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

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.

A supportive text message intervention for individuals living with endometriosis (EndoSMS): Randomized controlled pilot and feasibility trial

“…Four messages are delivered per week, an optimal delivery schedule identified in prior text message interventions [ [14] , [24] ]. These text messages have demonstrated high acceptability, relevance and readability from both individuals with endometriosis and healthcare professionals [ 21 ], consistent with prior text message intervention research [ [14] , [20] ]. Addressing key challenges for individuals living with endometriosis, EndoSMS aims to improve psychosocial aspects of wellbeing as reflected in QoL and emotional health.…”

“…Reflecting the high prevalence of psychological distress, there was an expressed desire for psychological and emotional support, particularly regarding self-compassion and social relationships [ 21 ], consistent with prior research [ 13 ]. Consequently, we developed EndoSMS, a supportive text messaging intervention [ 21 ] using co-design with individuals living with endometriosis, clinical health professionals and researchers [ 21 ], to ensure the relevancy and suitability of the resultant intervention [ 22 , 23 ]. Designed for delivery over a 6-month period, EndoSMS comprises 371 text messages for one-way, automated delivery across several domains providing general information about endometriosis and tips, strategies and guidance for promoting psychological wellbeing [ 21 ].…”

“…A mixed methods needs analysis study with individuals living with endometriosis revealed a strong desire for easy-to-access, reliable and supportive information [ 21 ]. Reflecting the high prevalence of psychological distress, there was an expressed desire for psychological and emotional support, particularly regarding self-compassion and social relationships [ 21 ], consistent with prior research [ 13 ].…”

“…A mixed methods needs analysis study with individuals living with endometriosis revealed a strong desire for easy-to-access, reliable and supportive information [ 21 ]. Reflecting the high prevalence of psychological distress, there was an expressed desire for psychological and emotional support, particularly regarding self-compassion and social relationships [ 21 ], consistent with prior research [ 13 ]. Consequently, we developed EndoSMS, a supportive text messaging intervention [ 21 ] using co-design with individuals living with endometriosis, clinical health professionals and researchers [ 21 ], to ensure the relevancy and suitability of the resultant intervention [ 22 , 23 ].…”

“…Consequently, we developed EndoSMS, a supportive text messaging intervention [ 21 ] using co-design with individuals living with endometriosis, clinical health professionals and researchers [ 21 ], to ensure the relevancy and suitability of the resultant intervention [ 22 , 23 ]. Designed for delivery over a 6-month period, EndoSMS comprises 371 text messages for one-way, automated delivery across several domains providing general information about endometriosis and tips, strategies and guidance for promoting psychological wellbeing [ 21 ]. Four messages are delivered per week, an optimal delivery schedule identified in prior text message interventions [ [14] , [24] ].…”