My life with pulmonary arterial hypertension: a patient perspective

Abstract

In recent years, there has been an increase in therapeutic options and treatment strategies for pulmonary arterial hypertension (PAH). However, patients still report delays in receiving a diagnosis, which is a significant burden associated with the disease, and which shows a general lack of disease awareness. This review has been written by two PAH patients to describe the patient experience and explore the ways in which patients are increasingly being given a voice in developing approaches to treatment. As patients with PAH are living longer, it is important that they work with healthcare professionals to develop treatment strategies that improve and maintain quality of life. Healthcare professionals should consider a holistic approach to disease management, including dietary recommendations, individually adapted exercise, and options for counselling where available, alongside therapeutic treatments. The experiences of patients with PAH are important not just for individual patient treatment but should also be considered in clinical trial design and guideline development. Patient representatives and patient associations can play an influential role in improving the treatment and management of PAH. In this review, we use our experiences as patient representatives to describe the current situation of patients with PAH from first experiencing symptoms to receiving treatment, using two patient cases as examples. We also discuss the role of patient advocacy in improving PAH care and future roles for patient associations and patient representatives in the design of clinical trials and development of new treatment guidelines.

Individually Tailored Remote Physiotherapy Program Improves Participation and Autonomy in Activities of Everyday Life along with Exercise Capacity, Self-Efficacy, and Low-Moderate Physical Activity in Patients with Pulmonary Arterial Hypertension: A Randomized Controlled Study

“…Conversely, in CG participants significant deterioration was confirmed exactly on the AO subscale. These results mirror data from studies on the perspective of patients with PH that described the need to organize and plan daily life, pay attention to physical and emotional well-being and follow a routine of sleep and diet [ 4 , 31 ]. Besides, Rawling et al (2020) in the synthesis of qualitative studies on the experience of adult patients living with PH described four main topics, one of which emphasized the transitional nature of PH.…”

“…Recognizing that social participation, for example, meeting friends, volunteer work, club activities, and quality of social relationships, described as sense of belonging, respect, inclusion, are important predictors of well-being in persons living with long-term health problems [ 32 ], interventions to support participation are highlighted as relevant part of the interdisciplinary treatment approach. Furthermore, note that studies of the patient’s perspective [ 3 , 4 ] agree that patients with PAH often describe feeling insecure, isolated, and as living with an invisible disease, therefore, to fully eliminate the impact of PAH on a patient’s life, complex interventions in addition to medical treatment of the underlying disease are important, and therefore our treatment approach has the potential to support an individual living with PAH to cope with illness. The observed benefits of the investigated program to improve the perceived chance of participation in activities related to frequency of social contacts in the PAH patients might be due to the change in the perception about their health condition and the improved sense of self-control abilities, as is approved relevant correlations between these factors in other studies [ 33 ].…”

“…However, adults living with PAH acknowledge many uncertainties, feel unsecure and isolated, and face the challenge of adapting and maintaining a good quality of life (QoL) [ 3 ]. To minimize the impact of PAH on a patient’s life, it is important to consider an interdisciplinary treatment approach with complex interventions related not only to the medical treatment of the underlying disease [ 4 ].…”

Management of pulmonary arterial hypertension in patients aged over 65 years

“…However, PAH adversely affects patients’ quality of life regardless of age 12–14 and being mindful of its impact on patients’ daily lives can be particularly important when treating elderly patients, for whom maintenance or improvement of quality of life may be the main treatment goal. Few studies have investigated patient-reported outcomes in elderly PAH patients but a separate review in this supplement 15 is devoted to the patient’s perspective and discusses measures to improve disease management in more detail.…”

Beyond the World Symposium on Pulmonary Hypertension: practical management of pulmonary arterial hypertension and evolving concepts

“…By sharing their journey, their fears but also their hopes and their trust in the future, we believe that the testimony of our patients will touch the heart and soul of our readers. We are together united to fight for them and with them, against this condition, which we hope, one day, will be cured 17 …”