Although cancer remains as a leading cause of death in the United States, a growing population of individuals lives longer following a cancer diagnosis.8
The multitude of physical and psychosocial co-morbidities experienced by cancer patients during and after treatment16–24
demands an integrated model of care that comprehensively addresses the varying needs of these individuals. Whereas several recent studies have consistently demonstrated the benefit of SPCS in improving symptom burden, health-related quality of life, and patient satisfaction,28–33
our study suggests that one in two outpatient cancer patients have not used any of the existing and available SPCS since their diagnosis. Patients with lower levels of education, a diagnosis of lung cancer, or those undergoing active treatment are less likely to receive SPCS. The largest patient-reported barriers to access are lack of physician referral and lack of awareness.
SPCS users in our study were more likely to have a higher level of education, a trend that is consistent with literature correlating higher education levels to improved access to health care and better health outcomes.34–38
Patients with less education and consequently low health literacy may have greater information needs regarding the benefits and availability of SPCS as a part of their cancer care. Although in our study lower educational attainment did not correlate with a perceived lack of awareness of SPCS, a knowledge gap may indeed exist in this subset of patients. More research is needed to identify specific social and technological barriers faced by patients with low education, and there is clearly a need to increase the visibility of SPCS throughout the continuum of cancer care.
Lung cancer patients were half as likely as patients with breast, GI, and other solid malignancies to seek out supportive and palliative care services. This finding is particularly noteworthy in the context of data showing that lung cancer survivors suffer from a higher burden of physical and psychological problems, co-morbid conditions, and lower health-related quality of life and health utility when compared with survivors of breast, colorectal, and prostate cancers.39–45
Although further research is required to understand the specific reasons for this phenomenon, one possible explanation is that lung cancer patients have a shorter median survival after diagnosis compared with patients with breast cancer or colorectal cancers.8
As a result, these patients have less time overall in which to pursue SPCS, and in the limited time available, may choose to pursue anti-cancer therapies over supportive care and symptom management. Interestingly, results of a recent randomized trial showed that introduction of early palliative care in patients with metastatic lung cancer demonstrated improvements in health-related quality of life and mood, less aggressive care at the end of life, and longer survival.28
Thus in this study, the subset of lung cancer patients was identified as an underserved population, and one that may benefit significantly from an integrated framework of care that emphasizes early referral to SPCS in addition to standard therapy.
Patients in this study with a history of chemotherapy and radiation treatment were more likely to use SPCS in the multivariate analysis, likely representing the high symptom burden that often results from these treatments. However, patients undergoing current treatment were less likely to use SPCS, indicating that patients with a greater need for SPCS (i.e., those actively receiving chemoradiation) may not access these services until they have completed treatment. Patients in the post-treatment phase of cancer care, particularly those whose disease is cured or in remission, may also be more hopeful and willing to focus on symptoms and quality of life versus pursuing second-line or salvage therapy. These patients have also likely had a longer exposure to oncology care than newly diagnosed patients, thereby increasing the chances of exposure to SPCS. Seamless integration of supportive care with conventional therapies would help patients receive relief of symptom distress in a timelier manner.
The most common self-reported barriers to use of SPCS were lack of physician referral (23%) and lack of awareness (22.4%) that such services were available at this cancer center. These findings among oncology outpatients are consistent with the current data on barriers to end-of-life care in the hospice population.46–48
Our findings underscore the importance of educating physicians, other health care providers (e.g., nurses, social workers), and patients about the value and availability of SPCS in order to improve the access to these services and ultimately improve patient outcomes.
Within populations of cancer patients, nonwhites (specifically African Americans) and patients of lower economic status have been found to have less exposure to information about palliative care.49,50
Although ethnicity was not an independent predictor of SPCS use in our study, nonwhite participants reported lack of provider referral as a significant barrier. Prior research suggests that nonwhite patients were less likely to engage in shared decision making than whites51–52
and are also less likely to receive effective cancer pain management and palliative care.53–58
Because values and perspective may differ by age,59
gender, and race/ethnicity, so the needs and expectation of different subgroups are likely to be different as well; the design of patient-centered PSCS should not be one-size-fits-all, but should carefully incorporate diverse social cultural perspectives.
This study has several limitations. First, there were no data collected on patient-reported needs, which would give a more accurate estimate of unmet SPCS needs in the oncology patient population. Prior studies have suggested that measures of effectiveness of palliative care interventions are most useful when analyzed against the background of the existing needs of patients,60–62
which highlights the potential need for interviews with patients or a detailed set of questions relating to specific preferences about the extent, type, and duration of services that patients prefer in order to understand whether the services currently offered at most cancer centers fulfill these needs. Second, the study relied on self-report, which is subject to recall bias and therefore is not a direct measure of SPCS use among oncology outpatients. This may have contributed to either underreporting or overreporting of SPCS use by patients. Third, although we reported rates of utilization of SPCS, we did not explore patient or physician attitudes and beliefs toward these services, both of which are likely to affect uptake and utilization. Fourth, we queried only patient-perceived barriers without investigating physician-perceived and system barriers, two potentially important challenges to providing optimal, integrated cancer care. Lastly, the study was conducted at a single, urban, academic comprehensive cancer center, so the findings may not be generalizable to community cancer centers.
To our knowledge, this study is one of the first to characterize the difference between users and nonusers of SPCS in the nonhospice outpatient oncology setting. Although the majority of oncology patients likely experience a significant symptom burden, slightly less than half of the patients surveyed accessed supportive care services. This discrepancy represents an area of unmet need in the cancer care algorithm, and is an area for further study. We also identified common patient-reported barriers to use of SPCS. Further research applying an appropriate conceptual model is needed to elucidate the complex relationships among the unmet needs, determinants of SPCS use, and the barriers to access to these services. In doing so, we will move closer to creating an integrated model of cancer care that better addresses the physical and psychosocial needs that patients face during and beyond cancer treatment.