The Journal of Oncology Nursing & Survivorship spoke with Diane Robinson, PhD, at the fifth annual Academy of Oncology Nurse & Patient Navigators (AONN+) conference, held at the Walt Disney [ Read More ]
June 2015 VOL 6 NO 3
Patients’ Experience with Cancer Care: Impact of the National Cancer Institute Community Cancer Centers Program
Lauren McCormack, PhD
Lauren McCormack, PhD1; Katherine Treiman, PhD, MPH1; Carla Bann, PhD1; Shelton Jones, MS1; Irene Prabhu Das, PhD2; Julia Rowland, PhD2; Neeraj Arora, PhD2,3; Steven Clauser, PhD2,3
1RTI International; 2National Cancer Institute; 3Patient-Centered Outcomes Research Institute
This work was completed while Drs Arora and Clauser were employed at the National Cancer Institute.
|Background: The National Cancer Institute Community Cancer Centers Program (NCCCP) aimed to provide high-quality care in community cancer care settings and to identify what contributes to a successful patient experience.
Objective: This study evaluated the impact of the 3-year NCCCP pilot program.
Methods: We conducted 2 cross-sectional surveys of patients with cancer (Wave 1, N = 2009 respondents; Wave 2, N = 1946 respondents) and patient focus groups. Survey respondents and focus group participants were aged 21 years or older. Surveys were fielded 18 months apart, with Wave 1 occurring early in the pilot program. We conducted focus groups in randomly selected sites. Data collection comprised mail, online, and telephone surveys, as well as in-person focus groups.
Results: Respondents in Wave 2 were significantly more likely to be helped by a patient navigator (P <.001), have a cancer care team that was always well informed and up-to-date about their care (P = .026), and reported better access to care (P = .001). Patient navigation mediated the relationships between patient characteristics and patient–provider communication, access to care, and coordination of care. These outcomes correlated with patients’ higher overall rating of their cancer care experience.
Conclusions: The findings show that patients’ overall rating of their cancer care experience was high and that they benefited from NCCCP programs and services, particularly patient navigation.
The National Cancer Institute (NCI) Community Cancer Centers Program (NCCCP) was a 3-year pilot program designed to bring the latest scientific advances and the highest level of innovative cancer care to patients in their home communities. Launched in 2007, the NCCCP involved a public–private partnership with 10 individual hospitals and healthcare systems across the United States.1 The program comprised 6 components, including (1) reducing disparities in care, (2) enhancing clinical trials research, (3) increasing capacity to collect, store, and analyze biospecimens, (4) improving the use of health information technology, (5) emphasizing survivorship and palliative care, and (6) improving access to quality cancer care.
Quality cancer care is complex and depends on good coordination and communication among providers.2
To improve the quality of cancer care, the NCCCP prioritized a multidisciplinary cancer care approach that involved developing multidisciplinary cancer care conferences and clinics and implementing patient navigation services to improve care coordination and ensure that all patients receive timely and appropriate care.3
NCI defines patient navigation as a service throughout the cancer care continuum designed to “ensure that individuals with suspicious cancer findings receive timely diagnosis and treatment.”4
Models of patient navigation vary, with most sites using a combination of nurses and other staff (eg, social workers) as navigators.4,5 Common elements include the navigator’s multifaceted role in facilitating processes of care, assisting patients to overcome barriers, and providing information and support.6,7
NCI contracted with RTI International to conduct an independent evaluation of the NCCCP pilot program. For this study, we examined how the NCCCP might have affected patients’ perspectives regarding several outcomes, including access to care, coordination of care, communication with the cancer care team, and overall rating of care. We looked at the effect of patient navigation services on these outcomes. This article pre-sents the findings from the patient survey and patient focus groups, which provided quantitative and qualitative perspectives about quality cancer care within the NCCCP centers.
To examine if and how patients’ experiences changed as the NCCCP pilot program developed and became more established at the cancer centers, we conducted a cross-sectional patient survey at 2 time points, with each administration involving a different sample of patients—the Wave 1 survey early in the pilot program (from February to July 2009) and the Wave 2 survey approximately 18 months later (from January to April 2011). The multimode survey (mail, online, telephone) was available in English and in Spanish. Because few respondents used the telephone version in the Wave 1 survey, it was not included for the Wave 2 survey.
To explore access, coordination, and other aspects of care, and to provide additional context, we also conducted patient focus groups midway between the 2 surveys (between May and September 2010). Focus groups addressing coordination of care (N = 46) and access to care (N = 40) were each held in 5 NCCCP sites randomly selected from the 10 study sites. To be eligible for the coordination-of-care groups, patients either were receiving care at the cancer center or had completed care within the past 3 months. For the access-to-care groups, patients had to have been screened in the past 18 months and had follow-up testing at the cancer center.
We conducted the survey in each of the 10 NCCCP cancer centers, which are located across the United States (Figure 1).1 To be eligible to participate in the survey, patients had to be aged 21 years or older and to have experienced one or more cancer outpatient visits since the beginning of the data collection period.
For the Wave 1 survey, a total of 11,828 patients with cancer met the study eligibility criteria; for the Wave 2 survey, a total of 14,174 patients with cancer met the criteria. We used the “no personal identification disclosed” sampling approach8 in both waves to select a systematic probability sample of 475 patients from each cancer center per wave, which supported multiple subgroup estimates within each cancer center and sufficient size to detect center-level differences of 10% for 2-tailed tests for proportions as small as 0.15 versus 0.25, with an alpha level of 5%. The conventional power of 80% was used, while assuming a combined patient eligibility response rate of approximately 52%.
The response rate was 51.8% for the Wave 1 survey and 48.9% for the Wave 2 survey, based on American Association for Public Opinion Research Rule #4,9 which counts partial responses as responses and assumes ineligibility among the “no contacts” at a similar rate as those surveyed.
We conducted a nonresponse bias assessment comparing patient sampling rates by specific domains—including cancer type, race/ethnicity, cancer stage, and sex—versus the proportion of respondents obtained from among all respondents in these respective domains. We found significant deviations in several domains, and, to reduce the bias, we computed nonresponse-adjusted sample weights using the following predictors: cancer disease site, cancer stage, treatment type, race/ethnicity, and age-group. The sample-design weights were adjusted upward by calculating the weight adjustments in the Statistical Analysis System (SAS) using RTI’s generalized exponential model developed by Folsom and Singh.10
Patient Survey Measures
The patient survey instrument included the following outcomes and other measures:
Access to care. This scale is based on 3 questions: “In the last 12 months, how often…(1) did the people on your cancer care team help you get the medical appointments you needed? (2) were you able to get an appointment as soon as you wanted at the cancer center? and (3) were you able to get the tests and other procedures you needed done without delay?” These items used a 5-point response scale: never, rarely, sometimes, usually, always.
Given the skewness of the items, we computed scale scores based on the number of items for which respondents answered “always” (vs “usually” to “never”). The Cronbach alpha for the scale was 0.61 in Wave 1 and 0.71 in Wave 2.
Coordination of care. Respondents reported how often their cancer care team (1) seemed to be well informed and up-to-date about their care, and (2) seemed to work together to help them get the care they needed. These items used a 5-point response scale: never to always.
Communication with the cancer care team. This scale is based on 5 questions that asked, “During the past 12 months,…(1) how well did members of the cancer care team explain plans for treatment” (5-point scale: poor, fair, good, very good, excellent); how often did members of the cancer care team (2) pay enough attention to your feelings and emotions?, (3) talk in terms you could understand?, (4) check to be sure you understood everything?, and (5) encourage you to ask questions?” (5-point scale: never to always). The scale score is based on the number of items for which respondents answered “always” or “excellent.” The Cronbach alpha was 0.85 in Wave 1 and 0.86 in Wave 2.
Patient navigation. Respondents reported whether or not they received assistance from a patient navigator in the past 12 months.
Overall rating of care. Respondents rated the care they received at their cancer center in the past 12 months using a scale from 1 (worst possible care) to 10 (best possible care).
We conducted the following analyses to address the evaluation questions. First, to assess how patients’ experiences changed over time, we compared outcomes between the Wave 1 and Wave 2 surveys, using chi-square tests for categorical items (eg, NCCCP site) and t-tests for continuous items (eg, age). Because the 2 coordination-of-care items (ie, cancer care team was well informed and up-to-date about patient’s care, and cancer care team works together) were strongly negatively skewed, we dichotomized these items into responses of “always” versus all other responses. Second, to examine what sociodemographic characteristics and other factors were associated with patients’ experiences, we conducted logistic regression analyses to identify predictors of help from a navigator and coordination of care. Third, to examine to what extent patients’ experiences with access to care, coordination of care, and communication accounted for their overall rating of care, we conducted linear regression models of scale scores for communication and access to care and overall rating of the care experience.
Each model incorporated the survey weights and included site, survey wave, age, race/ethnicity, education, insurance, cancer type, cancer treatment, and received all cancer care at the NCCCP center. All models included help from a navigator, except for the model with this variable as an outcome. Finally, we conducted a path analysis to examine the role of help from a navigator as a possible mediator of patient outcomes.
All analyses were conducted using SAS version 9.3, except for the path analysis, which was conducted using Mplus version 6.12. The results show the number of patients and the weighted percentage estimates that account for survey design and differential nonresponse.
Patient Survey Findings
The Wave 2 survey included significantly higher percentages of nonwhite respondents (20% vs 17%), respondents who had breast cancer (36% vs 31%), and respondents who received radiation treatment (51% vs 48%) than the Wave 1 survey (Table 1). Participation also varied significantly across the 2 waves by site, perhaps because of fluctuations in enrollment over time (P <.001). We found no significant differences at P <.05 for age; education; income; insurance; colorectal, lung, or prostate cancer diagnosis; surgery or chemotherapy treatment; or whether the patient received all cancer care at an NCCCP center.
In the bivariate analyses of outcomes, Wave 2 survey respondents were significantly more likely to be helped by a navigator (30% vs 22%; P <.001) and have a cancer care team that was always well informed and up-to-date about their care (80% vs 76%; P = .026). Wave 2 respondents also rated their access to care significantly higher (mean [statistical error] = 74  vs 70 ; P = .001). However, respondents’ overall rating of their care experience was not significantly different over time. The lack of change on this measure may be due to a ceiling effect, as respondents’ overall rating of their care was very high at baseline.
In the logistic regression models, after controlling for other factors, the adjusted odds ratio (OR) of respondents who reported receiving help from a navigator significantly increased from the Wave 1 to the Wave 2 survey: OR = 1.40 (95% confidence interval [CI], 1.18-1.66); P <.001 (Table 2). Respondents who were non-white, who were on Medicaid (vs private insurance), who had breast cancer, who received chemotherapy, and who received all care at the NCCCP center were also significantly more likely to receive navigation assistance. Older respondents and those with higher education (high school graduate/some college) were significantly less likely to receive navigation assistance.
Respondents who received help from a navigator reported better coordination of care (Table 2). These respondents were significantly more likely to indicate their cancer care team was always well informed and up-to-date about their care (OR = 1.68 [95% CI, 1.34-2.11]; P <.001) and that their cancer care team always works together (OR = 1.58 [95% CI, 1.23-2.02]; P <.001). Receiving all cancer care at the NCCCP site was also positively associated with coordination of care—specifically, the cancer care team was always well informed and up-to-date about their care (OR = 1.62 [95% CI, 1.34-1.96]; P <.001) and the cancer care team always works together (OR = 1.92 [95% CI, 1.56-2.35]; P <.001). Greater age was associated with higher odds of reporting that their cancer care team is always well informed and up-to-date about their care. Nonwhite respondents were less likely to report that their cancer care team always works together.
Consistent with the coordination-of-care findings, respondents who received navigation assistance reported better communication with their cancer care team and better access to care. Also, their overall rating of their care experience was higher, controlling for other factors (P <.001; Table 3). Similarly, respondents receiving all of their care at the NCCCP center had more positive responses for communication, access to care, and their overall rating of their care experience (P <.001). Respondents with lung cancer reported significantly lower communication scores. Access-to-care scores increased over time (Cohen’s d = 0.10). Respondents who were college graduates reported less access to care than respondents with less than a high school education. Age was positively related to ratings of the care experience, with older respondents reporting higher ratings of their care experience. In addition, respondents who were high school graduates rated their care experiences higher than those with less than a high school education.
Finally, we explored the role of a patient navigator as a mediator between (1) patient demographic and cancer-related characteristics and (2) patient outcomes, controlling for site. The hypothesized model fit well (Comparative Fit Index = 0.96, Tucker-Lewis Index = 0.94, Root Mean Square Error of Approximation = 0.02; Figure 2). Having a navigator was associated with higher communication and access-to-care scores and better coordination of care, which, in turn, were associated with higher overall ratings of the care experience. In addition, having a navigator was directly associated with higher overall ratings of care.
Focus Group Findings
The focus group findings add contextual insight regarding the important role patient navigators played in enhancing the patient experience in terms of access, coordination, and communication. Focus group participants reported a wide range of assistance from the navigators, including organizing follow-up testing after screening, providing information and answering questions, helping them understand their diagnosis and the treatment plan, offering emotional support, linking them with resources in the hospital and the community, scheduling appointments, and accompanying them to appointments. Key focus group themes and examples with illustrative participant quotes are provided in Table 4.
Capturing patients’ perspectives about quality of care is critical when evaluating a pilot program like the NCCCP. Overall, the evaluation findings underscore that patients had a positive experience at the NCCCP centers and that they particularly valued patient navigation services. The benefits of patient navigation reported in the literature include higher cancer screening rates and less time elapsed between abnormal screening findings and diagnosis.11-23 Navigation is particularly important in the treatment phase, because this phase often involves complex, multimodal treatment and multiple specialists over an extended period. However, the findings are mixed as to whether patient navigation improves treatment adherence and evidence-based quality of care.20 Studies have found that navigation services typically increase patient satisfaction with care24-29 and that patients value support from navigators.30,31
Our study examined patient navigation in community cancer centers in diverse geographic locations, serving diverse patient populations, and focusing on the treatment phase of care. Most prior patient navigation studies were limited to a specific cancer type (particularly breast and colorectal) and were conducted at a single or geographically confined set of sites. Also, most studies focused on cancer screening, although more recent studies have included patients at different points along the care continuum.7,20,32 Donelan and colleagues33 examined patient navigation and patients’ perceptions about ease of access to care. However, we are unaware of any quantitative studies that have examined the link between patient navigation and patients’ perceptions about coordination of care or communication with their cancer care team, in a diverse set of sites and patient populations.
When the NCCCP was launched, the approach for providing navigation services varied widely across the cancer centers.4,5 During the pilot program, the participating cancer centers established or strengthened navigation programs and shared strategies and approaches. Across the network, the sites shared best practices and collaborated to develop tools to facilitate patient navigation,4 possibly contributing to the success of the NCCCP navigation services. The proportion of patients receiving navigation services increased from 22% in the Wave 1 survey to 30% in the Wave 2 survey, and the patients helped by a navigator benefited in terms of their experiences with access to care, coordination of care, and communication with their cancer care team. In interpreting the survey findings, note that the Wave 1 survey was not a true baseline, because some of the participating cancer centers had already initiated program development. However, the survey was conducted early in the pilot program.
Nonwhite patients and patients receiving Medicaid were more likely to report patient navigation assistance. Patients with high school/some college were less likely to be assisted by a navigator. Together these findings suggest that the navigation services were successful in reaching underserved patients and furthering the NCCCP goal of addressing disparities in cancer care.
Across the NCCCP sites, access to care improved from the Wave 1 survey to the Wave 2 survey, meaning that patients were more likely to get medical appointments as soon as they wanted and get tests and procedures without delay. The focus group data suggest that improvements in access to care could be tied directly to navigation services; navigators helped patients secure appointments and arranged transportation when needed. Access-to-care improvements might also be linked to effective coordination among the cancer care team, possibly due to multidisciplinary cancer care conferences (further study is warranted on the effect of multidisciplinary cancer care conferences on patients’ experiences with care coordination). From the patient perspective, effective care coordination involves assistance in navigating the complex healthcare system, sufficient and timely information about the care plan, and effective interactions among all those involved in the patient’s care.31
Patient-centered communication is integral to high-quality cancer care.34-38 Good communication between patients (and their family members and caregivers) and their cancer care team is critical throughout the cancer care continuum, beginning with communication that helps patients handle the emotional impact of a cancer diagnosis. Although patient-centered communication was not a direct goal of the NCCCP, it was tied to efforts to increase access to quality care and was central to navigation services. Although communication scores did not change significantly over time, patients generally reported positive communication experiences. Furthermore, patient navigation assistance mediated communication. This finding may reflect the role navigators play in providing informational and emotional support, as evidenced in the focus group findings.
Overall, the NCCCP evaluation findings underscore that patients had a positive experience at the NCCCP sites and that they particularly valued patient navigation services. This contributes to our understanding of the importance of patient navigation in achieving high-quality cancer care and enhancing the patient experience.16,39,40
Given that the new cancer program accreditation standards of the American College of Surgeons Commission on Cancer focus on patient navigation as a key component of the continuum of care services,41 we are likely to see tremendous growth in patient navigation programs.42 As these programs grow, it will be impor-tant to further assess the impact on treatment adherence and evidence-based quality of care, and to address common challenges, such as the lack of staff, administration, and physician support for patient navigation programs; difficulty finding qualified navigators42; and the need to develop measures to assess the impact of patient navigation.16,39,40,43
Acknowledgments: This project was funded by the National Institutes of Health, National Cancer Institute, under Contract No. GS-10F-0097L. We are grateful to the leaders and staff at the participating NCCCP centers who facilitated the data collection activities. The findings and conclusions presented in this article are those of the authors and do not necessarily represent the official position of the National Cancer Institute or the Patient-Centered Outcomes Research Institute.
Author Disclosure Statement: All authors reported no conflicts of interest.
Corresponding Author: Katherine Treiman, PhD, MPH; RTI International, 203 Dale Drive, Rockville, MD 20850. E-mail: Ktreiman@rti.org.
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