study (CADRES) of person-centred care, dementia-care mapping, and usual care in dementia: a cluster-randomised trial.[Erratum appears in Lancet Neurol. 2009 May;8(5):419]. Lancet neurol. 2009;8(4):317–25. CrossRefPubMed
Kind P. The EuroQoL instrument: An index of health-related quality of life. In: Spilker B, editor. Quality of life and pharmacoeconomics in clinical trials. 2nd ed. Philadelphia: Lipincott-Raven; 1996. p. 191–201.
Long CO, Sowell EJ, Hess RK, Alonzo TR. Development of the questionnaire on palliative care for advanced dementia (qPAD). Am J Alzheimers Dis Other Demen. 2012;27(7):537–43. doi:http://dx.doi.org/ 10.1177/1533317512459793.
Norman GR, Sloan JA, Wyrwich KW. Interpretation of changes in health-related quality of life: the remarkable universality of half a standard deviation. Med Care. 2003;41:582–92. PubMed
Mitchell SL, Miller SC, Teno JM, Davis RB, Shaffer ML. The Advanced Dementia Prognostic Tool: A risk score to estimate survival in nursing home residents with advanced dementia. J Pain Symptom Manag. 2010;40(5):doi: 10.1016/j.jpainsymman.2010.02.014.
Ritchie J, Spencer L. Qualitative data analysis for applied policy research. In: Bryman A, Burgess RG, editors. Analyzing qualitative data. 1994. p. 173–94. CrossRef
Strauss A, Corbin J. Basics of Qualitative Research Techniques and Procedures for Developing Grounded Theory. 2nd ed. London: Sage Publications; 1998.
Chenoweth L, King MT, Jeon YH, Brodaty H, Stein-Parbury J, Norman R, et al. Caring for Aged Dementia Care Resident Study (CADRES) of person-centred care, dementia-care mapping, and usual care in dementia: a cluster-randomised trial. Lancet Neurol. 2009;8(4):317–25. doi: 10.1016/s1474-4422(09)70045-6. CrossRefPubMed
Queensland University of Technology. ENABLE Project: Developing and testing a toolkit for the implementation and evaluation of person-centred evidence-based responses to need-driven behaviours associated with dementia. 2015. https://www.qut.edu.au/research/research-projects/enable-project-toolkit-dementia. Accessed 9th September 2015.
Chenoweth L, King M, Luscombe G, Forbes I, Jeon YH, Parbury JS, et al. Study protocol of a randomised controlled group trial of client and care outcomes in the residential dementia care setting. Worldviews Evid Based Nurs. 2011;8(3):153–65. doi: 10.1111/j.1741-6787.2010.00204.x. CrossRefPubMed
Chenoweth L, Jeon YH, Stein-Parbury J, Forbes I, Fleming R, Cook J et al. PerCEN trial participant perspectives on the implementation and outcomes of person-centered dementia care and environments. Int Psychogeriatr. 2015:1–13. doi: 10.1017/s1041610215001350.
Aged Care Branch. Dementia-friendly environments: residential care. Canberra: Australia Government; 2011.
Alzheimer’s Disease International. World Alzheimer Report 2013. Journey of Caring: An analysis of long-term care for dementia. London: ADI; 2013.
Department of Health and Ageing. Aged Care Funding Instrument (ACFI). 2010. www.dss.gov.au/our-responsibilities/ageing-and-aged-care/tools-andresources/aged-care-funding-instrument-acfi-reports. Accessed Dec 12th 2010.
Burke C. Development of the person-centred environment and care assessment tool (PCECAT) and guidelines [PhD]. Australia: University of Technology Sydney; 2012.
- Pragmatic cluster randomised controlled trial of facilitated family case conferencing compared with usual care for improving end of life care and outcomes in nursing home residents with advanced dementia and their families: the IDEAL study protocol
Patricia M. Davidson
- BioMed Central
Neu im Fachgebiet AINS
Meistgelesene Bücher aus dem Fachgebiet AINS
Mail Icon II