I-CoPE: A pilot study of structured supportive care delivery to people with newly diagnosed high-grade glioma and their carers

Abstract

Background There is limited evidence to guide best approaches to supportive care delivery to patients with high-grade glioma. I-CoPE (Information, Coordination, Preparation and Emotional) is a structured supportive care approach for people with newly diagnosed high-grade glioma and their family carers. Delivered by a cancer care coordinator, I-CoPE consists of (1) staged information, (2) regular screening for needs, (3) communication and coordination, and (4) family carer engagement. This pilot study tested acceptability and preliminary effectiveness of I-CoPE, delivered over 3 transitions in the illness course, for people newly diagnosed with high-grade glioma and their carers. Methods I-CoPE was delivered at the identified transition times (at diagnosis, following the diagnostic hospitalization, following radiotherapy), with associated data collection (enrollment, 2 weeks, 12 weeks). Outcomes of interest included: acceptability/feasibility (primary); quality of life; needs for support; disease-related information needs; and carer preparedness to care (secondary). Descriptive statistics were used to assess acceptability outcomes, while patient and carer outcomes were assessed using repeated measures ANOVA. Results Thirty-two patients (53% male, mean age 60) and 31 carers (42% male) participated. I-CoPE was highly acceptable: 86% of eligible patients enrolled, and of these 88% completed the study. Following I-CoPE patients and carers reported fewer information needs (P < .001), while carers reported fewer unmet supportive care needs (P < .01) and increased preparedness to care (P = .04). Quality of life did not significantly change. Conclusion A model of supportive care delivered based upon illness transitions is feasible, acceptable, and suggests preliminary efficacy in some areas. Formal randomized studies are now required.

Use of telehealth platforms for delivering supportive care to adults with primary brain tumors and their family caregivers: A systematic review

“…Philip et al 48 evaluated the I nformation, Co ordination, P reparation and E motional support (I‐CoPE) intervention delivered by cancer care coordinators over three phases: immediately post‐diagnosis (Transition A), post‐discharge prior to chemo/radiotherapy (Transition B) and post‐radiotherapy (Transition C). Components included generic and individualised information on diagnosis, treatment and health professionals (A), distress screening and needs assessment (A, B & C) and a tailored information package with community links (C).…”

“…Interventions involving communication in real‐time with professionals typically had higher rates of adherence or completion. For example, 80%–100% of patients remained engaged in telephone‐based support over several months in four studies 42,43,48,53 . Similarly, adherence or program completion was moderate to high (63%–95%) in videoconferencing interventions 38,41,54 …”

Scope of Practice, Role Legitimacy, and Role Potential for Cancer Care Coordinators

“…An example of improved patient outcomes and enhanced CCC satisfaction are available from a pilot study of a structured approach to providing cancer care coordination for patients with high-grade glioma. [21] This structured approach, I-CoPE, involves the ideal components of CCC highlighted by participants in this study, notably CCC involvement across the illness spectrum, integration into all aspects of care, prescribed regular contact with patients and carers, and mentored support for the role. Outcomes of a pilot study of I-CoPE reveal preliminary improvements in patient and carer information needs and improved carer quality of life.…”

“…While previous studies have focused on patient outcomes, patient and family experiences, and cost-effectiveness of the CCC role,[1317] this project sought to specifically focus on CCCs’ perceptions of, and preferences for, the development of their role. With increasing evidence to support the benefits of care coordination,[1321] it is critical and timely to examine the current CCC role within the Australian context. This study aimed to explore CCCs perceptions and experiences of their role and scope of practice, with a view to identifying opportunities for the future development of the role.…”

Palliative Care in High-Grade Glioma: A Review

“…We conclude from the above findings that patients and caregivers do welcome advance care planning. One intervention that looked at ways to improve such communication in this population was the recent Information, Coordination, Preparation, and Emotional (I-CoPE) pilot study of structured, supportive care for HGG, including staged information sharing at the time of diagnosis, following hospital discharge prior to initiation of chemo/radiotherapy, and following completion of radiotherapy [ 48 ]. Along with distress screening, emotional support, and care coordination from an I-CoPE care coordinator, this intervention was feasible and acceptable to caregivers, providing a potential template for structured advance care planning interventions.…”