Symptom burden among Northern Alberta radiotherapy patients with advanced cancer: mapping needs and gaps

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ORIGINAL ARTICLE

Symptom burden among Northern Alberta radiotherapy patients with advanced cancer: mapping needs and gaps Winter Spence 1

&

Sunita Ghosh 1,2 & Megan Palen 1 & Alex Liska 1 & Vincent Ha 1 & Rebecca Wong 3,4 & Fleur Huang 1,2

Received: 6 September 2019 / Accepted: 28 January 2020 # Springer-Verlag GmbH Germany, part of Springer Nature 2020

Abstract Introduction Patients with advanced cancer often experience symptoms including pain, nausea, anorexia, fatigue, and depression. High symptom burden can be alleviated by multidisciplinary palliative care (PC) teams practicing symptom-directed management. Patients who are unable to access such services may be at higher risk of increased symptoms and poor outcomes. Methods A sequential exploratory mixed methods study was performed to explore the burden of symptoms experienced by Northern Alberta patients with advanced cancer. The symptom burden among patients from rural and remote communities was characterized in a retrospective review capturing basic demographic and clinicopathologic information, in addition to patient-reported outcomes. Symptom prevalence was evaluated against the nature and range of supportive care services available. Service accessibility was assessed at community level by surveying health care providers (HCPs) and performing thematic analysis on their responses. Results From January 1 to December 31, 2017, 607 outpatients were seen in consultation in an integrated palliative radiotherapy clinic in Edmonton, Alberta. A total of 166 (27.3%) patients resided in Alberta communities designated as rural or remote. Patient-reported symptom prevalence and intensity of scores did not differ significantly between rural/remote and urban populations. Unmet practical needs were flagged significantly more often by patients from rural communities (p = 0.05). HCPs from rural community health centers in Northern Alberta were knowledgeable regarding PC services availability and referral processes within their communities. Conclusion Although the symptom burden experienced by patients living with advanced cancer in rural and remote areas of Northern Alberta does not differ significantly from their urban counterparts, and community HCPs are knowledgeable regarding PC services, unmet needs within these communities remain. Continuing support for PC services in rural communities, as well as establishing care pathways for patients from rural populations traveling to urban centers to receive treatment, will help to minimize the unmet needs these patients experience. Keywords Rural palliative cancer care . Palliative radiotherapy . Patient reported outcomes . Symptom burden

Introduction Palliative care is defined as “care aimed at alleviating suffering – physical, emotional, psychosocial, or spiritual, rather * Winter Spence [email protected] 1

Cross Cancer Institute, 11560 University Ave, Edmonton, Alberta, Canada

2

University of Alberta, 8440 112 St NW, Edmonton, Alberta, Canada

3

Princess Margaret Cancer Centre, 610 University Ave, Toronto, Ontari