This study shows that the Pap test result is not the only factor influencing the timeliness of follow-up for being scheduled for final diagnosis or of treatment initiation in this cohort of medically underserved California women participating in CDP: EWC
. We found that patient demographic characteristics are significant indicators determining odds of being scheduled for treatment and timeliness of follow-up from screening to final diagnosis. For older women and women of color, it took longer to be scheduled for final diagnostic follow-up services. Among women with Abnormal
and Minor Abnormal
Pap test results, we found significantly lower odds of being scheduled for treatment among those who were Hispanic, Asian, and Black, compared to those of White women. Additionally, loss to follow up for completion of the final diagnostic work-up was more prevalent among Blacks and Native Americans. These findings can have important implications for addressing health disparities and in the development of effective screening programs for medically underserved populations. The results of this study are in agreement with other studies that examined the impact of sociodemographic characteristics such as race/ethnicity, age, and income as determinants of late stage diagnosis of cervical cancer and slower follow-up for women with Abnormal
Pap test results [7
]. Mandelblatt et al., while controlling for the effects of social class and health care setting, quantified the individual and combined effects of age, race, socioeconomic class, and type of health care setting on the cervical cancer stage at diagnosis. They found elderly, Black, and lower socioeconomic status women who use public hospitals at much higher risk of a late stage diagnosis. Carey and Gjerdingen found that southeast Asian women are less likely than White and Black women to comply with recommended cervical disease follow-up diagnostic and treatment procedures.
Although abnormality of previous to the last screening cycle in this study was significant in the group with Abnormal
Pap test results when examining the odds of being scheduled for treatment, neither previous history of screening nor a history of a previous abnormality was found to be a predictor for the timeliness of the diagnosis. One might have assumed that those previously motivated to have a Pap test and women who had a previous abnormality might be more motivated to schedule follow-up and treatment, but this appears not to be the case. Fox et al. [10
], who analyzed data from the same population of medically underserved California women, suggest that the assumption that women will follow through on their own to obtain follow-up diagnostic tests and treatment after an abnormal Pap test finding is not always realistic. They concluded that women of color, older women, and women with less severe diagnoses should receive support to improve adherence to recommended follow-up procedures. Hiatt et al. [15
] examined three community-based cancer screening and follow-up interventions for underserved women, and emphasized the importance of targeted interventions to persons of foreign origin, particularly for those less acculturated. Zapka et al. [16
] recommended that patients need clear communication and follow-up recommendations, especially when the findings are equivocal and in health care settings where multiple providers are involved in the clinical decision process.
Patient-level interventions such as mail and telephone reminders, telephone counseling, and print educational interventions have been shown to be effective in increasing follow-up rates. However, interventions to improve follow-up abnormal findings in cancer screening require a multi-faceted approach that must be informed of provider-, practice-, and policy-level correlates of follow-up as described by Bastani et al. [17
] in their extensive review of literature on intervention studies on improving follow-up of abnormal cancer screening findings. They note that the majority of intervention studies have focused on patient-level factors and there is insufficient information on effectiveness of provider-, practice-, or policy-level interventions to increase timely follow-up of abnormal cancer screening findings. In Marcus and Crane’s extensive review of previous cervical cancer detection programs, they found that “tickler” files, educational pamphlets, motivational mailings accompanying notification of abnormal results, telephone counseling, and transportation incentives are all effective, either alone or in combination to improve follow-up [8
]. Yabroff et al. [7
] also reviewed the literature on loss to follow up in cancer screening programs, including programs for screening cervical cancer. They found that patient factors such as a “fatalistic” attitude, fear of pain, concerns about femininity, perception of the provider as a trustworthy information source, and the perception that the provider understood a woman’s needs all influenced follow-up. Patient reminders and referral to an enhanced clinic providing patient navigators and peer-counselors improved follow-up [7
]. These authors also recommended improvements of data infrastructure and use of conceptual models by researchers to achieve satisfactory intervention development aiming at cancer control [7
Low-income Hispanic women have the highest rate of cervical cancer in the country, but well-designed screening and follow-up programs often yield only modest improvements [15
]. Language has been shown to have a significant effect on the success of cervical cancer screening programs [15
]. In addition, differences in family support among different ethnic groups, access to public transportation in different communities, and cultural biases regarding medical care can all affect follow-up for ethnic and racial minorities. Provider-based barriers have rarely been addressed, but could potentially be a significant contributing factor. These could include conscious or unconscious biases regarding different racial or ethnic groups, and adherence of individual providers to established follow-up and treatment protocols [7
]. Age-specific interventions may also be needed. Loss to follow up among those scheduled for final diagnosis in this study was more prevalent among the 40–49 age group. Transportation needs, educational approaches, and issues related to family support may vary and require specifically adapted types of intervention.
We also found that significant delays in scheduling for final diagnosis occur for women with “minor abnormal” results; however, this is not necessarily unexpected. During much of this study period, the standard follow-up guidelines for some of the Pap test results included in this category, most notably, ASCUS did not require definitive diagnostic procedures such as colposcopy, like those in the “Abnormal” category. The 2001 consensus guidelines from the American Society of Cervical and Colposcopic Pathology (ASCCP) included a program of two repeat Pap tests at 6-month intervals, though colposcopy and HPV testing for high-risk types were also included as possibilities for follow-up and management [5
]. The two-Pap tests follow-up strategy was most often used, since the probability of a high-grade cancer precursor is considered low in ASCUS Pap tests, and due to the higher expense of the other follow-up options. The 2–6-month intervals of the two-Pap tests follow-up strategy not only created an inherent delay in diagnosis, but also it was more likely to be associated with poorer compliance and more “drop outs”, since women were likely to lose interest in the follow-up. By 2006, when the next consensus conference took place, liquid-based Pap testing was more prevalent and could facilitate HPV testing, eliminating follow-up visits for a large percentage of women, improving compliance, and speeding diagnosis. Future analysis of the data associated with this program may, therefore, show fewer delays to diagnosis in this “minor abnormal” category.
It is notable that the majority of abnormalities detected in this screening population are “high-grade” lesions –CIN II-III/CIS. Additionally, due to sheer volume of patients, one may expect that many of the CINII/III cases are diagnosed with antecedent lower-grade abnormalities. These are the precancerous changes most likely to advance to invasive cancers and represent the lesions targeted for detection through cervical cancer screening programs. These findings indicate that medically underserved women participating in CDP: EWC are truly a high-risk population worthy of special attention and efforts to develop effective strategies that will minimize loss to follow up or delays can lead to enormous benefits in cancer prevention. A “one size fits all” follow-up model will neither be effective nor appropriate. The dual goal of reducing health disparities and to implement cost-effective detection and treatment of precancerous disease to prevent cervical cancers cannot be achieved without consideration of racial and ethnic differences and needs.