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The Role of Spirituality on Decision Making About Genetic Testing and Coping with Pulmonary Arterial Hypertension

D. L. Jones

M. J. Rosenthal

E. W. Clayton


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Conference: 2010 International PHA Conference and Scientific Sessions

Release Date: 06.24.2010

Presentation Type: Abstracts

Jones DL1, Rosenthal MJ2, Clayton EW3
1. Western Washington University, Bellingham, WA, USA 
2. Nashville State Community College, Nashville, TN, USA 
3. Vanderbilt University, Nashville, TN, USA

BACKGROUNDMost Americans rely upon spirituality and religion to cope with the challenges of daily living. Those with PAH, their loved ones, and family members are no exception.

METHODSData are drawn from quantitative survey and qualitative interviews collected from 119 persons with or at risk for developing PAH between September, 2007 and August, 2008. Eighty-three (70%) were reached at eighteen-month follow-up. Interviews included questions regarding PAH diagnosis, religious beliefs and practices, subjective disease related distress (as assessed by the Impact of Event (IES) scale), feelings of psychological empowerment, perceptions of genetic testing, and other demographic information.

RESULTSAt the time of the first interview, 74% (88/119) of respondents reported that they had been diagnosed with PAH. Fifty-five percent had no known family history of the disease (PAH–sporadic), 18% (n=22) had PAH and a known family history of the disease (FPAH–diagnosed) and 26% (n=31) had a family history of PAH and were considered potentially “at risk” but did not have a PAH diagnosis (FPAH – at risk). The majority of participants were white, female, southern, and Evangelical Protestant, prayed daily, attended church regularly (at least twice a month). Results reveal that high spirituality and religious practice were associated with more decisive thinking about genetic testing and positive coping with the daily challenges of PAH.

CONCLUSIONSSpiritual beliefs and religious practice effect how persons diagnosed with or at risk for developing PAH think about testing for BMPR2 and cope with daily challenges of the disease.