Purpose: To describe symptoms experienced by pulmonary arterial hypertension (PAH) patients and the impact these symptoms have had on their lives. Method: Qualitative descriptive methodology was chosen incorporating semistructured interviews to investigate the symptom experience of ten patients with PAH. Results: All patients were diagnosed with WHO Group 1 PAH and 70% were WHO functional Class III. Two overarching themes emerged: holding back and redefining life. Holding back was represented by three sub-themes: fear, anticipation of worsening symptoms, and treatment effects. Redefining life was characterized by uncertainty, activity restrictions, and making the best of it. Conclusion: This study revealed specific concerns related to the symptom experience of PAH patients and how they redefined their lives to accommodate these symptoms. These findings provide a basis for larger, quantitative studies to examine the extent of symptom impact as well as a framework for development of self management interventions to improve the symptom experience and QOL.
Barst, R.J., McGoon, M., Torbicki, A., Sitbon, O., Krowka, M.J., Olschewski, H., & Gaine, S. ( 2004). Diagnosis and differential assessment of pulmonary arterial hypertension. Journal of the American College of Cardiology , 43(12), S40-S47.
2.
Centers for Disease Control and Prevention. ( 2005). Pulmonary Hypertension Surveillance-United States, 1980-2002 . MMWR Surveillance Summaries, 54.
3.
Chua, R., Keogh, A.M., Byth, K., & O’Loughlin, A. (2006). Comparison and validation of three measures of quality of life in patients with pulmonary hypertension . Internal Medicine Journal, 36, 705-710.
4.
Chow, S., Pope, J.E., & Mehta, S. ( 2008). Lack of correlation of the health assessment questionnaire disability index with lung parameters in systemic sclerosis associated pulmonary arterial hypertension. Clinical and Experimental Rheumatology , 26, 1012-1017.
5.
Cleeland, C. ( 2007). Symptom burden: Multiple symptoms and their impact as patient reported outcomes. Journal of the National Cancer Institute Monographs, 37, 16-21.
6.
Creswell, J.W. ( 2003). Research design: Quantitative, qualitative, and mixed methods approaches (2nd ed.). Thousand Oaks, CA: Sage.
7.
D’Alonzo, G.E., Barst, R.J., Ayres, S.M., Bergofsky, E.H., Brundage, B.H., Detre, K.M., . . . Wu, M. ( 1991). Survival in patients with primary pulmonary hypertension: Results from a national prospective registry. Annals of Internal Medicine, 115, 343-349.
8.
Flattery, M.P., Pinson, J.M., Savage, L., & Salyer, J. ( 2005). Living with pulmonary artery hypertension: Patients’ experiences. Heart Lung, 34, 99-107.
9.
Henkens, I.R., Scherptong, R.W.C., van Kralingen, K.W., Said, S.A.M., & Vliegen, H.W. ( 2008). Pulmonary hypertension: The role of the electrocardiogram . Netherlands Heart Journal, 16, 250-254.
10.
Hoeper, M. ( 2009). Definition, classification, and epidemiology of pulmonary arterial hypertension. Seminars in Respiratory and Critical Care Medicine, 30, 369-375.
11.
Humbert, M., Sitbon, O., & Simonneau, G. ( 2004). Treatment of pulmonary arterial hypertension. New England Journal of Medicine, 351, 1425-1436.
12.
Lincoln, Y.S., & Guba, E.G. ( 1985). Naturalistic inquiry. Beverly Hills, CA: Sage.
13.
Looper, K.J., Pierre, A., Dunkley, D.M., Sigal. J. J., & Langleben, D. ( 2009). Depressive symptoms in relation to physical functioning in pulmonary hypertension. Journal of Psychosomatic Research , 66, 221-225.
14.
Lowe, B., Grafe, K., Ufer, C., Kroenke, K., Grunig, E., Herzog, W., & Borst, M. ( 2004). Anxiety and depression in patients with pulmonary hypertension . Psychosomatic Medicine, 66, 831-836.
15.
Macchia, A., Marchioli, R., Tognoni, G., Scarano, M., Marfisi, R.M., Tavazzi, L., & Stuart, R. ( 2010). Systematic review of trials using vasodilators in pulmonary arterial hypertension: Why a new approach is needed. American Heart Journal, 159, 245-257.
16.
Matura, L.A., & Carroll, D.L. ( 2010). Human responses to pulmonary arterial hypertension review of the literature. Journal of Cardiovascular Nursing, 25, 420-427.
17.
McCollister, D.H., Beautz, M., McLaughlin, V., Rumsfeld, J., Masoudi, F.A., Tripputi, M., . . . Badesch, D. B. (2010). Depressive symptoms in pulmonary arterial hypertension: Prevalence and association with functional status. Psychosomatics, 51, 339-339.
18.
McGoon, M.D., & Kane, G.C. ( 2009). Pulmonary hypetension: Diagnosis and management. Mayo Clinic Proceedings, 84, 191-207.
19.
McGoon, M., Gutterman, D., Steen, V., Barst, R., McCrory, D., Fortin, T.A., & Loyd, J.E. ( 2004). Screening, early detection, and diagnosis of pulmonary arterial hypertension. Chest, 126(1), 14S-34S.
20.
Rich, S. ( 1998). Executive summary from the World Symposium on Primary Pulmonary Hypertension 1998. Paper presented at the World Symposium on Primary Pulmonary Hypertension 1998, Evian, France.
21.
Richards, L. ( 1999). Using NVIVO in qualitative research. Thousand Oaks, CA: Sage.
22.
Sandelowski, M. ( 2000). Focus on qualitative methods: Whatever happened to qualitative description? Research in Nursing & Health, 23, 334-340.
23.
Schneider, S.J., Kerwin, J., Frechtling, J., & Vivari, B.A. ( 2002). Characteristics of the discussion in online and face to face focus groups. Social Science Computer Review, 20, 31-42.
24.
Taichman, D.B., Shin, J., & Hud, L. ( 2005). Health-related quality of life in patients with pulmonary arterial hypertension. Respiratory Research, 6, 92-92.
