Journal Article Annotations
2024, 1st Quarter

Palliative Care

Annotations by Barbara Lubrano, MD.
April, 2024

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

PUBLICATION #1 — Palliative Care

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

Lindsay M Schlichte, Jordan Hildenbrand, Steven Wolf, Kris W Herring, Jesse D Troy, Thomas W LeBlanc

Abstract: J Pain Symptom Manage. 2024 Feb;67(2):115-125. doi: 10.1016/j.jpainsymman.2023.10.013. Epub 2023 Oct 15.

Context:
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.

Methods:
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.

Results:
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).

Conclusion:
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.

Key message:
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.

Keywords:
Palliative care; oncology; perceptions; surveys and questionnaires.

Annotation

The finding:
Familiarity with palliative care (PC) was significantly associated with time since diagnosis, suggesting that the increase in familiarity and knowledge is in part due to the time that patients have spent within healthcare facilities and interacting with healthcare providers. Interestingly, patient knowledge about PC was not associated with the type or stage of cancer. Additionally, having an aggressive cancer was not associated with an interest in receiving PC services. This study highlights the ongoing “uneasiness” that still exists despite having knowledge of PC, suggesting that patients’ perception of PC is still associated with having a more advanced illness, or a terminal or imminently life-threatening diagnosis.

Strength and weaknesses:
The study was performed at a tertiary care academic cancer center, and findings may not be generalized to other care settings. There was a relative lack of diversity in race, ethnicity, education, and socioeconomic status, with exclusion of non-English proficient patients, or patients with no access to the internet. Additionally, questionnaires used were not validated. Additionally, the study recognized selection bias, where patients’ prior experience or knowledge of PC potentially influenced their decision to participate in the study. Strengths included that thisoffers an exploration into what patients with cancer know about PC and highlights the barriers that still exist to access services, like the misunderstanding regarding the full scope of care that PC can provide.

Relevance:
CL psychiatrists have a key role in educating and address the uneasiness and the misunderstanding present among patients and healthcare providers, including oncologists, regarding the cope and benefits of early access to PC services.