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Beyond the Basics: Development and Implementation of a Pulmonary Arterial Hypertension (PAH) Nurse-Patient Communications Pilot Program

Marsha Burks

Martha Rice


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Conference: 2017 PH Professional Network Symposium

Release Date: 10.06.2017

Presentation Type: Abstracts

File Download: 2017 PHPN Abstract 1044

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Abstract presented at the 2017 PH Professional Network Symposium held in Bethesda, MD on October 5-7, 2017


The 2017 Beyond the Basics pilot program includes a series of interactive educational workshops in which pulmonary arterial hypertension (PAH) nurses and social workers discuss means to enhance care through enriched nurse-patient communications.


While PAH-specific communications and counseling strategies to address patients' psychosocial and emotional needs are beneficial, training and techniques are not widely available and only a few centers have access to a social worker. In this program, PAH nurses and social workers share communication strategies and approaches to conversations with patients about the impact of their disease beyond clinical fundamentals. The PAH social workers also share best practices to address quality of life (QoL) issues.


An advisory committee comprising expert PAH nurses and social workers was convened in 2016 to develop an educational PAH nurse-patient communications program. The resulting pilot consists of small group, interactive 2-hour workshops, sponsored by Actelion Pharmaceuticals. The curriculum consists of case-based presentations on psychosocial and emotional needs of patients with PAH, and communications and counseling strategies to address them. Participants learn about and discuss means to tailor communications to the individual patient, to assess health literacy and comprehension, to address PAH-specific sensitive issues such as depression/anxiety and the dangers of pregnancy, and to coach patients on self-care and "ownership" of PAH management. Ten nurse and social worker faculty are trained to present the content and moderate discussions. Each workshop features a 3-member faculty team: 2 nurse moderators and 1 social worker. The workshops are attended by 5 to 10 PAH nurses and other care team members from the local area. Evaluation forms allow attendees to opt in for future programming.


Seven of 10 pilot program workshops were completed in cities across the country, and were attended by 52 nurses, nurse practitioners, and other PAH care team members as of June 2017. In response to the question, "What information did you find most important, interesting, or impactful?" participants stated they valued the social worker presentation, the open dialogue, and techniques on making sure the patient fully understands their diagnosis. Key insights from the regional workshops were:

• Nurses want opportunities to collaborate and share best practices with peers
• Strategies to address difficult conversations are needed/valued
• Nurses rarely have access to social workers but highly value their services
• Limitations in access to and knowledge of PAH support services overburden nurses and compromise care delivery
• Nurses do not have enough time to discuss patients' reduced QoL
• PAH care team communications enrichment is an area of need


Implementation of a program that educates PAH nurses on communications and counseling strategies may help address psychosocial and emotional needs of patients with PAH. Social workers offer valuable insights, techniques, and feedback on access to support services and communications-based means to enrich PAH patient care. Further education and resources are warranted to improve patient communications and access to support services. Peer sharing of best practices is critical to fully address the real world patient communications needs of nurses and other PAH care team members.