The importance of patient perspectives in pulmonary hypertension

McGoon, Michael D.; Ferrari, Pisana; Armstrong, Iain; Denis, Migdalia; Howard, Luke; Lowe, Gabi; Mehta, Sanjay; Murakami, Noriko; Wong, Brad

doi:10.1183/13993003.01919-2018

Cited by 104 publications

(129 citation statements)

References 73 publications

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“…In the era of shared-decision making, it is important to ensure patients have been thoroughly educated on initial prostanoid therapy options, and in turn, that transition between agents is feasible, as demonstrated in this case series (21).…”

Section: Discussionmentioning

confidence: 98%

Transitioning Between Prostanoid Therapies in Pulmonary Arterial Hypertension

et al. 2020

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Background: New oral prostacyclin therapies and prostacyclin agonists have become available for the treatment of pulmonary arterial hypertension (PAH). However, methods for transitioning between oral, inhaled, and parenteral formulations are not well-established, except in the form of case reports and case series. Collectively, these emphasize the lack of a standardized process and approach in transitioning patients between PAH prostanoid therapies. In this case series, we report our experience at an accredited Pulmonary Hypertension center in transitioning between various oral, inhaled, and parenteral prostanoids to offer additional guidance on safe transitions in therapy. Methods: All cases of prostanoid transitions at an accredited Pulmonary Hypertension center from March 2018 to September 2019 were included in this report. The transition approach for each case was developed through a review of the literature, extrapolation of available pharmacokinetic data, and collaboration between pharmacists and clinicians. Results: This case series describes the transition of 3 patients from selexipag to parenteral treprostinil; 1 patient transitioning from parenteral treprostinil to selexipag; 1 patient transitioning from oral treprostinil to parenteral treprostinil; and 1 patient transitioning from inhaled treprostinil to selexipag. Four of the 6 patients presented here were transitioned to an alternate prostanoid on account of clinical worsening, while the remaining 2 patients transitioned due to intolerance of parenteral therapy and poor medication adherence. This case series includes patients with various etiologies of PAH including idiopathic PAH, methamphetamine-associated PAH, and scleroderma-associated PAH. All patients successfully completed each transition without serious adverse events. Conclusions: With the increasing utilization and availability of prostanoids, there is a critical need for a standardized approach in transitioning safely between different formulations without compromising treatment efficacy. In this case series, we present our clinical experiences, guided by available pharmacokinetic data, in transitioning between various prostanoid formulations.

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Section: Discussionmentioning

confidence: 98%

Transitioning Between Prostanoid Therapies in Pulmonary Arterial Hypertension

et al. 2020

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“…While the incidence of PH is higher in women than men, 32 the magnitude of this difference appears compounded in this study (likely due to responder bias), and therefore experiences and perspective unique to men may be under-represented. Too tired or fatigued (18) Too breathless 124 (17) Frustration at physical limitations 65 (9) Limited by pain (9) Fear 7Cost 46 (6) Safety concerns 43 (6) Exercise is unenjoyable 39 5Limited mobility 37 (5) Unsure what exercise to do 35 Data were derived from a question asking respondents to identify all perceived barriers to exercise. Each respondent could select multiple options; therefore the total number of responses is larger than the number of individual respondents.…”

Section: Study Limitationsmentioning

confidence: 99%

‘Tired, afraid, breathless … .’ An international survey of the exercise experience for people living with pulmonary hypertension

et al. 2020

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Objectives: To identify patterns of exercise behaviour, attitudes towards exercise, barriers and enablers of exercise for people living with Pulmonary Hypertension (PH). Accessibility of rehabilitation services from a patient perspective was also explored. Methods: a voluntary, international survey of people living with PH was conducted, with mixed quantitative and qualitative data collection, in an online and paper format. Results: Data from 187 participants in 19 countries were included in the analyses. 52% (95/183) of people with PH reported that they attempted to engage in regular physical activity. This was less than the proportion who did so prior to diagnosis (61%, 112/184, p=0.006), and was accompanied by uncertainty and anxiety about exercise. 63% (113/180) of the cohort reported experiencing previous adverse events whilst exercising, which was associated with a greater likelihood of ongoing exercise concerns and anxiety. Fear, frustration and uncertainty about exercise were noted as common barriers to engaging in exercise with PH. Other barriers to exercise included intrinsic factors such as debilitating breathlessness and fatigue, and external factors such as cost and access to appropriate services. Most respondents (76%, 128/169) did not have access to a multi-disciplinary rehabilitation service, although an overwhelming majority (92%, 159/172) reported this would be helpful. Respondents rated education; a supervised, structured exercise program; and psychology input as the most important components of a multi-disciplinary rehabilitation service for PH. Conclusion: Health professionals must work together with consumers to co-design rehabilitation services that will facilitate exercise and increased activity for people living with PH.

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“…However, large organisations such as ESC or ERS might be able to provide certified education as part of their educational programs as they do in other diseases. The importance of integrating patients' perspectives into this education is also important to highlight [19].…”

Section: Discussionmentioning

confidence: 99%