Conference: 2011 PH Professional Network Symposium
Release Date: 09.22.2011
Presentation Type: Abstracts
M. Randall, BS; A Kravitz Weiss, MPH
MicroMass Communications, Inc, Cary, NC
This research was funded by United Therapeutics Corporation, Research Triangle Park, NC.
PURPOSE: This study investigated various psychosocial aspects of living with pulmonary arterial hypertension (PAH) among patients taking Tyvaso® (treprostinil) Inhalation Solution or Remodulin® (treprostinil) Injection to better understand patients' emotional experiences and to determine unmet needs with regard to informational and support resources.
BACKGROUND: Although much recent research has focused on clinical and therapeutic aspects of PAH, research on the psychosocial aspects of living with this condition is limited. Flattery, et al [Heart and Lung. 2005;34(2):99-107] reported several ways patients cope with the uncertainty of PAH and daily life with the disease. We have expanded this research to explore how patients respond emotionally to PAH diagnosis, daily disease management, and adverse medication effects, as well as the types of social support they need.
METHODOLOGY: In this qualitative study, patients with PAH were recruited through the PEER Network, a mentor network for patients taking United Therapeutics medications, and through a Facebook PAH group. Those taking Tyvaso or Remodulin and proficient in using a computer were invited to participate. Patients completed an online journal followed by a video diary. In each journaling component, patients recorded their responses to activities related to diagnosis, social support, relationships, living and coping with PAH, and medications.
FINDINGS: Nine female patients completed online journals (mean age, 40 years [range, 23-52 y]; mean time since PAH diagnosis, 6 years [range, 1-19 years]; Tyvaso, n=6; Remodulin, n=3). Based on the quality of online journal responses, 7 patients were asked to complete a video diary (Tyvaso, n=5; Remodulin, n=2). After diagnosis, patients reported going through a period of emotional trauma. They immediately began researching online resources for disease and treatment information and, over time, became involved in social support networks that became as important as their families. Patients depended on different relationships to fill specific needs. They relied on other patients with PAH for hope and a sense of community; on family and friends for assistance, sympathy, and motivation; on specialty pharmacy specialists for medication information; and on healthcare providers (i.e., doctors and nurses) for guidance. To help them cope with PAH, patients redefined what was normal for their daily lives so they were able to achieve normalcy. They strived for control over the disease, which they defined as being able to minimize the disease's effects on their daily lives. They expressed ambivalent, love-hate attitudes toward their medications. Over time as they noticed improvements, patients developed faith in their medications and found it easier to cope with adverse effects and the daily inconvenience of treatment. Medication regimens that could more easily be integrated into patients' lives (e.g., inhaled) were more desirable than those that were more complicated (e.g., parenteral).
IMPLICATIONS: These findings provide useful insights into how patients cope with PAH and how they feel about the condition. These insights can help healthcare providers anticipate and provide patients with personalized resources to meet psychosocial needs relevant for each stage in disease progression.