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Symptom Burden and Healthcare Utilization in Pulmonary Arterial Hypertension

Catherina Madani

Sandra Lombardi

L. A. Matura


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Conference: 2015 PH Professional Network Symposium

Release Date: 09.17.2015

Presentation Type: Abstracts

File Download: 2015 Symposium Abstract - 1017

File Size: (236 kb)

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Describe characteristics of symptoms and relationships between demographics, clinical characteristics, healthcare utilization patterns and symptom burden (SB) in patients with pulmonary arterial hypertension (PAH).


There is currently no cure for PAH; thus treatment is aimed at prolonging survival, and SB mitigation. Patients living with advanced illness experience SB, which impacts quality of life (QOL), and can lead to increased healthcare utilization. Palliative care (PC) has been associated with higher QOL, longer survival, and decreased depression and aggressive care. 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.


A descriptive correlational study was conducted over a seven-month period. A consecutive sample of patients diagnosed with PAH receiving multiple medications and in functional class (FC) II or higher were recruited at an academic PAH specialized center. SB was measured using the Memorial Symptom Assessment Scale (MSAS).


All participants (N=49) reported some symptomology. The mean number of symptoms reported was 16.0 (SD +/- 6.8), with a range of 1 to 29. Despite possessing better functional status, PAH patients reported distinctively higher symptom burden across the MSAS indices when compared to other cardiovascular diseases. Working patients reported lower Global Distress Index (GDI) subscale scores (p=0.006), Physical (PHYS) subscale scores (p=0.003), and Psychological (PSYCH) subscale scores (p=0.035). Patients receiving endothelin antagonists reported a statistically lower number of symptoms (p=0.012). They also reported lower GDI, PSYCH and PHYS subscales average scores though none were significant. Patients on intravenous (IV) prostanoid therapy had higher ED visits (p<0.001) and hospitalizations (p=0.049).



Patients with PAH have a heavy SB compared to other cardiopulmonary diseases such as COPD and CHF. Patients not working, with FC III or higher, needing more than 2 clinic visits in a six-month period, and not receiving endothelin antagonist medications, may be at higher risk for heavy SB, and benefit from earlier integration of PC into their standard care. Further research is needed to assess the impact of earlier integration of PC into standard care of PAH patients.