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Table 2 Data collected on characteristics of facilities, residents, families and staff with potential to influence outcomes

From: 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

Level

Time point(s)

Variables/measures

Facility

Baseline

Number of beds; high care versus low care; private versus not-for-profit status; organisational affiliation; dementia-specific status; accommodation and amenities; management structure; person-centredness (PCECAT)

 

Baseline and 3 monthly

Number of new admissions and deaths; number and proportion of residents with dementia and advanced dementia; proportion of residents requiring complex care

Involvement of GPs and other community services; rates of acute care episodes and length of stay (including ED presentations with admission and actual admission); rates of potentially non-palliative interventions* and intra-venous anti-biotics

Staff profile and turnover (resignations and new staff); resident to staff ratio; use of agency staff; staff training

Accidents/incidents

Resident

Baseline

Age; gender; previous occupation; years of education

Time since dementia diagnosis; BMI

Length of stay in NH

 

Baseline and 3 monthly

Dementia stage (FAST); performance statues (AKPS); support needed for activities of daily living (BANS); comorbidities and level of care needs (ACFI); food and fluid intake; palliative care phase (PCOC phase)

Number of visitors and frequency of visits

 

Whole time on study

ED visits and hospitalisations (reason, whether a GP was consulted in decision to hospitalise, length of stay); potentially non-palliative interventions*; goals of care; reports for any RMMRs conducted

 

Last month of life

Place of death and(if not NH) reason for transfer and who decided; symptoms; formal symptom assessments; management over last 24 h of life (detailed); non-pharmacological management; input from health professionals; medication changes and rationale

Family

Baseline

Self-reported relationship to resident; age; gender; education; occupation; dependents; frequency/duration of visits; person responsible status** and prior involvement in decision-making

Staff

Baseline

Self-reported age; gender; qualifications; position; time in position; time in NH care; dementia experience and previous staff training

 

Baseline and 3 monthly

Knowledge and attitudes towards advanced dementia (qPAD)

  1. ACFI = Aged Care Funding Instrument [78]; AKPS = Australia–modified Karnofsky Performance Status [47]; BANS = Bedford Alzheimer Nursing Severity (BANS) [79]; BMI = body mass index; ED = emergency department; FAST = Functional Assessment Staging of Alzheimer’s Disease [46]; GP = general practitioner; NH = nursing home; PCECAT = Person Centred Environment and Care Assessment Tool [80]; PCOC = Palliative Care Outcomes Collaborative [81]; qPAD = questionnaire on Palliative care for Advanced Dementia [64]; RMMR = residential medication management review; * potentially non-palliative interventions defined as ventilation, resuscitation, nasogastric/ percutaneous endoscopic gastrostomy (PEG) feeding, cardiopulmonary resuscitation, dialysis, oxygen, transfusion; **person responsible status concerns a person’s legal status as a surrogate decision-maker