Abstract
Background: Palliative care is an approach that improves quality of life for patients and families facing challenges associated with life-threatening illness. In Alberta, most people who received palliative care received it late. Late palliative care negatively affects patient and caregiver experiences and decreases quality of life. This study aims to understand patient and caregiver experiences of advanced colorectal cancer care to inform an early palliative care pathway for advanced cancer care. Methods: A qualitative study that is embedded within a larger program of research on the implementation of the Palliative Care Early and Systematic (paces) pathway. Semi-structured telephone interviews with patients and their caregivers living with advanced colorectal cancer were conducted to explore their experiences with cancer care services received before pathway implementation. Interviews were transcribed, and the data were thematically analyzed, supported by the qualitative analysis software NVivo. Results: Interviews with 15 patients and 7 caregivers from Edmonton and Calgary were conducted over the telephone. Most participants found the Putting Patients First tool to be useful at their appointments; however, some mentioned a preference for viewing their scores over time. A total of 6 main themes were identified: (1) Meaning of palliative care (2) Communication (3 main subthemes: communication of diagnosis, communication between patient and oncologist, communication between providers) (3) Relationship with health care providers (including oncologist, family doctor, and nurses) (4) Access to care (cost of care, proximity to care, after hours care) (5) Patient readiness for advance care planning (6) Patient and family engagement in care, with mixed experiences in how patients were involved in their care. Conclusions: Most participants misperceived palliative care to mean “end-of-life care,” suggesting a need for improvement in the delivery of palliative care information. Understanding the care experiences of patients and caregivers will inform the development of a care pathway for early palliative care.
Highlights
Our health care system relies on informal caregivers to provide critical support to individuals living with cancer, resulting in burden and compromises to their own quality of life
Patients with rectal cancer undergoing preoperative radiotherapy experience significant symptom burden. It is unknown whether symptoms during radiotherapy might portend adverse postoperative outcomes and health care use
Most patients diagnosed with esophageal cancer present with incurable disease
Summary
Our health care system relies on informal caregivers to provide critical support to individuals living with cancer, resulting in burden and compromises to their own quality of life. This study used population-level patientreported Edmonton Symptom Assessment System (esas) scores collected as part of standard clinical care to describe symptom trajectories and characteristics associated with severe symptoms for patients undergoing curative-intent treatment for ec. Combined with identified patient and disease factors associated with moderate-to-severe symptom scores, this information is important to support the design of symptom management strategies to improve patient-centred care for nets. A lthough certain scale items require further exploration in future studies, the diva provides an opportunity to increase cancer-specific knowledge about outcomes relating to vvs Inclusion of this measure when assessing effects will help to inform clinicians about unmet needs relating to vvs in these patients. The study linked population-level administrative health care data to routinely prospectively-collected Edmonton Symptom Assessment System (esas) scores from 2009 to 2015, with data analysis undertaken in 2018. Our intention is for this information to help guide clinical recommendations to achieve optimal patient satisfaction with treatment results
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