title: Information, social support and coping in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension-A nationwide population-based study.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  Despite a high level of satisfaction with the received information, almost half of the patients wanted more information.
  
  
  
  Regular repeating or giving new information should be an ongoing process in the care of patients at the PAH-centres.
authors.affiliation: 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.
authors.forename: Bodil
authors.initials: B
authors.lastname: Ivarsson
authors.affiliation: Lund University, Department of Clinical Sciences, Lund, Cardiology, and The Section for Heart Failure and Valvular Disease, Skåne University Hospital, Lund, Sweden.
authors.forename: Göran
authors.initials: G
authors.lastname: Rådegran
authors.affiliation: Lund University, Department of Clinical Sciences, Lund, Rheumatology, and The Clinic for Rheumatology, Skåne University Hospital, Lund, Sweden.
authors.forename: Roger
authors.initials: R
authors.lastname: Hesselstrand
authors.affiliation: Department of Medicine, Karolinska Institute and Karolinska University Hospital, Stockholm, Sweden.
authors.forename: Barbro
authors.initials: B
authors.lastname: Kjellström
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D015331:Cohort Studies; D003430:Cross-Sectional Studies; D065627:Familial Primary Pulmonary Hypertension / Q000523:psychology*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D006976:Hypertension, Pulmonary / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D059408:Pain Management; D011159:Population Surveillance; D011655:Pulmonary Embolism; D012944:Social Support; D011795:Surveys and Questionnaires; D013548:Sweden
keywords: Chronic illness; Communication; Mastery; Professionals-patient relations pulmonary hypertension; Social support