The patient is a 34-year-old gravida 3, para 3 woman with a 2-year history of increasingly profuse vaginal bleeding. Over the past two years, the patient had been placed on oral contraceptives, but these had not stanched the bleeding. The patient reported having a Pap smear approximately 18 months earlier, read as "unsatisfactory, obscured by blood." However, she had not had a follow-up study. A gynecologist had seen her about 6 months earlier, and told her she needed a hysteroscopy and a dilation and curettage (D&C). However, he explained that he did not accept Medicaid, which was her source of health insurance. Her follow-up remained sporadic, and her bleeding continued—profuse enough that she required hospitalization for transfusions twice in the preceding 2 months.
Her bleeding increased again, and she presented to the emergency department (ED). Physical exam revealed that the patient had an extremely friable exophytic cervical lesion, which was biopsied and confirmed to be invasive cervical cancer. Upon evaluation by a gynecologic-oncologist, she was found to be Stage IIB cancer. After undergoing radiation therapy and chemotherapy, she still has persistent disease. Her prognosis is currently guarded. Her oncologist believes that her delayed diagnosis profoundly affected her prognosis.
Cervical cancer is the leading cause of avoidable cancer morbidity or mortality in women. Optimizing outcomes from cervical neoplasia involves multiple steps: the patient's ability and willingness to seek care, her ability to access such care, her receipt of high quality technical services, and her participation in shared decision making with regards to a care plan. This tragic but far-from-unusual case illustrates failure of the process at each of these steps.
This young woman experienced abnormal bleeding for 2 years until she was properly diagnosed. While she sought care, her follow-up was "sporadic." There are many possible explanations for this delay.(1) As a Medicaid beneficiary, this young woman was, by definition, poor. Poor women may have low educational levels, have fears and misconceptions about cancer, experience language and cultural barriers, have low health literacy, or may face bias and discrimination within the health care system.(2,3) Even when symptoms are present, many poor (and non-poor) individuals state that they prefer not to know if they have cancer.(4) In addition, living in an economically deprived area can lead to a life view focused more on day-to-day survival than on seeking care for cancer warning symptoms.(5,6)
Like this woman on Medicaid, uninsured individuals also face numerous barriers to gaining access to cancer care.(7) About 44 million Americans fail to qualify for Medicaid, and cannot afford health insurance or do not have jobs that provide coverage. Minorities are disproportionately represented among the uninsured: 37% of Hispanics and 25% of Blacks report being uninsured, compared to less than 10% of Whites.(8) Minority status may also compromise access through cultural beliefs and distrust of the health care profession.(9,10)
Strategies to improve access, such as providing expanded Medicaid benefits or universal insurance or the Centers for Disease Control-funded initiative for the Early Detection of Breast and Cervical Cancer, can improve access to cancer care. While insurance or free screening are necessary conditions to ensure access, they are not sufficient to improve cancer outcomes.(11) For instance, studies of cancer screening and outcomes in Canada demonstrate that despite universal access to care, poor individuals still have lower cancer screening rates and survival than more economically advantaged individuals.(12)
When the woman in this case finally did access health care, the technical quality of that care was sub-optimal. The physician placing the patient on oral contraceptives to treat her bleeding very likely missed the diagnosis of cervical cancer, as did the provider who failed to recall the patient after her unsatisfactory smear 18 months before diagnosis. This lack of follow-up has been noted in similar patient populations, where as many as 30% to 50% of women fail to receive timely, or sometimes any, diagnostic resolution.(13)
Even as we focus on the 2 years of "missed opportunities" for diagnosis, it is important to recognize that this woman probably had clinically detectable disease for many years before her initial presentation. Cervical neoplasia is a slow growing disease, taking 10-30 years to progress from Human Papilloma Virus (HPV) infection and low grade neoplasia to invasive cancer. Once cancer invades, it takes several years to progress from a localized to a regional and then distantly metastatic cancer.(14) While some cases of more rapidly progressive disease have been reported, here it appears that this woman's advanced stage cervical cancer represented a systematic failure to detect disease that was present for many years. It is well known that the Pap smear is an imperfect test, failing to correctly diagnose up to 50% of lesions.(15) Recent technical advances in screening technology, including use of Thin-Prep smears and HPV testing, independently, or in combination, have improved the sensitivity of cervical cancer screening.(16,17) Unfortunately, this patient failed to receive these better, but more expensive, means of screening.
The fiscal constraints of the medical care system also contributed to the failure to detect this woman's disease in an earlier, more curable stage. One of her physicians refused to accept Medicaid, and did not communicate to her the urgency of the need for specialized follow-up care. The quality of physician communication about cancer care has been noted over time to vary by physician gender and patient race/ethnicity and patient social class.(18,19) Subtle biases of physicians may also result in under-treatment of certain patient groups.(20)
Without a regular source of care, this woman was lost to the system until her symptoms became so severe as to necessitate admission. With the erosion of public health "safety net" hospitals that care for Medicaid patients or the uninsured, more and more patients like this one have resorted to using emergency rooms as their source of primary care. As a result, one urban screening program was developed specifically to reach those most in need by providing cancer screening in the emergency department.(21) This patient's sad story demonstrates the persistent inequities in access to health care in the United States.
- Engage patients in shared decision making about cancer screening and follow-up; provide information on cancer risks and interpretation of symptoms.
- Unsatisfactory Pap smears should be repeated.
- Consider using newer tests for human papilloma virus or more sensitive screening tests such as the Thin-Prep smear to detect clinically important neoplasia.
- Follow-up systems are essential to all screening efforts.
- Universal health insurance is important, but will not eliminate all barriers to quality care.
- Physicians should consider their own biases and how bias may affect care delivery and the patient-physician relationship.
Jeanne Mandelblatt, MD, MPH Professor of Oncology and Medicine Director of Cancer Control Program Georgetown University Medical Center
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