Pulmonary Arterial Hypertension
AbstractBackground pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are fatal, no curable, but treatable diseases that strongly affect the patients. Objective. To decribe patient’s experience of information relating to PAH or CTEPH. Methods. A qualitative method using content analysis was applied. Seventeen patients (thirteen women an four men) aged 28-73 years from a regional PAH center were individually interviewed. Results. Three categories that describe patient’s 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
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Shortcomings on communicating a prognosis were experienced. The mediatd 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, behavior, and ownership. Conclusions. In the future, healthcare organizations must struggle to achieve a holistic healthcare by making it more person-centered, and they must also promote cooperation between PAH centers 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
IntroductionPulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH), both part of different groups of pulmonary hypertension (PH), are fatal, rare diseases, with an overall prevalence of 15-50 individuals per million for PAH, whereas the incidence of CTEPH is more uncertain (1,2). In 2013, in Sweden, roughly PH affects 590 patients and the mean age at diagnosis is 54 years for women and 58 for men. Nearly twice as many women as men are …show more content…
The healthcare professionals must have a patient centered approach, in which the patients are encouraged to
Shortcomings on communicating a prognosis were experienced. The mediatd 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, behavior, and ownership. Conclusions. In the future, healthcare organizations must struggle to achieve a holistic healthcare by making it more person-centered, and they must also promote cooperation between PAH centers 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
IntroductionPulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH), both part of different groups of pulmonary hypertension (PH), are fatal, rare diseases, with an overall prevalence of 15-50 individuals per million for PAH, whereas the incidence of CTEPH is more uncertain (1,2). In 2013, in Sweden, roughly PH affects 590 patients and the mean age at diagnosis is 54 years for women and 58 for men. Nearly twice as many women as men are …show more content…
The healthcare professionals must have a patient centered approach, in which the patients are encouraged to