Cancer survivors in our study had positive quality perceptions for many aspects of their follow-up care. However, multiple areas for improvement were also identified. The top five items where survivors reported suboptimal quality were related to physician knowledge and health promotion. More than 60% of survivors reported that their physician lacked complete knowledge of how their quality of life had been affected by their cancer and its treatment, and more than 75% of survivors perceived their physician to have a less than ideal understanding of them as a person. To facilitate optimal patient outcomes, the Institute of Medicine's Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
calls for clinicians to adopt a whole-person orientation while interacting with patients. Survivors in our study perceived this to be an area for improvement. More than 50% of survivors also reported suboptimal discussion of things they could do to maintain healthy lifestyles and prevent future illnesses. Although disease prevention and enhancement of well-being have been identified as essential components of survivorship care,4
our data suggest that communication about health promotion during follow-up care visits is limited.
There were several other areas of follow-up care where at least one in four survivors reported suboptimal quality that could be targets for improvement. These included delays in start of appointments, perceived lack of care coordination among the care team, less than ideal help provided by the office staff, and experiences of suboptimal information exchange with the physician. These reports suggest that to deliver optimal follow-up care, quality improvement efforts would need to focus not only on behaviors of individual physicians and health care team members, but also on redesigning workflow in the office practice to improve efficiency, communication, and coordination.
Consistent with existing studies, older survivors reported more positive experiences, whereas survivors who perceived their health to be poorer reported worse experiences.35
Contrary to our expectations, survivors with more comorbidities reported better timeliness of care and physician knowledge. It is possible that cancer survivors who live with multiple comorbidities have more intense interactions with the health care system, making them more experienced consumers. Support for this assertion is also obtained from our finding that survivors who had more contact with their providers in terms of number of visits also reported more positive experiences on timeliness of care and physician knowledge. It is also possible that given busy practices, clinicians tend to selectively pay more attention to their patients who have a greater cumulative disease burden. More studies are needed to disentangle the reasons for the intriguing association between disease burden and patient perceptions of quality.
Consistent with existing studies, Hispanic and non-Hispanic Asian survivors reported worse scores on timeliness of care than non-Hispanic white survivors.15,36–38
Given that survivors who did not have private health insurance also reported worse experiences with obtaining timely care suggests the potential for disparities in access to follow-up care between potentially underserved populations of survivors, such as minorities, the uninsured, and the underinsured, and the rest of survivors. Post hoc analysis exploring the interaction effect of race/ethnicity and insurance status on timeliness of care revealed a nonsignificant interaction, suggesting that being of a minority race/ethnicity and being uninsured or underinsured may be independent risk factors for not receiving timely care. The impact of not receiving timely follow-up care on patient outcomes needs to be explored.
Survivors who had been receiving care from the same physician for more than 2 years reported more positive experiences on all but two quality indicators compared with survivors who knew their physician for less than a year. A longer tenure of the patient-physician relationship may result in better understanding of patient needs by the physician, thus resulting in more positive experiences.39
It is also possible that more positive evaluations among survivors who knew their physician for a longer time are a reflection of a halo effect where survivors are more likely to ignore lapses in quality from a physician with whom they have established a long-term relationship than from one who they do not know well. Length of the patient-physician relationship and quality-of-care perceptions are likely to mutually influence each other, and their relationship can be better teased out within the context of longitudinal study designs.
Perceived quality of information exchange between physicians and survivors had the strongest relationship with overall ratings of care, followed by physicians' affective behavior, physicians' knowledge of the survivor, and survivors' perceptions of coordination of care. These associations further highlight the importance of optimizing the various functions of patient-physician communication as well as communication among the various members of the health care team.40
Interestingly, although survivors reported limited communication related to health promotion, such lack of communication did not have any impact on their overall ratings. These findings suggest that although clinicians may not be devoting adequate time during follow-up care visits to facilitating healthy lifestyles among survivors, cancer survivors themselves may not be expecting such discussions. Whether survivors' lack of expectation about health promotion discussions might be driven by a lack of awareness of the importance of healthy behaviors to their overall health or is a result of their health promotion needs being met by sources other than their follow-up care physician is not clear and needs further exploration.
Our findings should be interpreted in the light of potential limitations. The most important limitation is the cross-sectional nature of the study. Causal implications cannot be inferred from the significant associations reported in this study; findings need to be replicated within the context of longitudinal study designs. We recruited participants from a population-based sample of leukemia, bladder, and colorectal cancer survivors in Northern California. Our findings may not be generalizable to survivors of other common cancers such as breast and prostate cancer or to survivors in other parts of the United States. Further validation of the APECC measures in other cancer survivor populations is needed. Although we were able to compare the experiences of Hispanic and non-Hispanic Asian survivors with those of non-Hispanic white survivors, we could not do the same for non-Hispanic African American survivors because of the small size of the African American subgroup in our sample.
Despite potential limitations, the APECC study provides unique data on the follow-up care experiences of cancer survivors. With the aging of the population and the dissemination of effective therapeutic interventions in oncology, the ranks of cancer survivors are likely to increase substantially in the future. Efforts at optimizing quality of care delivered to these survivors in the future should focus not only on the technical aspects but also on the patient-centered aspects of care. The APECC study lays the foundation for systematic evaluations of patient-centeredness of follow-up care provided to cancer survivors in the United States.