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While parenteral prostacyclin (pPCY) therapy, delivered either subcutaneously or intravenously (IV)is recommended for pulmonary arterial hypertension (PAH) patients with severe or rapidly developing disease, some patients refuse this treatment. This study aimed to understand, directly from patients with PAH, why pPCY was refused and, in some cases, later accepted. Interviews were conducted with 25 PAH patients who previously refused pPCY therapy (Group A: Refused/Never Initiated [n=9] and Group B: Refused/Initiated [n=16]). Patients in both groups believed that pPCY could improve their symptoms, slow disease progression, and provide them a greater ability to perform activities. Reasons for refusal included concern over side effects and the perceived limitations of pPCY on daily activities. Group A perceived their decision as a balance between quality of life and prolonging life and most acknowledged they would reconsider pPCY if other treatment options were exhausted. Group B cited they initiated therapy due to a worsening of symptoms, disease progression, to improve quality of life, to be there for their family, or a desire to live. Following initiation, Group B indicated their experience met expectations with reduced symptoms, slowed disease progression, and perception of improved survival; concerns related to pPCY were described as manageable. Given the efficacy of pPCY therapy, clinicians should apply knowledge of these findings in clinical practice. Patients noted improvements to parenteral pump technologies to include smaller size, water resistance, and implantability may increase their acceptance of this modality. Development efforts should focus on technologies that increase the acceptance of pPCY when indicated.

Most studies that explore why patients accept or deny treatment are from the healthcare provider (HCP) perspective, particularly in Pulmonary Arterial Hypertension (PAH). This study sought to understand, directly from the PAH patient, why they refuse parenteral therapy (PAR), and in some cases later reverse that decision. METHODS: Double-blinded interviews were conducted with 25 PAH patients who refused treatment with a PAR within the course of their disease. Patients were recruited through two third-party recruiting agencies focused on rare diseases including PAH, and 45-minute interviews were completed (23 Oct 2019-26 Nov 2019). Respondents were divided into two groups: those who refused PAR and never initiated it (Group A) and those who initially refused PAR but subsequently tried it (Group B). Both quantitative and qualitative analyses were performed on the data.

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