Bronchiectasis has a “highly personal” impact on patients’ quality of life, a U.K study reports, but a number of factors are of particular impact, including an ability to control symptoms and anxiety levels, comfortably engage in social activities, and to get a good night’s sleep.
This small study also found that current quality of life questionnaires given to these patients do not fully capture their views — especially in failing to measure life changes linked to this disease since its onset.
The research, “The missing ingredient”: the patient perspective of health related quality of life in bronchiectasis: a qualitative study,” was published in the journal BMC Pulmonary Medicine.
While various questionnaires assessing health-related quality of life (HRQL) are given to bronchiectasis patients, few studies have compared which might be most appropriate to them.
The adoption of a patient-led model in clinical research marks a shift from the traditional approach, in which doctors decide on appropriate outcome measures when testing treatments. Widely used bronchiectasis treatments may only result in small changes within such questionnaires, and researchers suggested these small change may be because clinicians are unable to measure what is most important to patients.
One issue in bronchiectasis research is the lack of specific tools, questionnaires and treatments — ones in use have been adapted from other diseases.
The researchers conducted a qualitative study to assess what contributes to quality of life in these patients, and to collect patients’ opinions of how well available questionnaires reflect quality of life.
This approach intended to identify important themes related to disease burden and impact, “with the aim of guiding development of more patient [focused], responsive and meaningful HRQL tools in future,” the researchers wrote.
Eight bronchiectasis patients (five women, mean age 72) attending a specialist clinic in Dundee, Scotland, were interviewed to explore symptoms and the value of existing questionnaires. The interviewer had no experience with bronchiectasis to avoid bias.
Four of the eight patients had idiopathic bronchiectasis, two post-infective bronchiectasis, one had co-existing COPD and another had co-existing mild asthma.
The team used questionnaires identified in a literature review as those used in bronchiectasis studies assessing symptoms and quality of life. They were the St. Georges Respiratory Questionnaire (SGRQ), the Quality of Life Bronchiectasis Questionnaire version 3.1 (QolB), the Leicester Cough Questionnaire (LCQ), and the COPD assessment test (CAT).
Results found that patients regarded bronchiectasis exacerbations as an integral part of daily life with this disease, and although they sometimes tried to self-manage such flares, they recognized the need to seek medical help.
Analysis also identified five core themes relevant to disease burden and impact: symptom burden, symptom variation, personal measurement of symptoms, quality of life, and control over symptoms. In turn, social embarrassment, sleep disturbance, anxiety, and the need to modify daily and future activities were the most relevant themes contributing to quality of life.
“Our analysis suggests that what most strongly affects a patient’s quality of life is highly personal to the individual, but includes an ability to feel in control of their symptoms, to achieve normal sleep, and take part in social activities without embarrassment,” the researchers wrote, adding that also anxiety and fear of exacerbations have a major impact.
“These findings are important for clinical care, because many of these are aspects that are not frequently explored in a doctor-patient consultation,” they emphasized.
Among the four questionnaires compared, QolB was preferred by six of the eight patients due its number of multiple choice answers, although the questions were sometimes ambiguous.
CAT was regarded as simple and easy to read, but patients disagreed on whether its visual scale was easy to answer. LCQ’s layout was criticized but its answers were considered favorable. Patients viewed SGRQ’s answering approach as very clear, but with too limited scope.
Data also revealed a disparity between how patients describe symptoms and how these symptoms are evaluated in questionnaires.
“Current treatments and quality of life tools do not fully address or capture the burden of disease in bronchiectasis from the patients’ perspective,” the researchers wrote, adding that patients tend to focus “on ‘change from baseline’ or differences between what they can achieve and what they want to achieve, which is highly individual.”
According to the team, the “perfect” HQRL questionnaire for bronchiectasis patients should contain “questions to establish the patients baseline with a second question or set of questions to establish change from baseline” (time of diagnosis and treatment start).
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