Effects of an Oncology Nurse-Led, Primary Palliative Care Intervention (CONNECT) on Illness Expectations Among Patients With Advanced Cancer

Abstract

Purpose: Patients with advanced cancer often have unrealistic expectations about prognosis and treatment. This study assessed the effect of an oncology nurse-led primary palliative care intervention on illness expectations among patients with advanced cancer.

Methods: This study is a secondary analysis of a cluster-randomized trial of primary palliative care conducted at 17 oncology clinics. Adult patients with advanced solid tumors for whom the oncologist would not be surprised if died within 1 year were enrolled. Monthly visits were designed to foster realistic illness expectations by eliciting patient concerns and goals for their medical care and empowering patients and families to engage in discussions with oncologists about treatment options and preferences. Baseline and 3-month questionnaires included questions about life expectancy, treatment intent, and terminal illness acknowledgment. Odds of realistic illness expectations at 3 months were adjusted for baseline responses, patient demographic and clinical characteristics, and intervention dose.

Results: Among 457 primarily White patients, there was little difference in realistic illness expectations at 3 months between intervention and standard care groups: 12.8% v 11.4% for life expectancy (adjusted odds ratio [aOR] = 1.15; 95% CI, 0.59 to 2.22; P = .684); 24.6% v 33.3% for treatment intent (aOR = 0.76; 95% CI, 0.44 to 1.27; P = .290); 53.6% v 44.7% for terminal illness acknowledgment (aOR = 1.28; 95% CI, 0.81 to 2.00; P = .288). Results did not differ when accounting for variation in clinic sites or intervention dose.

Conclusion: Illness expectations are difficult to change among patients with advanced cancer. Additional work is needed to identify approaches within oncology practices that foster realistic illness expectations to improve patient decision making.

Trial registration: ClinicalTrials.gov NCT02712229.

Conflict of interest statement

Teresa H. ThomasConsulting or Advisory Role: Healthline Media, Mashup Media Robert M. ArnoldOther Relationship: UpToDate, VitaTalk Douglas WhiteConsulting or Advisory Role: UpToDate Inc Thomas J. SmithEmployment: UpToDateHonoraria: Athenex, Association of Community Cancer Centers (ACCC)Patents, Royalties, Other Intellectual Property: Royalties from Oxford Textbook of Cancer Communication, coeditorOpen Payments Link: https://openpaymentsdata.cms.gov/physician/202382/general-payments Kenneth J. SmithResearch Funding: Nico Corporation (Inst) Yael SchenkerHonoraria: UpToDateNo other potential conflicts of interest were reported.

Figures

FIG 1.

Changes in illness expectations by treatment group. Assessments at baseline and 3 months with realistic responses indicated include the following in italics: When you think about how having cancer might affect your life expectancy, do you think in terms of months, years, or do not know? Goals of therapy are no to get rid of all cancer/yes to get rid of all cancer? How would you describe your current health status: relatively healthy but terminally ill, seriously and terminally ill, relatively healthy, or seriously but not terminally ill? There was no statistical difference in the percentage of patients who remained realistic/became realistic between CONNECT and standard care groups at 3 months for life expectancy, treatment intent, or terminal illness acknowledgment. The majority of patients in both groups responded to illness expectation questions with answers that remained unrealistic at 3 months.

FIG A1.

CONSORT diagram.