Bodil Ivarsson1, Göran Rådegran2, Roger Hesselstrand3, Barbro Kjellström4. 1. Lund University, Department of Clinical Sciences, Lund, Cardiothoracic Surgery, and Skåne University Hospital, and Medicine Services University Trust, Region Skåne, Lund, Sweden. Electronic address: bodil.ivarsson@med.lu.se. 2. Lund University, Department of Clinical Sciences, Lund, Cardiology, and The Section for Heart Failure and Valvular Disease, Skåne University Hospital, Lund, Sweden. 3. Lund University, Department of Clinical Sciences, Lund, Rheumatology, and The Clinic for Rheumatology, Skåne University Hospital, Lund, Sweden. 4. Department of Medicine, Karolinska Institute and Karolinska University Hospital, Stockholm, Sweden.
Abstract
OBJECTIVE: Pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) decrease life expectancy for affected patients. The aim was to describe the perceptions of received information regarding diagnosis, treatment and management, as well as social support and coping perceived by patients with PAH or CTEPH. METHODS: A descriptive, national cohort survey that included patients from all PAH-centres in Sweden. A quantitative methodology was employed where all patients received three questionnaires, QLQ-INFO25, Mastery Scale and Social Network & Support Scale. RESULTS: The response rate was 74% (n=325), mean age 66±14years, 71% were female and 69% were diagnosed with PAH and 31% with CTEPH. Sixty percent of respondents were satisfied with the received information and felt it was helpful. Best experiences were of information in the areas of medical tests (70%) and the disease (61%). Forty-five percent wanted more information. Men described their social network as more accessible than women (p=0.004). Those living alone had a lower coping ability. CONCLUSION: Despite a high level of satisfaction with the received information, almost half of the patients wanted more information. PRACTICE IMPLICATIONS: Regular repeating or giving new information should be an ongoing process in the care of patients at the PAH-centres.
OBJECTIVE:Pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) decrease life expectancy for affected patients. The aim was to describe the perceptions of received information regarding diagnosis, treatment and management, as well as social support and coping perceived by patients with PAH or CTEPH. METHODS: A descriptive, national cohort survey that included patients from all PAH-centres in Sweden. A quantitative methodology was employed where all patients received three questionnaires, QLQ-INFO25, Mastery Scale and Social Network & Support Scale. RESULTS: The response rate was 74% (n=325), mean age 66±14years, 71% were female and 69% were diagnosed with PAH and 31% with CTEPH. Sixty percent of respondents were satisfied with the received information and felt it was helpful. Best experiences were of information in the areas of medical tests (70%) and the disease (61%). Forty-five percent wanted more information. Men described their social network as more accessible than women (p=0.004). Those living alone had a lower coping ability. CONCLUSION: Despite a high level of satisfaction with the received information, almost half of the patients wanted more information. PRACTICE IMPLICATIONS: Regular repeating or giving new information should be an ongoing process in the care of patients at the PAH-centres.