Vanessa L Beesley1, Monika Janda2, Elizabeth A Burmeister1, David Goldstein3, Helen Gooden4, Neil D Merrett5, Dianne L O'Connell6, David K Wyld7, Raymond J Chan7, Jane M Young8, Rachel E Neale1. 1. Population Health Department,QIMR Berghofer Medical Research Institute,Brisbane,Queensland,Australia. 2. School of Public Health and Social Work,Queensland University of Technology,Brisbane,Queensland,Australia. 3. Department of Medical Oncology,Prince of Wales Hospital,Sydney,New South Wales,Australia. 4. Cancer Nursing Research Unit, University of Sydney,New South Wales,Sydney,Australia. 5. Discipline of Surgery,Western Sydney University,Sydney,New South Wales,Australia. 6. Cancer Research Division,Cancer Council of New South Wales,Sydney,New South Wales,Australia. 7. Department of Medical Oncology and Cancer Care Services,Royal Brisbane and Women's Hospital,Brisbane,Queensland,Australia. 8. RPA Institute of Academic Surgery and Surgical Outcomes Research Centre,Sydney Local Health District,Sydney,New South Wales,Australia.
Abstract
OBJECTIVE: People with pancreatic cancer have poor survival, and management is challenging. Pancreatic cancer patients' perceptions of their care coordination and its association with their outcomes have not been well-studied. Our objective was to determine if perception of care coordination is associated with patient-reported outcomes or survival. METHODS: People with pancreatic cancer who were 1-8 months postdiagnosis (52 with completed resection and 58 with no resection) completed a patient-reported questionnaire that assessed their perceptions of care coordination, quality of life, anxiety, and depression using validated instruments. Mean scores for 15 care-coordination items were calculated and then ranked from highest (best experience) to lowest (worst experience). Associations between care-coordination scores (including communication and navigation domains) and patient-reported outcomes and survival were investigated using general linear regression and Cox regression, respectively. All analyses were stratified by whether or not the tumor had been resected. RESULTS: In both groups, the highest-ranked care-coordination items were: knowing who was responsible for coordinating care, health professionals being informed about their history, and waiting times. The worst-ranked items related to: how often patients were asked about visits with other health professionals and how well they and their family were coping, knowing the symptoms they should monitor, having sufficient emotional help from staff, and access to additional specialist services. For people who had a resection, better communication and navigation scores were significantly associated with higher quality of life and less anxiety and depression. However, these associations were not statistically significant for those with no resection. Perception of cancer care coordination was not associated with survival in either group. SIGNIFICANCE OF RESULTS: Our results suggest that, while many core clinical aspects of care are perceived to be done well for pancreatic cancer patients, improvements in emotional support, referral to specialist services, and self-management education may improve patient-reported outcomes.
OBJECTIVE:People with pancreatic cancer have poor survival, and management is challenging. Pancreatic cancerpatients' perceptions of their care coordination and its association with their outcomes have not been well-studied. Our objective was to determine if perception of care coordination is associated with patient-reported outcomes or survival. METHODS:People with pancreatic cancer who were 1-8 months postdiagnosis (52 with completed resection and 58 with no resection) completed a patient-reported questionnaire that assessed their perceptions of care coordination, quality of life, anxiety, and depression using validated instruments. Mean scores for 15 care-coordination items were calculated and then ranked from highest (best experience) to lowest (worst experience). Associations between care-coordination scores (including communication and navigation domains) and patient-reported outcomes and survival were investigated using general linear regression and Cox regression, respectively. All analyses were stratified by whether or not the tumor had been resected. RESULTS: In both groups, the highest-ranked care-coordination items were: knowing who was responsible for coordinating care, health professionals being informed about their history, and waiting times. The worst-ranked items related to: how often patients were asked about visits with other health professionals and how well they and their family were coping, knowing the symptoms they should monitor, having sufficient emotional help from staff, and access to additional specialist services. For people who had a resection, better communication and navigation scores were significantly associated with higher quality of life and less anxiety and depression. However, these associations were not statistically significant for those with no resection. Perception of cancer care coordination was not associated with survival in either group. SIGNIFICANCE OF RESULTS: Our results suggest that, while many core clinical aspects of care are perceived to be done well for pancreatic cancerpatients, improvements in emotional support, referral to specialist services, and self-management education may improve patient-reported outcomes.
Entities:
Keywords:
Anxiety; Care coordination; Depression; Pancreatic cancer; Quality of life
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