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Obstetrics & Gynecology 2000;96:625-631
© 2000 by The American College of Obstetricians and Gynecologists
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ORIGINAL RESEARCH

Validity of Adolescent and Young Adult Self-Report of Papanicolaou Smear Results

JESSICA A. KAHN, MD, MPH, ELIZABETH GOODMAN, MD, REBEKAH A. KAPLOWITZ, MD, GAIL B. SLAP, MD and S. JEAN EMANS, MD

From the Division of Adolescent Medicine, Children’s Hospital Medical Center, Cincinnati, Ohio; and the Division of Adolescent/Young Adult Medicine, Children’s Hospital, Boston, Massachusetts.

Address reprint requests to: Jessica A. Kahn, MD, MPH Division of Adolescent Medicine Children’s Hospital Medical Center 3333 Burnet Avenue Cincinnati, OH 45229


   Abstract
Top
Abstract
Materials and Methods
 Results
 Discussion
 References
 
Objective: To assess the validity of adolescent and young adult report of Papanicolaou smear results and to determine sociodemographic, cognitive, and behavioral factors associated with incorrect reporting.

Methods: We conducted a cross-sectional study of 477 female subjects aged 12 to 24 years who attended an adolescent clinic and had a previous Papanicolaou smear. Subjects completed a self-administered survey assessing self-report of Papanicolaou smear results, knowledge about Papanicolaou smears and human papillomavirus (HPV), attitudes about Papanicolaou screening and follow-up, and risk behaviors. The sensitivity, specificity, positive predictive value, and negative predictive value of self-reported results were calculated using the cytology report as the standard. Variables significantly associated with incorrect reporting were entered into logistic regression models controlling for age and race to determine independent predictors for incorrect reporting.

Results: Of the 477 participants, 128 (27%) had abnormal cytology reports and 66 (14%) had incorrect self-reports. Sensitivity of self-report was 0.79, specificity 0.89, positive predictive value 0.72, negative predictive value 0.92, and kappa ({kappa}) 0.66. The adjusted odds ratios (OR) and 95% confidence intervals (CI) of the variables comprising a logistic regression model predicting incorrect reporting were an HPV knowledge source of zero (OR 2.4, CI 1.0, 5.8), low perceived communication with the provider (OR 2.1, CI 1.1, 4.0), and no contraception at last intercourse (OR 5.5, CI 2.7, 11.0).

Conclusion: The validity of adolescent and young adult self-reported Papanicolaou smear result is high, except among those who lack knowledge of HPV, perceive poor communication with the provider, and use contraception inconsistently.

The prevalence of abnormal cervical cytology in adolescents and young women is high and might be increasing in the United States.1–8 Infection with human papillomavirus (HPV) types 16, 18, 31, 33, 35, and 45 is strongly associated with cervical dysplasia,9–13 and the biologic and behavioral correlates of infection are the focus of active research. These factors include early age at first sexual intercourse, multiple sexual partners, oral contraceptive (OC) use, and smoking.3,13–22

Surveys to identify the associations between cervical dysplasia and behavior frequently depend on self-reporting of Papanicolaou smear results. In the clinical setting, self-reporting of previous Papanicolaou smear results might guide treatment because it could be difficult to obtain prior cytology reports. Despite the research and clinical dependence on self-reporting, little is known about its validity in adolescent and young adult populations. Although one study demonstrated fair agreement between adolescent self-reporting and laboratory reports of cervical dysplasia,23 two studies disagreed about the validity of adolescent self-reporting of sexually transmitted diseases (STD).24,25 These studies suggested that incorrect patient reporting might be associated with inadequate patient education and knowledge about the pelvic examination, Papanicolaou smears, and tests for STD.23–25 Adolescents and young women at highest risk for HPV and cervical dysplasia might also be the least likely to establish the rapport and communication with health care providers that would enhance their understanding of Papanicolaou smear results.

The objectives of this study were to assess the validity of young women’s self-reported Papanicolaou smear result and to determine whether patient knowledge about Papanicolaou smears, attitudes about screening and follow-up, and sexual behaviors are associated with incorrect reporting. We hypothesized that the validity of self-reporting would be low and that incorrect patient reporting would be associated with inadequate knowledge about Papanicolaou smears and HPV, poor communication with the provider, and risky sexual behavior.


   Materials and Methods
Top
Abstract
 Materials and Methods
Results
 Discussion
 References
 
We used baseline cross-sectional survey data from a prospective study of adolescents and young adults. The target population consisted of 558 female subjects aged 12 to 24 years seen in an urban, hospital-based adolescent clinic between October 1998 and June 1999 who had a history of sexual intercourse and prior Papanicolaou smear(s) done at the hospital. Exclusion criteria were inability to complete the written questionnaire independently (n = 24) and patient report of an abnormal Papanicolaou smear at another hospital (n = 13). Of the 521 eligible patients, 44 declined participation because of competing time commitments or disinterest. The study sample therefore consisted of 477 subjects (enrollment rate 92%). Those who participated did not differ significantly from those who did not participate in terms of age, insurance status, number of prior Papanicolaou smears, or number of abnormal Papanicolaou smears. All participants provided informed consent, and the protocol was approved by the hospital Committee on Clinical Investigation.

The self-administered, pencil-and-paper survey instrument was administered during the clinic visit and consisted of 116 items assessing three areas—socio-demographic and health care characteristics; cognitive variables including knowledge, attitudes, and beliefs about Papanicolaou smear screening and follow-up; and risk behaviors associated with abnormal Papanicolaou smears. Participants were informed that this was a study of gynecologic health but were not aware that the investigators were studying Papanicolaou smear report and follow-up, nor informed that they were eligible because they had had a Papanicolaou smear in the past.

Knowledge about Papanicolaou smears was measured using five items with a possible score range of zero (no correct items) to five (all correct items). Knowledge about HPV was measured using a six-item scale with a possible score range of zero (the participant had never heard of HPV) to six (the patient had heard of HPV and answered all other items correctly). The two subscales measuring Papanicolaou smear and HPV knowledge were dichotomized for analysis at the lowest quartile, corresponding to a scale score of zero, because scores were highly skewed. A research assistant collected the first portion of the survey, which assessed knowledge, then gave subjects the second portion of the survey, which assessed attitudes and beliefs. It was preceded by a paragraph that defined a Papanicolaou smear and gave routine recommendations for screening and follow-up. Preliminary interviews and pilot tests of the survey indicated that knowledge about Papanicolaou smears and HPV was poor; thus, the purpose of the introductory paragraph was to ensure that participants would have baseline knowledge on which to base their responses to questions about beliefs and attitudes.

Items assessing attitudes and beliefs about Papanicolaou smear screening and follow-up appointments were derived from previous work of the investigators26 and literature review.26–30 The items assessing attitudes and beliefs were divided into the following seven domains: intention to comply with Papanicolaou smear follow-up appointments (one item); perceived control over returning for a Papanicolaou smear (two items); subject’s attitudes about Papanicolaou smear follow-up (14 items); subject’s perception of the attitudes of friends, family, and providers regarding Papanicolaou smear follow-up (five items); communication with the provider (seven items); perceived susceptibility to an abnormal Papanicolaou smear (one item); and external cues to obtaining a Papanicolaou smear (six items).

Survey items assessed five risk behaviors and two associated health outcomes, including age at coitarche, number of lifetime sexual partners, contraception use at last sexual intercourse, condom use at last sexual intercourse, smoking in the past 30 days, history of pregnancy, and history of STD. Computerized medical and cytology records were reviewed to assess one additional behavior, evidence of past compliance with Papanicolaou screening and follow-up. The definition of past compliance, which was derived from practices standard in the clinic, was having kept an appointment for a routine Papanicolaou smear within 15 months of the prior test; follow-up Papanicolaou smear within 6 months of a smear demonstrating atypical cells of undetermined significance (ASCUS); colposcopy within 2 months of a second smear demonstrating ASCUS; and colposcopy within 2 months of a smear demonstrating low-grade squamous intraepithelial lesion (SIL), high-grade SIL, or carcinoma.

Abnormal Papanicolaou smear by self-report was defined as an affirmative response to the item: "Have you even been told by a doctor or a nurse that you had an abnormal Papanicolaou smear?" If the respondent answered yes, she was asked if the Papanicolaou smear had been done outside of the hospital. Abnormal Papanicolaou smear by laboratory report was defined as one or more prior reports of ASCUS, low-grade SIL, high-grade SIL, or carcinoma. If a subject reported that she had ever been told by a doctor or nurse that she had an abnormal Papanicolaou smear, her self-report was considered correct if she had at least one abnormal prior Papanicolaou smear by laboratory report. If a subject reported that she had not been told that she had an abnormal Papanicolaou smear, her self-report was considered correct if she had never had an abnormal laboratory report. Although all subjects attended the adolescent clinic, an estimated 10% of the subjects had had one or more prior Papanicolaou smears done in the adolescent gynecology clinic or teen-tot clinic. All clinics are located in the same hospital, and several adolescent clinic staff also provide care in the gynecology clinic and teen-tot clinic. All samples were sent to the same laboratory and results were available on the same computerized cytology result information system; therefore, information on Papanicolaou smear results was the same regardless of the clinic where it was done. Since 1993, all patients with abnormal Papanicolaou smear reports on specimens collected in three clinics have been informed of the abnormality by letter, and letters from the three clinics contain the same information and recommendations for follow-up. Patients with a first Papanicolaou smear demonstrating ASCUS were instructed to have a repeat Papanicolaou smear in 4 months. Patients with a second Papanicolaou smear demonstrating ASCUS or any Papanicolaou smear demonstrating low-grade SIL or high-grade SIL were instructed to make two appointments, one to discuss the result and another for colposcopy. Patients with high-grade SIL also received a phone call from a nurse in the adolescent clinic. Patients who missed their colposcopy appointments were sent a letter advising them to reschedule and were called by a nurse to help them reschedule. Patients who missed two colposcopy appointments were sent a registered letter and again called by a nurse.

Ten patients from the study population participated in a qualitative assessment of the survey to assure understandability of the items. A research assistant interviewed these patients to obtain feedback on any items that were unclear. Test-retest reliability was assessed by comparing scale scores measured at a 2-week interval in an additional 24 subjects. Intraclass correlation coefficients for the scales measuring attitudes, subjective norm, and communication with the provider were 0.86, 0.69, and 0.77 respectively among those subjects.

Sensitivity, specificity, positive predictive value, negative predictive value, and kappa ({kappa}) statistic of self-reported Papanicolaou smear results were calculated using the laboratory report as the standard. Subjects with correct versus incorrect self-reports were compared on all variables by using {chi}2, Mann-Whitney U, and Student t tests. Those variables associated with self-report at P < .05 were entered into a series of logistic regression models designed to predict incorrect self-report after controlling for age and race. The first model incorporated knowledge of Papanicolaou smears, knowledge of HPV, and the seven attitudinal variables. The second model incorporated the eight behavioral and health outcome variables. The third model was a composite of the knowledge-attitude and behavior-outcome variables that independently predicted incorrect self-report in the first two models. Adjusted odds ratios (OR) and 95% confidence intervals (CI) are reported for each model.


   Results
Top
Abstract
 Materials and Methods
 Results
Discussion
 References
 
The mean age of the 477 participants was 18 ± 2.1 years. Approximately half were non-Hispanic black. Most subjects were in school, and approximately half were enrolled in Medicaid (Table 1Go). The mean age at menarche was 11.8 ± 1.7 years, the mean age at coitarche was 15.0 ± 2.1 years, the median number of lifetime sexual partners was three, and the median number of previous Papanicolaou smears was two. Sixty-three percent of patients had had more than one previous Papanicolaou smear. Of those with a history of abnormal Papanicolaou smear, 42% had had more than one abnormal result. The median interval from the previous Papanicolaou smear to administration of the survey was 43 days.


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  		Table 1. Characteristics of the Study Sample
 
Table 2Go shows the number of normal and abnormal Papanicolaou smears by self-report and cytology report. Of 349 subjects with normal prior cytology reports, 310 (89%) reported correctly (specificity) and 39 (11%) reported incorrectly (false-positive rate). Of the 128 participants with abnormal prior cytology, 101 (79%) reported correctly (sensitivity) and 27 (21%) reported incorrectly (false-negative rate). Of the 337 subjects who reported normal Papanicolaou smears results, 310 (92%) had normal cytology reports (negative predictive value), and of the 140 subjects who reported abnormal results, 101 (72%) had abnormal cytology reports (positive predictive value). Of the total number of subjects, 66 (14%) had incorrect self-reports. The rate of incorrect reporting decreased as pathology worsened, from 37% of subjects with ASCUS to 0% of subjects with high-grade SIL. The {kappa} statistic was 0.66, indicating substantial agreement between self-report and cytology report.31


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  		Table 2. Cross-Tabulation of Papanicolaou Smear Result Reported by Subject (Self-Report) and Cytology Laboratory
 
The sociodemographic, cognitive, and behavioral and health outcome-related characteristics of participants who reported Papanicolaou results incorrectly are compared in Table 3Go. Subjects who reported incorrectly were significantly more likely to be nonwhite than participants who reported correctly. They also were more likely to score zero on the Papanicolaou and HPV knowledge scales, to report low communication with their provider, to perceive themselves at high risk for an abnormal Papanicolaou smear, and to report risky behaviors and associated outcomes, including no contraception at last intercourse, no condom use at last sexual intercourse, a prior pregnancy, a prior STD, smoking in the past month, and missed appointment(s) for Papanicolaou follow-up or screening.


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  		Table 3. Sociodemographic, Cognitive, and Behavioral Characteristics of Subjects Who Incorrectly Self-Reported Papanicolaou Smear Result
 
Results of the logistic regression modeling are shown in Table 4Go. The first model, which assessed cognitive predictors of incorrect reporting, found that a score of zero on the HPV knowledge subscale and both of the attitudinal variables (perceived high risk for an abnormal Papanicolaou smear and perceived poor communication with the provider) were independent predictors of incorrect reporting. The second model, which assessed behavioral and health outcome-related predictors of incorrect reporting, found that two of the six risk behavior variables (no contraceptive use at last sexual intercourse and missed appointment(s) for Papanicolaou follow-up or screening) were independent predictors of incorrect reporting. The composite logistic model found that a score of zero on the HPV knowledge subscale, perceived poor communication with the provider, and no contraceptive use at last sexual intercourse remained independent predictors of incorrect reporting.


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  		Table 4. Logistic Regression Models Predicting Incorrect Self-Report*
 

   Discussion
Top
Abstract
 Materials and Methods
 Results
 Discussion
References
 
The validity of self-reported Papanicolaou smear results as normal compared with abnormal was high in this population of young women attending an urban, hospital-based adolescent clinic. The concordance of 86% between adolescent and laboratory reports refutes our hypothesis that young women would not report Papanicolaou results correctly. However, the findings support our hypotheses that low knowledge of HPV, poor perceived communication with the provider, and sexual risk behaviors are associated with incorrect reporting.

Several studies have investigated the validity of self-reported Papanicolaou smear results by adult women. Most assessed the accuracy with which women recalled having had Papanicolaou smear screening,32–42 although the study populations and recall periods varied widely. The sensitivity of reporting previous Papanicolaou smears ranged from 0.90 to 0.95, specificity from 0.37 to 0.55, positive predictive value from 0.46 to 0.77, negative predictive value from 0.82 to 0.88, and {kappa} statistic from 0.08 to 0.53.

Two studies examined the validity of self-reported Papanicolaou smear results. Biro et al23 reported that the {kappa} statistic reflecting concordance between adolescent self-report of Papanicolaou smear results and laboratory results was 0.396, but the study was limited by a small sample size and low enrollment rate. McKenna et al36 found that a reported history of an abnormal Papanicolaou smear in a sample of 105 women agreed only slightly with documented dysplasia ({kappa} = 0.08). In our study the higher {kappa} statistic of 0.66 might reflect the shorter recall period for adolescents compared with adults or different definitions of abnormal Papanicolaou smear. In addition, laboratory reports in the Biro et al23 and McKenna et al36 studies were obtained by retrospective study of written medical records, which can be erroneous or limited due to missing data.43,44 We attempted to increase accuracy in assessment of the cytology report by using computerized records and excluding adolescents who reported having a Papanicolaou smear done elsewhere.

The associations between accuracy with which women recall having had a Papanicolaou smear and sociodemographic factors, knowledge, attitudes, and behaviors have been reported in previous studies, but the results were inconsistent.33,36,39 Our study examined the associations between incorrect report of a Papanicolaou smear result and sociodemographic, cognitive, and behavioral variables. Such associations might help clinicians and researchers identify adolescents who are likely to report incorrectly.

There are several limitations to this study. First, it is possible that adolescents who seek care at multiple sites are less likely to be informed of or clear about their test results. If so, the exclusion of adolescents with an abnormal Papanicolaou smear who reported having had a Papanicolaou smear elsewhere would create a selection bias favoring correct reporters. Second, subjects who reported normal Papanicolaou results were not asked whether they had had Papanicolaou smears done elsewhere. If subjects with abnormal Papanicolaou smears done elsewhere incorrectly reported their result, we would have missed false-negative reports. Third, the implications of ASCUS are controversial, and subjects might not know whether to report this result as abnormal. Although the standard clinic letter sent to patients defines ASCUS as abnormal, it is possible that the high rate of incorrect reporting among subjects with ASCUS reflects the subject and professional uncertainty regarding its course and treatment. Fourth, as with any study, our findings might not generalize to entire adolescent and young adult populations with different sociodemographic characteristics. We were particularly interested in studying this clinic population because it is characterized by a high proportion of minority, low-income young women. These young women are at risk for abnormal Papanicolaou smears and are often asked by clinicians or investigators about a history of abnormal Papanicolaou smear. Fifth, only young women who were seen in the adolescent clinic during the study period were eligible for enrollment, which could create a selection bias favoring patients who tend to come to the clinic for urgent care visits or who are compliant with follow-up visits. Finally, the study did not address ability to recall having had a Papanicolaou test, only whether self-reported result was accurate.


   Footnotes
 
This study was supported by the Deborah Munroe Noonan Memorial Fund, and by Projects No. MCJ-MA259195 and MCJ-000964 from the Maternal-Child Health Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Resources.

The authors gratefully acknowledge the valuable contributions of Frank Biro, MD, for critical review of the manuscript; Victoria Chiou, for subject recruitment, data entry, and assistance with data analysis; and Jonathan Ellen, MD, Lawren Daltroy, PhD, and Karen Emmons, PhD, for assistance with scale development and analysis.

PII S0029-7844(00)00987-X

Received January 31, 2000. Received in revised form April 7, 2000. Accepted April 20, 2000.


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