Communicating Colposcopy Results: What Do Patients ... - Homestead

Communicating Colposcopy Results: What Do Patients and Providers Discuss? Sandi L. Pruitt, MPH,1 Patricia A. Parker, PhD,2 Michele Follen, MD, PhD,3,4 and Karen Basen-Engquist, PhD, MPH2 1

Center for Health Promotion and Prevention Research at The University of Texas School of Public Health at Houston, Houston, TX, 2Department of Behavioral Science and 3Biomedical Engineering Center, The University of Texas M. D. Anderson Cancer Center, Houston, TX, and 4Department of Obstetrics, Gynecology, and Reproductive Sciences, The University of Texas Medical School at Houston, Houston, TX

h Abstract We describe the content of providers_ postcolposcopy consultations and women_s perceptions of consultations and their conditions. Materials and Methods. Consultations (n = 47) were audiotaped, transcribed, and analyzed. Women were interviewed immediately after consultations. Results. Providers often named or described the diagnosis (n = 46), suggested a return appointment date (n = 41), and asked if women understood the diagnosis or had any questions (n = 40). Risk factors and causes of cervical cancer, including human papillomavirus infection, smoking, and sexual activity, were rarely discussed (n = 5). The majority (n = 40) of women were asked if they understood the provider_s explanation or had any questions. Women rated quality of their provider_s explanation as high and the severity of and worry about their condition as moderate. Conclusions. Postcolposcopy consultations focused on follow-up screening and treatment. Risk factors and causes of cervical cancer were discussed infrequently. h Objective.

Reprint requests to: Karen Basen-Engquist, PhD, MPH, Department of Behavioral Science, M. D. Anderson Cancer Center, Unit 1330, 1515 Holcombe Boulevard, Houston, TX 77030. E-mail: kbasenen@ mdanderson.org This research was supported by National Cancer Institute Grant P01-CA82710. The preparation of this article was funded in part by National Cancer Institute training grants R25-CA-57730 and R25-CA-57712 awarded to S.L.P.

Ó 2008, American Society for Colposcopy and Cervical Pathology Journal of Lower Genital Tract Disease, Volume 12, Number 2, 2008, 95Y102

Key Words: doctor-patient communication, medical communication, colposcopy, cervical dysplasia, human papillomavirus

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atients with a cervical cytologic abnormality may undergo diagnostic testing consisting of a repeat Pap smear, colposcopy, and colposcopy-directed biopsy. Depending on the results of these tests, patients may need treatment or additional examinations at regular intervals. Previous studies show that patients who do not understand their initial Pap smear results and patients who experience distress or anxiety about those results may be more likely to fail to comply with recommendations for diagnostic testing, potentially endangering their health [1Y4]. Other studies show that when healthcare providers (HCPs) encourage follow-up and communicate effectively with patients such that patients understand their Pap smear results and have reduced anxiety, adherence with recommendations improves [3, 5]. To our knowledge, all the studies to date that have examined HCP communication during the process of cervical cancer screening focus on methods by which the results of Pap smears are presented [6Y10]. There have been no studies of consultations in which the results of colposcopy-directed biopsy are presented. In general, among women undergoing colposcopy, knowledge about cervical intraepithelial neoplasia (CIN) and cancer is low [11, 12] and anxiety is high [13, 14]. Communication by HCPs after colposcopy presents

Copyright @ 2007 American Society for Colposcopy and Cervical Pathology. Unauthorized reproduction of this article is prohibited.

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additional opportunities for educating patients about cervical cancer, clarifying any misunderstandings, reducing patients_ anxiety, and promoting continued adherence to screening and treatment regimens. This study describes the content of face-to-face consultations in which women were informed of their colposcopy results. We also examined the women_s ratings of the seriousness of the condition, the worry they felt about it, and the quality of the HCPs_ explanation and whether the women_s ratings varied by diagnosis.

MATERIALS AND METHODS Subjects Participants in this study were women enrolled in a National Cancer Institute-funded clinical trial to evaluate the use of optical spectroscopy in the diagnosis of CIN. Study participants were patients attending initial colposcopy appointments for follow-up of an abnormal Pap smear and were recruited at 1 of 3 participating clinical sites in Houston, TX: a public county hospital, a gynecologic oncology clinic in a comprehensive cancer center, and a university-affiliated gynecology clinic. Eligible women were 18 years or older, not pregnant, and had an abnormal Pap smear in the last 12 months. The research protocol was approved by institutional review boards at all 3 institutions. Procedures All women underwent colposcopy examination, colposcopy-directed biopsy, and repeat Pap smear. For this analysis, the biopsy findings were classified as (1) negative; (2) human papillomavirus (HPV)-associated changes, atypia, and CIN 1; (3) CIN 2 and CIN 3; or (4) cancer, indicating invasive carcinoma. Approximately 2Y3 weeks after colposcopy and biopsy, the women returned to the clinic to receive their results. The conversations that took place during these visits when results were communicated were audiorecorded. Immediately after each woman_s visit, a research assistant asked the patient 3 questions: BHow well did the health care provider explain your test results?[ BHow serious do you think your health problem is?[ and BHow worried are you about your health problem?[ Women were asked to answer using a scale of 1Y10, with 10 indicating the highest rating of the HCP_s explanation, seriousness, and worry. One-way analyses of variance were used to determine whether a woman_s diagnosis affected the answers to postvisit questions.

Each audiotape was transcribed, and its contents were coded by the first author using a deductive content analysis scheme. The content analysis was conducted with ATLAS.ti (ATLAS.ti, Berlin, Germany), a qualitative analysis program. ATLAS.ti allowed for the easy display of code domains, quotations for each code, matrix displays, and code and quotation searching. Data were exported to SPSS Version 14.0 (SPSS Inc., Chicago IL) for analysis. Using both methods allowed for a qualitative description of the communication content and comparison of the content by diagnosis. Because we could find no guidelines for the content of face-to-face communication of colposcopy test results, we searched the literature on (1) patients_ knowledge about cervical cancer, (2) cancer communication and specifically communication of cervical findings, and (3) the United Kingdom_s guidelines for what written information should be provided to women at different stages of the cervical cancer screening process [6Y8, 10Y12, 15Y24]. We used this information to develop codes for classifying the content of HCPYpatient discussions. The codes were expanded and refined in an iterative process on the basis of a pilot sample of 10 transcribed visits. The final codebook contained 37 codes describing communication among HCPs and the women who underwent screening (available from first author by request). The codes described the HCP_s communication of information related to diagnostic tests, the results and diagnosis, risk factors for cervical abnormalities, follow-up screening and treatment, the HCP_s asking whether women had questions and checking to make sure they understood the information communicated, and the woman_s questions and informationseeking statements. Each transcribed visit was coded and double checked by one coder (S.L.P.) and a random sample (16 of the visits, or 33%) were also coded by a second coder (P.A.P.). Interrater reliability statistics were calculated using the statistical program Simstat (Provalis Research, Montreal, Quebec, Canada). Agreement ranged from 88% to 100% agreement (mean, 97%), and Cohen kappa ranged from .45 to 1. The lowest kappa coefficient (only 1 code had a kappa statistic of G.60) applied to a category with a very skewed distribution; that is, the code was present in nearly all of the visits. The number of questions asked by each woman was summed, and an analysis of variance was conducted to determine whether diagnosis had an effect on the total number of questions asked and the women_s ratings of


Communicating Colposcopy Results

Table 1. Participant Characteristics (n = 47)

Age, y 18Y29 30Y39 40Y49 50Y59 60Y69 Race/ethnicity Black, non-Hispanic White, Hispanic White, non-Hispanic Other Spanish-language results visit Clinic Gynecologic oncology clinic Public county hospital University-affiliated gynecology clinic Education Elementary school (grades 1Y8) Some high school (grades 9Y11) Grade 12 or GED Some college (1Y3 y) College and above (4 y or more) Marital status Never married Married or living with partner Divorced or separated Widowed Histopathology diagnosis Negative for dysplasia CIN 1a CIN 2/3 Cancer Total

n

%

23 11 7 5 1

48.9 23.4 14.9 10.6 2.1

16 21 8 2 2

34.0 44.7 17.0 4.3 4.3

15 27 5

31.9 57.4 10.6

6 6 19 10 6

12.8 12.8 40.4 21.3 12.8

11 22 11 3

23.4 46.8 23.4 6.4

10 20 15 2 47

21.3 42.6 31.9 4.3

CIN, cervical intraepithelial neoplasia; GED, general educational development. a Including atypia and human papillomavirus-associated changes.

their HCP_s explanation, their seriousness, and their worry.

RESULTS Forty-seven visits including 47 women, 11 HCPs, and 7 friends or family members who accompanied patients were analyzed. Six of the women brought one or more friends or family members to the visit. Visitors included husbands, a mother, a father, a mother-in-law, a

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boyfriend, and a friend. The mean age of the women in this sample was 32.7 years, nearly half were white Hispanic, one third were African American, and the remainder were primarily white. Women_s biopsy results ranged from negative to invasive cancer. The majority of women were diagnosed with CIN 1, atypia, or HPVassociated changes (Table 1). The 11 HCPs were 5 female nurse practitioners, 1 male resident physician, 1 female resident physician, 3 female faculty physicians, and 1 male faculty physician. An interpreter, who was also a research assistant on this project, was present to interpret during 2 visits in which the woman spoke only Spanish. These audiotaped visits were later translated and transcribed in English. The woman_s ratings of severity, worry, their HCP_s explanation, and the total number of questions asked by the women are presented in Table 2. On average, women rated the perceived seriousness of their condition and worry about it as moderate and rated the HCP_s explanation highly. Women with more serious diagnoses reported higher levels of perceived seriousness and worry and asked more questions of their providers (Table 2). Diagnostic Test Information In 46 of 47 visits, HCPs mentioned the name of or described the test being discussed (i.e., Pap test or cervical biopsy). In 45 visits, HCPs discussed the test using its technical nameVi.e., BPap test[ or Bbiopsy.[ In 19 cases, HCPs used a lay term or description in addition to (n = 18) or in lieu of (n = 1) the technical name: BIwhen we took the biopsies (that little pinch that you felt before)I[ (20-year-old Hispanic woman with negative result). Result and Diagnosis Information In all visits, HCPs informed women of their diagnosis by providing the official name (e.g., BCIN 2,[ Bhigh grade

Table 2. Average Ratings by Participants (Range 1Y10) and Total Number of Questions Asked by Diagnosis Negative (n = 10)

Quality of HCP_s explanation Seriousness of condition Worry about condition Total number of questions asked by woman

CIN 1a (n = 20)

CIN 2/3 and cancer (n = 17)

Mean

(SD)

Mean

(SD)

Mean

Mean

9.8 2.6 2.1 0.5

(0.4) (2.1) (1.6) (.97)

9.6 3.9 4.3 0.85

(1.4) (2.5) (3.3) (1.2)

9.4 5.8 5.7 2.0

1.5 3.0 3.1 1.4

ANOVA F2,

44

0.24 5.06 4.73 5.83

Total (n = 47) p

Mean

(SD)

.786 .011 .014 .006

9.6 4.3 4.4 1.2

(1.3) (2.8) (3.2) (1.4)

CIN, cervical intraepithelial neoplasia; ANOVA, analysis of variance; HCP, healthcare provider. a Including atypia and human papillomavirus-associated changes.


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dysplasia,[ and Breactive atypia[) (n = 40), a description (e.g., Bmild changes,[ Bnormal,[ Bnegative,[ and Ba small change in the cells[) (n = 43), or both (n = 36). Results were frequently described as either normal or abnormal: BYou_re fine, everything came back normal. Well our Pap was normal as well as the biopsies.[ (29year-old white woman with atypia); BSo your Pap smear came back and it just showed that you had some abnormal cellsI[ (20-year-old Hispanic woman with negative result). Low-grade results were often described as Bmild[ changes, and negative or low-grade results were commonly described as good: BTissue results came back good. No cancer was found or anything.[ (40-year-old white woman with HPV-associated changes). Occasionally, a woman_s results were described by comparing them to what they were not: BThe reactive atypia is just a small change in the cells. It is really not dysplasia or cancerVit is a change that they can_t call normalI[ (40year-old white woman with HPV-associated changes). Human papillomavirus or genital warts were mentioned to 3 of the 47 womenV1 with a negative result with evidence of a flat condyloma, 1 with CIN 1, and 1 with CIN 3: BThe pathologist looks at the cells and what they see there are some changes that could be, we should consider human papillomavirus. You remember, last time we talked about that virus.[ (22-year-old black woman with CIN 1). Eight women whose biopsy results indicated HPV-associated changes were not told about HPV. Their results were described as Bnormal[ or Bmild changes.[ Seventeen women were told that their problem might go away or recede on its own: BMost of these lesions will go away on their own without treatment.[ (47-year-old Hispanic woman with atypia). Twenty women were told that the problem might return or get worse: BIeven after we treat you with this, there is a 10Y15% chance of abnormal tissue coming back, okay?[ (23-year-old black woman with CIN 3). Twelve women were told that their condition could develop into a cancer: BAnd if it_s left untreated it could possibly turn into a cancer.[ (23-yearold black woman with negative result). Discussions of potential regression were typically combined with a discussion of the risk of future progression or cancer (n = 15): BSometimes what this will do is regress on its own or go away on its own, but if it doesn_t do that, what it can do is change to a higher grade and go up to moderate or severe dysplasia.[ (23-year-old Hispanic woman with negative result). At 17 visits, HCPs described the range of cervical abnormalities: BThey grade the abnormal cells mild,

moderate, or severe changes.[ (43-year-old black woman with negative result). At 19 visits, the woman_s results were accurately described as either not being cancerous (n = 17) or as indicating cancer (n = 2). Health care providers also accurately described results as precancerous to 1 woman with CIN 1, 5 women with CIN 2, and 2 women with CIN 3: BYour Pap smear showed what we call highgrade dysplasia. You know dysplasia is a precancerous change, okay.[ (63-year-old black woman with CIN 2); BThese are all pre-cancer cells, dysplasia, no cancer was found.[ (22-year-old Hispanic woman with CIN 2). Information About Risk Factors for Cervical Abnormalities The causes of and risk factors for cervical abnormalities were rarely discussed. Sexual risk factors such as multiple sexual partners and early onset of sexual intercourse were mentioned in only one visit. Human papillomavirus was discussed as a causal agent or risk factor in only 3 visits. In 1 additional visit, the HCP referred to a prior discussion of HPV, indicating that this topic had previously been discussed. Comments about sexual risk factors and HPV were brief and emphasized the high prevalence of and absence of treatment for HPVVe.g., BSome of these individuals who have this problem have evidence of what we call human papillomavirus.[ (19year-old black woman with CIN 1); BIf you have it there is nothing that we can give you to make it go awayI[ (23-year-old black woman with CIN 3). In 3 visits, HCPs brought up the topic of smoking, another risk factor for cervical cancer, by asking the women if they smoked and by discussing the role of smoking in cervical cancer in 2 visits: BSmoking suppresses our immune system and may allow this problem to continue.[ (19-year-old black woman with CIN 1). Although only 2 women were asked whether they smoked, there were 6 additional smokers in our sample who were not queried about their smoking or given a smoking cessation message. Information on Follow-up Screening and Treatment All women in this study, including women with negative biopsy results, required some follow-up. Nearly all women (n = 41) were told when to return for the next screening or treatment appointment. The importance of follow-up was stressed to only 8 women, however. In most of the visits (n = 36), HCPs described what was going to happen next, whether it was continued



screening, a treatment, or both: BWe_ll do the treatment and then you_ll come back a month after for a checkup.[ (42-year-old Hispanic woman with CIN 1). Some women were also told what would happen next if the results of the next screening were found to be more serious (n = 18): BIf we see an area and take another biopsy and it goes up to moderate or severe or CIN 2 or CIN 3, that_s when we_ll do a treatment.[ (20-year-old black woman with CIN 1). Women were also told what would happen if the next results were less serious (n = 10): BOkay, and we_ll keep repeating your Pap smears until we get two normal Pap smears. When you get to two normal Pap smears, then you_ll get to go back to just coming once every year.[ (20-year-old Hispanic woman with negative result). A handful of women were given information about both possibilities (n = 5): BAnd if it just stays the same, we_ll probably just watch you. If it_s changing to high grade, then we_ll do a treatment, OK?[ (22-year-old black woman with CIN 1). The specific name of the next screening test (e.g., BPap[) or treatment procedure (e.g., BLEEP[ or Bloop electrosurgical excision procedure[) was mentioned by HCPs in most of the visits (n = 35). In 21 visits, the HCP provided a varying amount of details about the future screening examination or treatment (e.g., description of the numbing procedure, names and descriptions of the instruments used, and detailed purpose of the procedure): BYou_re aware during the procedure. We will numb your cervix. After we numb your cervix, we will use a tiny electrified loop wire to remove the abnormal tissue that is on your cervix.[ (42-year-old Hispanic woman with CIN 1). BIt_s done with an instrument that looks like a pencil with a little wire on the end and the tissue will be scooped out with that little wire. It_s like a little cheese cutter. But we do give you numbing medicine. Kind of like the dentists use if you_ve ever had any dental work. You feel a little pinch and a burn a couple of times as the numbing medicine goes in, then it_s all numb. And then we take that little instrument and scoop out that area where the cells are.[ (19-year-old Hispanic woman with CIN 1).

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of the questions asked of the women were open-ended, nor did any of the HCPs ask the women to rephrase what they had just been told. Most questions asked by the HCPs were very general: BDo you have any questions about your results? (29-year-old white woman with atypia); BDo you understand?[ (35-year-old Hispanic woman with CIN 3). Women were asked about their understanding of specific issues in only 3 visits: BAnd you understand what dysplasia is?[ (23-year-old black woman with negative result). Patient Questions and Information-Seeking Most women (n = 31) asked the HCP at least 1 question. Women primarily asked general questions seeking to clarify unresolved issues and to determine their future screening and treatment needs. Several women (n = 17) asked general questions about what came next: BSo what do I have to do now?[ (21-year-old Hispanic woman with CIN 3); BSo does thisIWill it just go away or does it go away, or is that why we continue to look at it for 6 months to see how it progresses?[ (23-year-old black woman with negative result). A few women asked specific questions about screening and treatment, such as when a treatment would take place (n = 6), when the next screening would occur (n = 5), or how long the treatment would take (n = 2). Twelve women asked general questions in an attempt to clarify the meaning of their results: BSo what was it that the biopsy found?[ (22-year-old Hispanic woman with CIN 2); BIs it normal?[ (36-year-old Hispanic woman with CIN 1). Four women asked specifically about dysplasia: BWhat is mild dysplasia?[ (22-year-old black woman with CIN 1). Four asked specifically about cancer: BThey aren_t cancer cells yet?[ (26-year-old Hispanic woman with CIN 1). Three of the individuals who accompanied women to their visits asked questions of the HCP. These questions were about the extent of the diagnosis, the treatment itself, and the role of diet in the development of CIN.

DISCUSSION Checking for Understanding During 40 visits, the HCPs asked at least once to see if the woman understood her results. In nearly half of the visits, a woman was asked about her level of understanding 2 or more times. Most commonly HCPs asked women if they had any questions (n = 38) or whether they understood what they had been told (n = 14). None

We found that a significant portion of most of the visits in this study was spent discussing future screening or treatment plans. Health care providers discussed some aspect of follow-up with every woman in this studyVincluding when she should return for her next appointment and descriptions of what will happen next including the names and descriptions of upcoming


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examinations and treatments. This is significant, given that in a previous study, discussion of a follow-up plan during a clinic visit was the strongest predictor of women coming back for recommended screening and diagnostic procedures [5]. Risk factors and causes of cervical cancer, such as HPV infection and cigarette smoking, were rarely discussed. Because HPV is sexually transmitted, discussions about HPV may cause the patient distress resulting from concerns about partner notification, concerns about infidelity, guilt, blame, and anxiety about transmission. It can be argued that focusing on the sexual nature of the virus may be unwarranted given that factors such as immune system recognition of the virus play a larger role than sexual transmission alone in the development of CIN and cancer. Clinicians may choose to downplay discussion of HPV or to avoid discussing its sexual nature in an effort to avoid distress. In this study, discussion of risk factors and causes of cervical cancer such as HPV may have occurred during earlier visits with these patients. Increased communication about HPV during clinical encounters may be warranted for the purpose of full disclosure and in light of the recent development and approval of Gardasil (Merck and Co., Inc., Whitehouse Station, NJ) [quadrivalent HPV (Types 6, 11, 16, 18) recombinant vaccine], a vaccine that can prevent 4 types of HPV in girls and young women. Greater awareness of HPV and its role in the development of cervical cancer among adult women may lead to increased uptake of the vaccine among their daughters and other young women. Our finding that HCPs focused on immediate management strategies yet rarely stressed the importance of follow-up is understandable given that imminent follow-up and treatment concerns were of immediate importance for the women and the HCPs. This finding coincides with the findings of a study in the United Kingdom [8]. In that study, Phillips and colleagues studied general practitioners_ mailed letters or telephone calls conveying results of mild and borderline Pap smears and found that communicating immediate management strategies was a common practice. Other findings of our study differed from those of the Phillips study. In that study, most general practitioners clarified when results did not indicate cancer, but fewer general practitioners mentioned the name of the diagnosed condition. In our study, HCPs rarely clarified when results did not indicate cancer but almost always provided the name of the diagnosed condition.

In another study, women reported being confused about their Pap smear results, in part, because of the use of technical terminology and their feeling unable to ask questions of their doctor [6]. In our study, in contrast, HCPs often used lay descriptions and terminology to help explain the results, and most women presumably felt able to ask questions. Sixty-six percent of all women asked at least 1 question of their provider. Some of the women_s questions and comments after HCPs descriptions indicated continuing confusion about examinations and treatment: BOh, so they didn_t do all that when I came the last time?[ (41-year-old black woman with cancer). In this study, when checking to see if the women understood or had any questions, providers asked only closed-ended questions. Women often answered Byes[ to these questions, although subsequent dialogue indicated that they did not understand what they had been told. These findings demonstrate that although opportunities for clarification, education, and the provision of healthpromoting messages were available in these visits, they were not consistently used. Recommendations for cancer communication discourage asking BDo you understand?[ and instead suggest a Bteach-back[ approach in which the patient responds to comprehension questions in his or her own words [18]. Educational sessions and written patient education materials have been shown to improve knowledge and adherence among women scheduled for colposcopy [13, 25, 26]. Well-designed patient education materials that follow current cancer communication recommendations and guidelines [15, 16, 18] may also be beneficial after the receipt of colposcopy results. These materials could supplement verbal information, convey additional information about smoking and HPV, and help to alleviate any ongoing confusion or questions. Our study has several limitations. Because our study was based on audiotapes of encounters, we were unable to capture nonverbal behaviors such as nods of agreement. In 8 visits, we captured HCP_s verbal descriptions of how he or she was simultaneously drawing a picture or diagram to further explain the results, test, or treatment procedures. Because our study population was drawn from 3 clinics in a single city, our sample may be unique. We also do not know what types of communication took place earlier or later in the screening, diagnostic, and treatment process. Information on risk factors for cervical cancer, such as HPV, may have been provided during the initial screening phase or during the examination



itself. It seems likely that risk factors would be discussed in more detail upon the first or early interactions with patients rather during a brief diagnostic session. The women_s ratings of the HCP_s explanation were high, demonstrating a ceiling effect. Women were asked to rate their HCPs_ explanation in the clinic by a research assistant. Out of concern about jeopardizing an ongoing clinical relationship with their HCP or concerns about a perceived relationship between the research assistant and HCP, women may have felt compelled to provide higher ratings than they felt were justified. Despite its limitations, our study sheds light on patientYprovider discussions about colposcopy and biopsy. Observation of patientYprovider interaction across the entire scope of cervical cancer screening and treatment would provide a more comprehensive description of communication practices. Future studies of diagnostic consultations should consider assessing patient_s health literacy, comprehension, areas of misunderstanding, and nonverbal behaviors. Such information will be useful in future efforts to increase patient_s knowledge and satisfaction, reduce anxiety, and improve adherence. Acknowledgments The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute or the National Institutes of Health. The authors thank the members of the Pre- and Post-Doctoral Seminar in the Behavioral Sciences at the University of Texas School of Public Health at Houston for their suggestions for the manuscript.

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