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Abstract
Background The levonorgestrel intrauterine system (LNG-IUS) is a contraceptive method that can cause irregular bleeding and cramping during the first 6 months of use. Expected side effects are common reasons given for LNG-IUS device discontinuation within 12 months of use. Anticipatory counselling regarding expected LNG-IUS side effects may reduce method discontinuation and improve patient satisfaction. Educational videos could improve anticipatory counselling for LNG-IUS users; however, none have been developed. This article describes the process of developing an anticipatory counselling video with input from women in the first 6 months of LNG-IUS use and from family planning (FP) experts.
Methods We used a participatory, iterative process to develop an anticipatory counselling video about the first 6 months of LNG-IUS use. We developed a preliminary draft using evidence from the published literature. We sought feedback from 11 FP experts and 49 LNG-IUS users to revise the script before creating the final video.
Results FP experts suggested balancing negative with positive information and using colloquial language. LNG-IUS users requested more detailed information on the LNG-IUS mechanism of action and expected side effects in the form of statistics, infographic animations, testimonials from LNG-IUS users, and technical as opposed to colloquial language. The final video is 6 min in length and features seven LNG-IUS users, three physicians, and infographic animations.
Conclusion Including input from FP experts and LNG-IUS users in the development process resulted in a 6-min anticipatory counselling video that will be piloted among patients on the day of their LNG-IUS insertion.
- contraceptive counseling
- long-acting reversible contraception
- health education
- anticipatory counseling
- hormonal contraception
- qualitative research
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- contraceptive counseling
- long-acting reversible contraception
- health education
- anticipatory counseling
- hormonal contraception
- qualitative research
Key messages
Patient and family planning expert opinions differed on how best to present information on levonorgestrel intrauterine system (LNG-IUS) side effects to new users.
Patient feedback into the video development process resulted in detailed information on device mechanisms and side effects presented by real life LNG-IUS users, infographic animations, and statistics.
Introduction
Levonorgestrel-containing intrauterine systems (LNG-IUS) are highly effective contraceptives approved for use for 3–5 years in the USA, depending on LNG-IUS type.1 During the first 6 months after LNG-IUS insertion, referred to herein as the ‘adjustment period’, up to 25% of LNG-IUS users experience intermittent spotting.2–4 Although LNG-IUS user satisfaction and continuation is higher than more commonly used hormonal contraceptive methods, such as the pill and the contraceptive injection, 12% of users discontinue LNG-IUS use within the first year.5 Studies suggest that expected side effects like cramping and irregular bleeding are major reasons for LNG-IUS user dissatisfaction and early discontinuation.6–8
Patient education videos are emerging as an effective way to enhance counselling for patients in clinical settings or at home after medical intervention.9–12 Contraceptive counselling videos have been shown to increase patient knowledge, participation in decision-making, and positive attitudes toward contraception.13 One evaluation of a video to counsel patients on intrauterine device (IUD) side effects showed increased patient knowledge and acceptance of the IUD, as well as willingness to consider the IUD as a contraceptive option.14 Another small pilot of a provider-developed educational video regarding the single-rod contraceptive implant found that patients randomised to watch the video reported it was highly acceptable, although there were no differences in patient information recall about their device at 6 months.15
Anticipatory counselling provides information about what a patient may expect from a new treatment or medication before administration and may improve patient satisfaction and continuation with long-acting hormonal contraceptive methods such as the LNG-IUS.16 A study of 350 Mexican women initiating the 3-month injectable, depot medroxyprogesterone acetate (DMPA), found significant differences in method satisfaction and continuation in women randomised to receive anticipatory counselling as opposed to standard counselling.17 Another study in Bolivia found that when women were given anticipatory information about side effects at their initial DMPA injection, they were more likely to continue using DMPA at 1 year than women who were not given anticipatory guidance.18
Most literature related to LNG-IUS counselling focuses on contraceptive method choice, rather than the management of common LNG-IUS side effects during the adjustment period.19–21 Developing an anticipatory counselling video with LNG-IUS user input is important because of a documented disconnect between counselling that prioritises IUD effectiveness, over patients' desire for more comprehensive information on side effects.19 20 In contrast to other contraceptive counselling videos in the USA, we developed an anticipatory counselling video about the LNG-IUS adjustment period by prioritising content suggestions from LNG-IUS users in the midst of the 6-month adjustment period.
Methods
Patient involvement
Patients were not involved in the design, execution, or dissemination of this study. However, patient preferences and input strongly influenced the video content.
Video development process
We developed the video using an iterative process from conception to final product. First, we performed a background literature search examining common LNG-IUS side effects3–6 22 and use of counselling videos in healthcare settings9–15 to develop a video script (version 1). Next, we interviewed family planning (FP) experts from around the USA for their input on the version 1 script. After synthesising FP expert input into the version 2 script, we held focus groups (FGs) with LNG-IUS users who were in the midst of the 6-month adjustment period to get their feedback on the script contents. We revised the script based on LNG-IUS user feedback into version 3, which we used to film the final video.
Data collection
Family planning expert informant feedback
The research team sent an email to the Society of Family Planning (SFP) listserv asking for members to review the video script. SFP is a professional organisation in the USA, which includes a wide range of health professionals and researchers dedicated to the scientific study of family planning. Eleven FP practitioners from across the USA representing multiple disciplines provided feedback on version 1 of the script. We solicited their feedback through conference calls or email. Questions focused on script version 1 for accuracy, evidence base, clarity, and cultural appropriateness.
We recorded and transcribed the conversations. We collated the call transcripts and written FP expert feedback received via email to create a summary report with suggestions for each topic area covered. We used this report to edit the version 1 script and create version 2, which was presented to FG participants.
LNG-IUS user focus groups
We recruited a convenience sample of adult female patients from University of Washington (UW) clinics in Seattle, WA, USA to participate in FGs. Female patients aged 18 years or older who could read and speak English and had an LNG-IUS placed at a UW-affiliated clinic within the last 6 months were eligible to participate.
Research staff identified eligible patients within the UW electronic health records and contacted them via email. We sent 1700 emails to eligible patients, asking them to contact the research team if they were interested in participating. A total of 320 potential participants responded and 49 patients who met the eligibility criteria were able to participate in one of seven pre-scheduled hour-long FGs conducted during September and October 2015 at the University of Washington in Seattle, WA, USA.
The lead author, who does not provide clinical care and is trained in qualitative data collection, conducted FG discussions. FG participants read a copy of the version 2 script while research staff played an audio recording that enacted provider and patient roles within the script. We asked FG participants about the script clarity, whether the information addressed participant questions and concerns about the LNG-IUS adjustment process, whether the script was culturally appropriate, and their preferences for how to present the information on video. All FGs were audio-recorded and professionally transcribed.
Video development
We revised video script version 2 into the final script (version 3) based on FG participant feedback. We hired a local film director to film and edit the video. Using Craigslist, Facebook, and student listservs, we recruited LNG-IUS users from the community to share their experiences on camera. We developed a list of questions for community members to elicit specific anecdotes that were requested by FG participants. We also recruited three local physicians, one obstetrician-gynaecologist, one family medicine physician, and one adolescent medicine physician to appear in the video. Physicians used version 3 of the video script to describe important information about LNG-IUS mechanisms and side effects.
Data analysis
Family planning expert feedback
We analysed FP expert feedback using content analysis by tallying the responses for each question asked during phone calls. Frequent FP expert responses shaped version 2 of the script.
Focus group transcripts
We performed content analysis using an inductive approach to develop the codebook and themes from the FG discussions, and a deductive approach to quantify major themes across and within transcripts.23 We coded transcripts using Dedoose qualitative software (v7.0.21).
We created an a priori codebook based on researcher notes from the FG conversations. We organised the codebook by three main parent codes: directional (add, keep, change, remove), contextual (how information should be presented) and descriptive (what specific information should be presented). Two members of the research team independently coded the transcripts. Any coding discrepancies were resolved via a consensus process.
Results
Family planning expert feedback
Fourteen FP experts responded to our initial request for feedback, and eleven were able to participate. Two participants were family physicians, four were obstetrician-gynaecologists, one was a social worker, and four were contraception researchers. Nine provided feedback through conference calls and two sent feedback via email. FP experts suggested starting the script by describing the benefits of the LNG-IUS before leading into the more challenging aspects of the adjustment period, reducing technical information and statistics, and adding colloquial language to increase clarity.
LNG-IUS user focus group feedback
Forty-nine adult women (mean age 28 ± 7 years) participated in seven 1-hour- FGs. The majority of participants were white and had commercial insurance at the time of their LNG-IUS insertion (table 1).
Characteristics of levonorgestrel intrauterine system users who participated in focus group discussions (n=47)*
We obtained participant demographic information from UW patient electronic health records. Three main themes emerged from the FGs: (1) the desire for technical information on the LNG-IUS device via statistics and infographics; (2) contextualising user experiences by presenting LNG-IUS user stories; and (3) language changes to increase clarity, relatability, and cultural appropriateness. Table 2 provides representative quotes for each major theme.
Theme 1: additional technical information
FG participants thought additional information, especially statistics, could help normalise the adjustment period experience. They specifically requested data on LNG-IUS side effects presented as infographics or other types of data visualisation. They also requested more detailed descriptions about the frequency and intensity of side effects, LNG-IUS mechanism of action, and when to call a healthcare provider. Participants thought that statistics and facts legitimise phrases like ‘healthy’ and ‘safe’ in version 2 of the script.
Theme 2: contextualising the range of LNG-IUS user experiences
FG participants thought that statistical and medical information was best delivered by a provider, but hearing first-hand accounts from other LNG-IUS users was the best way to communicate the range of side effects. Participants suggested presenting both positive and negative experiences of real LNG-IUS users to help prepare new users for the adjustment period. They mostly agreed that an overly positive tone was inappropriate for the timing of the video (post-LNG-IUS insertion), as the patient would have ostensibly chosen this method for the positive benefits. They felt that hearing the stories of other LNG-IUS users would provide context for their experiences and ease concerns about ‘not being normal’.
Theme 3: language changes
Contrary to FP expert suggestions, FG participants wanted technical medical language and recommended removing all colloquial and vague language in the video. FG participants reported the script language was similar to counselling they received from their providers and did not add much value. Terms like ‘light bleeding’ and ‘spotting’, while defined in the published literature,24 25 were not considered technical terms consistent with FG participant personal experiences and categorisation of their own bleeding.
Final video
The final video contains five different sections: an introduction explaining every user will have a different experience with the LNG-IUS; the mechanisms behind bleeding and cramping; information on partners feeling the IUD strings; when to call a healthcare provider; and where to find trusted online information about the LNG-IUS. Each section contains infographics, scripted information presented by physicians, and unscripted narratives from seven real LNG-IUS users.
Discussion
Using an iterative development process that included input from FP experts and LNG-IUS users, we created a 6-min anticipatory counselling video. Through this process, we identified that FP expert input and women’s preferences for information about the LNG-IUS did not always align, underscoring the importance of involving patients in the development of contraceptive educational tools.
A large body of literature and healthy debate exist about how to provide high-quality counselling for patients who are selecting a contraceptive method.26–28 However, patients who have already chosen an LNG-IUS receive little guidance to help them navigate expected side effects.19–21 To our knowledge, there is no other LNG-IUS counselling video that heavily incorporates patient preferences into video development and addresses insufficient counselling about the adjustment period after LNG-IUS insertion. Providing anticipatory counselling about hormonal contraceptive side effects has the potential to increase patient satisfaction with contraceptive methods.13–15 This video may be well poised to address patient concerns regarding side effects and mechanisms of action because it utilises language and content suggested by new LNG-IUS users in the midst of the first 6 months of LNG-IUS use, especially as many of our FG participants reported feeling unprepared for the adjustment period despite receiving counselling from their providers.
We gleaned several important insights during the development process that could inform the development of other educational tools for contraceptive users. First, we were challenged to think critically about the language we use to describe pain and bleeding and recognise that patient and clinician perceptions regarding bleeding often differ. FG participants pointed to the terms ‘light bleeding’ and ‘spotting’ as misleading and not representative of their personal experiences. While providers may be familiar with published literature that defines spotting as blood loss that does not require sanitary protection,25 and typical bleeding after LNG-IUS placement as ‘spotting',3 FG participants indicated these terms were vague and unhelpful. Other investigations into contraceptive counselling preferences also indicate that patients prefer reassurance, support and validation of their personal experience to feel like their concerns are being addressed by their provider, as opposed to recitation of the evidence.27–29 Second, prioritising feedback from LNG-IUS users changed the video, from a theory and expert-driven video focusing on the positive aspects of LNG-IUS use, to a video that features real-life stories of LNG-IUS users, including LNG-IUS user experiences with expulsion and unexpected bleeding longer than 6 months.
This project had several limitations. Our FG participants were all English-speaking, mostly white, privately insured, and had their LNG-IUS placed within the same health system in the Greater Seattle, WA area. FG participant motivations for participating were unclear; they may have had more difficult LNG-IUS experiences (although this may be the natural audience for this video), suboptimal care or counselling, or be seeking more information about their LNG-IUS, and thus selection bias may have influenced our findings. Because we used a convenience sample, we cannot generalise our findings to other LNG-IUS users. Also, our finding that FG participants desired more technical information on their LNG-IUS may relate to higher education or income in our sample of primarily insured women and thus may not be applicable to women with lower education. However, analysis of IUD user characteristics in the USA show that IUD users are more likely to be covered on private insurance, and have higher levels of education when compared with users of other contraceptive methods.30
Prioritising LNG-IUS user feedback resulted in a novel anticipatory counselling video to assist patients in navigating the LNG-IUS adjustment period. A large randomised controlled trial is the next step to investigate whether this user-informed video is acceptable to a diverse population of patients, feasible in a healthcare setting, and impacts LNG-IUS selection, satisfaction and continuation.
Representative quotes from major themes arising from levonorgestrel intrauterine system user focus groups
Acknowledgments
The authors would like to acknowledge the time and expertise of the following people who contributed to video development and user testing: Rebecca Allen, Maureen Baldwin, Celia Beasley, Stephanie Begun, Antonia Biggs, Caroline Bridgwater, Lisa Colarossi, Lauren Jordan, Megan Kavanaugh, Tessa Madden, Elizabeth Micks, Michelle Moniz, Susan Rubin, Brandi Shah, Niveta Shakar, Ying Zhang, Lindsay Zimmerman.
References
Footnotes
Funding BAYER Healthcare Pharmaceuticals Inc. funded the development of this video through an Independent Investigator Research Award to the University of Washington Department of Family Medicine.
Competing interests None declared.
Patient consent Not required.
Ethics approval The University of Washington Human Subjects Division approved the focus groups with LNG-IUS users.
Provenance and peer review Not commissioned; externally peer reviewed.
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