Our study found that access to an online resource for three menstrual cycles could improve some key aspects of menstrual health literacy, encourage engagement with medical professionals, and provide improved understanding of both a ‘normal’ menstrual cycle and how to identify problematic menstrual conditions such as endometriosis and heavy menstrual bleeding.
There was an increased uptake of self-care measures over the course of the study, especially in breathing/meditation exercises and acupressure which were low at baseline. There is some preliminary evidence that mindfulness style interventions reduce menstrual pain 25,26 and there is evidence for both mindfulness and acupressure for reducing PMS symptoms 19,27. Exercise has the most significant reduction in pain compared to other self-care such as heat, 17 but uptake was lower than other forms of self-care. This may be due to the fact that our resource aimed to increase health literacy, but content was not included to support behaviour change. Incorporating behaviour change theory-based content such as stepping individuals through use of behaviour change techniques 28,29, e.g., using self-monitoring, setting goals, social support, and/or adding behaviour change support intervention methods in addition to the online platform, e.g., face-to-face methods, could further enhance the efficacy of the resource in regards to changing behaviours of seeking health care and using self-management strategies, such as exercise. Our team are currently working to develop such additional support, including the testing of a menstrual pain behaviour app 30. Despite the increased uptake of these self-care measures, we did not find evidence of a clinically significant reduction in menstrual pain, however it is important to note that this study was not powered to detect any such change if it did exist. The pain score itself is also unlikely to capture the complete spectrum of bothersome menstrual symptoms such as emotional changes 6, which may explain why, despite the lack of a significant pain reduction, over half of the participants rated their menstrual symptoms as at least slightly improved.
The addition of a menstrual disturbance self-screening tool (PIPPA) to menstrual education in this study demonstrated health seeking behaviour by women to GPs and reported action by GPs to refer some participants to gynaecologists. Young women commonly report GPs being dismissive of pain and interference related menstrual disturbance 31,32 and this can cause reluctance to engage with health-care professionals 6. In this study, the addition of a letter to GPs with PIPPA scores and explanation of relevance may well have provided a reverse education of GPs to take seriously young women’s reports of menstrual disturbance. The action by GPs to refer women to gynaecologists may well have been facilitated by the combination of a high PIPPA score, providing external validation of pain and interference, and women’s increased menstrual health literacy and confidence to present to GPs. Given that over half of young Australian women report symptoms of non-cyclical pelvic pain but also normalise these symptoms 3, ensuring that these young women are advised and empowered to seek medical advice is vital to ensure that the lengthy diagnostic delays are reduced 33,34.
Certain aspects of health literacy related to agency, empowerment and improved health management skills all increased during the study period. The significant improvement in the HSI domain of the HLQ corresponds to “Feel(ing) confident that they have all the information that they need to live with and manage their condition and to make decisions” 35. Several domains of the HeiQ also showed reliable improvement, with the largest improvement in the skills and technique acquisition domain; improvement in this domain relates to “highly developed skills in symptom relief and techniques to manage own health” 36. The proportion of reliable positive change in our participants was similar across most domains to previous research on the impact of chronic disease management programs in Australia between 2007-2013 37 suggesting that, despite the online nature and minimal interaction between the research team and participants, or between participants themselves, it was similarly effective to more ‘traditional’ programs. Interestingly, despite these improvements there was no corresponding improvement in the internal Health Locus of Control scores over the course of the trial, but the IHLoC scores both at baseline and the end of study were similar to previous data on those with and without a chronic health condition 38, suggesting that these scores were already in the normal range.
These findings illustrate that a relatively large number of young people are; not receiving accurate information in schools, from parents or healthcare professionals, information is not being delivered in a suitable manner, or they are missing the information they need. Previous research in Australia has shown that when discussing a condition such as endometriosis young women wanted to know specific symptoms, rather than vague or general information 39. Focussing on high schools, the HPE syllabus does not directly address menstrual health education. Content covered in the later years is linked to sexual and reproductive health through the focus area ‘Relationships and Sexuality’, which aims to explore resources and strategies to manage personal, physical and social changes and transitions associated with puberty as they grow older 10. In the later years (years 9 and 10), the focus of this content shifts to sexuality and sexual health education, leaving it to the teacher’s discretion to incorporate this content at all or in an effective manner beyond personal experience or from a biological lens. Given the significant number of participants attending co-educational schools (80%), the findings of this study reveal gaps in the HPE curriculum between the menstrual health education delivered in school and what information is needed to develop young people’s menstrual health literacy.
We recommend a whole-school approach to develop menstrual health literacy and strategies to support students, teachers and school staff to promote menstrual health and wellbeing. This research indicates the need for greater emphasis on menstrual health in HPE classes. Menstrual health education needs to focus on correcting mistaken assumptions about a ‘normal’ period or menstrual cycle, providing sufficient information about periods and their symptoms, and information about menstrual management, including self-care options and when to consult a doctor. To develop young peoples' menstrual health literacy within the critical dimension, the HPE curriculum needs to provide menstrual health education that empowers students to selectively access and critically analyse menstrual health information and to take action to promote their menstrual health 10. Such information could potentially help to alleviate not only dysmenorrhea and related menstrual symptoms but could, by extension, increase their ability to engage fully in the classroom and extra-curricular activities. The provision of an online resource, such as the one reported in this paper, clearly offers young people and teachers additional information that they could access autonomously. Providing such a resource would ensure critical information was more broadly disseminated and independent of individual teacher capacity. Furthermore, such a tool provides young women with the knowledge to take charge of their health. Ideally, the use of such a resource would be accompanied by professional learning for teachers and potentially parents and carers of young women, to ensure that the health literacy messages received by young women are aligned.
Translational capacity of interventions is essential to consider when designing and evaluating health interventions, to ensure follow-through to sustainable policy and practice change from research settings. The Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework 40, is one of the most commonly used implementation science frameworks. Regarding the current study, reach into the intended target population (e.g., the total number of eligible women that were exposed to the intervention invite), adoption of the intervention (e.g., the number of women out of the total potential eligible sample who joined the study) and implementation of the intervention (e.g., how the intervention was used, such as number of hours of engagement and with which elements of the online resource) were not determined. A range of social media sources were used to recruit women making it challenging to identify the total potential sample and the online platform used for resource delivery did not capture analytics to inform use and engagement with the resource. This study was also a short evaluation study and so long-term engagement with the resource (maintenance) was not explored. Our evaluation tools did however detect meaningful changes in some outcomes, suggesting that further testing is warranted to explore full scale, long-term effectiveness and implementation processes in a rigorous trial. Future work should also collect in-depth qualitative data from resource users (e.g., women) and stakeholders (e.g., teachers) to explore how and why outcomes changed the way they did over time 41
We have suggested that high schools may be an appropriate place to reach young women. However, consideration of other settings to promote the resource in women and important influencers of women beyond high school should also be considered (such as through universities, pharmacies, healthcare settings, community groups and other social marketing strategies). We did not collect data on ethnicity, educational level or socio-economic status, which are associated with health disparities, potentially through health literacy42,43. It may be that our resources would require tailoring to particular groups, which will need explored in future. For example, peer support (support from someone with similar characteristics to the individual and with experiential knowledge) has been shown to be particularly effective for lifestyle behaviour change in culturally diverse communities 44 and so expanding on our current resource to add an element of peer support may be necessary to engage well with such communities.
There are several strengths to this study including the use of validated health literacy questionnaires, and the previously validated PIPPA tool to encourage engagement with health professionals. However, some important limitations must be acknowledged. Firstly, this is a pilot study and therefore was not powered to detect small, even if clinically relevant, changes between baseline to end of trial. Secondly, due to budget constraints and internal University policy, the web-based resource had to be hosted on the universities own web platform. This platform lacks many of the features of the “modern” Web 2.0, and therefore data on which pages were interacted with and for how long, what video clips received the most views etc was not able to be retrieved. Therefore, we are unable to determine how much actual engagement with the material there was. Future versions of this content will be hosted on modern platforms that will allow the research team to use analytics to help optimise content. Finally, the outcomes of the visit to the general practitioner or gynaecologist are unknown, therefore we are unsure about how many of the participants, if any, received a further diagnosis such as endometriosis for their symptoms.
A web based resource, with minimal setup and ongoing costs, can provide clinically relevant improvements in health literacy, remedy previous misconceptions about menstruation and increase awareness and up-take of evidence based self-care methods. The used PIPPA tool was a simple but effective means of empowering and encouraging visits to health professionals. Future research should explore the most acceptable way to deliver this information, and to ensure that not only young people, but their teachers and parents/guardians also have access to accurate, evidence based information on menstruation and it’s management.