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

Ivarsson, Bodil LU ; Rådegran, Göran LU ; Hesselstrand, Roger LU and Kjellström, Barbro (2017) In Patient Education and Counseling 100(5). p.936-942
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. ±. 14. years, 71% were female and 69% were diagnosed with PAH and 31% with CTEPH.... (More)

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. ±. 14. years, 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.

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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Chronic illness, Communication, Mastery, Professionals-patient relations pulmonary hypertension, Social support
in
Patient Education and Counseling
volume
100
issue
5
pages
936 - 942
publisher
Elsevier
external identifiers
  • scopus:85009388239
  • wos:000401088900018
ISSN
0738-3991
DOI
10.1016/j.pec.2016.12.021
language
English
LU publication?
yes
id
25eb0cda-e677-4ea7-a069-5ab0013b318e
date added to LUP
2017-01-27 07:32:13
date last changed
2018-01-07 11:46:57
@article{25eb0cda-e677-4ea7-a069-5ab0013b318e,
  abstract     = {<p>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 &amp; Support Scale. Results: The response rate was 74% (n. =325), mean age 66. ±. 14. years, 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.</p>},
  author       = {Ivarsson, Bodil and Rådegran, Göran and Hesselstrand, Roger and Kjellström, Barbro},
  issn         = {0738-3991},
  keyword      = {Chronic illness,Communication,Mastery,Professionals-patient relations pulmonary hypertension,Social support},
  language     = {eng},
  number       = {5},
  pages        = {936--942},
  publisher    = {Elsevier},
  series       = {Patient Education and Counseling},
  title        = {Information, social support and coping in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension-A nationwide population-based study},
  url          = {http://dx.doi.org/10.1016/j.pec.2016.12.021},
  volume       = {100},
  year         = {2017},
}