Study Indicates Lacking Knowledge of Palliative Care in the General US Population

A cross-sectional study from patient survey indicates knowledge of palliative care services are lacking across patient populations.

In a population of patients who actively utilized their available health care system in the United States, knowledge of palliative care was low with only a small percentage considered to have adequate knowledge of these services, according to a retrospective cross-sectional study published in Cancer Epidemiology, Biomarkers & Prevention.

Of a total of 3450 noninstitutionalized adults who completed the 2018 NCI Health Information National Trends Study (HINTS) 5, Cycle 2, a multivariable linear regression model revealed that 89% of all participants had inadequate knowledge of palliative care.

“Despite the known benefits of palliative care and its endorsement by the American Society of Clinical Oncology and the National Comprehensive Cancer Network, we have not seen an increased uptake of palliative care by those who need it most,” lead study author Motolani Ogunsanya, PhD, an assistant professor at The University of Oklahoma Health Sciences Center, said in a press release. “A common misconception is that palliative care is only for end-of-life care when, in fact, it can begin at any point in the disease course.”

Palliative care has gained in significance as systemic cancer therapies have evolved into curative or life-sustaining treatments. Instead of only being offered to patients undergoing end-of-life care as hospice treatment, palliative and supportive care includes services and treatment to improve quality of life and provide additional support during chronic disease management. In patients with cancer, early integration of palliative care has the potential to improve outcomes, as well as lower expenditures on medical care and reduce hospital admissions.

In the study, palliative care was self-assessed by the patient in response to the question, “How would you describe your level of knowledge about palliative care,” with possible responses including “I’ve never heard of it,” “I know a little bit about palliative care,” and “I know what palliative care is and could explain it to someone else.” The latter response was used to indicate adequate status in the analysis.

A majority of patients identified as non-Hispanic White (n = 1961), reported having health insurance (n = 3204), and were over 45 years of age (n = 2542). More than half of the total cohort reported having used the health care system at least twice in the past 12 months (n = 1889), with the threshold for higher health care utilization frequency. Roughly half of the patients surveyed reported having “very good” or “excellent” health with most (n = 2511) having some sort of health care check-up within a year.

Patients had higher odds of palliative care knowledge if they frequently utilized their health care system (odds ratio [OR], 3.01; 95% CI, 2.65-3.58; P <.05), were female (OR, 2.15; 95% CI, 1.31-3.59; P <.05), were married (OR, 2.02; 95% CI, 1.14-3.59; P <.05), or had a college degree (OR, 13.83; 95% CI, 1.71-12.04; P <.05).

Additionally, having a regular course of health care services corresponded with a 3-times higher odds of adequate palliative care knowledge (OR, 2.67; 95% CI, 1.37-1.90; P <.05) whereas not having a cancer diagnosis equated to 0.49-times lower odds (OR, 0.49; 95% CI, 0.41-0.89; P <.05).

After stratifying for cancer history and adjusting for regular health care utilization, none of the predictive variables in the overall population were found to result in a statistically significant association with palliative care knowledge.

“The high proportion of respondents in our study without adequate knowledge of palliative care suggests how the inherent benefits of palliative care in alleviating pain and symptoms from chronic illness are largely unknown to a wide number of people who might someday benefit from it,” the authors wrote. “Our results of demographics and socioeconomic correlates of increased palliative care knowledge are congruent with prior evaluations of factors associated with palliative care knowledge in US populations.”

Limitations of the study included the investigators’ inability to differentiate between respondents diagnosed with a serious illness other than cancer and the cross-sectional design of the survey, which made it impossible to infer causal relationships between constructs or items in the survey. Future research should aim to incorporate more comprehensive measures of palliative care knowledge, as adequate vs inadequate status in this study was based on 3 factors.

Reference

Ogunsanya ME, Goetzinger EA, Owopetu OF, et al. Predictors of palliative care knowledge: findings from the Health Information National Trends Survey. Cancer Epidemiol Biomarkers Prev. 2021;30(7):1433-1439. doi:10.1158/1055-9965.EPI-20-1790