Symptom Burden and Healthcare Utilization in Pulmonary Arterial Hypertension

Background: Pulmonary arterial hypertension (PAH) is a rapidly progressive disease. There is currently no cure; thus treatment is aimed at prolonging survival, improving functional status (FS), and symptom mitigation. Symptom burden (SB) can impact quality of life (QOL), and lead to increased healthcare utilization. Palliative care (PC) has been associated with higher QOL, decreased depression, aggressive care, and mortality. The Institute of Medicine\u27s (IOM) recent report supports earlier integration of PC for people living with serious illness. Detection of patients at high risk for heavy SB may help to identify patients who could benefit from earlier integration of PC into standard care. Objectives: Describe symptom occurrence and characteristics, and examine relationships between selected demographics, clinical characteristics, healthcare utilization patterns, and SB in patients with PAH. Methods: A descriptive correlational study was conducted with a consecutive sample of PAH patients recruited at an academic medical center. Participants completed questionnaires at the time of their usual clinic visit. Demographics and perceived SB using the Memorial Symptom Assessment Scale (MSAS) were collected. A chart audit to collect clinical characteristics, and healthcare utilization patterns was completed. Data were analyzed with descriptive and correlational statistics. Results: One hundred percent reported some symptomology. The mean number of symptoms reported was 16.0 (SD +/- 6.8), range of 1 to 29; three most common were, lack of energy (92%), shortness of breath (80%), and feeling drowsy (78%). Working patients, reported significantly lower Global Distress Index scores (GDI) (p = .006), physical subscale scores (PHYS) (p = .003), and psychological subscale scores (PSYCH) (p = .035) compared to those not working. Patients who made more than 2 clinic visits within the previous six months had significantly higher GDI scores (p = .001), PHYS subscale scores (p\u3c .001), and PSYCH subscale scores (p = .035). Patients receiving endothelin antagonists reported a statistically lower number of symptoms experienced (p = .012) compared to patient not receiving these medications. Patients on intravenous prostanoid therapy had more emergency department visits (p \u3c .001) and hospitalizations (p = .049) compared to patients not on intravenous prostanoid medications. Implications: Patients with PAH experience heavy SB. Patients with heavier reported SB include: those not working, not receiving endothelin antagonist medications, in FC III or IV, and those with more than 2 clinic visits in a 6-month period