Abstract
BackgroundBronchiectasis 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.MethodsEight 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.ResultsBronchiectasis 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.
Highlights
Bronchiectasis is a heterogeneous disease which affects quality of life
There is some overlap between symptoms of bronchiectasis and those of Chronic obstructive pulmonary disease (COPD) and asthma, and two of these health related quality of life (HRQL) questionnaires (St George’s Respiratory Questionnaire and Leicester Cough Questionnaire) have been validated for
The inclusion criteria were: A clinical diagnosis of bronchiectasis confirmed by Computed tomography (CT) scanning, an ability to communicate in English, respiratoy symptoms that are caused by the primary diagnosis of bronchiectasis
Summary
Measuring symptoms and quality of life has proved challenging and research is limited by extrapolation of questionnaires and treatments from other diseases. Bronchiectasis is a chronic respiratory disease characterised by cough, sputum production and frequent chest infections [1, 2]. These symptoms impact health related quality of life (HRQL). HRQL questionnaires have become a useful tool for measuring the impact of disease on patients’ lives and are essential to assess new treatments in clinical trials [3,4,5]. The quality of life bronchiectasis questionnaire (QoL-B) was developed in the context of a clinical trial of an inhaled antibiotic and has not been tested widely in broad populations of patients with bronchiectasis [11].
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