Understanding Dropout from Guided Internet-Based Cognitive Behavioral Therapy for Endometriosis: A Mixed-Methods Study
This mixed-methods study of a guided internet-based cognitive behavioral therapy intervention for endometriosis found that while baseline demographic and medical characteristics poorly predicted the 36.2% dropout rate, qualitative interviews revealed that time constraints, technical issues, intervention design, perceived relevance, and emotional difficulties were the primary barriers to completion.
Original paper licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). This is an AI-generated explanation of the paper below. It is not written or endorsed by the authors. For technical accuracy, refer to the original paper. Read full disclaimer
Endometriosis is a common and often painful condition where tissue similar to the lining of the uterus grows outside of it, causing chronic pain, fatigue, and significant disruption to daily life. For many women, the journey to a diagnosis is long, and even after medical treatment, the physical and emotional toll can persist. Because the condition affects so many aspects of well-being, doctors and researchers have increasingly looked toward psychological support to help manage the burden. One promising approach is internet-based cognitive behavioral therapy, or iCBT. This is a form of counseling delivered online, where individuals work through structured lessons on their computers or phones, often with the support of a therapist who provides feedback. The idea is to teach people new ways to cope with pain and stress, offering a flexible alternative to traditional face-to-face therapy. However, like many online programs, these digital treatments face a common hurdle: many people start the course but stop before finishing. Understanding why people leave is just as important as knowing if the treatment works, because if a program is too difficult or irrelevant, the people who need it most may never get the help they seek.
A team of researchers set out to solve this puzzle specifically for women with endometriosis. They examined a guided online therapy program designed to improve the quality of life for these women. The study involved 149 women who began the eight-week program. The researchers wanted to know two things: first, whether they could predict who would drop out based on their age, medical history, or mental state before they started; and second, what the women themselves had to say about why they stopped. The results revealed a surprising truth about who leaves these programs. When the team looked at the data, they found that the women who finished the program were remarkably similar to those who quit. There were no significant differences in their ages, their education levels, how long they had lived with the disease, or even how depressed they felt at the start. The only small difference was that women who continued the program were slightly more likely to be taking pain medication than those who stopped. This suggests that the reasons people leave are not written in their medical records or their personal histories, but are found in the day-to-day experience of using the program.
To understand the real reasons behind the dropouts, the researchers spoke with ten women who had quit the program. These conversations painted a vivid picture of the obstacles these women faced. The most common barrier was simply time. The women described lives filled with work, family responsibilities, and the unpredictable nature of chronic illness, making it difficult to stick to a rigid weekly schedule. Some missed modules because they were on vacation without a laptop, while others found that a sudden family emergency or a heavy work week pushed the therapy to the bottom of their priority list. The program required a specific amount of time each week, and when life got in the way, the momentum was lost. Beyond time, the technology itself became a source of frustration. Several women reported that the website was difficult to use on a mobile phone, or that their work was not saved properly, forcing them to start over. One woman described the annoyance of reminder emails landing in her spam folder, causing her to forget the next step entirely. These technical glitches, though seemingly minor, created a sense of disconnection that made it easy to give up.
The design of the therapy itself also played a major role. Some women felt that the program did not match what they had expected. They had hoped for more direct, personal contact with the therapist, perhaps through phone calls, rather than just written messages. Others were surprised by how much writing and self-reflection was required, feeling that the emotional effort was heavier than they had anticipated. For some, the content simply did not feel relevant. A woman who did not experience severe pain found it hard to relate to exercises focused on pain management, while another felt that important topics like fertility were missing. When the material felt disconnected from their personal reality, their motivation faded. Finally, the emotional weight of the therapy itself was a barrier. Digging into difficult feelings and confronting the reality of a chronic illness can be exhausting. For women already struggling with physical fatigue and pain, the mental energy required to engage deeply with the program sometimes felt like too much to bear, leading them to step away to protect their well-being.
The study concludes that predicting who will drop out of an online therapy program is far more complex than looking at a patient's chart. The women who left were not a different type of person from those who stayed; they were simply people whose lives, expectations, and emotional needs did not align perfectly with the structure of the digital program. The researchers suggest that to keep people engaged, these online therapies need to be more flexible, allowing users to fit the work into their lives rather than forcing their lives to fit the program. Improving the technology so it works smoothly on all devices, offering more personal ways to connect with a therapist, and tailoring the content to match the specific needs of each woman could make a significant difference. By addressing these practical and emotional hurdles, future programs might be able to offer the support these women need without losing them along the way.
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