Information Experiences and Needs in Patients with Pulmonary Arterial Hypertension or Chronic Thromboembolic Pulmonary Hypertension

Abstract

Background. Pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are fatal, noncurable, but treatable diseases that strongly affect the patients. Objective. To describe patients' experience of information relating to PAH or CTEPH. Methods. A qualitative method using content analysis was applied. Seventeen patients (thirteen women and four men) aged 28–73 years from a regional PAH centre were individually interviewed. Results. Three categories that describe patients' experiences of information emerged: handling of information, struggling with feelings that also affect others, and vulnerability associated with uncertainty. The patients would have welcomed more information to relatives from the healthcare professionals. Shortcomings on communicating a prognosis were experienced. The mediated information and knowledge gave the patients insight into physical or psychosocial problems. Mutual exchange of information between patients and healthcare professionals were marred by different experiences of attitudes, behaviour, and ownership. Conclusions. In the future, healthcare organizations must struggle to achieve a holistic healthcare by making it more person-centred, and they must also promote cooperation between PAH centres and local healthcare providers. It is essential to determine the most appropriate and valuable path of information and communication and, thereby, the most cost-effective management of PAH or CTEPH.

Support Experienced by Patients Living with Pulmonary Arterial Hypertension and Chronic Thromboembolic Pulmonary Hypertension

“…The patients were encouraged to speak freely and the introductory question was, "When you look back, please tell me about your experience 4 and needs of support in connection with PAH or CTEPH?" A question about their experience of information in connection with PAH was also asked and has been reported in a separate article [14].…”

Adherence and medication belief in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension: A nationwide population‐based cohort survey

“…Adherence depend on interactions between several factors related to the patient and healthcare staff, as well as social and practical support . Taken together, all these factors affects the ability to participate in daily life activities and is closely related to the patients quality of life . European guidelines recommend that due to the complexity of PAH or CTEPH specific therapy, treatment adherence should be monitored carefully .…”

Information, social support and coping in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension—A nationwide population-based study

“…The healthcare professionals are commissioned to provide adequate information and timely support that is adapted to health status, needs and preferences [5]. It is also crucial to help patients and their families to deal with living with the disease and the uncertain future it brings [10,[15][16][17].…”