Objective: 

Use qualitative research methods to understand patient- and physician-perceived barriers and facilitators to implementation of palliative care and advance care planning for patients with PAH.

Methodology: 

Prior to each patient interview, I will ask each participant to complete a short questionnaire about barriers and facilitators to advance care planning and end-of-life discussions.  This questionnaire was developed by my mentors to examine barriers and facilitators to discussing advance care planning in patients with serious illnesses such as AIDS, cancer, and COPD.  They found that, although barriers and facilitators to communication about end-of-life care were highly individual, many patients reported wanting to discuss end-of-life care with their physicians and, even those who did not, acknowledged the value of such discussions.  In an additional qualitative study of patients with advanced cancer or COPD, patients provided insights into how these barriers and facilitators could be addressed to enhance communication about end-of-life care.

Semi-structured interviews are an appropriate method for identifying, describing and understanding experiences that have not been previously reported.  This method allows interview participants to express their opinions on sensitive issues such as end-of-life preferences and advance care planning.  For Aim 1, I will focus on patient perspectives on the following: a) symptom burden; b) understanding of palliative care, including what constitutes palliative care and when is it helpful or appropriate; c) attitudes towards and experiences with advance care planning; and d) barriers or concerns to receiving palliative care, including any patient-perceived disparities associated with socio-economic status, health literacy, and medical decision making about medical therapies, including lung transplantation.  For Specific Aim 2, I will focus on physician perspectives on the implementation of palliative care and advance care planning for patients with PAH including:  a) understanding palliative care and perceived timing of appropriateness of referral and implementation; b) attitudes toward and experiences with advance care planning; c) barriers or concerns to initiating palliative care; and d) perspectives on differences in palliative care for patients of different socioeconomic status and race/ethnicity.