Confidence to care: A multi-state randomised controlled trail of structured nurse-led home-based support and education for carers of.. (Cancer Australia project led by Curtin University of Technology) (2016–2018)
Abstract:
Overview: High Grade Glioma (HGG) is an inevitably fatal brain tumour that leads to a rapid decline in function and requires carers to be actively involved in patient care. Pilot data undertaken by our group indicates that carers of patients with HGG are highly distressed and feel poorly prepared for their caring role.
Aim: To evaluate a nurse-led, tailored home-based education and support program for carers of people with HGG.
Study population: Carers of patients diagnosed with HGG who have commenced combined chemo-radiotherapy will be recruited from sites in Perth, Sydney and Melbourne.
The Intervention: A telephone assessment of carers needs; nurse home visit; tailored resource file and ongoing telephone support.
Design: An RCT will compare the intervention to standard care.
Sample size: Using a 5% significance level and 80% power 78 carers per group will allow detection of between group differences of 0.5 standard deviations for carer preparedness and distress. 240 carers will need to be recruited to allow for attrition rates.
Survey Measures: a) Carer related outcomes including: Preparedness for Care-giving Scale; Distress Thermometer; Hospital Anxiety and
Depression Scale; Caregiver Quality of Life Index ¿ Cancer; Brain Tumour Specific Supportive Care Needs for Carers survey; Carer Competence Scale; Checklist of Services used; patient¿s ECOG score; and Prolonged Grief Disorder Scale Caregiver Version. b) Healthcare utilisation: patient admissions and length of stay (LOS) in hospital, hospice and residential care, emergency presentations, unplanned admissions
from outpatient clinics, and healthcare costs.
Significance: If we can demonstrate that this intervention increases caregiver preparedness; reduces distress and is cost-neutral, or even costsaving, we would be in an ideal position to advocate for routine provision of similar services through our links with Carers WA, the COSA neuro-oncology group and the Cancer Councils.
