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Quality of Life Study in Pulmonary Hypertension Patients

Tania Von Visger

K. Kuntz

E. Chipps

Namita Sood


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Conference: 2011 PH Professional Network Symposium

Release Date: 09.22.2011

Presentation Type: Abstracts

T. Von Visger, APRN, MS, CCNS, PCCN; K. Kuntz, PhD; E. Chipps, PhD, RN; N. Sood, MD, FCCP
The Ohio State University Medical Center: Department of Critical Care Nursing, Department of Psychiatry, College of Medicine: Division of Pulmonary, Allergy, Critical Care, and Sleep Medicine

PURPOSE: The aim of this study is to describe the quality of life among patients who received confirmation of PH diagnosis and being monitored at the OSUMC Pulmonary Hypertension Clinic.

The purpose of this study is:

  1. To describe mental health status, perceived stress level, interpersonal support, and quality of life among patients diagnosed with PAH,
  2. To determine the relationship between the CAMPHOR instrument and each of the following instruments: ISEL-SF, PSS-10, and PHQ
  3. To determine the relationship between QOL, mental health status, perceived stress level, interpersonal support, and length of time from diagnosis

BACKGROUND AND RESEARCH SIGNIFICANCE: Pulmonary Arterial Hypertension (PAH) is a rare and serious clinical condition affecting approximately 15 individuals per million annually (1). It is characterized by progressive cellular changes within pulmonary arteries resulting in the rise in pulmonary artery pressure. Consequently, these young, predominantly female patients are forced to live with symptoms of right-sided heart failure with an average life expectancy of about five years from the time of diagnosis (2),(3). Given the relatively young age of onset, the severity of this disease, and the rapid speed of the disease progression, identifying issues related to quality of life (QOL) is of paramount importance.

Quality of life measurement in various PAH clinical studies suggest on-going issues correlating the severity of illness to worse QOL (4), (5). Psychosocial factors contributing to lower QOL include anxiety and depression. The rarity of this disease can lead to the lack of understanding among physicians, allied health care professionals, and patients' support system. Additionally, limited available therapies and a complex medication delivery system for some PAH patients can be tremendous sources of distress. In order to study this unique population, the PAH specific QOL tool, Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) will be used in addition to other standardized measures (5) (6).

METHOD: A cross-sectional survey design will be used. A convenience sample of 115 adults (>18 years old) patients from the OSUMC Pulmonary Clinic with a confirmed PAH diagnosis will be included. After an informed consent is obtained demographic information including marital status, race/ethnicity, education, and occupation, time since diagnosis, New York Heart Association class, six-minute walk test time, and medications will be collected. The patients will be asked to complete the CAMPHOR, The ISEL-SF to assess aspects of social support, The PSS-10 to measures the amount of stress a person perceives in his or her life in the past month, and The PHQ, a diagnostic instrument for identification of common anxiety and depressive disorders in primary care settings. The primary analyses will be to test the correlation between CAMPHOR and each of the following instruments: ISEL-SF, PSS-10, and PHQ.

FUNDING: Currently, we have enrolled 14 subjects thus far. The primary analyses will be to test the correlation between CAMPHOR and each of the following instruments: ISEL-SF, PSS-10, and PHQ. Secondary analyses will look at the relationship between these four instruments and length of time since PAH diagnosis. We will also look at the relationship between clinical characteristics and time since PAH diagnosis.

FUTURE IMPLICATIONS: The long-term goal of this study is to devise effective multi-disciplinary strategies for patient care within the existing health care system. These will help patients and their families to become more empowered and able to achieve their best quality of life.


  1. Gaine SP, Rubin LJ.(1998) Primary pulmonary hypertension. The Lancet: 719-25. 
  2. Bedesch, D.B., Raskob, G.E., Elliott, C.G., Krichman, A.M., Farber, H.W., Frost, A.E., Barst, R.J., Benza, R.L., Liou, T. G., Turner, M., Giles, S., Feldkircher, K., Miller, D.P., and McGoon, M.D.(2010). Pulmonary Arterial Hypertension: Baseline Characteristics From the REVEAL Registry. Chest 2010; 376-387.
  3. Benza, R.L., Miller, D.P., Gomberg-Maitland, M., Frantz, R.P., Foreman, A.J., Coffey, C.S., Frost, A., Barst, R.J., Badesch, D.B., Elliott, C.G., Liou, T.G., and McGoon, M.D. (2010). Predicting Survival in Pulmonary Arterial Hypertension Insights From the Registry to Evaluate Early and Long-Term Pulmonmary Arterial Hypertension Disease Management (REVEAL). Circulation 2010:122: 164-172. 
  4. Taichman, D.B., Shin, J., Hud, L, Archer-Chicko, C., Kaplan, S., Sager, J. S., Gallop, R., Christie, J., Hansen-Flaschen, J., and Palevsky, H. (2005). Health-related quality of life in patients with pulmonary arterial hypertension. Respiratory Research 2005, 6:92, 465-992.
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  6. McKenna SP, Doughty N, Meads DM, Doward LC, Pepke-Zaba J. The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR): a measure of health-related quality of life and quality of life for patients with pulmonary hypertension. 2006; Accessed 1, 15