implementation of relief for patients with palliative care needs

Conditions: Palliative Care

Summary: for patients with palliative care needs, access to care is constrained by health system resources and a requirement to visit their clinician for assessments. as assessments typically only occur every 4-8 weeks, this results in emergency department visits by patients/caregivers. more frequent assessments would provide more timely and earlier interventions for patients by their clinicians should intervention be required. however, a key barrier to effective symptom management and patient/family comfort is the lack of real-time symptom status. relief allows for the remote self-reporting of symptoms by patients to their healthcare providers. it is an easy and effective method of remote symptom reporting for patients with palliative care needs, and relief has the potential to result in significant healthcare cost avoidance and improved patient care. the proposed study will establish the feasibility of implementing relief across a diverse set of populations and settings in canada.

over 90% of canadians agree patients have the right to receive care in their own homes at the end of life and over half of canadians expect the bulk of their end-of-life care to occur in their own homes. a primary challenge to achieving these outcomes is insufficient resources and services around symptom assessment, monitoring, and management. poor symptom monitoring in the home and late referrals for symptom management may account for many patients dying in hospitals-nearly 65% of patients in ontario died in hospitals in 2015/16. receipt of palliative care services in the home has been associated with a 47% reduction in the likelihood of dying while in hospital. additionally, costs to the healthcare system are substantially higher in hospitalized patients. studies have demonstrated how remote monitoring of symptoms can improve care in patients with palliative care needs. however, some existing digital solutions are limited in that they are rarely well-integrated into the workflow. additionally, alerting mechanisms to trigger interventions are often absent and the target populations tend to only focus on patients with cancer. therefore, relief was introduced as an online application designed for the remote self-reporting of symptoms in all patients with palliative care needs. the patient/caregiver securely logs into the site and self-reports symptoms, distress, and pain using validated clinical tools. results are reported to the patient's healthcare team and flares in symptom burden are flagged for clinical review. these frequent assessments allow for: (1) earlier intervention; (2) mobilization of auxiliary services; and (3) recommendation for emergency or palliative intake. clinicians and nursing staff access patients' data through relief and receive alerts for any sudden, unexpected, and large changes in symptom status, allowing for timely acute interventions or close passive monitoring, reducing patient stress through the knowledge that their healthcare provider is monitoring their symptoms. in a small pilot study of relief in just 20 patients, it was found that the patient compliance rate was \>80%, with 92% of clinicians reporting improved confidence in the care provided, and an estimated healthcare cost avoidance of over $20,000 per patient over several months was achieved.

Eligibility criteria:
inclusion criteria: 1. patient has palliative care needs 2. any life-limiting diagnosis (including non-cancer diagnoses) 3. score of 40% or above on the palliative performance scale 4. able to communicate in english or french 5. have access to the internet 6. are comfortable learning to use relief for remote symptom self-reporting or have a caregiver who is comfortable learning to use relief and regularly reporting the patient's symptoms exclusion criteria: 1. moderate to severe confusion due to delirium or dementia as determined by the patient's healthcare provider 2. a patient with low technology literacy

Keywords: palliative care end of life care e-health tool implementation science home care virtual care remote monitoring symptom reporting