Co-design and Development of EndoSMS, a Supportive Text Message Intervention for Individuals Living With Endometriosis: Mixed Methods Study

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
JMIR formative research · 2022 · vol. 6(12) , pp. e40837 · doi:10.2196/40837 · PMID:36485029 · PMC9789499 · W4311132652
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⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

This study co-designed and evaluated EndoSMS, a supportive text message intervention, finding 371 messages highly acceptable and appropriate for individuals with endometriosis based on consumer and healthcare professional feedback.

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

This paper describes the co-design and development process of EndoSMS, a supportive text-message intervention for individuals living with endometriosis, using a mixed-methods study design. It applies reporting criteria (COREQ) for qualitative components, with emphasis on documenting the research team and reflexivity, study design details such as sampling and data collection setting, and analysis/reporting elements such as coding approach and quotations. The provided text includes mainly the COREQ checklist instructions rather than substantive results, so a key limitation is that the manuscript body excerpt does not present the intervention’s behavioral content, outcomes, or findings. This paper is centrally about endometriosis — specifically, it focuses on co-design and development of the EndoSMS supportive text messaging intervention for people living with endometriosis.

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Abstract

BACKGROUND: Endometriosis, which affects 1 in 10 people assigned female at birth, is a chronic systemic inflammatory disease with a high symptom burden and adverse socioemotional impacts. There is a need for an accessible, cost-effective, and low-burden intervention to support individuals in managing their endometriosis condition. OBJECTIVE: This study aimed to co-design and evaluate the acceptability, readability, and quality of a bank of supportive SMS text messages (EndoSMS) for individuals with endometriosis. METHODS: In phase 1 of this mixed method design, 17 consumer representatives (individuals with endometriosis) participated across three 3-hour web-based (Zoom, Zoom Video Communications, Inc) focus groups. The transcripts were encoded and analyzed thematically. In phase 2, consumer representatives (n=14) and health care professionals (n=9) quantitatively rated the acceptability, readability, and appropriateness of the developed text messages in a web-based survey. All the participants initially completed a background survey assessing sociodemographic and medical factors. RESULTS: Consumer representatives demonstrated diverse sociodemographic characteristics (Mage=33.29), varying in location (metropolitan vs rural or regional), employment, and relationship and educational statuses. Participants reached a consensus regarding the delivery of 4 SMS text messages per week, delivered randomly throughout the week and in one direction (ie, no reply), with customization for the time of day and use of personal names. Seven main areas of unmet need for which participants required assistance were identified, which subsequently became the topic areas for the developed SMS text messages: emotional health, social support, looking after and caring for your body, patient empowerment, interpersonal issues, general endometriosis information, and physical health. Through a web-based survey, 371 co-designed SMS text messages were highly rated by consumers and health care professionals as clear, useful, and appropriate for individuals with endometriosis. Readability indices (Flesch-Kincaid scale) indicated that the SMS text messages were accessible to individuals with a minimum of 7th grade high school education. CONCLUSIONS: On the basis of the needs and preferences of a diverse consumer representative group, we co-designed EndoSMS, a supportive SMS text message program for individuals with endometriosis. The initial evaluation of the SMS text messages by consumer representatives and health professionals suggested the high acceptability and suitability of the developed SMS text messages. Future studies should further evaluate the acceptability and effectiveness of EndoSMS in a broader population of individuals with endometriosis.
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COREQ (COnsolidated criteria for REporting Qualitative research) Checklist A checklist of items that should be included in reports of qualitative research. You must report the page number in your manuscript where you consider each of the items listed in this checklist. If you have not included this information, either revise your manuscript accordingly before submitting or note N/A. Topic Item No. Guide Questions/Description Reported on Page No. Domain 1: Research team and reflexivity Personal characteristics Interviewer/facilitator 1 Which author/s conducted the interview or focus group? Credentials 2 What were the researcher’s credentials? E.g. PhD, MD Occupation 3 What was their occupation at the time of the study? Gender 4 Was the researcher male or female? Experience and training 5 What experience or training did the researcher have? Relationship with participants Relationship established 6 Was a relationship established prior to study commencement? Participant knowledge of the interviewer 7 What did the participants know about the researcher? e.g. personal goals, reasons for doing the research Interviewer characteristics 8 What characteristics were reported about the inter viewer/facilitator? e.g. Bias, assumptions, reasons and interests in the research topic Domain 2: Study design Theoretical framework Methodological orientation and Theory 9 What methodological orientation was stated to underpin the study? e.g. grounded theory, discourse analysis, ethnography, phenomenology, content analysis Participant selection Sampling 10 How were participants selected? e.g. purposive, convenience, consecutive, snowball Method of approach 11 How were participants approached? e.g. face-to-face, telephone, mail, email Sample size 12 How many participants were in the study? Non-participation 13 How many people refused to participate or dropped out? Reasons? Setting Setting of data collection 14 Where was the data collected? e.g. home, clinic, workplace Presence of non- participants 15 Was anyone else present besides the participants and researchers? Description of sample 16 What are the important characteristics of the sample? e.g. demographic data, date Data collection Interview guide 17 Were questions, prompts, guides provided by the authors? Was it pilot tested? Repeat interviews 18 Were repeat inter views carried out? If yes, how many? Audio/visual recording 19 Did the research use audio or visual recording to collect the data? Field notes 20 Were field notes made during and/or after the inter view or focus group? Duration 21 What was the duration of the inter views or focus group? Data saturation 22 Was data saturation discussed? Transcripts returned 23 Were transcripts returned to participants for comment and/or Topic Item No. Guide Questions/Description Reported on Page No. correction? Domain 3: analysis and findings Data analysis Number of data coders 24 How many data coders coded the data? Description of the coding tree 25 Did authors provide a description of the coding tree? Derivation of themes 26 Were themes identified in advance or derived from the data? Software 27 What software, if applicable, was used to manage the data? Participant checking 28 Did participants provide feedback on the findings? Reporting Quotations presented 29 Were participant quotations presented to illustrate the themes/findings? Was each quotation identified? e.g. participant number Data and findings consistent 30 Was there consistency between the data presented and the findings? Clarity of major themes 31 Were major themes clearly presented in the findings? Clarity of minor themes 32 Is there a description of diverse cases or discussion of minor themes? Developed from: Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 2007. Volume 19, Number 6: pp. 349 – 357 Once you have completed this checklist, please save a copy and upload it as part of your submission. DO NOT include this checklist as part of the main manuscript document. It must be uploaded as a separate file.

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