Abstract

Abstract Study question To assess with a large number of patients why they chose to switch ART provider[s] before they had exhausted all of their treatment options. Summary answer The patient-provider relationship was the most common reason cited for leaving an ART provider, and also the most common reason for staying. What is known already A large number of patients drop out of treatment early in the ART treatment process, for many reasons. In previous studies, this was attributed to a negative patient experience. Also, ‘information’, ‘attitude of and relationship with staff’ and ‘competence of clinic and staff’ were noted by patients as three major points. Previous evidence suggests a ‘lack of empathy’, negative interactions with staff, and poorly formulated explanations of healthcare plans[5] are substantially causing discontinuation of treatment. Most research published on the topic available so far, either uses a small sample of patients or only indirectly assesses potential reasons for drop out. Study design, size, duration A 12-question online questionnaire was sent to 40 patient advocates of diverse age, race, sexual orientation, and treatment experiences. They were asked to disseminate it to members of their communities who met the criteria of having undergone at least one fertility treatment. In total, 1,060 patients were surveyed (February-April 2019). 89.6% came from the US, the remainder from 21 countries (six continents). Median age of respondents was 33.7. Median months trying to conceive was 48. Participants/materials, setting, methods The confidential online survey consisted of four demographic questions, four closed-ended treatment-history questions, and three open-ended questions about experiences with ART providers. The open-ended questions allowed answers of unlimited length. Long form responses were modeled using Natural Language Processing (NLP) techniques, TF-IDF (Term Frequency-Inverse Document Frequency) combined with NMF (Non-negative Matrix Factorization) and grouped into topics, from which several “themes” emerged. Methodology, results and conclusions were reviewed and endorsed by a committee of fertility specialists. Main results and the role of chance The reasons given for leaving their clinic fell into six clear themes: a treatment/approach not tailored to the patient and their needs (23%); poor bedside manner (communication style, the patient not feeling “heard”) (18%); logistical challenges e.g., doctor, clinic or patient had moved (14%); cost/access issues (9%); lack of efficacy e.g., treatment unsuccessful (8%); provider was “all business” e.g., patient felt like a number (8%). Taken together, 49% left a clinic because of a relationship issue. The remaining responses were too general to classify into a clear theme. Four clear themes emerged in the reasons provided for staying with their clinic. Patients stayed because of good access/cost/insurance coverage (29%), they were already enrolled in next steps at the clinic (e.g., purchased IVF bundle, embryo storage, etc.) (26%), they had a connection with staff (25%), they were feeling optimistic (20%). Relationships were also a major theme when respondents were asked to provide further comments about their experiences and/or what they value in a fertility doctor: a good fit (24%); provider has an interest in learning about them and/or exploring tailored treatment options (13%); feels connected and is being treated like a human being (11%); provider communicates and shows compassion (10%). Limitations, reasons for caution Respondents were invited to participate by other respondents, rather than recruited centrally. Wider implications of the findings This study demonstrates that, unlike patient access to funds or treatment success (over which they have little control), ART clinics can improve their patient retention rates by improving the one aspect of the patient experience over which providers have the most control: the patient-provider relationship. Trial registration number NA

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