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Patient perspectives on living with severe asthma in Denmark and Sweden

Papapostolou, Georgia LU orcid ; Tunsäter, Alf LU ; Binnmyr, Jonas ; Telg, Gunilla and Roslind, Klaus (2021) In European clinical respiratory journal 8(1).
Abstract

Background: Severe asthma has an acknowledged impact on health-related quality of life (HRQOL) and is associated with substantial health care costs. This study aimed to investigate the patients’ own experiences of the disease, perceptions of HRQOL, and awareness of disease management. Methods: This study included severe asthma patients in Sweden and Denmark. A quantitative Web-based survey and qualitative in-depth interviews (IDIs) were conducted. The survey included St. George’s Respiratory Questionnaire (SGRQ), Asthma Control Test (ACT), Work Productivity and Activity Impairment (WPAI), and a study-specific questionnaire on quality of care and disease awareness. Telephone-based IDIs were conducted by medical interviewers following a... (More)

Background: Severe asthma has an acknowledged impact on health-related quality of life (HRQOL) and is associated with substantial health care costs. This study aimed to investigate the patients’ own experiences of the disease, perceptions of HRQOL, and awareness of disease management. Methods: This study included severe asthma patients in Sweden and Denmark. A quantitative Web-based survey and qualitative in-depth interviews (IDIs) were conducted. The survey included St. George’s Respiratory Questionnaire (SGRQ), Asthma Control Test (ACT), Work Productivity and Activity Impairment (WPAI), and a study-specific questionnaire on quality of care and disease awareness. Telephone-based IDIs were conducted by medical interviewers following a semi-structured interview guide. Results: A total of 93 patients participated in the Web survey, and 33 participated in the IDIs. In the survey, the vast majority (77%; 72/93) had uncontrolled asthma (ACT<20). Mean total SGRQ score was 47.4 (59.7 symptom, 53.7 activity, 39.9 impact scores). Nearly 60% were treated in primary care. The IDIs revealed a long path to diagnosis, substantial and constant need for adaptations because of disease limitations, high burden on family members, social restrictions, and sick leaves and income losses. Patient awareness about guidelines, treatment goals, and available therapies was poor, and a low level of satisfaction by primary health care was seen. Conclusions: The vast majority of this severe asthma population had uncontrolled asthma and poor access to lung expert physicians. Impaired HRQOL despite patients’ adaptations was indicated. These findings highlight the need for structured patient education and greater access to units with disease-specific knowledge.

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Please use this url to cite or link to this publication:
author
; ; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Asthma control, patient perspective, patient-reported outcomes, severe asthma
in
European clinical respiratory journal
volume
8
issue
1
article number
1856024
publisher
Taylor & Francis
external identifiers
  • pmid:33414901
  • scopus:85097594052
ISSN
2001-8525
DOI
10.1080/20018525.2020.1856024
language
English
LU publication?
yes
id
8aa094a9-37b2-4747-ae4c-e6b1555272bf
date added to LUP
2022-01-31 18:21:18
date last changed
2024-04-06 17:30:18
@article{8aa094a9-37b2-4747-ae4c-e6b1555272bf,
  abstract     = {{<p>Background: Severe asthma has an acknowledged impact on health-related quality of life (HRQOL) and is associated with substantial health care costs. This study aimed to investigate the patients’ own experiences of the disease, perceptions of HRQOL, and awareness of disease management. Methods: This study included severe asthma patients in Sweden and Denmark. A quantitative Web-based survey and qualitative in-depth interviews (IDIs) were conducted. The survey included St. George’s Respiratory Questionnaire (SGRQ), Asthma Control Test (ACT), Work Productivity and Activity Impairment (WPAI), and a study-specific questionnaire on quality of care and disease awareness. Telephone-based IDIs were conducted by medical interviewers following a semi-structured interview guide. Results: A total of 93 patients participated in the Web survey, and 33 participated in the IDIs. In the survey, the vast majority (77%; 72/93) had uncontrolled asthma (ACT&lt;20). Mean total SGRQ score was 47.4 (59.7 symptom, 53.7 activity, 39.9 impact scores). Nearly 60% were treated in primary care. The IDIs revealed a long path to diagnosis, substantial and constant need for adaptations because of disease limitations, high burden on family members, social restrictions, and sick leaves and income losses. Patient awareness about guidelines, treatment goals, and available therapies was poor, and a low level of satisfaction by primary health care was seen. Conclusions: The vast majority of this severe asthma population had uncontrolled asthma and poor access to lung expert physicians. Impaired HRQOL despite patients’ adaptations was indicated. These findings highlight the need for structured patient education and greater access to units with disease-specific knowledge.</p>}},
  author       = {{Papapostolou, Georgia and Tunsäter, Alf and Binnmyr, Jonas and Telg, Gunilla and Roslind, Klaus}},
  issn         = {{2001-8525}},
  keywords     = {{Asthma control; patient perspective; patient-reported outcomes; severe asthma}},
  language     = {{eng}},
  number       = {{1}},
  publisher    = {{Taylor & Francis}},
  series       = {{European clinical respiratory journal}},
  title        = {{Patient perspectives on living with severe asthma in Denmark and Sweden}},
  url          = {{http://dx.doi.org/10.1080/20018525.2020.1856024}},
  doi          = {{10.1080/20018525.2020.1856024}},
  volume       = {{8}},
  year         = {{2021}},
}