Co-design and Development of ENDOTEXT, a Supportive Text Message Intervention for Individuals Living with Endometriosis: Mixed Methods Study (Preprint)

Sherman, Kerry, Melissa Pehlivan, Anna Singleton, Alexandra Hawkey, Julie Redfern, Mike Armour, Blake F. Dear, Tanya Duckworth, Donna Ciccia, Michael Cooper, Kelly Parry, Esther Gandhi, Sara A Imani
2022 · doi:10.2196/preprints.40837 · W4285734261
preprint OA: gold CC0 ⤵ 1 in-corpus citation
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⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

This mixed-methods study co-designed and evaluated ENDOTEXT, a supportive text message intervention for individuals with endometriosis, finding the messages to be highly acceptable, readable, and appropriate.

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⚙ AI-generated deep summary by claude@2026-06, 2026-06-07 · read from full text ⓘ

This mixed methods preprint studied the co-design and initial evaluation of ENDOTEXT (also referred to as EndoSMS), a supportive one-way supportive text message intervention for individuals living with endometriosis. Phase 1 used three online focus groups with 17 consumer representatives to thematically analyze needs and preferences, followed by Phase 2 feedback from 14 consumers and 9 healthcare professionals via an online survey assessing acceptability, readability, and appropriateness of 371 co-designed messages. Participants agreed on delivering four messages per week at randomly chosen times, with customization for time of day and use of personal names, and the message content was organized around seven support areas including endometriosis information, physical and emotional health, and social support. The authors note that future studies are needed to evaluate acceptability and effectiveness in broader populations; this paper is centrally about endometriosis—co-designing and developing a text-message support intervention (ENDOTEXT/EndoSMS) tailored to people with endometriosis.

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Abstract

BACKGROUND Background: Endometriosis, affecting 1 in 10 people assigned female at birth, is a chronic systemic inflammatory disease, with high symptom burden and adverse socio-emotional impacts. There is a need for an accessible, cost-effective and low burden intervention to support individuals in managing their endometriosis condition. OBJECTIVE To co-design and evaluate the acceptability, readability and quality of a bank of supportive text messages (EndoText) for individuals with endometriosis. METHODS In Phase 1 of this mixed method design, 17 consumer representatives (individuals with endometriosis) participated across three x 3-hour online (Zoom) focus groups. Transcripts were encoded and analysed thematically. In Phase 2, consumer representatives (n = 14) and healthcare professionals (n=9) were then invited to provide feedback on the acceptability, readability and appropriateness of the developed text messages in an online survey. All participants completed a background survey assessing sociodemographic and medical factors prior to participation. RESULTS Consumer representatives demonstrated diverse sociodemographic characteristics (Mage = 33.29), varying in location (metropolitan vs. rural/regional), employment, relationship and education status. Participants agreed on a frequency of four text messages per week, delivered randomly throughout the week and in one direction (i.e., no reply), with customisation for the time of day and use of personal names. There were seven main areas with which individuals required assistance and became the main topic areas for the developed text messages: general endometriosis information; physical health; emotional health; social support; looking after and caring for your body, patient empowerment and interpersonal issues. Via an online survey, 371 co-designed text messages were highly rated by consumers and healthcare professionals as clear, useful and appropriate for individuals with endometriosis. Further, readability indices (Flesch-Kincaid scale) indicated the text messages were accessible to individuals with a minimum of 7th grade high education. CONCLUSIONS Based on the needs and preferences of a diverse consumer representative group, we co-designed EndoText, a supportive text message program for individuals with endometriosis. Initial evaluation of the text messages by consumer representatives and health professionals suggests high acceptability and suitability of the developed text messages. Future studies should further evaluate the acceptability and effectiveness of EndoText for a broader population of individuals with endometriosis.
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Abstract

Background:

Background

Endometriosis, affecting 1 in 10 people assigned female at birth, is a chronic systemic inflammatory disease, with high symptom burden and adverse socio-emotional impacts. There is a need for an accessible, cost-effective and low burden intervention to support individuals in managing their endometriosis condition.

Objective

To co-design and evaluate the acceptability, readability and quality of a bank of supportive text messages (EndoText) for individuals with endometriosis.

Methods

In Phase 1 of this mixed method design, 17 consumer representatives (individuals with endometriosis) participated across three x 3-hour online (Zoom) focus groups. Transcripts were encoded and analysed thematically. In Phase 2, consumer representatives (n = 14) and healthcare professionals (n=9) were then invited to provide feedback on the acceptability, readability and appropriateness of the developed text messages in an online survey. All participants completed a background survey assessing sociodemographic and medical factors prior to participation.

Results

Consumer representatives demonstrated diverse sociodemographic characteristics (Mage = 33.29), varying in location (metropolitan vs. rural/regional), employment, relationship and education status. Participants agreed on a frequency of four text messages per week, delivered randomly throughout the week and in one direction (i.e., no reply), with customisation for the time of day and use of personal names. There were seven main areas with which individuals required assistance and became the main topic areas for the developed text messages: general endometriosis information; physical health; emotional health; social support; looking after and caring for your body, patient empowerment and interpersonal issues. Via an online survey, 371 co-designed text messages were highly rated by consumers and healthcare professionals as clear, useful and appropriate for individuals with endometriosis. Further, readability indices (Flesch-Kincaid scale) indicated the text messages were accessible to individuals with a minimum of 7th grade high education.

Conclusions

Based on the needs and preferences of a diverse consumer representative group, we co-designed EndoText, a supportive text message program for individuals with endometriosis. Initial evaluation of the text messages by consumer representatives and health professionals suggests high acceptability and suitability of the developed text messages. Future studies should further evaluate the acceptability and effectiveness of EndoText for a broader population of individuals with endometriosis. Citation Request queued. Please wait while the file is being generated. It may take some time. Copyright © The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.

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