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[Patients' perspective of living with PAH or CTEPH in Sweden]
Bodil Ivarsson1, Roger Hesselstrand1, Göran Rådegran2
1Lunds Universitet Institutionen for kliniska vetenskaper i Lund - Lund, Sweden Lunds Universitet Institutionen for kliniska vetenskaper i Lund - Lund, Sweden.
Abstract:
For patients living with chronic conditions, the daily life will change due to symptoms, drug treatment, and psychosocial factors caused by the disease. Our studies show that Swedish patients with PAH or CTEPH are satisfied with the information they have received, but still have a wish for more. Therefore, it is important to repeat the information on a regular basis and to make sure that patients have understood and remember the messages. In order to increase the knowledge about their disease, improve compliance with treatment and quality of life, patients and next of kin should continuously be informed by the multidisciplinary team at the PAH/CTEPH-specialist care centers.