Post-Thrombotic Syndrome: Assessment of Patient and Health Care Provider Knowledge and Awareness.

Despite evidence demonstrating that the post-thrombotic syndrome (PTS) is a common and burdensome long-term complication of deep vein thrombosis (DVT), we hypothesized that patient and health care provider awareness of this condition was poor, thereby limiting the use of measures to prevent and screen for PTS.

We designed a quality improvement project to (1) identify existing gaps in health care provider and patient knowledge and awareness of PTS, and (2) use this information to guide the development and implementation of a PTS educational curriculum.

Health care providers (internal medicine or family medicine physicians and anticoagulation pharmacists) at two clinical centers were asked to complete a brief survey about PTS knowledge and practice patterns. Patients diagnosed with proximal lower extremity deep vein thrombosis (DVT) who were managed in the Thrombosis Service at each center were asked to complete a brief survey with questions about basic PTS knowledge (University of Utah) or PTS education received and use of elastic compression stockings (ECS) for PTS prevention (Jewish General Hospital).

Provider survey: Of the 358 surveys sent to health care providers from both institutions, 77 surveys were completed (17/134 for the University of Utah, 60/224 for Jewish General Hospital). Survey respondents included 59 physicians or resident physicians, and 18 pharmacists. When asked to identify the average incidence of PTS after DVT, only 35% of providers responded correctly. Providers correctly identified that wearing ECS following DVT can prevent PTS in some cases (94% correct), and that diuretic medications are not used to treat PTS (100% correct). However, only 31% of providers at both institutions “always” or “frequently” discuss the risk of PTS with DVT patients, only 25% “always” or “frequently” prescribe ECS for PTS prevention following DVT, and only 26% “always or “frequently” evaluate patients for the development of PTS after DVT. The primary barrier that reportedly prevents providers from performing these functions more frequently is the lack of personal knowledge or expertise to discuss or diagnose PTS. The majority of providers surveyed report they have not received prior education about PTS. Patient survey: Patients at each institution completed a different survey, each exploring different aspects of PTS knowledge. At the University of Utah (n=106 completed surveys), 54% of patients surveyed reported they had never heard of PTS. Only 50% chose the correct answer when asked to identify signs and symptoms of PTS (leg pain and swelling), and only 25% correctly identified a risk factor for PTS (blood clot above the knee). The majority of patients correctly identified appropriate leg elevation technique (67%), and the fact that lower extremities do not always return to normal following DVT (82%). When asked about a possible treatment for PTS, 66% of patients correctly chose ECS, but only 44% correctly chose ECS as also a possible PTS preventive therapy. At Jewish General Hospital (n=60 completed surveys), only 38% of patients reported receiving PTS education, and this was done primarily in the form of verbal teaching by the physician or vascular lab staff. Additionally, 38% of patients reported they were prescribed ECS following DVT, and the majority of those patients did go on to purchase the stockings and wear them regularly.

The results of our survey establish that there is tremendous potential to impact and improve both health care provider and patient knowledge of PTS. We found that the majority of providers underestimate the incidence of PTS, which is underscored by the fact that only 1/3 of providers routinely discuss the risk of PTS with DVT patients, and only 1/4 routinely prescribe ECS and/or assess DVT patients for the development of PTS. The gaps in provider knowledge correlate with those in DVT patients surveyed. Most patients have never heard of PTS, and therefore are largely unaware of PTS risk factors, signs and symptoms, and possible preventive methods. These data will be used in the second phase of our quality improvement project to inform the development of educational materials and tools specifically tailored to the learning needs of patients and health care providers.

No relevant conflicts of interest to declare.