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Symptom Prevalence, Clusters, and Burden in Pulmonary Arterial Hypertension: A Pilot Study

L. A. Matura

A. McDonough

Diane Carroll


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Conference: 2010 International PHA Conference and Scientific Sessions

Release Date: 06.24.2010

Presentation Type: Abstracts

Matura LA1, McDonough A2, Carroll DL3
1. Northeastern University, Boston, MA, USA 
2. University of Massachusetts-Lowell, Lowell, MA, USA 
3. Massachusetts General Hospital, Boston, MA, USA

BACKGROUNDLimited research has been conducted regarding symptom burden and the presence of symptom clusters in pulmonary arterial hypertension (PAH). There is no research to determine if PAH patients experience their symptoms in clusters. Symptom clusters are the appearance of 3 or more concurrent symptoms that are related to each other. Work in oncology and cardiovascular disease suggests that symptom clusters are of greater consequence than individual symptoms. Determining symptom burden and symptom clusters in PAH can build on testing and implementing effective interventions to decrease symptomatology and improve quality of life.

METHODSThis was a prospective, descriptive study. A convenience sample of thirty adult participants with World Health Organization (WHO) Group I was included. Participants were asked to complete an investigator developed symptom presence and burden scale along with the Medical Outcomes Study Short Form 36 (MOS SF-36), U.S. Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR), and the Profile of Moods States (POMS). Descriptive statistics, t-tests and chi square described the sample and differences between groups. Cluster analysis determined if symptoms occurred concurrently.

RESULTSSeventy percent were female (n=21); with an overall mean age of 62 years (SD= 15.9). Seventy percent were married and most were living with family or friends (83%).Fifty seven percent required oxygen therapy; more females (n=15) reported oxygen use than males (n=2), p=0.020. Sixty-seven percent were WHO functional class III and IV. The most frequently reported symptoms were: fatigue, dizziness, syncope, shortness of breath (SOB) with exertion, edema, loss of appetite, difficulty sleeping, and Raynaud’s phenomenon symptoms. The symptoms reported as causing the most interference with life were: fatigue, SOB with exertion and difficulty sleeping. Five symptom clusters emerged: Diffuse, Minimal, Diffuse Pulmonary, Diffuse Cardiac, and Pulmonary. The U.S. CAMPHOR yielded a total symptom score of 9.83/6.3 (mean/SD); energy (4.17/3.31); breathlessness (3.5/2.05); mood (2.17/1.95); activity (8.7/5.91); and quality of life (8.5/6.7). Participants scored significantly lower on the MOS SF-36 on physical functioning (p<0.001) and general health (p=0.006) in comparison to an adult normative sample. The POMS demonstrated lower symptoms than normative adults on tension (p=0.009); depression (p<0.001); anger (p<0.001); and vigor (p<0.001).

CONCLUSIONSDistinct symptom clusters are present in patients with PAH. Patients have diminished physical functioning and perception of lower general health status. Interestingly, they reported lower tension, depression, and anger, but do have persistent lower vigor than a normative sample. Continued participant enrollment with a larger sample will yield a more complete symptom cluster profile and their relationship to demographics and quality of life.