title: 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.
abstract: BACKGROUND
  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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
  
  
  BACKGROUND
  Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12612001164886. Registered 02/11/2012.
authors.affiliation: Discipline of Palliative and Supportive Services, Flinders University, Adelaide, Australia. meera-agar@sswahs.nsw.gov.au.|South West Sydney Clinical School, and Improving Palliative Care through Clinical trials (ImPACCT), University of New South Wales, Sydney, Australia. meera-agar@sswahs.nsw.gov.au.|Department of Palliative Care, Braeside Hospital, HammondCare, Sydney, Australia. meera-agar@sswahs.nsw.gov.au.|Ingham Institute of Applied Medical Research, Sydney, Australia. meera-agar@sswahs.nsw.gov.au.
authors.forename: Meera
authors.initials: M
authors.lastname: Agar
authors.affiliation: Dementia Collaborative Research Centre, Queensland University of Technology, Brisbane, Australia. Elizabeth.beattie@qut.edu.au.|School of Nursing, Midwifery and Social Work, University of Queensland, Brisbane, Australia. Elizabeth.beattie@qut.edu.au.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Beattie
authors.affiliation: South West Sydney Clinical School, and Improving Palliative Care through Clinical trials (ImPACCT), University of New South Wales, Sydney, Australia. tim.luckett@uts.edu.au.|Centre for Cardiovascular and Chronic Care, Faculty of Health, University of Technology Sydney, Sydney, Australia. tim.luckett@uts.edu.au.|University of Technology Sydney (UTS) Faculty of Health, Building 10, Level 7, 235-253 Jones St, Ultimo, NSW 2007, Australia. tim.luckett@uts.edu.au.
authors.forename: Tim
authors.initials: T
authors.lastname: Luckett
authors.affiliation: Centre for Cardiovascular and Chronic Care, Faculty of Health, University of Technology Sydney, Sydney, Australia. jane.phillips@uts.edu.au.
authors.forename: Jane
authors.initials: J
authors.lastname: Phillips
authors.affiliation: School of Rural Health, Faculty of Medicine, The University of Sydney, Sydney, Australia. georgina.luscombe@sydney.edu.au.
authors.forename: Georgina
authors.initials: G
authors.lastname: Luscombe
authors.affiliation: Centre for health Economics Research and Evaluation (CHERE), University of Technology Sydney, Sydney, Australia. Stephen.goodall@uts.edu.au.
authors.forename: Stephen
authors.initials: S
authors.lastname: Goodall
authors.affiliation: Faculty of Medicine and Biomedical Sciences, University of Queensland, Brisbane, Australia. g.mitchell@uq.edu.au.
authors.forename: Geoffrey
authors.initials: G
authors.lastname: Mitchell
authors.affiliation: School of Medicine and Public Health, Faculty of Health, University of Newcastle, Newcastle, Australia. dimity.pond@newcastle.edu.au.
authors.forename: Dimity
authors.initials: D
authors.lastname: Pond
authors.affiliation: School of Nursing, Johns Hopkins University, Baltimore, USA. pdavidson@jhu.edu.
authors.forename: Patricia M
authors.initials: PM
authors.lastname: Davidson
authors.affiliation: Faculty of Health, University of Technology Sydney, Sydney, Australia. Lynnette.chenoweth@uts.edu.au.|Centre for Healthy Brain Ageing, University of New South Wales, Sydney, Australia. Lynnette.chenoweth@uts.edu.au.
authors.forename: Lynnette
authors.initials: L
authors.lastname: Chenoweth
mesh_terms: D032722:Advance Care Planning / Q000706:statistics & numerical data; D001315:Australia; D003704:Dementia / Q000628:therapy*; D005192:Family Health / Q000592:standards*; D006801:Humans; D009520:New Zealand; D009735:Nursing Homes; D018802:Patient-Centered Care / Q000379:methods; D064792:Pragmatic Clinical Trials as Topic / Q000379:methods / Q000706:statistics & numerical data*; D011788:Quality of Life; D013727:Terminal Care / Q000379:methods / Q000592:standards*