Background Pregnancy loss is a common event but its significance is often minimized by family, friends, and community, leaving bereaved parents with unmet need for support. This study sought to describe demographics, usage patterns, and perceived benefits for women participating in internet pregnancy loss support groups. Methods We requested permission to post an anonymous internet survey on large and active United States internet message boards for women with miscarriages and stillbirths. The study purposefully oversampled stillbirth sites and included both closed and open-ended questions. The University of Michigan Institutional Review Board approved the study. Closed-ended questions were summarized and evaluated with bivariable analysis. We performed a qualitative analysis of open-ended data using an iterative coding process to identify key themes. Results Of 62 sites queried, 15 granted permission to post the survey on 18 different message boards. We collected 1039 surveys of which 1006 were complete and eligible for analysis. Women were typically white, well-educated, and frequent users. They noted message boards helped them feel less isolated in their loss and grief and they appreciated unique aspects of internet communication such as convenience, access, anonymity, and privacy. Pregnancy loss message boards are an important aspect of support for many bereaved mothers. African-Americans women appear to be substantially underrepresented on-line despite being at higher risk for stillbirth. Conclusions Internet message boards serve a unique function in providing support for women with miscarriage and stillbirth and the benefits are often significantly different from those encountered in traditional face-to-face bereavement support.

The Optimality Index-US, a recently developed perinatal clinimetric index, has been validated with both clinical and research databases. Documentation of the reliability of the instrument for medical record abstraction is needed. This paper reports outcomes of interrater reliability assessments conducted for two projects. Abstraction was supervised by the same investigator, but staffed by different coders who had a variety of qualifications (perinatal nurse, nurse-midwife, clinical trial professional, student research assistants). Medical records were entirely paper at one site and partially electronic at another. Reliability (reproducibility) was assessed via percent agreement between pairs of coders on charts randomly selected for audits. Mean percentage agreement was 92.7% in both projects with a range from 89.1% to 97.8% in the first project, and a range from 88.5% to 96.2% in the second project. The sources of error differed between clinician and lay abstractors, but the number of errors did not differ. The average time per chart was assessed in the first project. Once proficiency was achieved, the average time needed to complete coding was 24 minutes, with some additional time needed for ordering paper charts. These analyses indicate that excellent reproducibility can be achieved with the Optimality Index-US.