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

Emily K. Dudgeon, Megan Crichton, James Chalmers (Lead / Corresponding author)

Research output: Contribution to journalArticle

13 Citations (Scopus)
139 Downloads (Pure)

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.
Original languageEnglish
Article number81
Pages (from-to)1-10
Number of pages10
JournalBMC Pulmonary Medicine
Volume18
Issue number1
DOIs
Publication statusPublished - 22 May 2018

Keywords

  • Bronchiectasis
  • Endpoints
  • Qualitative
  • Questionnaires
  • Symptoms

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