Knowledge of Palliative Care and Barriers to Access Among Outpatients with Cancer

• Published in: Journal of pain and symptom management 2024-02, Vol.67 (2), p.115-125
• Main Authors: Schlichte, Lindsay M., Hildenbrand, Jordan, Wolf, Steven, Herring, Kris W., Troy, Jesse D., LeBlanc, Thomas W.
• Format: Article
• Language: English
• Subjects: Cross-Sectional Studies; Hospice and Palliative Care Nursing; Humans; Neoplasms - therapy; Oncology; Outpatients; Palliative Care; Perceptions; Surveys and Questionnaires
• ISSN: 0885-3924; 1873-6513; 1873-6513
• DOI: 10.1016/j.jpainsymman.2023.10.013

Palliative Care (PC) is poorly understood by laypersons. However, little is known about what ambulatory patients with cancer understand about PC or what barriers to access exist. Outpatients undergoing cancer treatment completed a survey evaluating their familiarity and knowledge of PC, (Palliative Care Knowledge Scale; PaCKS), feelings towards PC (before and after reading a definition of PC), barriers to PC, and prognostic understanding. We summarized responses descriptively and used logistic regression models to examine variables associated with familiarity and interest. The survey response rate was 32%. Of 151 participants, 58.9% reported familiarity with PC. The average PaCKs score was 11.9 out of 13 (standard deviation, 1.4), with 46.4% receiving a perfect score, indicating high knowledge of PC. Patients diagnosed more than one year ago had significantly increased odds of being familiar with PC (OR 2.93; 95% CI 1.37-6.25). More participants reported future interest in PC compared to current interest (74.2% vs 44.4%, respectively). Patients with stage III or IV cancer had significantly increased odds of having a current interest in receiving PC compared to patients with stage I or II disease (OR 2.66; 95% CI: 1.05, 6.76). Participants reported feeling significantly less anxious and more reassured after reading a standardized definition of PC (p < 0.05). Outpatients with cancer who are being treated at a large academic cancer center exhibit high awareness and knowledge of PC, but anxiety toward PC persists. Factors beyond knowledge may perpetuate the delayed or lack of involvement with PC. In this cross-sectional study of outpatients with cancer, findings suggest that high knowledge of PC may co-exist with a lingering uneasiness towards the service. Additionally, factors beyond knowledge, such as logistic barriers, anxiety, and oncologists' preference may be perpetuating the delay or lack of involvement in PC.