Co-production of online educational resources for adolescent and young adult females with epilepsy

Abstract

Objective:

To develop online patient education materials about epilepsy for adolescent and young adult females with epilepsy through co-production in partnership with patients, parents or caregivers, and multi-disciplinary healthcare providers who care for this population.

Methods:

We recruited participants from Western/Central Pennsylvania, comprised of females with epilepsy ages 18–26 or parents of children with epilepsy ages 12–26. Healthcare providers who participated in the study were recruited nationally from disciplines of pediatric epilepsy, adult epilepsy, women’s neurology, and adolescent medicine. We held three series of meetings to create the online materials from July to August 2021.

Results:

Five adolescent and young adult females with epilepsy (ages 18–26, median age 22) and two parents of children with epilepsy were recruited and participated in meetings. The physician group was comprised of two adolescent medicine physicians, one adult neurologist with a specialization in women’s neurology, one adult epileptologist, and one pediatric epileptologist. All participants were female. Several sets of meetings were held, which involved the creation of an empathy map to evaluate the needs and desires of our participants, topic list development, and specific content and formatting recommendations. After these meetings, content was created for the online materials and published on the Center for Young Women’s Health (CYWH) website.

Conclusion:

Our team utilized co-production with a diverse group of partners to create educational materials that met the interests of adolescent and young adult females with epilepsy. This is a structured and reproducible methodology that could inform future educational intervention development in epilepsy.

1. Introduction

Adolescent and young adult females with epilepsy have multiple educational needs about their long-term condition, including both general medical information about epilepsy and antiseizure medications (ASMs) as well as epilepsy-specific sexual and reproductive health (SRH) information. The American Academy of Neurology and Child Neurology Foundation recommend annual SRH counseling for this population [1,2]. The concerns of SRH include the teratogenicity of ASMs, adverse interactions between ASMs and contraceptives, recommendations for folic acid supplementation, and questions about the fertility and heritability of epilepsy [1,3]. Females with epilepsy report desiring SRH information from their healthcare providers but receiving little-to-no counseling in this area [3,4]. In addition, when counseling occurs, miscommunications and misunderstandings may be common [3,4].

One strategy to augment and clarify provider counseling is through online patient educational materials. Providers across multiple specialties serving adolescent and young adult females with epilepsy have expressed interest in being able to provide patients in this demographic with online patient educational materials about SRH [5,6]. Pediatric neurologists, pediatricians, adolescent medicine specialists, and obstetrician-gynecologists represent a broad multi-disciplinary need for such materials to supplement routine counseling in office visits [5,6].

We recently co-produced online patient educational resources for adolescent and young adult females with epilepsy in partnership with patients, parents or caregivers, and multi-disciplinary healthcare providers serving this population. Co-production is the process of engaging such partners in designing and delivering healthcare interventions, which may increase the uptake and relevance of such interventions to target populations [7]. We used this method to ensure the resulting educational materials were patient-centered and appropriate for the target audience and satisfactory to providers. In this manuscript, we report on our methodology for co-producing the educational materials as well as findings in terms of partners’ reported preferences and interests regarding the educational materials.

2. Materials and methods

The study team composing the educational material consisted of three pediatric neurologists from a single tertiary-care children’s hospital in the United States, with oversight from attending physicians from the same institution. We partnered with the Center for Young Women’s Health (CYWH) of Boston Children’s Hospital (BCH) [8]. The Division of Adolescent and Young Adult Medicine produces the educational website CYWH, and the Division of Gynecology at BCH produces educational material on topics surrounding SRH care and development [8]. This online resource is widely accessible to our population of interest. However, at the time of project initiation, there was no epilepsy-specific content published. Therefore, our team worked to create educational guides on epilepsy-related topics.

Prior to the recruitment of study participants, the University of Pittsburgh Institutional Review Board determined this study to be exempt.

2.1. Recruitment methods

We recruited three specific groups of participants. The first two groups consisted of females with epilepsy ages 18–26 years old and parents of females with epilepsy ages 12–26 years. We recruited these groups using email listservs from the Epilepsy Association of Western and Central Pennsylvania. We contacted potential participants a maximum of three times to be included. People with epilepsy (PWE) and their parents were compensated for their time.

The third group of participants consisted of physicians working in the disciplines as follows: pediatric epilepsy, adult epilepsy (including AVC), adolescent medicine (including TS), or women’s neurology (including JFRW). These physicians were employed by three tertiary-care medical systems in the United States. Our team contacted these healthcare professionals through direct outreach by email.

Our goal was to have a panel consisting of primarily patients and parents, as adolescent and young adult females with epilepsy were the intended audience for these educational guides. We identified 10–12 participants as an appropriate panel size based on prior literature [9].

2.2. Creation of guides

The process of creating the guides consisted of three series of meetings. The topics of meetings included: (1) development of an empathy map; (2) lists of suitable topics for the web guides; and (3) discussing specific content and formatting ideas for each topical webpage. We held several meetings per topic to accommodate participants’ differing schedules. We conducted all meetings over Zoom Video Communications teleconference software (Zoom, Canonsburg, PA). Meetings were led by each of the pediatric neurologists on the study team. Meetings were not recorded, but the content discussed was inputted directly onto a Microsoft Power-Point document viewable by all study members and panelists during each meeting. After each meeting concluded, participants were contacted to provide feedback on the content discussed and the structure of the meeting. We also encouraged email communication between meetings to obtain additional input if participants were unable to attend the meeting on the specified dates or if they wished to provide further input beyond what was expressed at meetings.

In the first set of meetings, participants created an empathy map. An empathy map is a visualization tool that is commonly used in user experience design [10]. Empathy maps are used to articulate the needs and feelings of the intended audience to create products that best reflect these. Patient and parent participants primarily drove input for the empathy map, but healthcare professionals provided additional input.

In the second set of meetings, we used information from the empathy maps to brainstorm a list of topics that could be included in the web guides. To develop a definitive list of topics, we asked all participants to rate each proposed topic on a Likert scale of 1–5, with 1 as definitely exclude and 5 as definitely include. We included topics with a mean rating of at least 4. In the final set of meetings, we further delineated the topic lists with discussions held on which topics could be combined or divided into individual web pages, as well as generated more specific content and formatting recommendations for each page.

Once the three meetings were completed, the study team drafted text for each web guide. The full panel of PWE, parents, and healthcare professionals reviewed these drafts and provided additional feedback on the organization and content featured. We sent the final drafts to CYWH staff for further review, editing, and adaptation into their house style for their website.

3. Results

In total, we recruited twelve participants, including five adolescent and young adult females with epilepsy, two parents, two adolescent medicine physicians, one adult neurologist with a specialization in women’s neurology, one adult epileptologist, and one pediatric epileptologist. All panelists, including parents and healthcare professionals, were female. Female participants with epilepsy ranged in age from 18 to 26 years old (median 22), were all nulliparous, and were non-Hispanic white.

Panel meetings occurred in July and August 2021, with initial drafting of the web guides occurring from September 2021 to February 2022, and CYWH revisions and formatting of the guides occurring between March and December 2022, when the guides were initially published.

3.1. Empathy map creation

We held four meetings with all twelve participants from our panel to create an empathy map. A completed empathy map created from this project is displayed in Fig. 1.

Fig. 1.

Empathy map created by participants.

3.1.1. Feelings

Sessions revealed that participants were seeking a website that was intuitive to their needs, attention-catching, aesthetically pleasing, and understandable to a wide variety of age groups. Participants identified that the use of a light tone and emotion was important to help lighten the experience of living with epilepsy.

3.1.2. Pain points

Participants had past challenging experiences on how to communicate a diagnosis of epilepsy and safety management with important people in their lives, including family members, friends, co-workers, coaches, and team members. Participants also revealed pain points regarding mental health related to coping with epilepsy and applying for disability accommodations at their schools.

3.1.3. Goals

Participants reported seeking SRH information from reliable sources on epilepsy. Their goals included learning about reproductive planning, including pre-conception planning and childcare with epilepsy. Additionally, including coping emotionally with a diagnosis of epilepsy and feeling supported by a larger community. Parents identified a goal of trusting others who may care for their child with epilepsy, particularly with emergency care.

3.1.4. Influences

Participants felt strong influence from romantic partners, friends, their personal physicians, teachers, and parents regarding the discussion of their epilepsy diagnosis. This influence was important concerning providing education on epilepsy diagnosis, management, and safety.

3.1.5. Tasks

Participants were provided with information on questions they felt needed to be answered by the guides. This included expectations with epilepsy, seizure types, or epilepsy medications and their side effects. Other tasks identified as important related to lifestyle, such as epilepsy safety, coping, or mental health, although having a long-term illness.

3.2. Topic list creation

We held two meetings to generate a topic list for the web guides with eleven participants from our panel. Through topic discussion, our team found that participants living with epilepsy desired to interact with a website with topics that provided both general medical information about epilepsy combined with psychosocial and SRH information. Participants specifically did not desire a website solely with information about SRH and desired integration of this topic with other content areas. Through these meetings, we generated 14 discrete topics and included 12 topics with a rating of 4.0 or higher by the panel of participants.

Topics that were brainstormed but excluded for creation included 1) non-pharmacologic treatment of epilepsy and 2) Sudden Unexplained Death in Epilepsy Patients (SUDEP). These two topics received a mean rating of <4.0 for inclusion. These topics were suggested by and highly rated by clinicians, but PWE rated them lower. PWE expressed that these two topics are particularly important and should be discussed in real time with a medical provider, with discussion tailored to the individual patient rather than presented as a general topic through web guides. The final topics selected are presented in Table 1.

Table 1.

Epilepsy guide finalized topic list.

1. What is epilepsy? What are seizures?

2. Antiseizure medications (ASMs) and side effects

3. Helpful epilepsy apps and devices

4. Safety and risk management for epilepsy

5. Epilepsy and vaccinations

6. Common drug interactions with ASMs

7. Talking to other people about epilepsy

8. Coping with a new diagnosis of epilepsy

9. Mental health and epilepsy

10. Transitioning from pediatric to adult epilepsy care

11. Epilepsy: Can I have healthy children?

12. Menstrual disorders and epilepsy

13. Epilepsy: taking care of an infant and breastfeeding

14. Epilepsy: Am I able to have children?

15. ASMs and birth defects

16. ASMs and birth control

3.3. Content and formatting recommendations

We held three meetings to generate content and formatting recommendations with seven participants involved from our panel. This set of meetings revealed additional key points. Participants preferred language that normalized epilepsy. In regards to information about ASMs, we found that the most participants preferred limiting discussion of medications to those most commonly prescribed to adolescents and young adults with epilepsy. Several participants, particularly PWE, suggested including information in the guides related to emergency preparedness and safety precautions that was drawn from their own lived experiences. Many participants agreed that information about the risk of birth defects with ASM should be portrayed in a way that would not stigmatize individuals with a history of birth defects or their parents.

3.4. Development of web guides

Final web guides were submitted to CYWH staff in March 2022. CYWH condensed the guides into a final list of fourteen topics. Fig. 2 below displays an image of one of the final web guides. The full list of published guides can be viewed at https://youngwomenshealth.org/tag/epilepsy/.

Fig. 2.

Web view of epilepsy: Antiseizure medication (ASM) guide.

3.5. Accessibility of web guides

The visits from over 220 countries and territories globally were received by CYWH. Table 2 displays the total traffic to the CWYH website for total and United States of America audience traffic, along with traffic to the Epilepsy guides.

Table 2.

CWYH website traffic data for July 2023.

Total traffic	289.576 views
Percentage of users from theUnited States	49.7%
Total epilepsy guide traffic	420 views (0.15%)

As of July 2023, CWYH analytic data reported that of the fourteen based epilepsy web guides, the most accessed is Epilepsy: Sleep guide based on web traffic percentage to that guide. Table 3 displays the distribution of countries that accessed the Epilepsy: Sleep guide.

Table 3.

Distribution of viewers of the epilepsy: Sleep guide by country, July 2023.

Country	Percentage (%)
1. United States	37.59
2. India	17.15
3. United Kingdom	10.58
4. Canada	6.93
5. Australia	3.28
6. Pakistan	3.28
7. Philippines	2.19
8. Ireland	1.09
9. Malaysia	1.09
10. Netherlands	1.09
11. Singapore	1.09

4. Discussion

In this project, we convened adolescent and young adult females with epilepsy, parents of adolescent or young adult females with epilepsy, and healthcare providers of PWE to coproduce web-based education about epilepsy for adolescent and young adult women with epilepsy. We empowered participants to use their experiences with epilepsy to help provide the framework for using empathy maps. Through a series of meetings that identified the interests of these participants and topics, we were able to create comprehensive guides regarding general epilepsy education and information about reproductive health and epilepsy tailored to our target population.

Co-production of the web guides with key stakeholders may increase the relevance and impact of the intervention [7]. We adapted our co-production methodology from a similar methodology used previously to develop stakeholder-engaged guides for people with cystic fibrosis for the CYWH [11]. This methodology proved to be feasible and readily transferrable to epilepsy. Consequently, we anticipate that it would also be replicable in other disease states.

Our findings illuminate the educational needs and preferences of adolescent and young adult women with epilepsy. These indicate that educational interventions targeted at reproductive health and epilepsy for this demographic should integrate and contextualize this information alongside general epilepsy and psychosocial information. This can improve audience engagement and retention. We also highlight that, although education on SUDEP and non-pharmacologic (i.e., surgical and dietary) therapy for epilepsy was considered important by study partners, they preferred that this information be delivered through in-office counseling rather than educational materials. Although patients have reported desiring counseling about these topics [12–17], our findings suggest that this education might need to be primarily in-person and - visit-based, or at least contextualized during office visits, rather than primarily web-based.

Our project was not without its limitations. Firstly, our study recruited PWE and parents of children with epilepsy who resided in a specific catchment area of Western and Central Pennsylvania, reflecting the location of our institution. As a result, these participants were solely non-Hispanic white females. This distribution deviated from the broader population of Pennsylvania, in which non-Hispanic whites make up 74.5% of the population [18], and that of the United States, in which non-Hispanic whites make up 58.9% of the population [19].

It is well reported that racial or ethnic differences exist within reproductive healthcare, including contraceptive access, the risk of maternal morbidity and mortality, and implicit clinician bias [20]. Additionally, PWE of varied ethnic or racial backgrounds have differences in risk of hospitalization or emergency room visits, frequency of epilepsy surgery, and positive clinician relationships [21]. The limited representation of our participants restricts the applicability of our final product to a diverse patient population and may not adequately reflect their unique needs. To address this, a future endeavor could focus on recruiting participants on a national basis in the United States to ensure racial or ethnic diversity. Doing so would provide additional perspective on important topics related to epilepsy management and its implications for SRH.

Additionally, PWE on our panel were all nulliparous. The homogeneity of the sample may limit the transferability of the findings to people who have experienced pregnancy and/or parenting, which may be a direction for future intervention development.

A future direction is to study the educational impact of the epilepsy guides for the target population of adolescent and young adult women with epilepsy in comparison with other educational methods, potentially using a validated instrument for measuring knowledge of reproductive health and epilepsy such as Knowledge Of Women Issues and Epilepsy I. Possibilities for a comparison group could include usual care (i.e., no dedicated education beyond any counseling that may occur during an outpatient appointment), the provision of a paper printout in the after-visit summary as an attention control, and/or links to other informational websites such as the Epilepsy Foundation.

5. Conclusions

We report a structured and reproducible methodology for engaging a diverse group of partners in the co-production of patient-facing educational materials. Our findings illuminate the preferences and interests of adolescent and young adult females with epilepsy pertaining to general health information and SRH information about epilepsy. The methodology and findings from this project could inform future educational intervention development in epilepsy.