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Health-related quality of life, treatment adherence and psychosocial support in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension

Ivarsson, Bodil LU ; Hesselstrand, Roger LU ; Rådegran, Göran LU and Kjellström, Barbro (2019) In Chronic respiratory disease 16.
Abstract

Pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) share similar quality of life impairment. The aim of the present study was to investigate health-related quality of life (HRQoL) and its relation to the perception of treatment and psychosocial support among PAH and CTEPH patients. All adult PAH or CTEPH patients in the Swedish Pulmonary Arterial Hypertension Register were invited to participate in a national cohort survey. The survey included the EuroQol 5-dimensions (EQ-5D) instrument that measures an individual's HRQoL; the Beliefs about Medicines Questionnaire-Specific Scale that assesses the perception of PAH-specific treatment; the Mastery scale that evaluates the feeling of control and... (More)

Pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) share similar quality of life impairment. The aim of the present study was to investigate health-related quality of life (HRQoL) and its relation to the perception of treatment and psychosocial support among PAH and CTEPH patients. All adult PAH or CTEPH patients in the Swedish Pulmonary Arterial Hypertension Register were invited to participate in a national cohort survey. The survey included the EuroQol 5-dimensions (EQ-5D) instrument that measures an individual's HRQoL; the Beliefs about Medicines Questionnaire-Specific Scale that assesses the perception of PAH-specific treatment; the Mastery scale that evaluates the feeling of control and ability to cope with the disease; and the Social Network and Support Scale that maps the social support network. Of the 440 invited patients, 74% responded. Mean age was 66 ± 14 years, 58% were female and 69% diagnosed with PAH. Patients with PAH were younger, more often female and had a lower EQ-5D index (0.67 ± 0.29 vs. 0.73 ± 0.25, p = 0.050) than patients with CTEPH. Patients with a low EQ-5D index had more concerns about treatment ( p = 0.004), lower coping ability ( p < 0.001), less emotional support ( p = 0.003) and less accessible social network ( p = 0.002). In conclusion, patients with an impaired HRQoL also reported negative effects on their social support network, ability to handle stressors and concerns about treatment.

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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Chronic disease, coping, patient preference, pulmonary hypertension, quality of life, social support
in
Chronic respiratory disease
volume
16
external identifiers
  • scopus:85056633592
DOI
10.1177/1479972318787906
language
English
LU publication?
yes
id
2ebb3578-25ab-44c9-8d8c-767cce9fbd80
date added to LUP
2018-11-26 12:47:06
date last changed
2019-01-06 14:17:18
@article{2ebb3578-25ab-44c9-8d8c-767cce9fbd80,
  abstract     = {<p>Pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) share similar quality of life impairment. The aim of the present study was to investigate health-related quality of life (HRQoL) and its relation to the perception of treatment and psychosocial support among PAH and CTEPH patients. All adult PAH or CTEPH patients in the Swedish Pulmonary Arterial Hypertension Register were invited to participate in a national cohort survey. The survey included the EuroQol 5-dimensions (EQ-5D) instrument that measures an individual's HRQoL; the Beliefs about Medicines Questionnaire-Specific Scale that assesses the perception of PAH-specific treatment; the Mastery scale that evaluates the feeling of control and ability to cope with the disease; and the Social Network and Support Scale that maps the social support network. Of the 440 invited patients, 74% responded. Mean age was 66 ± 14 years, 58% were female and 69% diagnosed with PAH. Patients with PAH were younger, more often female and had a lower EQ-5D index (0.67 ± 0.29 vs. 0.73 ± 0.25, p = 0.050) than patients with CTEPH. Patients with a low EQ-5D index had more concerns about treatment ( p = 0.004), lower coping ability ( p &lt; 0.001), less emotional support ( p = 0.003) and less accessible social network ( p = 0.002). In conclusion, patients with an impaired HRQoL also reported negative effects on their social support network, ability to handle stressors and concerns about treatment.</p>},
  author       = {Ivarsson, Bodil and Hesselstrand, Roger and Rådegran, Göran and Kjellström, Barbro},
  keyword      = {Chronic disease,coping,patient preference,pulmonary hypertension,quality of life,social support},
  language     = {eng},
  series       = {Chronic respiratory disease},
  title        = {Health-related quality of life, treatment adherence and psychosocial support in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension},
  url          = {http://dx.doi.org/10.1177/1479972318787906},
  volume       = {16},
  year         = {2019},
}