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

Kerry Anne Sherman; Melissa Jade Pehlivan; Anna Singleton; Alexandra Hawkey; Julie Redfern; Mike Armour; Blake Dear; Tanya Jane Duckworth; Donna Ciccia; Michael Cooper; Kelly Ann Parry; Esther Gandhi; Sara A Imani

doi:10.2196/40837

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

JMIR Form Res. 2022 Dec 9;6(12):e40837. doi: 10.2196/40837.

Authors

Affiliations

¹ Centre for Emotional Health, School of Psychological Sciences, Macquarie University, Sydney, Australia.
² School of Health Sciences, Faculty of Medicine and Health, University of Sydney, Sydney, Australia.
³ Translational Health Research Institute (THRI), Western Sydney University, Sydney, Australia.
⁴ NICM Health Research Institute, Western Sydney University, Sydney, Australia.
⁵ School of Psychological Sciences, Macquarie University, Sydney, Australia.
⁶ School of Psychology, Faculty of Medical and Health Sciences, University of Adelaide, Adelaide, Australia.
⁷ Endometriosis Australia, Sydney, Australia.
⁸ Royal Prince Alfred Hospital, Sydney, Australia.
⁹ Australian College of Physical Education, Sydney, Australia.

PMID: 36485029
PMCID: PMC9789499
DOI: 10.2196/40837

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.

Keywords: SMS; co-design; development; endometriosis; intervention; mHealth; mobile phone; self-management; text message.

©Kerry Anne Sherman, Melissa Jade Pehlivan, Anna Singleton, Alexandra Hawkey, Julie Redfern, Mike Armour, Blake Dear, Tanya Jane Duckworth, Donna Ciccia, Michael Cooper, Kelly Ann Parry, Esther Gandhi, Sara A Imani. Originally published in JMIR Formative Research (https://formative.jmir.org), 09.12.2022.