Palliative care case management in a surgical department for patients with gastrointestinal cancer-a register-based cohort study.

BACKGROUND: The effectiveness of generalist palliative care interventions in hospitals is unknown. AIM: This study aimed to explore the impact of a palliative care case management intervention for patients with gastrointestinal cancer (PalMaGiC) on hospital admissions, healthcare use, and place of death. DESIGN: This was a register-based cohort study analyzing data from the Danish Register on Causes of Death, the Danish National Patient Register, and the Danish Palliative Database. SETTING/PARTICIPANTS: Deceased patients with gastrointestinal cancer from 2010 to 2020 exposed to PalMaGiC were compared over three periods of time to patients receiving standard care. RESULTS: A total of 43,969 patients with gastrointestinal cancers were included in the study, of whom 1518 were exposed to PalMaGiC. In the last 30 days of life, exposed patients were significantly more likely to be hospitalized (OR of 1.62 (95% CI 1.26-2.01)), spend more days at the hospital, estimate of 1.21 (95% CI 1.02-1.44), and have a higher number of hospital admissions (RR of 1.13 (95% CI 1.01-1.27)), and were more likely to die at the hospital (OR of 1.94 (95% CI 1.55-2.44)) with an increasing trend over time. No differences were found for hospital healthcare use. CONCLUSION: Patients exposed to the PalMaGiC intervention had a greater likelihood of hospitalizations and death at the hospital compared to unexposed patients, despite the opposite intention. Sensitivity analyses show that regional differences may hold some of the explanation for this. Future development of generalist palliative care in hospitals should focus on integrating a home-based approach, community care, and PC physician involvement.

Associations between health-related quality of life and subsequent need for specialized palliative care and hospital utilization in patients with gastrointestinal cancer-a prospective single-center cohort study.

BACKGROUND: We lack knowledge of which factors are associated with the risk of developing complex palliative care needs. The aim of this study was to investigate the associations between patient-reported health-related quality of life and subsequent referral to specialized palliative care (SPC) and hospital utilization. METHODS: This was a prospective single-center cohort study. Data on patient-reported outcomes were collected through the European Organization of Research and Treatment of Cancer Questionnaire-Core-15-Palliative Care (EORTC QLQ-C15-PAL) at the time of diagnosis. Covariates and hospital utilization outcomes were collected from medical records. Adjusted logistic and Poisson regression were applied in the analyses. Participants were newly diagnosed with incurable gastrointestinal cancer and affiliated with a palliative care case management intervention established in a gastroenterology department. RESULTS: Out of 397 patients with incurable gastrointestinal cancer, 170 were included in the study. Patients newly diagnosed with incurable gastrointestinal cancer experienced a substantial burden of symptoms. Pain was significantly associated with subsequent referral to SPC (OR 1.015; 95% CI 1.001-1.029). Patients with lower education levels (OR 0.210; 95% CI 0.056-0.778) and a Charlson Comorbidity Index score of 2 or more (OR 0.173; 95% CI 0.041-0.733) were less likely to be referred to SPC. Pain (IRR 1.011; 95% CI 1.005-1.018), constipation (IRR 1.009; 95% CI 1.004-1.015), and impaired overall quality of life (IRR 0.991; 95% CI 0.983-0.999) were significantly associated with increased risk of hospital admissions. CONCLUSION: The study indicates a need for interventions in hospital departments to identify and manage the substantial symptom burden experienced by patients, provide palliative care, and ensure timely referral to SPC.

Qualitative evaluation of a palliative care case management intervention for patients with incurable gastrointestinal cancer (PalMaGiC) in a hospital department.

PURPOSE: Generalist palliative care in hospital departments largely lacks an overall structure to fully manage the symptom burden and support needs of patients with incurable gastrointestinal cancer. Palliative care case management interventions show promising results in reducing healthcare use and enhancing quality of life. Less is known about these interventions and their potential to improve the quality of generalist palliative care in hospital departments. The aim of this study was to explore patients' experience of a palliative care case management intervention (PalMaGiC) to acquire knowledge about its advantages and disadvantages and, if needed, adjust the intervention. METHODS: Qualitative semi-structured interviews with patients (n = 14) with incurable gastrointestinal cancers of the oesophagus, pancreas, colon, or rectum were conducted and analysed using content analysis. Participants in the study were affiliated with PalMaGiC, an intervention in a gastroenterology department based on symptom assessment, care planning, care coordination, and needs-based follow-up. RESULTS: Participants perceived the intervention as filling a gap and as a secure lifeline in the healthcare system since it provided 24-h access, a designated specialist nurse, and a patient-healthcare alliance. Using a needs-based approach, PalMaGiC changed the participants' focus from disease to quality of life. Participants requested more open dialog within complementary and alternative medicine, greater focus on promoting hope and using need assessment questionnaires differently in assessing symptoms and problems. CONCLUSION: The PalMaGiC intervention can potentially meet the needs of patients requiring palliative care in hospital departments, but further development of the content and personalised approach is needed.

From bystander to enlisted carer - A qualitative study of the experiences of caregivers of patients attending follow-up after curative treatment for cancers in the pancreas, duodenum and bile duct.

PURPOSE: Caregivers of patients with cancer play an important role throughout the treatment trajectory. This can be challenging and might infer health and psychosocial problems. This may especially be the case in caregivers of patients with cancers that carry a high risk of recurrence such as cancers of the pancreas, duodenum and bile duct. This study therefore explored the experiences of caregivers of patients attending follow-up after completion of treatment with curative intent for cancers of the pancreas, duodenum and bile duct. METHODS: A qualitative study using semi-structured, individual interviews. Data were analysed using content analysis. RESULTS: Ten caregivers of patients attending follow-up after completed curative treatment for cancers of the pancreas, duodenum and bile duct in a specialized gastro-surgical center at a tertiary hospital in the Capital Region of Denmark participated. We identified three themes: "From bystander to enlisted carer", inferring that caregivers felt enlisted as carers during treatment and follow-up, however without sufficient instruction or assessment of their needs. "Lonesome worrying" meaning that caregivers hid their feelings of concern and foreboding, and finally, "Keeping a stiff upper lip" indicating that caregivers outwardly maintained a positive face when interacting with the patient. CONCLUSION: Caregivers described taking on a substantial burden of care without feeling competent. They experienced distress and emotional isolation which affected their relationship with the patient and their mutual coping. The results indicate a need for health care professionals to facilitate reflection on the needs and roles of both patients and caregivers throughout the treatment trajectory.