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BMC Pulmonary Medicine
Published in: BMC Pulmonary Medicine 1/2018

Open Access 01-12-2018 | Research article

“The missing ingredient”: the patient perspective of health related quality of life in bronchiectasis: a qualitative study

Authors: Emily K. Dudgeon, Megan Crichton, James D. Chalmers

Published in: BMC Pulmonary Medicine | Issue 1/2018

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Abstract

Background

Bronchiectasis is a heterogeneous disease which affects quality of life. Measuring symptoms and quality of life has proved challenging and research is limited by extrapolation of questionnaires and treatments from other diseases. The objective of this study was to identify the major contributors to quality of life in bronchiectasis and to evaluate existing health related quality of life questionnaires in bronchiectasis.

Methods

Eight adults with bronchiectasis participated in one to one semi-structured interviews. These were recorded and transcribed verbatim. Thematic analysis was used to identify core themes relevant to disease burden and impact. Participant views on current health related quality of life questionnaires were also surveyed.

Results

Bronchiectasis symptoms are highly individual. Core themes identified were symptom burden, symptom variation, personal measurement, quality of life and control of symptoms. Themes contributing to quality of life were: social embarrassment, sleep disturbance, anxiety and modification of daily and future activities. Evaluation of 4 existing questionnaires established their individual strengths and weaknesses. A synthesis of the participants’ perspective identified desirable characteristics to guide future tool development.
Conclusions: This qualitative study has identified core themes associated with symptoms and quality of life in bronchiectasis. Current treatments and quality of life tools do not fully address or capture the burden of disease in bronchiectasis from the patients’ perspective.
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Metadata
Title
“The missing ingredient”: the patient perspective of health related quality of life in bronchiectasis: a qualitative study
Authors
Emily K. Dudgeon
Megan Crichton
James D. Chalmers
Publication date
01-12-2018
Publisher
BioMed Central
Published in
BMC Pulmonary Medicine / Issue 1/2018
Electronic ISSN: 1471-2466
DOI
https://doi.org/10.1186/s12890-018-0631-7

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