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. Author manuscript; available in PMC: 2022 Apr 1.
Published in final edited form as: J Cancer Surviv. 2020 Sep 18;15(2):333–343. doi: 10.1007/s11764-020-00934-3

Associations between Shared Care and Patient Experiences among Older Cancer Survivors

Michael T Halpern 1, Julia Cohen 2, Lisa M Lines 2,3, Michelle Mollica 1, Erin E Kent 4
PMCID: PMC8508880  NIHMSID: NIHMS1632095  PMID: 32948992

Abstract

Purpose:

Cancer survivors have unique medical care needs. “Shared care,” delivered by both oncologists and primary care providers (PCPs), may better address these needs. Little information is available on differences in outcomes among survivors receiving shared care versus oncologist-led or PCP-led care. This study compared experiences of care for survivors receiving Shared Care, Oncologist-led, PCP-led or Other care patterns.

Methods:

We used SEER-CAHPS data, including NCI’s SEER registry data, Medicare claims, and Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey responses. Medicare fee-for-service beneficiaries age≥65 years in SEER-CAHPS with breast, cervical, colorectal, lung, renal, or prostate cancers or hematologic malignancies who responded to a Medicare CAHPS survey≥18 months post-diagnosis were included. CAHPS measures included ratings of overall care, personal doctor, specialist physician, health plan, prescription drug plan, and five composite scores. Survivorship care patterns were identified using proportions of oncologist, PCP, and other physician encounters. Multivariable regressions examined associations between care patterns and CAHPS outcomes.

Results:

Among 10,132 survivors, 15% received Shared Care; 10% Oncologist-led; 33% PCP-led; and 42% Other. Compared with Shared Care, we found no significant differences in experiences of care except for getting needed drugs (lower scores for PCP-led and Other care patterns). Sensitivity analyses using different patterns of care definitions similarly showed no associations between survivorship care pattern and experience of care.

Conclusions:

Within the limitations of the study dataset, survivors age 65+ receiving Shared Care reported similar experiences of care to those receiving Oncologist-led, PCP-led, and Other patterns of care.

Implications for Cancer Survivors:

Shared care may not provide survivor-perceived benefits compared with other care patterns.

Keywords: Survivorship, Oncology, Physician Practice Patterns, Patient Satisfaction, Claims Analyses, SEER Program

INTRODUCTION

In January 2019, there were approximately 16.9 million cancer survivors in the United States; this is expected to grow to almost 22.2 million by 2030.[1] Cancer survivors may have unique medical care needs related to chronic/late-occurring effects of cancer or cancer treatment and require specialized survivorship care services to ensure all survivors’ health needs are met.[2] To address survivors’ needs and improve outcomes, “shared care”, involving survivors’ medical care delivered by both oncologists and primary care providers (PCPs), may increase care coordination/communications between health care providers; decrease fragmentation of care; and improve patient experience of care. Other survivorship care models include programs led by PCPs, oncologists, and other health care providers.[3] However, little is known about outcomes for different types of survivorship care, and there is no widely agreed-upon definition of “shared care”. Furthermore, shared care may require additional time and effort from healthcare providers for communications and care coordination, which may increase provider burden.[3, 4]

Few studies have explored associations between receipt of survivorship care services and types of physicians providing survivorship care. Yu et al. reported that colorectal cancer (CRC) survivors who received at least one visit from an oncologist or gynecologist were more likely to receive mammograms than were survivors who received care only from PCPs.[5] Snyder et al. reported that CRC survivors with at least one visit with both oncologists and PCPs were more likely to receive preventive care services than those seeing only PCPs or oncologists.[6] Men seeing any PCPs in the first-year after prostate cancer diagnosis were more likely to receive certain preventive care services than those receiving care from oncologist; however, there were no significant differences five-years post-diagnosis.[7]

Research examining associations between survivors’ experience of care and their types of healthcare providers is generally limited to patient satisfaction or follow-up care ratings from survivors in limited geographic regions.[812] Weaver et al. found no significant difference in self-reported follow-up care ratings between survivors identifying oncologists vs. PCPs as their main physician.[8] Emery et al. reported no significant differences in distress, prostate- specific quality of life, patient satisfaction or unmet needs among prostate cancer survivors receiving usual care vs. shared care.[11] In contrast, Grunfeld et al. reported significantly greater satisfaction among breast cancer survivors in England who had follow-up care with general practice groups (i.e., PCPs) vs. hospital outpatient (specialist) clinics.[12]

SEER-CAHPS is a recently developed data resource linking patient experience information from the Medicare Consumer Assessment of Healthcare Providers and Systems (Medicare CAHPS®) Survey with clinical information from NCI’s Surveillance, Epidemiology, and End Results (SEER) cancer registry program and Medicare Fee-for-Service (FFS) claims.[13, 14] This dataset includes sociodemographic and clinical characteristics and experiences of care among a large, national sample of individuals diagnosed with cancer. Recent SEER-CAHPS studies examined experience of care among cancer survivors and individuals with cancer in the last year of life.[15, 16]

To better understand relationships between physician specialties involved in survivorship care and survivors’ experience of care, we used SEER-CAHPS to examine associations of PCP-led, Oncologist-led, or Shared Care survivorship care patterns with survivors’ experiences of care, using a data-derived classification of shared care. We hypothesized that shared care would be an enhanced collaborative process. That is, shared care would potentially facilitate communication/coordination among health care providers and between the survivor and the health care team, leading to improved experience of care among survivors.

METHODS

Study Population

The study population included individuals in SEER-CAHPS diagnosed 2000–2011 with hematologic malignancies or breast, cervical, colorectal, lung, renal, or prostate cancer. Those diagnosed with in situ, metastatic, or unknown stage disease (N=9,376) or <65 years at diagnosis (N=13,543) were excluded. Thirteen males with breast cancer were also excluded. SEER-CAHPS data are available from NCI; the process for obtaining these data is outlined at https://healthcaredelivery.cancer.gov/seer-cahps/obtain/.

As the CAHPS survey (described below) asks respondents to consider the previous six months of care, individuals included in the study were required to have responded to a Medicare CAHPS survey≥18 months after diagnosis and to have been continuously enrolled in FFS Medicare A and B at least 6 months before and 6 months after completing a CAHPS survey. This ensured that survey completion occurred during a 12-month period of survivorship care starting at least 12 months after diagnosis with stable, continuous Medicare A/B enrollment. Individuals with <2 physician encounters in this 12-month period were excluded (N=14,836), as a survivorship care pattern could not be assigned for those with only a single physician visit.

Survivorship Care Patterns

Cancer survivors were classified in one of four mutually exclusive survivorship care pattern groups based on their percentages of oncologist, primary care, or other types of physician encounters: Shared Care, Oncologist-led, PCP-led, and Other (Figure 1). Total number of physician encounters and physician specialty at each encounter were determined using office/outpatient evaluation and management (E&M) visits (CPT 99201–99205, 99211–99215) from Medicare claims. Survivorship care pattern were determined based on physician specialty from all E&M encounters in Medicare claims for the 12 month study period (6 month before through 6 months after completing a CAHPS survey); the CAHPS survey therefore captured experience of care in the middle of a period of continuous Medicare Part A/B enrollment. Advanced practice provider encounters (i.e., NP or PA visits) are generally captured in these claims data under the associated physicians’ specialty. The proportion of visits by physician type and number of visits for each survivorship care model are presented in Table 1.

Figure 1:

Figure 1:

Patterns of care definitions used in this study. Figure 1 illustrates criteria used in base case analyses and sensitivity analyze to categorize survivors as receiving Oncologist-led, PCP-led, Shared Care, or Other survivorship care patterns.

Table 1.

Characteristics of the study population by survivorship care pattern (base-case)

Shared Care (n=1,525) Oncologist-Led (n=1,013) PCP-Led (n=3,314) Other (n=4,280)
VARIABLE N Weighted % N Weighted % P-Value N Weighted % P-Value N Weighted % P-Value
Female 667 39.4% 425 41.1% .535 1,831 54.2% < .001 1,707 39.7% .895
Age .085 < .001 < .001
 65–69 66 3.6% 71 6.1% 88 2.7% 120 2.3%
 70–74 420 28.9% 307 29.6% 683 20.8% 909 20.8%
 75–79 459 29.6% 298 27.7% 956 28.4% 1,273 30.5%
 80–84 340 21.3% 216 23.1% 802 23.1% 1,089 24.5%
 85+ 240 16.6% 121 13.5% 785 25.0% 889 21.9%
Education .459 .010 .162
 <HS 225 13.9% 164 14.9% 604 17.1% 566 12.0%
 HS Grad/GED 425 27.7% 299 28.5% 993 30.7% 1,100 25.5%
 Some College 345 23.4% 222 24.2% 757 23.5% 938 22.2%
 >=College Grad 431 28.6% 250 24.4% 716 21.5% 1,382 33.1%
 Missing 99 6.4% 78 7.9% 244 7.2% 294 7.2%
Race/Ethnicity .321 .518 .036
 Non-Hispanic White 1,162 77.3% 766 77.9% 2,494 76.7% 3,457 81.8%
 Non-Hispanic Black 76 5.2% 65 6.8% 177 5.5% 151 3.8%
 Non-Hispanic Asian 73 3.0% 41 3.2% 153 4.4% 135 2.2%
 Hispanic 79 4.9% 45 3.9% 164 4.0% 163 3.2%
 Other 37 2.6% 20 1.4% 79 2.2% 90 2.0%
 Missing 98 6.9% 76 6.8% 247 7.2% 284 7.0%
Dual enrollee 137 8.4% 106 10.7% .158 343 10.0% .201 275 5.6% .005
General health .728 .452 .340
 Excellent/Very Good 465 32.2% 263 30.0% 1,013 34.3% 1,195 29.7%
 Good 586 39.9% 416 40.9% 1,208 37.8% 1,652 40.6%
 Fair 339 21.7% 229 22.0% 759 22.6% 1,034 23.8%
 Poor 72 5.6% 55 6.7% 178 5.0% 252 5.7%
 Missing/Don’t Know 63 3.6% 50 4.5% 156 3.5% 147 3.5%
Mental health .750 .624 .857
 Excellent/Very Good 958 65.0% 614 64.8% 1,938 61.5% 2,684 66.4%
 Good 371 25.4% 267 25.7% 882 28.4% 1,042 24.3%
 Fair 115 8.0% 70 7.8% 286 8.7% 335 7.8%
 Poor 21 1.4% 16 1.6% 57 1.3% 62 1.3%
 Missing/Don’t Know 60 3.2% 46 4.3% 151 3.3% 157 4.1%
Self-reported comorbidities*
 COPD 142 14.7% 78 14.4% 896 383 18.8% .068 633 22.9% < .001
 Diabetes 311 30.5% 137 22.3% .012 755 32.8% .432 913 31.1% .821
 Heart attack 184 29.4% 69 18.1% .002 354 25.0% .147 734 42.2% < .001
 Stroke 96 9.0% 36 6.9% .242 227 11.8% .111 312 11.1% .159
Cancer site
 Breast/Cervical# 382 23.5% 214 20. 4% .095 848 23.8% .993 718 16.5% < .001
 Colorectal 57 2.9% 60 5.4% .016 202 6.2% < .001 209 4.9% .003
 Lung 49 2.5% 41 4.1% .092 112 3.7% .138 191 4.3% .009
 Renal 22 1.1% 15 1.1% .994 109 3.9% < .001 148 3.7% < .001
 Prostate 684 49.7% 446 43.4% .027 974 29.7% < .001 1,510 35.4% < .001
 Other 331 20.1% 237 25.5% .029 1,069 32.8% < .001 1,504 35.1% < .001
Cancer stage
 Local 1,146 78.6% 680 66.6% < .001 2,568 77.0% .388 3,301 76.7% .261
 Regional 312 17.9% 270 26.8% < .001 625 18.7% .645 727 17.1% .609
 Missing 67 3.5% 63 6.6% .045 121 4.3% .370 252 6.2% .001
Years since diagnosis .038 < .001 < .001
 1–2 years 179 12.7% 161 16.3% 258 7.8% 355 7.3%
 2–5 years 783 48.0% 549 51.2% 1,344 39.2% 1,815 43.2%
 5+ years 563 39.3% 303 32.6% 1,712 53.0% 2,110 49.4%
Total physician encounters, by quartile < .001 < .001 .003
 2–5 Visits 292 19.9% 449 43.4% 1,208 36.0% 846 19.7%
 6–9 Visits 480 31.3% 228 22.2% 952 30.5% 1,131 26.5%
 10–14 Visits 396 25.9% 124 13.3% 663 19.1% 1,029 23.8%
 15+ Visits 357 22.8% 212 21.1% 491 14.4% 1,274 29.9%
Census region .008 .121 <.001
 Northeast 279 18.6% 181 19.7% 559 21.5% 993 25.3%
 Midwest 177 11.0% 172 16.9% 388 11.3% 407 8.5%
 South 388 27.1% 213 21.1% 778 22.6% 982 22.8%
 West 681 43.3% 447 42.3% 1587 44.6% 1892 43.4%

Notes:

Weighted percentages are estimates of national percentages after adjusting for sample weights and survey design.

P-values denote statistical significance of comparing the Oncologist-Led, PCP-Led, and Other groups to the Shared Care group.

Missingness includes question not answered, multiple response, and refused response.

Missingness due to unavailable data.

#

Cervical cancer is reported in this table combined with breast cancer to suppress presenting cells with small sample sizes (≤10). However, p-values are determined using breast cancer alone. There were no significant differences in the proportion of survivors with cervical cancer by survivorship care pattern.

*

Only available in CAHPS surveys 2008 and later.

Oncologists included physicians with specialties of hematology/oncology, medical oncology, surgical oncology, radiation oncology, hematology, gynecology/oncology, or urology (for individuals with prostate cancer). Physicians with more than one specialty type on E&M claims were classified as oncologists if at least one specialty code was for oncology. PCPs included family practice, general medicine, general surgery, internal medicine, geriatric medicine, obstetrics/gynecology, and preventive medicine. If they had no oncology specialty codes, physicians were classified as PCPs if at least one of their specialty codes was for primary care. Physicians with neither oncology nor PCP specialty codes for E&M visits were combined in an “other specialty” category. While survivors’ medical encounters may include care for health issues other than cancer, these patterns quantify the type(s) of physicians most frequently seen by survivors.

In determining the survivorship care pattern for each patient, claims with specialties listed as “Multispecialty Clinics” or “Group Practice” were excluded, as these may have involved multiple physician specialties. Claims from emergency department/urgent care encounters and encounters with emergency medicine physicians, anesthesiologists, pathologists, and pediatricians were excluded in determining survivorship care patterns. We also excluded visits with advanced practice providers (NPs or PAs) who were not affiliated with a physician practice, as information on the specialty of advanced practice providers was not available. Claims from physicians with specialty codes “Pain Medicine” and “Physical Medicine and Rehabilitation” were also excluded, since it was uncertain whether care provided by these physicians was cancer-related.

Our approach to identifying survivorship patterns of care classified survivors as receiving Shared Care, Oncologist-led, PCP-led, or Other physician patterns based on their proportion of E&M visits with oncologists, PCPs, and other types of physicians over the 12-month study period. Survivors were classified in the Oncologist-led pattern if ≥60% of their physician encounters were with oncologists and in the PCP-led pattern if ≥60% of their physician encounters were with PCPs. We defined the Shared Care group as survivors not in Oncologist-led or PCP-led patterns who had more than the median proportion of both oncologist and PCP visits (i.e., ≥17% of encounters with oncologists and ≥33% of encounters with PCPs). This is a more data-driven definition of Shared Care than in some prior studies that defined Shared Care as one or more visits with both PCPs and oncologists.[5, 6, 17] All survivors not classified in Oncologist-led, PCP-led, or Shared Care patterns were classified in the Other pattern. Details regarding the proportion of visits by physician type and the number of physician visits for each survivorship care model are presented in Table 1.

We also conducted sensitivity analyses to explore whether our findings were robust to a different definition of Shared Care. For this alternative definition, we classified survivors in the Shared Care pattern if: (1) their pattern of physician visits did not meet criteria for either Oncologist-led or PCP-led care; (2) their proportion of oncologist encounters plus PCP encounters was >50% of all physician encounters; (3) the proportion of oncologist visits was greater than the proportion of other physician encounters (non-oncologist and non-PCP); and (4) their proportion of PCP encounters was greater than the proportion of other physician encounters. This alternative definition reduced the percentage of survivors in Shared Care by approximately 6%, re-categorizing these survivors to the Other survivorship care pattern.

Outcome Measures

The CAHPS survey queries respondents about care received within the last 6-months. Study analyses include ten standard CAHPS measures as dependent variables: five global ratings (overall care, personal doctor, specialist physician, Medicare FFS, and prescription drug plan) scored 0 (worst possible rating) to 10 (best); and five composite measure scores (Doctor Communication, Care Coordination, Getting Needed Care, Getting Care Quickly, and Getting Needed Drugs) transformed to a 0–100 scale. The Care Coordination composite was in CAHPS only since 2012; analyses of this measured therefore included a smaller sample. Self-reported comorbidities, general health status, and mental health status were also obtained from the CAHPS survey. Individuals with missing responses for a CAHPS rating or composite were excluded from analysis of that measure. Technical specifications of the Medicare CAHPS are available at https://www.ma-pdpcahps.org/en/.

Statistical Analyses

To account for survey design, we used SAS 9.4 to produce survey-weighted frequencies and used SUDAAN for SAS to conduct chi-squared analyses. SUDAAN’s PROC CROSSTAB and PROC DESCRIPT allowed us to adjust models for CAHPS survey weights and FIPS state sampling units. Weights provided by NCI with these data were used to generate nationally-representative estimates. T-tests were used to compare means; Wilcoxon rank-sum tests were used to compare medians. We ran multivariable linear regression models for each of the ten CAHPS outcome measures using SUDAAN’s PROC REGRESS including a control variable for cancer type, and separate analyses for three subgroups (breast cancer, prostate cancer, and all other cancer survivors). To control for other patient characteristics potentially affecting CAHPS ratings/scores, models adjusted for sex, age, education, race, Medicare/Medicaid dual-enrollee status, self-reported general-health status, self-reported mental-health status, cancer site, cancer stage, and years since diagnosis (1–2 years, 2–5 years, 5+ years). We also adjusted for total number of physician encounters (in quartiles) during the study period. Self-reported comorbidity information was available for the SEER-CAHPS population only from 2008 onward; we included this information in Table 1 but not in regression analyses. As each CAHPS measure involved three different comparisons (Shared Care vs. each of Oncologist-led, PCP-led, and Other), the threshold for statistical significance was reduced by a factor of three to 0.017 (0.05 divided by 3).

RESULTS

Study Population Characteristics

Table 1 presents characteristics of the study population; 10,132 survivors met study inclusion criteria. Approximately 15% were classified as receiving care in a Shared Care pattern; 10% in Oncologist-led; 33% PCP-led; and 42% Other care patterns. Compared to survivors in Shared Care, those in the PCP-led and Other patterns tended to be older and diagnosed >5 years before survey participation. The PCP-led group tended to have lower education, while a greater proportion of survivors in the Other group were non-Hispanic White. Compared to survivors in Shared Care, those in Oncologist-led patterns were less likely to report diabetes or heart attack, while those in Other patterns were more likely to report Chronic Obstructive Pulmonary Disease (COPD) or heart attack. The mean number of comorbidities among survivors in Oncologist-led patterns (0.36) was significantly lower than that among survivors in Share Care (0.55) while the mean among survivors in Other patters (0.71) was significantly higher (data not shown). Among survivors in the Other pattern, the most frequent non-oncology and non-PCP specialties seen were cardiology, dermatology, urology (excluding those with prostate cancer), ophthalmology, and orthopedic surgery (data not shown). The most frequent cancer types in the study population were breast/cervical and prostate; however, the patterns of survivorship care patterns were similar across different cancer types. Compared with Share Care, the Oncologist-Led survivorship care pattern was more frequently observed in the Midwest census region and less frequently observed in the South. The Other care patterns was more frequently observed in the Northeast and less frequently observed in the Midwest and South.

Table 2 present details regarding physician evaluation and management (E&M) visits by care pattern. As expected, survivors in Shared Care had similar proportions and median numbers of oncologist and PCP visits. For survivors in Oncologist-led, PCP-led, and Other patterns, the majority of visits were with oncologists, PCPs, and other types of physicians, respectively.

Table 2.

Mean proportion and median number of oncologist, primary care, and other physician specialty E&M visits by survivorship care pattern

Physician type Shared Care Oncologist-Led PCP-Led 4 Other Care
Proportion of Oncologist, Primary Care, and Other Physician Specialty Visits
Mean Std. Error Mean Std. Error P-Value Mean Std. Error P-Value Mean Std. Error P-Value
Oncologist 34.20% 0.44% 79.77% 0.64% <.001 7.83% 0.39% <.001 14.25% 0.43% <.001
Primary care 44.79% 0.26% 11.05% 0.57% <.001 78.97% 0.40% <.001 25.88% 0.44% <.001
Other physician specialty 21.01% 0.53% 9.18% 0.51% <.001 13.21% 0.44% <.001 59.87% 0.50% <.001
Median Number of Oncologist, Primary Care, and Other Physician Specialty Visits
Median Interquartile Range Median Interquartile Range P-Value Median Interquartile Range P-Value Median Interquartile Range P-Value
Oncologist 3 2 5 6 <.001 0 1 <.001 1 2 <.001
Primary care 4 3 0 2 <.001 5 5 <.001 2 4 <.001
Other physician specialty 2 3 0 2 <.001 1 2 <.001 6 6 <.001

Notes:

Weighted percentages are estimates of national percentages after adjusting for sample weights and survey design.

P-values denote the statistical significance when comparing distributions within survivorship care patterns (Oncologist-Led, PCP-Led, and Other) to distribution within the Shared Care pattern.

Association of Survivorship Care Pattern and Experience of Care

Regression results examining associations of survivorship care pattern with experience of care are presented in Table 3. Each cell in Table 3 provides results from three separate CAHPS rating comparisons (Shared Care vs. Oncologist-led, PCP-led, and Other care patterns); each column therefore includes results from 30 regression models.

Table 3.

Association (regression model estimates, adjusted CI) of survivor-reported experiences of care for PCP-led, Oncologist-led, or Other survivorship care patterns vs. Shared Care (reference)#

Study Population
(1) All survivors (2) Breast cancer survivors only (3) Prostate cancer survivors only (4) All survivors except breast and prostate cancers
OUTCOME MEASURE Comparison Survivorship Care Pattern Beta (98.3% CI) Beta (98.3% CI) Beta (98.3% CI) Beta (98.3% CI)
Global Measures
Rate Health Care Oncologist-led 0.15 (−0.07,0.37) 0.47 (0.06,0.87) −0.17 (−0.50,0.17) 0.37 (0.02,0.72)
PCP-led 0.09 (−0.08,0.26) 0.25 (−0.05,0.56) 0.04 (−0.22,0.29) 0.02 (−0.31,0.34)
Other −0.05 (−0.21,0.11) 0.03 (−0.29,0.36) −0.06 (−0.29,0.18) −0.11 (−0.41,0.20)
Rate Personal Doctor Oncologist-led 0.00 (−0.22,0.22) 0.17 (−0.24,0.57) −0.08 (−0.41,0.25) 0.05 (−0.28,0.39)
PCP-led 0.03 (−0.12,0.18) 0.07 (−0.19,0.33) −0.03 (−0.26,0.21) 0.02 (−0.24,0.28)
Other −0.09 (−0.23,0.06) −0.04 (−0.32,0.24) −0.07 (−0.29,0.15) −0.11 (−0.36,0.13)
Rate Specialist Oncologist-led 0.02 (−0.19,0.24) 0.45 (0.09,0.80) −0.28 (−0.62,0.05) 0.21 (−0.12,0.54)
PCP-led −0.03 (−0.20,0.14) 0.21 (−0.10,0.52) −0.18 (−0.47,0.10) −0.01 (−0.30,0.29)
Other −0.03 (−0.18,0.12) 0.08 (−0.25,0.41) −0.23 (−0.45,−0.00) 0.11 (−0.16,0.37)
Rate Health Plan Oncologist-led 0.21 (−0.04,0.46) 0.07 (−0.35,0.49) 0.22 (−0.18,0.63) 0.29 (−0.09,0.68)
PCP-led 0.11 (−0.09,0.30) −0.03 (−0.34,0.27) 0.10 (−0.25,0.46) 0.18 (−0.09,0.46)
Other −0.01 (−0.20,0.18) −0.13 (−0.45,0.19) 0.05 (−0.29,0.38) 0.02 (−0.25,0.30)
Rate Prescription Drug Plan Oncologist-led −0.04 (−0.42,0.34) 0.68 (−0.15,1.52) −0.32 (−0.96,0.31) −0.09 (−0.67,0.49)
PCP-led −0.05 (−0.44,0.35) 0.54 (−0.15,1.24) −0.31 (−1.08,0.46) −0.07 (−0.55,0.41)
Other −0.18 (−0.54,0.18) 0.09 (−0.59,0.78) −0.12 (−0.61,0.38) −0.27 (−0.74,0.21)
Composite Measures
Doctor Communication Oncologist-led −0.13 (−2.46,2.21) 1.63 (−2.66,5.91) −1.50 (−5.14,2.14) 1.53 (−2.23,5.28)
PCP-led −0.05 (−1.90,1.81) 0.23 (−2.81,3.28) −1.01 (−4.20,2.19) 0.95 (−1.91,3.81)
Other −1.54 (−3.33,0.24) −1.57 (−4.85,1.71) −1.85 (−4.63,0.93) −0.59 (−3.38,2.20)
Getting Care Quickly Oncologist-led −0.04 (−3.50,3.42) 4.58 (−2.76,11.92) −2.10 (−7.11,2.92) 0.16 (−5.81,6.13)
PCP-led 0.55 (−2.02,3.12) 3.63 (−1.48,8.74) −1.68 (−5.78,2.41) 0.57 (−3.73,4.87)
Other −0.88 (−3.29,1.53) 2.54 (−2.20,7.27) −2.16 (−5.91,1.59) −1.41 (−5.54,2.73)
Getting Needed Care Oncologist-led 1.25 (−1.11,3.61) 3.34 (−0.98,7.66) −0.86 (−4.57,2.84) 3.40 (−0.64,7.44)
PCP-led 0.63 (−1.34,2.61) 2.26 (−1.26,5.77) −0.89 (−4.17,2.39) 1.11 (−2.32,4.53)
Other −1.18 (−3.06,0.69) −0.49 (−4.18,3.20) −2.11 (−5.00,0.78) −0.53 (−3.85,2.78)
Getting Needed Drugs Oncologist-led −1.95 (−4.07,0.17) −0.34 (−5.01,4.33) −3.63 (−6.82,−0.44) −0.91 (−4.39,2.56)
PCP-led −2.15 (−4.13,−0.18) 0.80 (−2.52,4.12) −4.18 (−8.14,−0.22) −2.28 (−5.20,0.65)
Other −1.98 (−3.43,−0.53) 0.52 (−2.95,3.98) −2.70 (−4.67,−0.73) −2.44 (−4.91,0.04)
Care Coordination Oncologist-led −0.76 (−4.67,3.15) 2.16 (−7.14,11.46) 1.34 (−3.86,6.53) −3.03 (−10.36,4.29)
PCP-led 1.01 (−1.97,3.98) 0.01 (−5.92,5.94) 1.26 (−3.20,5.73) 0.66 (−4.79,6.12)
Other −1.00 (−3.85,1.85) −6.02 (−12.16,0.13) 1.07 (−3.01,5.14) −1.25 (−6.64,4.15)

Notes:

#

Negative regression coefficients (betas) indicate significantly lower ratings from survivors in the specific care pattern vs. survivors in Shared Care; positive betas indicate higher rating from survivors in the specific care pattern vs. those in Shared Care.

In each model-specific column, regression parameter estimates (betas) and 98.3% confidence intervals (CIs, adjusted for p-value of 0.017) for survivors in PCP-led, Oncologist-led (ONC-led), or Other survivorship care patterns compared with Shared Care for each experience of care outcome measure are presented. Statistically significant (with significance set at P < .017 to correct for multiple comparisons on each measure) regression results are bolded.

All models adjusted for age, race/ethnicity, educational attainment category, Medicare/Medicaid dual enrollment status, self-reported general and mental health status, cancer stage, years since diagnosis category, and number of physician encounters (by quartile, where a higher quartile indicates a greater number of encounters). The all survivors model (model no. 1) also adjusts for sex and cancer site. The model excluding breast and prostate cancer survivors (model no. 4) adjusts for sex but not cancer site.

Survivors in Shared Care had similar experience of care ratings to those in Oncologist-led, PCP-led, and Other patterns. We observed few significant differences in experience of care between groups. Compared with survivors in Shared Care, those in the Other pattern had significantly lower ratings for Getting Needed Drugs (regression coefficient [beta] −1.97, 95% CI [−3.17, −0.79]). Survivors in the PCP-led pattern also had significantly lower ratings for Getting Needed Drugs (−2.15 [−3.78, −0.53]).

Separate analyses were performed for the two largest subgroups of survivors: men with prostate cancer and women with breast cancer (Table 3). Among prostate cancer survivors, those in Other patterns had lower ratings for specialist care (−0.23 [−0.41, −0.04]). Prostate cancer survivors in non-Shared Care patterns all had significantly lower ratings for Getting Needed Drugs (Oncologist-led: −3.63 [−6.25, −1.01]; PCP-led: −4.18 [−7.44, −0.93]; Other: −2.70 [−4.31, −1.08]) than did those in Shared Care. Among breast cancer survivors, those in the Oncologist-led pattern had significantly higher ratings for overall care (0.47 [0.13, 0.80]) and specialist care (0.45 [0.16, 0.74]). Among survivors of all other cancer types (except breast and prostate cancers) combined, the only significant difference was those in the Oncologist-led pattern had higher ratings for overall care (0.37 [0.08, 0.66]).

Association of Survivorship Care Pattern and Experience of Care by Disease Stage and among Recently Diagnosed Survivors

For risk-stratified survivorship care, there may be differences by stage at diagnosis for survivors in Shared Care vs. other survivorship care patterns. While stage was controlled for in regression analyses (Table 3), regression analyses were also performed examining the association of survivorship care pattern and experience of care for patients with local-stage disease at diagnosis and separately those with regional-stage disease at diagnosis. Results are presented in Appendix Tables 1 and 2, respectively. Similar to results presented in Table 3 (with the combined population of patients with local and regional-stage disease, and regression analyses controlling for stage at diagnosis), there were few significant associations between survivorship care pattern and experience of care. Among the overall survivor populations with local-stage disease (Appendix Table 1) or regional-stage disease (Appendix Table 2), there were no significant associations between survivorship care pattern and experience of care.

Medicare CAHPS does not specifically request information on experience with cancer care. While analyses presented in Table 3 control for years since diagnosis, we separately examined associations of survivorship care patterns and experience of care for more recently diagnosed survivors (those diagnosed within two years of survey completion), who may focus more on cancer-related care in providing ratings. Results of this subgroup analysis are presented in Appendix Table 3. As with the main results, the majority of associations between survivorship care plan and experience of care ratings are not statistically significant. However, among all survivors who completed a CAHPS survey within 2 years of diagnosis, those receiving PCP-led care or Other care reported significantly worse ratings for Getting Needed Drugs than did those in Shared Care; there was no significant difference between survivors in Shared Care vs. those in Oncologist-Led care. Among breast cancer survivors diagnosed within 2 years of survey completion, only those in PCP-Led care reported significantly worse ratings for Getting Needed Drugs than did those in Shared Care. Among recently diagnosed prostate cancer survivors, those in Oncologist-Led care or Other care patterns reported worse ratings for Getting Needed Drugs than did those in Shared Care.

Sensitivity Analysis

As discussed in the Methods section, we performed sensitivity analyses by varying threshold definitions for categorizing survivorship care patterns. The sensitivity analyses used a different threshold of oncologist and primary care physician visits for classification of individuals as receiving Shared Care; this alternate definition of Shared Care resulted in approximately 6% of survivors being re-categorized from Shared Care to the Other survivorship care pattern. In models of all survivors using this alternative definition, there were no significant associations between survivorship care pattern and survivors’ experience of care ratings (data not shown).

DISCUSSION

To our knowledge, this is the first study using national data to examine associations between multiple domains of cancer survivors’ experience of care and type of physicians providing their care (i.e., survivorship care patterns). We found few significant associations between experience of care and survivorship care pattern in base-case analyses and no significant associations in sensitivity analyses. The lack of significant differences in patient experience of care associated with survivorship care patterns is surprising based on prior studies of patient preference for health care providers to lead survivorship care. Previous studies suggest that cancer survivors in the U.S. may prefer survivorship care led by oncologists rather than PCPs.[1820] In our study, breast cancer survivors in Oncologist-led care patterns did report significantly higher ratings for their specialist physicians, and all other cancer survivors (excluding breast and prostate cancer survivors) in Oncologist-led care reported higher ratings for their overall health care compared with those in Shared Care (Table 3). However, the magnitude of these difference is small. The general lack of differences in experience of care ratings for survivors in Oncologist-led versus PCP-led versus Shared Care patterns suggests that survivors’ preferences may be flexible regarding type(s) of physician(s) leading their follow-up care.

The presence of multiple physician specialties in survivorship shared care could create challenges for care coordination.[17, 8] However, in the present study, ratings for care coordination among survivors in Shared Care did not significantly differ from those in Oncologist-led or PCP-led patterns. Sisler et al. similarly reported that ratings for continuity of care were similar among CRC survivors whether or not an oncologist was included in follow-up care.[21] Hudson et al., in evaluating five survivor-reported measures of care coordination, found that PCPs scored higher than oncologists in keeping track of survivor’s health care, whereas oncologists scored higher for communicating with other health care professionals; for three other measures, there were no significant differences between PCP and oncologists.[22]

Our findings may have implications regarding risk-stratified care patterns for cancer survivors.[2325] However, few significant associations between experience of care and survivorship care pattern were observed in separate analyses of those with local vs. regional stage disease (Appendix Tables 1 and 2). More research is needed to examine whether survivors’ treatment histories and risk factors influence association between care pattern and care experience.

An unexpected finding presented in this study is the high proportion of survivorship care that is provided by physician specialists other than oncologists or primary care physicians. As presented in Table 1, 42% of survivors are in the Other care pattern. That does not mean that these survivors received no care from primary care physicians or oncologists, but that physicians of other specialties provided a majority of their care. Comprehensive and patient-centered survivorship care will need to go beyond the oncology-primary care collaboration that are often the focus of shared care and include a multi-disciplinary team. More research is needed to examine the role of other health care providers in survivorship care.

This study has several limitations. First, as with any study using retrospective, cross-sectional data, we were limited to variables in the data sets and could not explore changes in individuals’ experience of care over time. The study population was limited to individuals living in states participating in SEER who completed a Medicare FFS CAHPS survey; results may not be generalizable to all cancer survivors. In determining survivorship care pattern, we excluded visits with physician specialty listed as “Multispecialty Clinics” or “Group Practice”; it is possible these visits represented shared care. We also excluded visits with advanced practice providers (NPs or PAs) who were not affiliated with a physician practice, as information on the specialty of these advanced practice providers was not available. Although the Shared Care group included both PCP and oncologist visits, we do not have data on coordination/communication between providers, i.e., whether cancer care was actually shared or what was discussed during a visit. In addition, survivors may reflect on their care in general and may not provide ratings specific to their survivorship care.

Analyses included all physician visits to classify survivorship care patterns. We did not attempt to classify which visits specifically involved “survivorship care”, as any health care encounters with cancer survivors may be considered (at least in part) to include survivorship care. Data on comorbidities were available only for individuals completing the SEER-CAHPS survey in 2008 or later and were therefore not included in regression analyses.

While few significant results were observed in base-case analyses, the absence of any significant findings in sensitivity analyses suggests that results are influenced by how care patterns are defined. Future studies should explore definitions of survivorship care patterns to identify the most evidence-based ways of characterizing these patterns. In addition, survivors were not randomly assigned to survivorship care patterns. Specialties of physicians seen by survivors may reflect individual preferences, demographic/clinical characteristics, or resources in their care setting, and thus may not be unbiased. However, by controlling for survivors’ demographic and clinical characteristics, we were able to mitigate for such potential confounders in multivariable analyses.

Despite these limitations, our findings provide important information regarding shared care for cancer survivors. A variety of stakeholders has called for increased use of survivorship shared care for certain survivor populations.[2629, 2] However, there is little evidence that shared care improves outcomes. Our study, using a data-driven definition of shared care, found few differences in experience of care for older Medicare cancer survivors receiving shared care versus PCP-led or oncologist-led care. This suggests that shared care may not provide patient-perceived benefits to survivors compared with care led by only PCPs or oncologists. Shared care may also increase provider burden and costs. Without stronger supporting evidence, efforts to facilitate or mandate shared care for survivors may result in limited benefits.

Supplementary Material

1632095_Appendix

Acknowledgement:

This study was supported by funding from the National Cancer Institute (contract number HHSN261201000166U and HHSN261201500132U). Analyses presented in this manuscript were initiated when MTH was an employee of RTI International and EEK was an employee of ICF, Inc.

Footnotes

Publisher's Disclaimer: This Author Accepted Manuscript is a PDF file of a an unedited peer-reviewed manuscript that has been accepted for publication but has not been copyedited or corrected. The official version of record that is published in the journal is kept up to date and so may therefore differ from this version.

The authors indicate no conflicts of interest. Disclaimers: The article was prepared as part of some of the authors’ (MTH, MAM, EEK) official duties as employees of the US Federal Government. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the National Cancer Institute.

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Supplementary Materials

1632095_Appendix

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