Due to recent advances in cancer diagnosis and treatment, the population of cancer survivors in the United States has expanded to approximately 12 million individuals.1
Although many survivors go on to lead long healthy lives after treatment, for some there are physical and psychological consequences that require surveillance, follow-up, and medical interventions.2,3
Therefore, it is critical that innovative approaches to delivering long-term, post-treatment care for adult patients be developed.
One of the most important drivers for improving survivorship care nationally is the 2005 Institute of Medicine Report, Cancer Survivorship—Lost in Transition
This report describes new survivorship care models, many of which include a collaborative relationship between the oncology team and the primary care physician (PCP).5–7
Each of these approaches recognizes survivorship as a distinct phase in the cancer care continuum, but leaves unanswered the question of how to address the challenges in caring for socio-economically disadvantaged survivors. These individuals face unique challenges compared to others who have more resources: they are more likely to be diagnosed at a later stage and are less likely to have adequate general medical care and to receive needed psycho-social services.8–17
Our public city hospital survivorship model combines oncology-related care with internal medicine services into one clinic staffed by medical internists with the goal of providing comprehensive long-term medical and psychosocial services to the multi-ethnic, low-income population of adult cancer survivors. Because of the late-stage diagnoses in our patient population and their complex non-cancer conditions, we chose not to limit the definition of “survivorship” to the post-treatment period as in the IOM report, but rather we incorporated the broader definition espoused by the National Cancer Institute and National Coalition of Cancer Survivors that defines survivors as all cancer patients from diagnosis forward.18
The objectives of this paper are to: (1) describe a new clinic model of survivorship care for culturally diverse, urban adult cancer patients and (2) present findings from a feasibility evaluation of the clinic.
With a population of over 2.3 million, the Borough of Queens, New York, is the second most populous of the five boroughs that comprise New York City. The New York City Public Hospital system is currently the largest public hospital system in the nation.19
Within this system, the Queens Cancer Center of Queens Hospital (QCC) is the only clinically integrated, full-service cancer center in New York City’s public hospital system; as such, patients can be treated regardless of their immigration status or their ability to pay. Over 80% of QCC patients fall below the national levels for poverty as defined by the US Census Bureau.20
QCC provides services to a population that speaks over 138 different languages; 56% of patients speak a language other than English as their primary language. QCC has over 17,000 outpatient visits annually.
The clinic was launched in August 2005 as part of a collaborative partnership between QCC and Memorial Sloan-Kettering Cancer Center (MSKCC). The current staff includes two internists who see patients within the cancer center, allowing close proximity to all of the oncology subspecialists. The internists see patients a total of 6 half days per week. The clinic has access to all of QCC’s services, including financial counseling, nutrition services, pain management, social work, psychiatry, the smoking cessation program, and a patient navigator. Any patient receiving care at the cancer center who does not have a PCP is referred to this clinic. The decision to include patients in active treatment in the survivorship clinic ensures continuity of care for the post-treatment period as well.
Medical care of the patients includes: treatment of co-morbidities, cancer surveillance for a second malignancy, managing long-term and late effects of treatment, health promotion counseling, and referral to supportive services. Responsibility for managing short-term treatment toxicities and disease recurrence is the responsibility of the treating oncologist. Referrals to other oncologists and other medical specialists at QCC are made as needed. Communication with the treating oncologist is carried out by daily personal communication and/or weekly tumor board meetings.
To evaluate the feasibility of the clinic and for quality assurance purposes, a longitudinal database was established at the inception of the clinic to document basic information about each patient and each clinic visit. A waiver of informed consent was IRB approved. A customized form was used for entry into the clinic database (see online Appendix
Over the 3-year period from September 2005 through August 2008, the clinic served 410 cancer patients, approximately a fifth of whom were post-treatment and presented with one or more general medical service needs (n
89, 22%). Most patients were in active treatment for their cancer (n
321, 78%). Time since completing primary treatment for cancer as of the date of first visit to the clinic ranged from 9 months to 17 years (average
4.5 years). Demand for services grew steadily, both in terms of the number of patients per quarter and the number of patient visits. On average, post-treatment patients had 4.2 visits per year, and patients in active treatment had 2.8 visits per year.
In addition, the clinic provided cancer prevention services to 255 family members and caregivers. Since preventive care patients were not the intended target population of the new clinic, they are not included in the data presented below.
Demographics of the clinic’s cancer patients are shown in Table . Our cancer patients were primarily female (n
292, 71%) and racially diverse (64% were Black or Asian). Forty-two percent of all patients were Hispanic or Latino (n
174). Primary languages spoken by our patients included English (n
212, 52%) and Spanish (n
89, 22%), as well as a host of other languages. Half of our patient population (n
224, 50%) had no more than a high school diploma or its equivalent, with 1% reporting having had no formal education (n
5). Clinic patients were approximately 59 years old (SD
12.4 years) and ranged from 24 to 96 years old.
Selected Patient Demographics (Per First Visit to the Clinic)
At the time of their first visit, 42% of the clinic’s cancer patients were uninsured (n
174), 45% were receiving Medicaid and/or Medicare (n
181), and 13% had some form of private, third-party health insurance (n
55). Nearly half (n
185, 45%) were unemployed, and 23% were currently retired (n
94). Patients on active treatment were more likely to be unemployed than post-treatment patients at the time of their first visit (47% vs. 38%, respectively; chi-square
As shown in Table , breast cancer patients were 34% of the patients seen at the clinic and accounted for the highest proportion of post-treatment patients (46%). Colorectal, prostate, and cervical cancers were also frequent diagnoses. Nearly half (49%) of all patients served had been diagnosed at late stages (stages III or higher). Among lung, head and neck, and colorectal patients, more than three-quarters had been diagnosed at late stages.
Stage of Cancer at Diagnosis by Cancer Site among Active Treatment and Post-treatment Patients
For the four cancers with known screening interventions, patients were more likely to have late-stage disease at diagnosis than is reported nationally. For breast cancer patients, 37% were diagnosed at late stage verses 6% nationally; for prostate cancer, 29% were diagnosed at late stage compared to 5% nationally; for colorectal cancer, 75% were diagnosed at late stage compared with 54% nationally; for cervical cancer 49% were diagnosed at late stage compared to 43% nationally.21
Co-morbidities for new QCC patients were determined through patient self report of known medical conditions and a review of previous medical record information. The most common medical co-morbidities treated were: hypertension (n
155, 38%), adult onset diabetes (n
56, 14%), mixed hyperlipidemia (n
45, 11%), morbid obesity (n
26, 6%), and coronary artery disease (n
18, 4%). Nearly two-thirds of patients (n
254, 62%) presented with one or more co-morbidities at the time of their first clinic visit, with patients in active treatment significantly more likely than post-treatment to present this way (65% vs. 49%, respectively; chi-square
Medical problems most commonly identified among post-treatment patients receiving care at the clinic included pain (12%), depression (11%), cardiovascular disease (10%), and hyperlipidemia (7%) (Table ).
Common Medical Diseases and Conditions
The most common referrals included financial counseling (20%), nutrition (5%), pain management (3%), and patient navigation (2%). Patients in active treatment were significantly more likely to be referred for financial counseling.