Aims: This study aims to implement a new
model of supportive & palliative care (I-CoPE) into a tertiary
neuro-oncology service for patients with high-grade glioma (HGG) and their
carers. I-CoPE involves the provision of staged Information, Coordination,
Preparation through regular screening, and Emotional support,
based upon stages reached in the illness course.
Method: Pilot implementation and program evaluation study design of a
complex intervention, delivered at key points across the HGG disease
trajectory. Outcomes included: 1) Acceptability and feasibility (enrolment,
retention and screening outcomes); 2) Health service use; and 3) Patient and
carer impacts (unmet supportive care and information needs, quality of life,
and preparedness to care). Descriptive statistics and one-sided, paired sample
t tests (p < .05) were used to assess change post intervention.
Results: I-CoPE is an acceptable and feasible intervention, with 95%
enrolment rate of eligible patients (n=25) and their carers (n=23). Screening
revealed the majority of patient concerns were focused on existential needs
(33%), while carers reported mostly practical needs (34%). Post I-CoPE: (1)
Patients reported fewer unmet supportive care (d=2.7, p < 0.001) and
information (d=0.8, p=.06) needs, and improved quality of life (d=0.8, p=.05).
(2) Carers reported fewer unmet supportive care (d=1.0, p=.01) and information
(d=0.6, p=.08) needs, improved quality of life (d=0.7, p=.08), lower carer
burden (d=1.1, p=.0009), and increased preparedness to care (d=0.7, p=.05).
Conclusions: Patients and carers had changing needs for support and
fluctuating distress which mirrored the illness trajectory. Palliative care
needs were readily apparent from diagnosis. I-CoPE was feasibly delivered and
demonstrated benefits for patients, carers, health professionals, and the
health system. We attribute the success of I-CoPE to the underlying principle
of a model based on predefined transitions in the disease trajectory.