Family History Unawareness of Blood Clot Risk: Links to Misdiagnoses and Illness Uncertainties in Personal and Expert Realms

Abstract

The difficulty of diagnosing blood clots makes salient the question, “What role does family history awareness have for guiding lay and expert actions?” The authors examine the in-depth life reflection interviews of 20 women who experienced a first venous blood clot between the ages of 18 and 50 years, identifying causal attributions the women made for thrombosis after the event. Twelve participants described an understanding of the cascade of events linked to thrombosis, revealing that there is seldom a single cause. The other eight identified belief in a single determining cause for their thrombosis. The authors reflect on the symptoms the women experienced during the course of the clotting event, patterns of care that they executed to self-manage their blood clot, and their misdiagnoses associated with symptoms and care. The women recalled the patterns of care received through formal health care systems and the reported misdiagnoses linked to these interactions. The recollections reveal that the subtle nature of venous blood clot symptoms contributes to lay and expert misdiagnoses. Use of antibiotics and pain killers in the wake of misdiagnosis masks symptoms, contributing to costly delays in accurate diagnoses. Four women were aware of a family history of clotting when the event occurred, 13 had such a history but lacked awareness until the clotting event, and three had no known history. Among women with awareness of their family history, blood clot diagnosis occurred sooner, promoting survival and efficiencies in health care. Implications for communicating about family history of thrombosis are considered.