129. Unmet information needs of women with hypertensive disorders of pregnancy: A qualitative analysis of narrative responses from an online patient registry

Abstract

Introduction Hypertensive disorders of pregnancy (HDP) complicate approximately 10% of pregnancies worldwide. Limited data exists about the information needs of women with HDP. Objective/Hypothesis To identify the information needs of women with HDP. Methods We analyzed retrospective data, covering July 2013 to March 2017, from The Preeclampsia Registry (TPR), an on-line survey hosted by the US-based Preeclampsia Foundation. Participants access and enroll in TPR via social media and web searches. We restricted our analysis to women who self-reported a history of HDP and responded to the open-ended question, ”Is there any information that you could have had at the time of this pregnancy that would have been helpful?” Narrative responses were coded, reconciled, and thematically analysed by multiple coders using an inductive approach. Results Of 3285 participants enrolled during the study period, 898 (27%) completed the survey, self-reported a history of HDP, and responded to the open-ended question. Participants were from the United States (86%) and from 27 other countries. Most participants (85%) were not satisfied with the information they received. About 23% were completely unaware of HDP. Participants specified they needed information about symptoms (25%), causes (9%), and long-term complications (3%) of HDP. They also felt ill-informed about postpartum HDP (4%) including its prevalence, symptoms, and treatment. Among these participants, 60% indicated they were unaware HDP could occur postpartum. Finally, 17% indicated disappointment in the quality of their provider or care received, mostly due to inadequate communication about their symptom experiences and feeling that their illness concerns were dismissed. Discussion Most women with a history of HDP in our analysis were not satisfied with the information they received. Unfamiliarity with HDPs, desire for greater knowledge, and poor provider-patient communication and relationship, present opportunities for patient and provider education.