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The morning after on the internet: usage of and questions to the emergency contraception website
Contraception 72 (2005) 5 – 13
Original research article
The morning after on the internet: usage of and questions to the emergency contraception website Lisa Wynn, James TrussellT Office of Population Research, Princeton University, Wallace Hall, Princeton, NJ 08544, USA Received 8 February 2005; accepted 17 February 2005
Abstract Objective: The objective of this study is to understand the concerns of users of a medical information website on emergency contraception (EC). Methods: This study analyzes e-mails sent to the EC website www.Not-2-Late.com over a 5-year period. It also reports on the website’s most frequently viewed pages using Microsoft Site Server Analysis. Results: Of the 7022 e-mails received, 29% did not contain questions about EC. The remaining e-mails reveal that EC users are concerned with how to use EC (23%), side effects (21%), pregnancy (17%), whether EC is needed in a given situation (14%), EC access (8%), EC effectiveness (4%) and how EC works (3%). Analysis of website page visits shows that visitors were chiefly interested in how to use EC and how to interpret bleeding after EC use. Conclusion: The e-mails point to the need for further research on EC-related questions that cannot be answered with the extant medical literature but are of concern to patients— questions such as bleeding after EC use and sexual intercourse that occurs shortly after taking EC pills. The language that writers use to express themselves reveals how users conceptualize their contraceptive and sexual health experiences. Many writers referred to sex with a hormonal contraceptive but not a barrier contraceptive as bunprotected sex,Q suggesting that patients may be using terms that do not mean what medical professionals might expect. E-mails sent to the site also demonstrate the importance of alternative resources that provide accurate medical information for patients who are unable to access health care or to discuss certain subjects with their providers. D 2005 Elsevier Inc. All rights reserved.
1. Introduction The emergency contraception (EC) website www.Not-2Late.com was launched in 1994. Jointly operated by the Association of Reproductive Health Professionals and the Princeton University Office of Population Research (OPR), the peer-reviewed site provides accurate information about EC derived from the medical literature. It includes a searchable directory of clinicians willing to provide EC in the United States and parts of Canada. It also has a searchable database of emergency contraceptive pills (ECPs) — oral contraceptive pill brands that can be used for EC — in more than 200 countries. The single most popular page on the website (after the homepage) is the bfrequently asked questionsQ (FAQs) page.
T Corresponding author. Tel.: +1 609 258 4946; fax: +1 609 258 1039. E-mail address: [email protected] (J. Trussell). 0010-7824/$ – see front matter D 2005 Elsevier Inc. All rights reserved. doi:10.1016/j.contraception.2005.02.007
At the bottom of this page, readers are given the option to ask any additional question by e-mail. In this paper, we analyze the 7022 e-mails received over a 5-year period from July 1999 to June 2004. We also examine trends in website visits over 5 years based on an analysis of page requests received by the server. Both kinds of data indicate the interests and concerns of women and men about EC. The questions e-mailed to the site demonstrate the importance of websites that provide accurate medical information, particularly for women and men who are reluctant or unable to articulate their questions to their health care providers, who receive incorrect information from their health care providers or who do not have access to medical professionals. The questions illuminate areas that need to be addressed by health care providers when discussing EC with their patients. They also point to the need for further research on EC-related questions that cannot be answered with the extant medical literature but are of concern to patients.
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2. Materials and methods www.Not-2-Late.com was launched in 1994 as one of the first websites to provide medical information on the internet. It is hosted on a server at the Princeton University OPR. Currently, it is jointly operated, along with a sister EC hotline (1-888-www.Not-2-Late), by OPR and the Association of Reproductive Health Professionals; in 2003–2004, it was funded by grants from the Open Society Institute’s Program on Reproductive Health and Rights and the William and Flora Hewlett Foundation. The site is peer reviewed by a group of reproductive health experts and physicians and is frequently updated to reflect the current medical literature on EC (e.g., it was updated to state that both doses of the levonorgestrel-only ECP regimen could be taken at the same time, after two clinical trials found that doing so was just as effective as spacing the doses 12 h apart without increasing the incidence of side effects) [1,2]. It has no connection with any company that manufactures and sells EC. The site was originally created in English and Spanish; a French language site was added shortly after that, and an Arabic site, produced jointly with Ibis Reproductive Health, was added in 2003. The website’s most distinguishing feature is its interactive databases of EC providers and pills. The database of providers is a directory of clinicians (doctors, nurse practitioners and, in some states, pharmacists) in the United States and parts of Canada who are willing to prescribe EC. Providers voluntarily contact the OPR to be listed, and the provider database is verified annually, with each clinician being contacted by mail or by telephone to confirm the accuracy of his or her listing. The database is searchable by zip code, area code, city and state and by an interactive point-and-click GIS map of the United States. The database of worldwide pills lists all known brands of oral contraceptive pills that can be used for EC, the countries where they are available, the levels of estrogen ethinyl estradiol (if any) and progestin levonorgestrel in the pills and the proper dose needed. It is searchable by country and by pill brand. The site also contains a FAQs page with 40 questions, a references page, a links page, a page with current news items about EC and a database of EC-related educational and promotional materials from the United States and abroad, including client materials, provider education and training resources and media campaign materials. Microsoft’s Site Server Analysis program is used to record the most requested web pages each month. We used this information to track trends in the number of requests for each of the five most popular web pages from January 2000 to December 2004. After the website’s homepage, the FAQs index page is the most frequently visited web page nearly every month. Questions are periodically added to the website when emails sent to the site indicate reader interest in a topic not yet addressed. Recent additions include a question on
pregnancy risk from pre-ejaculatory fluid and another on when a pregnancy test will give accurate results. These categories quickly became two of the most frequently visited pages as soon as they were added to the site in December 2002. Using the same site server analysis, we analyzed the 20 most popular FAQs pages viewed over a 1-year period from January 2004 to December 2004. At the bottom of the FAQs index page, an option is offered to send an e-mail with questions or comments about EC to James Trussell. He answers each English language question, basing his answers on the medical literature on EC (much of which is summarized in the FAQs pages) and consulting the website’s peer reviewers when an unusual question requires further discussion; he forwards the Spanish and French language questions to colleagues for answers. The option to e-mail questions is offered purely as a service to site visitors, with anonymity ensured, so no form is submitted and no individual information is routinely gathered about correspondents. The data analyzed here are gleaned from the questions asked and information volunteered by those writing. The Institutional Review Panel (IRP) of Princeton University declared this project exempt from full IRP review because it used previously existing data with no identifying markers. We analyzed all English language e-mails received over the 5-year period from July 1999 to June 2004. These emails were reread by Lisa Wynn and grouped into the categories and subcategories described below. The first category consists of e-mails that do not contain questions — those that instead contain requests for educational and promotional materials, journalists’ inquiries, thanks for previous correspondence, commentary on the website and antiabortion messages. Also grouped in this category are emails that contain questions that are not about EC or related topics such as questions about sex, other forms of contraception and abortion. The remaining e-mails contain questions about EC, which were grouped into the following categories: questions about whether EC is needed, how to use EC, side effects, EC access, how EC works, EC effectiveness, pregnancy and other issues. When a correspondent indicated his or her sex or age, this was noted. Furthermore, correspondents who identified themselves as medical providers were flagged, and we analyzed their questions separately from the remainder, which we termed user questions. Note that because we did not ask writers to submit an identifying form, these user e-mails might well contain questions from providers who simply did not identify themselves as such. The e-mails with questions from users were also tabulated by day of the week. 3. Results We examined first the most popular pages on the EC website and then questions about EC sent by visitors to the website.
L. Wynn, J. Trussell / Contraception 72 (2005) 5–13 Table 1 Content of the five most frequently viewed pages on www.Not-2-Late.com Rank
Abbreviation
Description
1
Homepage
2
FAQs index page Providers index page
Provides basic information about EC, describes source of funding and authorship for the website, and contains links to other pages Lists 40 FAQs about EC
3
4
ECP info page
5
ECPs worldwide
Allows users to search a database of health care providers in the United States and two provinces of Canada who are willing to prescribe EC; searchable by area code, zip code, city and state or by an interactive point-and-click GIS map Gives information about combined and progestin-only ECPs, typical side effects, effectiveness and the time frame for using EC Allows users to search a database of hormonal contraceptives worldwide that have been studied for use as EC, including dedicated products; searchable by country as well as by pill brand
3.1. Web use trends Table 1 lists the content of the five most frequently visited pages on the website from January 2000 to December 2004. Fig. 1 shows trends by month for these pages over this 5-year period. Not surprisingly, the most frequently visited page is the homepage. The figures for the number of homepage requests also approximate the overall number of website visitors (as opposed to the category of website hits, which is much larger since one individual may view many different pages) if we assume that most website visitors start at the homepage. The second most visited page is the FAQs index page, which has a list of questions that each link to an individual question-and-answer (Q&A) page. Table 2 shows the content of the 20 most visited Q&A pages
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over the 1-year period (January 2004 –December 2004) in rank order. Fig. 2 shows the number of hits for each page during this same period. The top visited Q&A page is one that links to the searchable database of oral contraceptive pill brands worldwide that can be used for EC. This worldwide pills database also has a link from a menu button and can be reached from any page of the website, so it is not surprising that it is so frequently visited. The second and third most visited Q&A pages list the pills in the United States that can be used for EC (bU.S. pillsQ) and give the time frame for taking EC (btime frameQ). The next most visited Q&A page addresses the risk of pregnancy from a single act of unprotected intercourse (bpregnancy risk Q). The 5th most frequently viewed Q&A page is about when to expect the next period after taking ECPs (bnext mensesQ), and the 14th most viewed Q&A page is about bleeding after taking ECPs (bbleeding after ECPsQ). The popularity of these questions is evidence of users’ concerns about bleeding (or lack of bleeding) after taking ECPs. Other popular questions include the cost of ECPs (bECP cost Q), the pregnancy risk after being exposed to preejaculatory fluid (bpre-ejaculation riskQ), whether a prescription is needed to obtain EC (bprescriptionQ), common side effects (bECP side effectsQ), the effectiveness of EC (bEC effectivenessQ) and when in a woman’s menstrual cycle a pregnancy test will produce accurate results (bpregnancy test Q). Visitors show slightly less concern over whether EC causes abortions (bcause abortionQ), whether it protects against sex that took place after taking ECPs (bsex after ECPsQ), whether there is a limit to the number of times that EC can be used (brepeat useQ), the mechanism of action by which EC works (bmechanism of actionQ), whether other brands of hormonal contraceptives can be used for EC
50,000 45,000 40,000 35,000
Homepage (1,963,469)
30,000 25,000 20,000 15,000
FAQs index page (721,320) Providers index page (595,853)
10,000 ECP info page (395,783) 5,000
ECPs worldwide (267,416)
Ja
n0 Ap 0 r-0 0 Ju l-0 O 0 ct -0 Ja 0 n0 Ap 1 r-0 1 Ju l-0 O 1 ct -0 Ja 1 n0 Ap 2 r-0 2 Ju l-0 O 2 ct -0 Ja 2 n0 Ap 3 r-0 3 Ju l-0 O 3 ct -0 Ja 3 n0 Ap 4 r-0 4 Ju l-0 O 4 ct -0 Ja 4 n05
0
Fig. 1. The five most visited pages from January 2000 to December 2004. Total numbers for each page over the 5-year period are in parentheses. See Table 1 for a description of the content of each page.
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EC might arise (bwhen is EC neededQ) and what to do if the second dose is taken later than the prescribed 12 h after the first dose (bsecond dose lateQ).
Table 2 The 20 most frequently viewed Q&A pages on www.Not-2-Late.com Rank
Abbreviation
Question as it appears on the FAQs index page
1
ECPs worldwide
2
U.S. pills
3
Time frame
4
Pregnancy risk
5
Next menses
6 7
ECP cost Pre-ejaculation risk
8 9 10 11
Prescription ECP side effects EC effectiveness Pregnancy test
12 13 14 15
Cause abortion Sex after ECPs Bleeding after ECPs Repeat use
16 17
Mechanism of action Other pill brands
18 19
ECP instructions When is EC needed
20
Second dose late
bWhat birth control pills can be used for EC worldwide?Q bWhat birth control pills can be used for EC in the United States?Q bHow long after unprotected sex can ECPs be taken?Q bWhat is my risk of pregnancy from unprotected intercourse?Q bWhen should my next period come after I take ECPs?Q bHow much do ECPs cost?Q bWhat if I engage in unprotected sex but ejaculation does not occur? Is sperm present in pre-ejaculatory fluid?Q bDo I need a prescription to get ECPs?Q bWhat are the side effects of ECPs?Q bHow effective is EC?Q bWhen can I take a pregnancy test and be sure that it is accurate?Q bDoes use of EC cause an abortion?Q bWhat if I have sex after taking ECPs?Q bWhat if I bleed after taking ECPs?Q bIs there a limit to the number of times ECPs can be used?Q bHow does EC work?Q bCan pills other than those listed here be used for EC?Q bInstructions for using combined ECPsQ bIn what situations does the need for EC arise?Q bWhat if I take the second dose late?Q
(bother pill brandsQ), instructions for using combined ECPs (bECP instructionsQ), the situations in which the need for
3.2. E-mails Of the 7022 e-mails received in the 5-year period (July 1999–June 2004), 5839 (83%) were in English whereas 1164 (17%) were in Spanish and 19 (0.2%) were written in French or other languages. We only analyzed the English language e-mails received. From these, we next extracted those e-mails that did not contain questions about EC — 29% of all English language e-mails received (Table 3). Nearly half of these are journalists’ inquiries or requests for educational or promotional materials. Others are EC-related e-mails that are not questions, including stories shared by people on their experiences using or trying to access EC, thanks for a previous e-mail response and comments on the website. They also include a small number of antiabortion tirades (which, if there are any, contain merely rhetorical questions). E-mails that contain questions about non-EC topics were also eliminated. These represent 9% of the total English language e-mails received. Of these, 114 (2% of all English language e-mails received) ask about abortion, either medical or surgical. (These do not include e-mails about whether EC causes abortion, which are classified in the mechanism of action category.) One hundred eighty-nine (3%) of the English-language e-mails ask for advice in choosing an appropriate contraceptive method or pill brand. Many ask questions about sex, such as one from a man who wrote from Pakistan to ask whether his habit of daily masturbation would limit his chances of fathering future offspring. A small number of questions concerned issues Number of hits
0
10,000
20,000
30,000
40,000
50,000
60,000
70,000
80,000
ECPs worldwide US pills Timeframe Pregnancy risk Next menses ECP cost Preejaculation risk Q&A pages
Prescription ECP side effects EC effectiveness Pregnancy test Cause abortion Sex after ECPs Bleeding after ECPs Repeat use Mechanism of action Other pill brands ECP instructions When is EC needed Second dose late
Fig. 2. The 20 most visited Q&A pages from the FAQs from January 2004 to December 2004. See Table 2 for descriptions of the Q&A pages.
L. Wynn, J. Trussell / Contraception 72 (2005) 5–13 Table 3 English language e-mails that did not contain EC questions E-mail content
n
%
Requests for materials and journalist inquiries Thanks in response to previous e-mail Antiabortion tirade Comments on website Relating an EC story Questions about sex/contraception/reproduction Abortion: medical or surgical Advice on birth control Total
822 188 50 48 39 544 114 189 1691
14.1 3.2 0.9 0.8 0.7 9.3 2.0 3.2 29.0
that were not related to sex, abortion, contraception or reproduction (e.g., bDo diet pills really work? Q). The remaining 4148 (71%) of the English language emails received contain questions about EC. Of these, 5% (n =207) came from writers who identified themselves as health care providers; the other 95% (n =3941) are assumed to be e-mails from users. Sex was indicated, directly or indirectly, by 78% of the users. (We did not assume sex from the name of the e-mail account because people often write from a relative’s or a friend’s account, nor did we make assumptions about sex or age when e-mails contained flashing hearts, butterflies or unicorns. But we took clues from the content of the e-mails, as when a writer referred to her menstrual period or to taking ECPs or when someone said that he was writing about or on behalf of his girlfriend or wife.) Of these, 82% were from women and 18% from were men. It is interesting to note that the e-mails from health care providers had a similarly strong sex split: approximately 50% of the provider e-mails indicated sex, and 86% of these were from women. Table 4 shows separately the categories of EC questions asked by users and by health care providers. There were 3941 e-mails from users, which contained a total of 4731 questions. There were 207 e-mails from providers, and these contained a total of 238 questions. Note that in Table 4 and in subsequent paragraphs, we report the frequency of questions classified in a particular category as a percentage of all questions received from users and providers, respectively. The most frequently asked type of question was about how to use EC, representing 23% of all user questions. This category subsumes a range of questions, the most common of which was about whether a particular brand of oral contraceptive could be used for EC. Writers also asked about the time frame for EC use; most wrote within days of unprotected sex, but some wrote up to 3 weeks afterward, sometimes when they noticed that their period was late, asking if taking ECPs would do them any good. Users asked about drug interactions, such as whether antibiotic use would render ECPs less effective or whether they could drink alcohol or smoke cigarettes after using ECPs. Many wanted to know how to start or continue taking regular oral contraceptive pills after ECP use, and often they were concerned about the potentially disruptive effect of ECPs on their menstrual cycles and what that meant for their
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pill-taking schedule. Others asked whether repeat use of ECPs was safe or effective. Some wrote in an apparent panic after taking the second dose of pills several hours later than the prescribed 12 h after the first dose and wondered whether the ECPs would still be effective. After providers started to change their protocols to taking both doses of progestin-only ECPs at the same time, users were sometimes unsure how to reconcile this recommendation with the product labeling, which still advised taking two separate doses, and wrote to ask for clarification. A few women realized that they had taken the wrong dose of pills and wrote asking if EC would still work for them. Side effects were a concern in 21% of user questions, and most of these were questions about bleeding or the lack of it. Some started bleeding after taking ECPs and wanted to know if this bleeding was normal and whether it constituted an early menstrual period. Some experienced abnormally long periods after taking ECPs and were concerned. Others Table 4 E-mail questions about EC from users and providers Question
How to use EC Oral contraceptive brand question Drug interactions Starting/continuing oral contraceptives after ECPs Repeat use of ECPs Time frame for EC effectiveness Second dose late or early Will wrong dose of ECPs still work? Taking two doses at once Breast-feeding and ECPs Writing to verify/query doctor’s recommendation Vaginal insertion of ECPs Requests for protocols Side effects Bleeding after ECPs Risks/side effects to women Do ECPs harm fetus? Pregnancy: testing, risk and symptoms Whether EC is needed Sex after ECPs Pre-ejaculatory fluid Vomiting and repeating dose Other situations where EC is needed EC access How to get EC How minors get EC Cost of ECPs OTC status of ECPs Can men get ECPs EC effectiveness How EC works Mechanism of action Medication (or medical) abortion vs ECPs Other
% of questions asked by Users (n = 4731)
Providers (n = 238)
22.5 6.7 3.2 3.1
48.7 5.5 1.7 7.1
2.8 2.6 1.9 1.1 0.4 0.3 0.4
6.3 6.3 2.9 0.0 6.7 0.8 0.0
0.0 0.0 21.2 13.1 6.5 1.6 17.1 14.2 2.5 1.6 1.2 8.9 7.6 4.5 1.6 0.9 0.3 0.3 4.0 3.3 1.9 1.4 10.1
1.7 9.7 5.5 1.3 3.8 0.4 0.4 7.1 1.3 0.0 3.4 2.5 6.3 3.4 0.8 0.4 1.7 0.0 3.8 5.0 4.2 0.8 23.1
There were 3941 e-mails from users containing 4731 questions and 207 e-mails from providers containing 238 questions.
L. Wynn, J. Trussell / Contraception 72 (2005) 5–13 800 700 600 500 400 300 200 100
Sa tu rd ay
Fr id ay
da y Th ur s
W ed ne sd ay
Tu es da y
on da y
0
M
asked whether bleeding after taking ECPs meant that the pills had worked. The flip side of this concern involved questions from (or about) women who had not experienced bleeding after taking ECPs and wanted to know if no bleeding meant that ECPs had not worked for them or that they were pregnant or when they could expect their period. Other e-mails about side effects included questions about nausea, bloating, headaches, weight gain and whether ECPs would affect the fetus in the case of an already existing pregnancy or treatment failure. Questions about pregnancy represented 17% of all user questions. Many wanted to know how and when to test for pregnancy — in particular, when a woman could take a pregnancy test after ECP use and expect accurate results. Others wanted to know about the pregnancy risk entailed in a specific sex act. Still others asked about the symptoms of pregnancy, often describing physical symptoms in detail before asking, bDo you think I am pregnant? Q A few asked for help deciphering the lab results of a pregnancy blood test. Questions about pregnancy risk often preceded a question about whether EC was needed, which represented 14% of all user questions. This category contained some of the most graphic e-mails, with women and men describing a specific sex act —often in great detail — as a preface to asking whether they needed to take ECPs to prevent pregnancy. Some users had used withdrawal and subsequently were concerned about the pregnancy risk entailed in being exposed to pre-ejaculatory fluid, and a few asked how to tell whether any ejaculation had occurred. Others had vomited after taking ECPs and asked whether it was necessary to repeat the dose. Some wrote to ask whether they were protected against pregnancy from acts of intercourse that occurred after taking ECPs or between the two doses. EC access was a concern in 8% of the user questions. Most of these asked how to get ECPs in the state or country where they lived. Some asked about the cost of ECPs or whether parental notification or consent was required for a minor to obtain ECPs. A few asked whether ECPs were, or would be shortly, available over the counter and whether men could obtain ECP prescriptions for their girlfriends, wives or daughters. Only 4% of the user questions were about EC effectiveness. Even fewer (3%) asked how EC works. These consisted of questions about the mechanism of action and, less commonly, questions about the difference between EC and medication (or medical) abortion. An additional 10% of the questions could not be classified under any of the previous categories (including a number of questions about how to determine paternity after pregnancy resulted from sex with multiple partners followed by ECP use). It is instructive to compare user questions with the questions asked by health care providers. Their interests are strikingly different from the user e-mails (p b.001 based on the Fisher – Freeman – Halton test). Most of these questions (49%) are about use, including requests for EC prescribing
Su nd ay
10
Fig. 3. User e-mails by day of week.
protocols. Only 7% ask questions about whether EC is needed in a particular case or situation, and 6% ask about side effects. They are hardly interested at all in testing for pregnancy (only one question). Providers and users have similar levels of interest in how EC works, in EC effectiveness and in matters of EC access (both seem to have similar problems finding pharmacies that stock dedicated products). But fully 23% of the providers’ questions about EC were uncategorized. These include questions about Title X clinic funding for EC, the status of EC provision in Catholic hospitals, concerns about legal issues in providing (or refusing to provide) EC and questions about individual patients. Finally, Fig. 3 shows when e-mails with EC questions from users were received by day of week. The number of e-mails received starts to rise on Sunday, peaks on Monday and steadily declines throughout the rest of the week. This may support a common assumption that intercourse is most likely to occur on the weekend, but it also suggests that many users do not have access to the internet at home and must wait until they are back at work or at school on Monday to write. 4. Discussion The analysis of frequency of visits to the Q&A pages on the EC website www.Not-2-Late.com and the content of English language e-mails sent to the website provide important information about issues of concern to users and providers and about areas for further research. Of the 20 most frequently visited Q&A pages, 6 concerned how to use ECPs. Moreover, the largest category of e-mail questions from both users (23%) and providers (49%) was about how to use ECPs. This finding indicates that visitors to the website are not getting all of their questions answered by the EC website. In many cases, it is clear that those sending emails simply did not consult the FAQs page. In some cases, visitors to the website may have wanted reassurance from a real person or they may not have understood the answer they found in the Q&A pages. Some users are confused by contradictory advice given by their doctors, product labeling and the website (e.g., the website and protocols used by
L. Wynn, J. Trussell / Contraception 72 (2005) 5–13
some clinicians advise that both doses of levonorgestrelonly ECPs can be taken together whereas labeling in many countries including the United States and many providers still indicate that two separate doses should be taken 12 h apart). Users may simply wish to confirm what they think they heard their doctor or nurse (and the website) say. Providers often want references to the scientific literature justifying information on the website. Both visits to the Q&A pages and e-mail questions demonstrate the importance of providing resources with detailed information on ECP use, particularly if the ECP Plan B goes over the counter in the United States. Only 3% of the questions from users and 5% of the questions from providers concerned mechanism of action. Likewise, the Q&A page on how EC works was visited relatively infrequently (16th in the top 20 most frequently visited Q&A pages). 4.1. EC as gateway to questions about sex, contraception and reproductive health A high percentage of e-mails contained questions that were not about EC at all. These range from questions about abortion and how to obtain one, to asking for recommendations on a suitable contraceptive, to wholly unrelated questions about everything from anal intercourse to diet pills. It is perhaps not surprising that people using the internet to investigate abortion or contraception end up at www.Not-2-Late.com. But in some cases, one is hardpressed to understand why they decided to e-mail their questions to this website— such as the woman who wrote to ask if metronidazole tablets were useful and if they would make a person fat, the individual who wrote to ask where to find bnon-sexual graphic photographs of the female genitalia on the web,Q the man who wrote, bI would like to know when to identify the orgasm in a womanQ or the man who wrote for advice about his small penis. We often suggest that those sending such questions visit Columbia University’s website, (GoAskAlice.com. Gainer et al. [3] have argued that the large percentage of non-EC-related questions e-mailed to the NorLevo (NorLevo is a dedicated ECP available in nearly 50 countries) website demonstrates that EC is an bice-breaker for opening discussion on other means of contraception.Q It is certainly true that internet users searching for information on EC take the opportunity offered by an EC website to ask other questions about reproductive health. However, the fact that so many non-EC-related questions are asked is as likely due to the medium (e-mail) as it is to the message (EC): in this case, the option to ask anonymous questions about a medical topic without having to make or pay for a medical appointment. This anonymity may open the door for other sexual questions that patients may be unable or reluctant to ask their doctors [4]. Some writers address their e-mails to bDoctor Trussell,Q but others are more familiar: bYo, James!Q In particular, the informality of some of the questions suggests that women
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who may not speak the same language as their doctors feel that, in their e-mails at least, they can pose questions using their own colloquial style of writing or that they are just generally comfortable with this medium: Please help me I had unprotected sex on a monday n took the morning after pill however on the thursday the condom spilt 3 different times cos they was da flaved ones cos dats all we had. . .does this mean it wont work n i i will b pregent? plus how old do u have to be to get a abortion can you get one without ur mum n dad knowing? Also is there anything else apart from da morning after pill that i can take it make sure i dont cum pregent before its 2late???? please email me back as soon as possable as i dont think i can live another day knowing dis could fail pleaseeeeeeeee help meeee i dont no wot to doooooooooooooo
One of the key reasons that women do not ask for advance provision of EC and neglect to discuss risky sexual behavior with their doctors is fear of being judged as morally inadequate [5,6]. The format of the anonymous e-mail may allow women to speak more freely about their sexual behavior. The internet has become a popular medium for seeking out confidential sexual health information, particularly for young people [7,8]. This use of the internet shows how important it is to have accurate medical resources available on the web, especially given recent surveys that have estimated that between 66% and 78% of adult American internet users (who represent 66% of all American adults) [9] have used the internet to obtain medical information [10,11]. 4.2. Lessons for health professionals and researchers Some writers display a striking degree of ignorance about pregnancy risks entailed in certain acts as well as about contraceptive use and its effectiveness: I took emergency contraceptive pills this morning at 10am, and then took the second dose at 10pm. At about 1:30am after taking the second dose i had oral sex with my boyfriend, we both came. With me cumming, will that make the emergency contraceptive pills not work now? Or will the pills still work, because we didn’t have intercourse, we just gave each other oral sex? Please email me back A.S.A.P, i’m not sure what to do? if I am on plan b, I have finished the pills and all with in a couple hours or so. . .can dfingeringT mess up the process that is intended to help me not get pregnant? i have a question, my friend had sex and she thought she was going to get pregnant so her boy friend said if u drink vineger u won’t get pregnant and she didin’t get pregnant. Is that true if u drink vineger u won’t get pregnant? I don’t really know how to explain myself because this is the first time something like this has happened. On Sat. my boyfriend and I slept together, but I since we had no protection, I asked him to keep his boxers on. And ejaculation did not occur. I’m currently on my menstral
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cycle, is there a chance that I might be pregnant? Should I take emergency contraceptives?
Given the lack of uniform comprehensive sex education in the United States and many other countries, it is perhaps not surprising that many young people should display such ignorance. More striking, however, is the fact that fully 2% of all the user questions came from women who reported that they were regularly and consistently taking some sort of hormonal contraceptive (whether oral contraceptive pills, the patch, the vaginal ring or an injectable) yet wanted to know if they should take ECPs after they engaged in what they often described as unprotected sex. Presumably, unprotected refers to sex without a condom, regardless of whether another (more effective) form of hormonal contraception is used. It is heartening that such writers seem to be aware of the importance of condoms, which unlike ECPs also protect against sexually transmitted infections. But these questions reveal that many women and men do not understand the relative effectiveness of different forms of contraception. Indeed, some questions imply that the writer does not believe that bthe pillQ has any contraceptive value at all and may not even know why she is taking it. Perhaps public health professionals — because of very real concerns about sexually transmitted infections— have created this confusion by emphasizing the importance of condom use, sometimes to the exclusion of any other kind of protection during sex. These e-mails suggest the need for better counseling about contraceptive methods and their efficacy. Website visitors are very concerned about how to interpret bleeding, as indicated both by the number of emails that ask about bleeding and the number of visits to the Q&A pages on bleeding after taking ECPs and on when to expect the next menses. These questions ask, bIs this bleeding my period?Q; bDoes bleeding mean that EC has worked and I am not pregnant?Q; bDoes a small amount of bleeding or spotting indicate pregnancy dbreakthrough bleedingT?Q; and bDoes the absence of bleeding indicate either pregnancy or ECP failure?Q Users are nearly twice as concerned about bleeding (13%) as they are about all other side effects combined (8%). Gainer et al. [3] reported similar concerns by users of the NorLevo website who sent queries. The extent to which bleeding is of concern to women taking ECPs points to the need for further research and counseling about how ECPs affect bleeding patterns. Whether ECPs protect against pregnancy from intercourse after treatment is another area of concern for both users and providers. Some women ask if EC protects them against pregnancy for the rest of their cycle, and here it is easy to reply that bECPs will not protect against pregnancy from intercourse that occurs after the pills are taken.Q But other e-mails pose more complicated scenarios: what if a woman took ECPs and then experiences a condom break while having sex 24 h later? What about the teenager who takes the first dose of ECPs at noon and then has
unprotected sex that evening, a few hours before taking the second dose? These questions pose a quandary: medical professionals want to discourage women from thinking that ECPs will protect them from unprotected sex that occurs after treatment; when in doubt, the safe answer seems to be that repeating ECPs will do no harm (other than a repeat of the side effects) and may do some good (in terms of preventing a pregnancy). And yet, as some users themselves point out, it is illogical to assume that ECPs are absolutely ineffective against sexual intercourse that occurs shortly after they are taken. For many users, there are significant reasons including side effects, cost and difficulty getting to a clinic to get a new prescription to want to avoid unnecessary repeat use of ECPs. But no data are available on the effectiveness of precoital use of ECPs that can establish specific guidelines for advising users in these situations. 5. Conclusions In the United States, physicians do not routinely counsel women in advance about EC [12]. Women are often reluctant to ask for advance prescriptions for ECPs, and doctors rarely offer them without being asked [5]. So, when women do have a condom failure or fail to use contraception, they may not know about EC, and even if they do they may face a struggle finding a doctor who can prescribe ECPs for them and then filling that prescription. Unprotected intercourse often occurs on weekends or holidays when access to medical providers is limited. Web resources such as www.Not-2-Late.com can provide information about and improve access to EC. Such a website can also provide important information to doctors and researchers about the interests and concerns of women using EC. The e-mails we received have helped us recognize areas of concern that are not addressed on the website. For example, e-mails about the risk of pregnancy from pre-ejaculatory fluid led us to add that question to the list of FAQs and that Q&A page immediately became one of the more frequently viewed Q&A pages. When women and men write questions, the language, style and vocabulary they use for expressing these experiences can also reveal much about the way they are conceptualizing their contraceptive and sexual health experiences. It is important to examine the gaps between the language used by patients and medical professionals in order to improve communication and reduce misunderstandings as well as to improve knowledge about patient symptoms and experiences [13,14]. The fact that so many writers asked about the need for EC after intercourse that occurred while the woman was using some form of hormonal contraceptive, often referring to it as unprotected sex, suggests not only that women need more information about the effectiveness of different contraceptive methods but also that, in discussing these methods, health care providers need to keep in mind that their patients may be using terms that do not mean what medical professionals might expect them to mean.
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Acknowledgments We are grateful to Erin Gainer, Beth Jordan and Elizabeth Raymond for comments on an earlier draft of this paper. References [1] von Hertzen H, Piaggio G, Ding J, et al. Low dose mifepristone and two regimens of levonorgestrel for emergency contraception: a WHO multicentre randomized trial. Lancet 2002;360:1803 – 10. [2] Arowojolu AO, Okewole IA, Adekunle AO. Comparative evaluation of the effectiveness and safety of two regimens of levonorgestrel for emergency contraception in Nigerians. Contraception 2002;66:269– 73. [3] Gainer E, Sollet C, Ulmann M, Le´vy D, Ulmann A. Surfing on the morning after: analysis of an emergency contraception website. Contraception 2003;67:195 – 9. [4] Gelein K. Note: are online consultations a prescription for trouble? The uncharted waters of cybermedicine. Brooklyn Law Rev 2000;1:209– 58. [5] Fairhurst K, Ziebland S, Wyke S, Seaman P, Glasier A. Emergency contraception: why can’t you give it away? Qualitative findings from an evaluation of advance provision of emergency contraception. Contraception 2004;70:25 – 9. [6] Free C, Lee RM, Ogden J. Young women’s accounts of factors influencing their use and non-use of emergency contraception: indepth interview study. BMJ 2002;325:1393 – 8.
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[7] Borzekowski DLG, Rickert VI. Adolescent cybersurfing for health information: a new resource that crosses barriers. Arch Pediatr Adolesc Med 2001;155:813 – 7. [8] Rideout V. Generation Rx.com: how young people use the internet for health information. (a Kaiser Family Foundation survey). Menlo Park (CA)7 Kaiser Family Foundation; 2001 (http://www.kff.org/ entmedia/20011211a-index.cfm). [9] Taylor H. Internet penetration at 66% of adults (137 million) nationwide. The Harris Poll No.18, Apr. 17, 2002. (http://www. harrisinteractive.com/harris_poll/index.asp?PID = 295). [10] Fox S, Fallows D. Health searches and e-mail have become more commonplace, but there is room for improvement in searches and overall internet access. Washington (DC): Pew Internet and American Life Project, Internet Health Resources; 2003 (http://www.pewinternet.org/reports/pdfs/PIP_Health_Report_July_ 2003). [11] Reed J. Cybermedicine: defying and redefining patient standards of care. Indiana Law Rev 2004;3:845 – 78. [12] The Kaiser Family Foundation. Women’s health care providers’ experiences with emergency contraception, June 2003. Available at URL: (http://www.kff.org/womenshealth/3343-index.cfm). [13] Malterud K, B&rheim A. Peeing barbed wire: symptom experiences in women with lower urinary tract infection. Scand J Prim Health Care 1999;17:49 – 53. [14] Boyle CM. Difference between patients’ and doctors’ interpretation of some medical terms. BMJ 1970;2:286 – 9.
Original research article
The morning after on the internet: usage of and questions to the emergency contraception website Lisa Wynn, James TrussellT Office of Population Research, Princeton University, Wallace Hall, Princeton, NJ 08544, USA Received 8 February 2005; accepted 17 February 2005
Abstract Objective: The objective of this study is to understand the concerns of users of a medical information website on emergency contraception (EC). Methods: This study analyzes e-mails sent to the EC website www.Not-2-Late.com over a 5-year period. It also reports on the website’s most frequently viewed pages using Microsoft Site Server Analysis. Results: Of the 7022 e-mails received, 29% did not contain questions about EC. The remaining e-mails reveal that EC users are concerned with how to use EC (23%), side effects (21%), pregnancy (17%), whether EC is needed in a given situation (14%), EC access (8%), EC effectiveness (4%) and how EC works (3%). Analysis of website page visits shows that visitors were chiefly interested in how to use EC and how to interpret bleeding after EC use. Conclusion: The e-mails point to the need for further research on EC-related questions that cannot be answered with the extant medical literature but are of concern to patients— questions such as bleeding after EC use and sexual intercourse that occurs shortly after taking EC pills. The language that writers use to express themselves reveals how users conceptualize their contraceptive and sexual health experiences. Many writers referred to sex with a hormonal contraceptive but not a barrier contraceptive as bunprotected sex,Q suggesting that patients may be using terms that do not mean what medical professionals might expect. E-mails sent to the site also demonstrate the importance of alternative resources that provide accurate medical information for patients who are unable to access health care or to discuss certain subjects with their providers. D 2005 Elsevier Inc. All rights reserved.
1. Introduction The emergency contraception (EC) website www.Not-2Late.com was launched in 1994. Jointly operated by the Association of Reproductive Health Professionals and the Princeton University Office of Population Research (OPR), the peer-reviewed site provides accurate information about EC derived from the medical literature. It includes a searchable directory of clinicians willing to provide EC in the United States and parts of Canada. It also has a searchable database of emergency contraceptive pills (ECPs) — oral contraceptive pill brands that can be used for EC — in more than 200 countries. The single most popular page on the website (after the homepage) is the bfrequently asked questionsQ (FAQs) page.
T Corresponding author. Tel.: +1 609 258 4946; fax: +1 609 258 1039. E-mail address: [email protected] (J. Trussell). 0010-7824/$ – see front matter D 2005 Elsevier Inc. All rights reserved. doi:10.1016/j.contraception.2005.02.007
At the bottom of this page, readers are given the option to ask any additional question by e-mail. In this paper, we analyze the 7022 e-mails received over a 5-year period from July 1999 to June 2004. We also examine trends in website visits over 5 years based on an analysis of page requests received by the server. Both kinds of data indicate the interests and concerns of women and men about EC. The questions e-mailed to the site demonstrate the importance of websites that provide accurate medical information, particularly for women and men who are reluctant or unable to articulate their questions to their health care providers, who receive incorrect information from their health care providers or who do not have access to medical professionals. The questions illuminate areas that need to be addressed by health care providers when discussing EC with their patients. They also point to the need for further research on EC-related questions that cannot be answered with the extant medical literature but are of concern to patients.
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2. Materials and methods www.Not-2-Late.com was launched in 1994 as one of the first websites to provide medical information on the internet. It is hosted on a server at the Princeton University OPR. Currently, it is jointly operated, along with a sister EC hotline (1-888-www.Not-2-Late), by OPR and the Association of Reproductive Health Professionals; in 2003–2004, it was funded by grants from the Open Society Institute’s Program on Reproductive Health and Rights and the William and Flora Hewlett Foundation. The site is peer reviewed by a group of reproductive health experts and physicians and is frequently updated to reflect the current medical literature on EC (e.g., it was updated to state that both doses of the levonorgestrel-only ECP regimen could be taken at the same time, after two clinical trials found that doing so was just as effective as spacing the doses 12 h apart without increasing the incidence of side effects) [1,2]. It has no connection with any company that manufactures and sells EC. The site was originally created in English and Spanish; a French language site was added shortly after that, and an Arabic site, produced jointly with Ibis Reproductive Health, was added in 2003. The website’s most distinguishing feature is its interactive databases of EC providers and pills. The database of providers is a directory of clinicians (doctors, nurse practitioners and, in some states, pharmacists) in the United States and parts of Canada who are willing to prescribe EC. Providers voluntarily contact the OPR to be listed, and the provider database is verified annually, with each clinician being contacted by mail or by telephone to confirm the accuracy of his or her listing. The database is searchable by zip code, area code, city and state and by an interactive point-and-click GIS map of the United States. The database of worldwide pills lists all known brands of oral contraceptive pills that can be used for EC, the countries where they are available, the levels of estrogen ethinyl estradiol (if any) and progestin levonorgestrel in the pills and the proper dose needed. It is searchable by country and by pill brand. The site also contains a FAQs page with 40 questions, a references page, a links page, a page with current news items about EC and a database of EC-related educational and promotional materials from the United States and abroad, including client materials, provider education and training resources and media campaign materials. Microsoft’s Site Server Analysis program is used to record the most requested web pages each month. We used this information to track trends in the number of requests for each of the five most popular web pages from January 2000 to December 2004. After the website’s homepage, the FAQs index page is the most frequently visited web page nearly every month. Questions are periodically added to the website when emails sent to the site indicate reader interest in a topic not yet addressed. Recent additions include a question on
pregnancy risk from pre-ejaculatory fluid and another on when a pregnancy test will give accurate results. These categories quickly became two of the most frequently visited pages as soon as they were added to the site in December 2002. Using the same site server analysis, we analyzed the 20 most popular FAQs pages viewed over a 1-year period from January 2004 to December 2004. At the bottom of the FAQs index page, an option is offered to send an e-mail with questions or comments about EC to James Trussell. He answers each English language question, basing his answers on the medical literature on EC (much of which is summarized in the FAQs pages) and consulting the website’s peer reviewers when an unusual question requires further discussion; he forwards the Spanish and French language questions to colleagues for answers. The option to e-mail questions is offered purely as a service to site visitors, with anonymity ensured, so no form is submitted and no individual information is routinely gathered about correspondents. The data analyzed here are gleaned from the questions asked and information volunteered by those writing. The Institutional Review Panel (IRP) of Princeton University declared this project exempt from full IRP review because it used previously existing data with no identifying markers. We analyzed all English language e-mails received over the 5-year period from July 1999 to June 2004. These emails were reread by Lisa Wynn and grouped into the categories and subcategories described below. The first category consists of e-mails that do not contain questions — those that instead contain requests for educational and promotional materials, journalists’ inquiries, thanks for previous correspondence, commentary on the website and antiabortion messages. Also grouped in this category are emails that contain questions that are not about EC or related topics such as questions about sex, other forms of contraception and abortion. The remaining e-mails contain questions about EC, which were grouped into the following categories: questions about whether EC is needed, how to use EC, side effects, EC access, how EC works, EC effectiveness, pregnancy and other issues. When a correspondent indicated his or her sex or age, this was noted. Furthermore, correspondents who identified themselves as medical providers were flagged, and we analyzed their questions separately from the remainder, which we termed user questions. Note that because we did not ask writers to submit an identifying form, these user e-mails might well contain questions from providers who simply did not identify themselves as such. The e-mails with questions from users were also tabulated by day of the week. 3. Results We examined first the most popular pages on the EC website and then questions about EC sent by visitors to the website.
L. Wynn, J. Trussell / Contraception 72 (2005) 5–13 Table 1 Content of the five most frequently viewed pages on www.Not-2-Late.com Rank
Abbreviation
Description
1
Homepage
2
FAQs index page Providers index page
Provides basic information about EC, describes source of funding and authorship for the website, and contains links to other pages Lists 40 FAQs about EC
3
4
ECP info page
5
ECPs worldwide
Allows users to search a database of health care providers in the United States and two provinces of Canada who are willing to prescribe EC; searchable by area code, zip code, city and state or by an interactive point-and-click GIS map Gives information about combined and progestin-only ECPs, typical side effects, effectiveness and the time frame for using EC Allows users to search a database of hormonal contraceptives worldwide that have been studied for use as EC, including dedicated products; searchable by country as well as by pill brand
3.1. Web use trends Table 1 lists the content of the five most frequently visited pages on the website from January 2000 to December 2004. Fig. 1 shows trends by month for these pages over this 5-year period. Not surprisingly, the most frequently visited page is the homepage. The figures for the number of homepage requests also approximate the overall number of website visitors (as opposed to the category of website hits, which is much larger since one individual may view many different pages) if we assume that most website visitors start at the homepage. The second most visited page is the FAQs index page, which has a list of questions that each link to an individual question-and-answer (Q&A) page. Table 2 shows the content of the 20 most visited Q&A pages
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over the 1-year period (January 2004 –December 2004) in rank order. Fig. 2 shows the number of hits for each page during this same period. The top visited Q&A page is one that links to the searchable database of oral contraceptive pill brands worldwide that can be used for EC. This worldwide pills database also has a link from a menu button and can be reached from any page of the website, so it is not surprising that it is so frequently visited. The second and third most visited Q&A pages list the pills in the United States that can be used for EC (bU.S. pillsQ) and give the time frame for taking EC (btime frameQ). The next most visited Q&A page addresses the risk of pregnancy from a single act of unprotected intercourse (bpregnancy risk Q). The 5th most frequently viewed Q&A page is about when to expect the next period after taking ECPs (bnext mensesQ), and the 14th most viewed Q&A page is about bleeding after taking ECPs (bbleeding after ECPsQ). The popularity of these questions is evidence of users’ concerns about bleeding (or lack of bleeding) after taking ECPs. Other popular questions include the cost of ECPs (bECP cost Q), the pregnancy risk after being exposed to preejaculatory fluid (bpre-ejaculation riskQ), whether a prescription is needed to obtain EC (bprescriptionQ), common side effects (bECP side effectsQ), the effectiveness of EC (bEC effectivenessQ) and when in a woman’s menstrual cycle a pregnancy test will produce accurate results (bpregnancy test Q). Visitors show slightly less concern over whether EC causes abortions (bcause abortionQ), whether it protects against sex that took place after taking ECPs (bsex after ECPsQ), whether there is a limit to the number of times that EC can be used (brepeat useQ), the mechanism of action by which EC works (bmechanism of actionQ), whether other brands of hormonal contraceptives can be used for EC
50,000 45,000 40,000 35,000
Homepage (1,963,469)
30,000 25,000 20,000 15,000
FAQs index page (721,320) Providers index page (595,853)
10,000 ECP info page (395,783) 5,000
ECPs worldwide (267,416)
Ja
n0 Ap 0 r-0 0 Ju l-0 O 0 ct -0 Ja 0 n0 Ap 1 r-0 1 Ju l-0 O 1 ct -0 Ja 1 n0 Ap 2 r-0 2 Ju l-0 O 2 ct -0 Ja 2 n0 Ap 3 r-0 3 Ju l-0 O 3 ct -0 Ja 3 n0 Ap 4 r-0 4 Ju l-0 O 4 ct -0 Ja 4 n05
0
Fig. 1. The five most visited pages from January 2000 to December 2004. Total numbers for each page over the 5-year period are in parentheses. See Table 1 for a description of the content of each page.
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EC might arise (bwhen is EC neededQ) and what to do if the second dose is taken later than the prescribed 12 h after the first dose (bsecond dose lateQ).
Table 2 The 20 most frequently viewed Q&A pages on www.Not-2-Late.com Rank
Abbreviation
Question as it appears on the FAQs index page
1
ECPs worldwide
2
U.S. pills
3
Time frame
4
Pregnancy risk
5
Next menses
6 7
ECP cost Pre-ejaculation risk
8 9 10 11
Prescription ECP side effects EC effectiveness Pregnancy test
12 13 14 15
Cause abortion Sex after ECPs Bleeding after ECPs Repeat use
16 17
Mechanism of action Other pill brands
18 19
ECP instructions When is EC needed
20
Second dose late
bWhat birth control pills can be used for EC worldwide?Q bWhat birth control pills can be used for EC in the United States?Q bHow long after unprotected sex can ECPs be taken?Q bWhat is my risk of pregnancy from unprotected intercourse?Q bWhen should my next period come after I take ECPs?Q bHow much do ECPs cost?Q bWhat if I engage in unprotected sex but ejaculation does not occur? Is sperm present in pre-ejaculatory fluid?Q bDo I need a prescription to get ECPs?Q bWhat are the side effects of ECPs?Q bHow effective is EC?Q bWhen can I take a pregnancy test and be sure that it is accurate?Q bDoes use of EC cause an abortion?Q bWhat if I have sex after taking ECPs?Q bWhat if I bleed after taking ECPs?Q bIs there a limit to the number of times ECPs can be used?Q bHow does EC work?Q bCan pills other than those listed here be used for EC?Q bInstructions for using combined ECPsQ bIn what situations does the need for EC arise?Q bWhat if I take the second dose late?Q
(bother pill brandsQ), instructions for using combined ECPs (bECP instructionsQ), the situations in which the need for
3.2. E-mails Of the 7022 e-mails received in the 5-year period (July 1999–June 2004), 5839 (83%) were in English whereas 1164 (17%) were in Spanish and 19 (0.2%) were written in French or other languages. We only analyzed the English language e-mails received. From these, we next extracted those e-mails that did not contain questions about EC — 29% of all English language e-mails received (Table 3). Nearly half of these are journalists’ inquiries or requests for educational or promotional materials. Others are EC-related e-mails that are not questions, including stories shared by people on their experiences using or trying to access EC, thanks for a previous e-mail response and comments on the website. They also include a small number of antiabortion tirades (which, if there are any, contain merely rhetorical questions). E-mails that contain questions about non-EC topics were also eliminated. These represent 9% of the total English language e-mails received. Of these, 114 (2% of all English language e-mails received) ask about abortion, either medical or surgical. (These do not include e-mails about whether EC causes abortion, which are classified in the mechanism of action category.) One hundred eighty-nine (3%) of the English-language e-mails ask for advice in choosing an appropriate contraceptive method or pill brand. Many ask questions about sex, such as one from a man who wrote from Pakistan to ask whether his habit of daily masturbation would limit his chances of fathering future offspring. A small number of questions concerned issues Number of hits
0
10,000
20,000
30,000
40,000
50,000
60,000
70,000
80,000
ECPs worldwide US pills Timeframe Pregnancy risk Next menses ECP cost Preejaculation risk Q&A pages
Prescription ECP side effects EC effectiveness Pregnancy test Cause abortion Sex after ECPs Bleeding after ECPs Repeat use Mechanism of action Other pill brands ECP instructions When is EC needed Second dose late
Fig. 2. The 20 most visited Q&A pages from the FAQs from January 2004 to December 2004. See Table 2 for descriptions of the Q&A pages.
L. Wynn, J. Trussell / Contraception 72 (2005) 5–13 Table 3 English language e-mails that did not contain EC questions E-mail content
n
%
Requests for materials and journalist inquiries Thanks in response to previous e-mail Antiabortion tirade Comments on website Relating an EC story Questions about sex/contraception/reproduction Abortion: medical or surgical Advice on birth control Total
822 188 50 48 39 544 114 189 1691
14.1 3.2 0.9 0.8 0.7 9.3 2.0 3.2 29.0
that were not related to sex, abortion, contraception or reproduction (e.g., bDo diet pills really work? Q). The remaining 4148 (71%) of the English language emails received contain questions about EC. Of these, 5% (n =207) came from writers who identified themselves as health care providers; the other 95% (n =3941) are assumed to be e-mails from users. Sex was indicated, directly or indirectly, by 78% of the users. (We did not assume sex from the name of the e-mail account because people often write from a relative’s or a friend’s account, nor did we make assumptions about sex or age when e-mails contained flashing hearts, butterflies or unicorns. But we took clues from the content of the e-mails, as when a writer referred to her menstrual period or to taking ECPs or when someone said that he was writing about or on behalf of his girlfriend or wife.) Of these, 82% were from women and 18% from were men. It is interesting to note that the e-mails from health care providers had a similarly strong sex split: approximately 50% of the provider e-mails indicated sex, and 86% of these were from women. Table 4 shows separately the categories of EC questions asked by users and by health care providers. There were 3941 e-mails from users, which contained a total of 4731 questions. There were 207 e-mails from providers, and these contained a total of 238 questions. Note that in Table 4 and in subsequent paragraphs, we report the frequency of questions classified in a particular category as a percentage of all questions received from users and providers, respectively. The most frequently asked type of question was about how to use EC, representing 23% of all user questions. This category subsumes a range of questions, the most common of which was about whether a particular brand of oral contraceptive could be used for EC. Writers also asked about the time frame for EC use; most wrote within days of unprotected sex, but some wrote up to 3 weeks afterward, sometimes when they noticed that their period was late, asking if taking ECPs would do them any good. Users asked about drug interactions, such as whether antibiotic use would render ECPs less effective or whether they could drink alcohol or smoke cigarettes after using ECPs. Many wanted to know how to start or continue taking regular oral contraceptive pills after ECP use, and often they were concerned about the potentially disruptive effect of ECPs on their menstrual cycles and what that meant for their
9
pill-taking schedule. Others asked whether repeat use of ECPs was safe or effective. Some wrote in an apparent panic after taking the second dose of pills several hours later than the prescribed 12 h after the first dose and wondered whether the ECPs would still be effective. After providers started to change their protocols to taking both doses of progestin-only ECPs at the same time, users were sometimes unsure how to reconcile this recommendation with the product labeling, which still advised taking two separate doses, and wrote to ask for clarification. A few women realized that they had taken the wrong dose of pills and wrote asking if EC would still work for them. Side effects were a concern in 21% of user questions, and most of these were questions about bleeding or the lack of it. Some started bleeding after taking ECPs and wanted to know if this bleeding was normal and whether it constituted an early menstrual period. Some experienced abnormally long periods after taking ECPs and were concerned. Others Table 4 E-mail questions about EC from users and providers Question
How to use EC Oral contraceptive brand question Drug interactions Starting/continuing oral contraceptives after ECPs Repeat use of ECPs Time frame for EC effectiveness Second dose late or early Will wrong dose of ECPs still work? Taking two doses at once Breast-feeding and ECPs Writing to verify/query doctor’s recommendation Vaginal insertion of ECPs Requests for protocols Side effects Bleeding after ECPs Risks/side effects to women Do ECPs harm fetus? Pregnancy: testing, risk and symptoms Whether EC is needed Sex after ECPs Pre-ejaculatory fluid Vomiting and repeating dose Other situations where EC is needed EC access How to get EC How minors get EC Cost of ECPs OTC status of ECPs Can men get ECPs EC effectiveness How EC works Mechanism of action Medication (or medical) abortion vs ECPs Other
% of questions asked by Users (n = 4731)
Providers (n = 238)
22.5 6.7 3.2 3.1
48.7 5.5 1.7 7.1
2.8 2.6 1.9 1.1 0.4 0.3 0.4
6.3 6.3 2.9 0.0 6.7 0.8 0.0
0.0 0.0 21.2 13.1 6.5 1.6 17.1 14.2 2.5 1.6 1.2 8.9 7.6 4.5 1.6 0.9 0.3 0.3 4.0 3.3 1.9 1.4 10.1
1.7 9.7 5.5 1.3 3.8 0.4 0.4 7.1 1.3 0.0 3.4 2.5 6.3 3.4 0.8 0.4 1.7 0.0 3.8 5.0 4.2 0.8 23.1
There were 3941 e-mails from users containing 4731 questions and 207 e-mails from providers containing 238 questions.
L. Wynn, J. Trussell / Contraception 72 (2005) 5–13 800 700 600 500 400 300 200 100
Sa tu rd ay
Fr id ay
da y Th ur s
W ed ne sd ay
Tu es da y
on da y
0
M
asked whether bleeding after taking ECPs meant that the pills had worked. The flip side of this concern involved questions from (or about) women who had not experienced bleeding after taking ECPs and wanted to know if no bleeding meant that ECPs had not worked for them or that they were pregnant or when they could expect their period. Other e-mails about side effects included questions about nausea, bloating, headaches, weight gain and whether ECPs would affect the fetus in the case of an already existing pregnancy or treatment failure. Questions about pregnancy represented 17% of all user questions. Many wanted to know how and when to test for pregnancy — in particular, when a woman could take a pregnancy test after ECP use and expect accurate results. Others wanted to know about the pregnancy risk entailed in a specific sex act. Still others asked about the symptoms of pregnancy, often describing physical symptoms in detail before asking, bDo you think I am pregnant? Q A few asked for help deciphering the lab results of a pregnancy blood test. Questions about pregnancy risk often preceded a question about whether EC was needed, which represented 14% of all user questions. This category contained some of the most graphic e-mails, with women and men describing a specific sex act —often in great detail — as a preface to asking whether they needed to take ECPs to prevent pregnancy. Some users had used withdrawal and subsequently were concerned about the pregnancy risk entailed in being exposed to pre-ejaculatory fluid, and a few asked how to tell whether any ejaculation had occurred. Others had vomited after taking ECPs and asked whether it was necessary to repeat the dose. Some wrote to ask whether they were protected against pregnancy from acts of intercourse that occurred after taking ECPs or between the two doses. EC access was a concern in 8% of the user questions. Most of these asked how to get ECPs in the state or country where they lived. Some asked about the cost of ECPs or whether parental notification or consent was required for a minor to obtain ECPs. A few asked whether ECPs were, or would be shortly, available over the counter and whether men could obtain ECP prescriptions for their girlfriends, wives or daughters. Only 4% of the user questions were about EC effectiveness. Even fewer (3%) asked how EC works. These consisted of questions about the mechanism of action and, less commonly, questions about the difference between EC and medication (or medical) abortion. An additional 10% of the questions could not be classified under any of the previous categories (including a number of questions about how to determine paternity after pregnancy resulted from sex with multiple partners followed by ECP use). It is instructive to compare user questions with the questions asked by health care providers. Their interests are strikingly different from the user e-mails (p b.001 based on the Fisher – Freeman – Halton test). Most of these questions (49%) are about use, including requests for EC prescribing
Su nd ay
10
Fig. 3. User e-mails by day of week.
protocols. Only 7% ask questions about whether EC is needed in a particular case or situation, and 6% ask about side effects. They are hardly interested at all in testing for pregnancy (only one question). Providers and users have similar levels of interest in how EC works, in EC effectiveness and in matters of EC access (both seem to have similar problems finding pharmacies that stock dedicated products). But fully 23% of the providers’ questions about EC were uncategorized. These include questions about Title X clinic funding for EC, the status of EC provision in Catholic hospitals, concerns about legal issues in providing (or refusing to provide) EC and questions about individual patients. Finally, Fig. 3 shows when e-mails with EC questions from users were received by day of week. The number of e-mails received starts to rise on Sunday, peaks on Monday and steadily declines throughout the rest of the week. This may support a common assumption that intercourse is most likely to occur on the weekend, but it also suggests that many users do not have access to the internet at home and must wait until they are back at work or at school on Monday to write. 4. Discussion The analysis of frequency of visits to the Q&A pages on the EC website www.Not-2-Late.com and the content of English language e-mails sent to the website provide important information about issues of concern to users and providers and about areas for further research. Of the 20 most frequently visited Q&A pages, 6 concerned how to use ECPs. Moreover, the largest category of e-mail questions from both users (23%) and providers (49%) was about how to use ECPs. This finding indicates that visitors to the website are not getting all of their questions answered by the EC website. In many cases, it is clear that those sending emails simply did not consult the FAQs page. In some cases, visitors to the website may have wanted reassurance from a real person or they may not have understood the answer they found in the Q&A pages. Some users are confused by contradictory advice given by their doctors, product labeling and the website (e.g., the website and protocols used by
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some clinicians advise that both doses of levonorgestrelonly ECPs can be taken together whereas labeling in many countries including the United States and many providers still indicate that two separate doses should be taken 12 h apart). Users may simply wish to confirm what they think they heard their doctor or nurse (and the website) say. Providers often want references to the scientific literature justifying information on the website. Both visits to the Q&A pages and e-mail questions demonstrate the importance of providing resources with detailed information on ECP use, particularly if the ECP Plan B goes over the counter in the United States. Only 3% of the questions from users and 5% of the questions from providers concerned mechanism of action. Likewise, the Q&A page on how EC works was visited relatively infrequently (16th in the top 20 most frequently visited Q&A pages). 4.1. EC as gateway to questions about sex, contraception and reproductive health A high percentage of e-mails contained questions that were not about EC at all. These range from questions about abortion and how to obtain one, to asking for recommendations on a suitable contraceptive, to wholly unrelated questions about everything from anal intercourse to diet pills. It is perhaps not surprising that people using the internet to investigate abortion or contraception end up at www.Not-2-Late.com. But in some cases, one is hardpressed to understand why they decided to e-mail their questions to this website— such as the woman who wrote to ask if metronidazole tablets were useful and if they would make a person fat, the individual who wrote to ask where to find bnon-sexual graphic photographs of the female genitalia on the web,Q the man who wrote, bI would like to know when to identify the orgasm in a womanQ or the man who wrote for advice about his small penis. We often suggest that those sending such questions visit Columbia University’s website, (GoAskAlice.com. Gainer et al. [3] have argued that the large percentage of non-EC-related questions e-mailed to the NorLevo (NorLevo is a dedicated ECP available in nearly 50 countries) website demonstrates that EC is an bice-breaker for opening discussion on other means of contraception.Q It is certainly true that internet users searching for information on EC take the opportunity offered by an EC website to ask other questions about reproductive health. However, the fact that so many non-EC-related questions are asked is as likely due to the medium (e-mail) as it is to the message (EC): in this case, the option to ask anonymous questions about a medical topic without having to make or pay for a medical appointment. This anonymity may open the door for other sexual questions that patients may be unable or reluctant to ask their doctors [4]. Some writers address their e-mails to bDoctor Trussell,Q but others are more familiar: bYo, James!Q In particular, the informality of some of the questions suggests that women
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who may not speak the same language as their doctors feel that, in their e-mails at least, they can pose questions using their own colloquial style of writing or that they are just generally comfortable with this medium: Please help me I had unprotected sex on a monday n took the morning after pill however on the thursday the condom spilt 3 different times cos they was da flaved ones cos dats all we had. . .does this mean it wont work n i i will b pregent? plus how old do u have to be to get a abortion can you get one without ur mum n dad knowing? Also is there anything else apart from da morning after pill that i can take it make sure i dont cum pregent before its 2late???? please email me back as soon as possable as i dont think i can live another day knowing dis could fail pleaseeeeeeeee help meeee i dont no wot to doooooooooooooo
One of the key reasons that women do not ask for advance provision of EC and neglect to discuss risky sexual behavior with their doctors is fear of being judged as morally inadequate [5,6]. The format of the anonymous e-mail may allow women to speak more freely about their sexual behavior. The internet has become a popular medium for seeking out confidential sexual health information, particularly for young people [7,8]. This use of the internet shows how important it is to have accurate medical resources available on the web, especially given recent surveys that have estimated that between 66% and 78% of adult American internet users (who represent 66% of all American adults) [9] have used the internet to obtain medical information [10,11]. 4.2. Lessons for health professionals and researchers Some writers display a striking degree of ignorance about pregnancy risks entailed in certain acts as well as about contraceptive use and its effectiveness: I took emergency contraceptive pills this morning at 10am, and then took the second dose at 10pm. At about 1:30am after taking the second dose i had oral sex with my boyfriend, we both came. With me cumming, will that make the emergency contraceptive pills not work now? Or will the pills still work, because we didn’t have intercourse, we just gave each other oral sex? Please email me back A.S.A.P, i’m not sure what to do? if I am on plan b, I have finished the pills and all with in a couple hours or so. . .can dfingeringT mess up the process that is intended to help me not get pregnant? i have a question, my friend had sex and she thought she was going to get pregnant so her boy friend said if u drink vineger u won’t get pregnant and she didin’t get pregnant. Is that true if u drink vineger u won’t get pregnant? I don’t really know how to explain myself because this is the first time something like this has happened. On Sat. my boyfriend and I slept together, but I since we had no protection, I asked him to keep his boxers on. And ejaculation did not occur. I’m currently on my menstral
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cycle, is there a chance that I might be pregnant? Should I take emergency contraceptives?
Given the lack of uniform comprehensive sex education in the United States and many other countries, it is perhaps not surprising that many young people should display such ignorance. More striking, however, is the fact that fully 2% of all the user questions came from women who reported that they were regularly and consistently taking some sort of hormonal contraceptive (whether oral contraceptive pills, the patch, the vaginal ring or an injectable) yet wanted to know if they should take ECPs after they engaged in what they often described as unprotected sex. Presumably, unprotected refers to sex without a condom, regardless of whether another (more effective) form of hormonal contraception is used. It is heartening that such writers seem to be aware of the importance of condoms, which unlike ECPs also protect against sexually transmitted infections. But these questions reveal that many women and men do not understand the relative effectiveness of different forms of contraception. Indeed, some questions imply that the writer does not believe that bthe pillQ has any contraceptive value at all and may not even know why she is taking it. Perhaps public health professionals — because of very real concerns about sexually transmitted infections— have created this confusion by emphasizing the importance of condom use, sometimes to the exclusion of any other kind of protection during sex. These e-mails suggest the need for better counseling about contraceptive methods and their efficacy. Website visitors are very concerned about how to interpret bleeding, as indicated both by the number of emails that ask about bleeding and the number of visits to the Q&A pages on bleeding after taking ECPs and on when to expect the next menses. These questions ask, bIs this bleeding my period?Q; bDoes bleeding mean that EC has worked and I am not pregnant?Q; bDoes a small amount of bleeding or spotting indicate pregnancy dbreakthrough bleedingT?Q; and bDoes the absence of bleeding indicate either pregnancy or ECP failure?Q Users are nearly twice as concerned about bleeding (13%) as they are about all other side effects combined (8%). Gainer et al. [3] reported similar concerns by users of the NorLevo website who sent queries. The extent to which bleeding is of concern to women taking ECPs points to the need for further research and counseling about how ECPs affect bleeding patterns. Whether ECPs protect against pregnancy from intercourse after treatment is another area of concern for both users and providers. Some women ask if EC protects them against pregnancy for the rest of their cycle, and here it is easy to reply that bECPs will not protect against pregnancy from intercourse that occurs after the pills are taken.Q But other e-mails pose more complicated scenarios: what if a woman took ECPs and then experiences a condom break while having sex 24 h later? What about the teenager who takes the first dose of ECPs at noon and then has
unprotected sex that evening, a few hours before taking the second dose? These questions pose a quandary: medical professionals want to discourage women from thinking that ECPs will protect them from unprotected sex that occurs after treatment; when in doubt, the safe answer seems to be that repeating ECPs will do no harm (other than a repeat of the side effects) and may do some good (in terms of preventing a pregnancy). And yet, as some users themselves point out, it is illogical to assume that ECPs are absolutely ineffective against sexual intercourse that occurs shortly after they are taken. For many users, there are significant reasons including side effects, cost and difficulty getting to a clinic to get a new prescription to want to avoid unnecessary repeat use of ECPs. But no data are available on the effectiveness of precoital use of ECPs that can establish specific guidelines for advising users in these situations. 5. Conclusions In the United States, physicians do not routinely counsel women in advance about EC [12]. Women are often reluctant to ask for advance prescriptions for ECPs, and doctors rarely offer them without being asked [5]. So, when women do have a condom failure or fail to use contraception, they may not know about EC, and even if they do they may face a struggle finding a doctor who can prescribe ECPs for them and then filling that prescription. Unprotected intercourse often occurs on weekends or holidays when access to medical providers is limited. Web resources such as www.Not-2-Late.com can provide information about and improve access to EC. Such a website can also provide important information to doctors and researchers about the interests and concerns of women using EC. The e-mails we received have helped us recognize areas of concern that are not addressed on the website. For example, e-mails about the risk of pregnancy from pre-ejaculatory fluid led us to add that question to the list of FAQs and that Q&A page immediately became one of the more frequently viewed Q&A pages. When women and men write questions, the language, style and vocabulary they use for expressing these experiences can also reveal much about the way they are conceptualizing their contraceptive and sexual health experiences. It is important to examine the gaps between the language used by patients and medical professionals in order to improve communication and reduce misunderstandings as well as to improve knowledge about patient symptoms and experiences [13,14]. The fact that so many writers asked about the need for EC after intercourse that occurred while the woman was using some form of hormonal contraceptive, often referring to it as unprotected sex, suggests not only that women need more information about the effectiveness of different contraceptive methods but also that, in discussing these methods, health care providers need to keep in mind that their patients may be using terms that do not mean what medical professionals might expect them to mean.
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Acknowledgments We are grateful to Erin Gainer, Beth Jordan and Elizabeth Raymond for comments on an earlier draft of this paper. References [1] von Hertzen H, Piaggio G, Ding J, et al. Low dose mifepristone and two regimens of levonorgestrel for emergency contraception: a WHO multicentre randomized trial. Lancet 2002;360:1803 – 10. [2] Arowojolu AO, Okewole IA, Adekunle AO. Comparative evaluation of the effectiveness and safety of two regimens of levonorgestrel for emergency contraception in Nigerians. Contraception 2002;66:269– 73. [3] Gainer E, Sollet C, Ulmann M, Le´vy D, Ulmann A. Surfing on the morning after: analysis of an emergency contraception website. Contraception 2003;67:195 – 9. [4] Gelein K. Note: are online consultations a prescription for trouble? The uncharted waters of cybermedicine. Brooklyn Law Rev 2000;1:209– 58. [5] Fairhurst K, Ziebland S, Wyke S, Seaman P, Glasier A. Emergency contraception: why can’t you give it away? Qualitative findings from an evaluation of advance provision of emergency contraception. Contraception 2004;70:25 – 9. [6] Free C, Lee RM, Ogden J. Young women’s accounts of factors influencing their use and non-use of emergency contraception: indepth interview study. BMJ 2002;325:1393 – 8.
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[7] Borzekowski DLG, Rickert VI. Adolescent cybersurfing for health information: a new resource that crosses barriers. Arch Pediatr Adolesc Med 2001;155:813 – 7. [8] Rideout V. Generation Rx.com: how young people use the internet for health information. (a Kaiser Family Foundation survey). Menlo Park (CA)7 Kaiser Family Foundation; 2001 (http://www.kff.org/ entmedia/20011211a-index.cfm). [9] Taylor H. Internet penetration at 66% of adults (137 million) nationwide. The Harris Poll No.18, Apr. 17, 2002. (http://www. harrisinteractive.com/harris_poll/index.asp?PID = 295). [10] Fox S, Fallows D. Health searches and e-mail have become more commonplace, but there is room for improvement in searches and overall internet access. Washington (DC): Pew Internet and American Life Project, Internet Health Resources; 2003 (http://www.pewinternet.org/reports/pdfs/PIP_Health_Report_July_ 2003). [11] Reed J. Cybermedicine: defying and redefining patient standards of care. Indiana Law Rev 2004;3:845 – 78. [12] The Kaiser Family Foundation. Women’s health care providers’ experiences with emergency contraception, June 2003. Available at URL: (http://www.kff.org/womenshealth/3343-index.cfm). [13] Malterud K, B&rheim A. Peeing barbed wire: symptom experiences in women with lower urinary tract infection. Scand J Prim Health Care 1999;17:49 – 53. [14] Boyle CM. Difference between patients’ and doctors’ interpretation of some medical terms. BMJ 1970;2:286 – 9.