Current clinical utilization of risk assessment tools in pulmonary arterial hypertension: a descriptive survey of facilitation strategies, patterns, and barriers to use in the United States

Abstract

Practice guidelines suggest that treatment decisions in pulmonary arterial hypertension be informed by periodic assessment of patients’ clinical risk. Several tools, well validated for risk discrimination, such as the Registry to Evaluate Early and Long-term Pulmonary Arterial Hypertension Disease Management calculator, were developed to assess pulmonary arterial hypertension patients’ risk of death based on multiple parameters, including functional class, hemodynamics, biomarkers, comorbidities, and exercise capacity. Using an online survey, we investigated the use of risk assessment tools by pulmonary hypertension healthcare providers in the United States. Of 121 survey respondents who make treatment decisions, 59% reported using risk assessment tools. The use of these tools was lower for non-physicians (48% vs. 65% physicians) and for practitioners at centers with 1 to 100 pulmonary arterial hypertension patients compared with centers with >100 patients (47% vs. 64%). Risk was most frequently assessed by decision makers at the time of diagnosis (cited by 54%) and at the time of worsening symptoms (cited by 42%), suggesting that use of pulmonary arterial hypertension risk assessment tools remains low. In our survey, non-physicians compared with physicians cited two major barriers to increased tool use: lack of education and training (20% vs. 4%) and lack of clarity on the best tool to use (30% vs. 18%). Information technology tools, such as electronic medical record integration and web or phone-based risk calculating applications, were cited most frequently as ways to increase the use of risk assessment tools.

Reasons for refusing parenteral therapy: a qualitative study of patients with pulmonary arterial hypertension

“…However, at the same time, many also expressed that their QoL might improve with parenteral prostacyclin therapy by reducing symptoms and slowing disease progression. In fact, most of the patients in Group B: Refused/Initiated indicated that their QoL improved upon initiating therapy, which is consistent with studies that evaluated QoL following initiation of parenteral prostacyclin therapy (16)(17). Moreover, these patients indicated that their initial concerns of the pump affecting their QoL were mostly unwarranted.…”

“…The use of newly developed risk assessment tools could aid in the identification of highrisk patients and objectively communicate that risk to the patient 17 . In addition to the objective assessment of disease severity, clinicians should consider addressing patient perceptions of parenteral prostacyclin therapy's negative impact on QoL.…”

“…In fact, most of the patients in Group B: Refused/Initiated indicated that their QoL improved upon initiating therapy, which is consistent with studies that evaluated QoL following initiation of pPCY therapy. 16,17 Moreover, these patients indicated that their initial concerns of the pump affecting their QoL were mostly unwarranted.…”

“…The use of newly developed risk assessment tools could aid in the identification of high-risk patients and objectively communicate that risk to the patient. 16 In addition to the objective assessment of disease severity, clinicians should consider addressing patient perceptions of pPCY therapy’s negative impact on QoL. It is clear that some patients have a preconceived notion that their QoL, as it relates to mobility and independence, may be negatively impacted by wearing an external pump.…”

“…Given that patients who eventually initiated pPCY therapy reported being told their disease had significantly progressed and that further delaying treatment could have serious consequences, clinicians should consider stressing the severity of patients’ conditions when recommending pPCY therapy. The use of newly developed risk assessment tools could aid in the identification of high‐risk patients and objectively communicate that risk to the patient 16 . In addition to the objective assessment of disease severity, clinicians should consider addressing patient perceptions of pPCY therapy’s negative impact on QoL.…”