Introduction Bronchiectasis is a chronic lung condition, characterised by dilated bronchi, causing breathlessness and chronic productive cough, with intermittent infective exacerbations. Patients often have recurrent, costly hospital admissions, a poorer quality of life, and clinically significant fatigue.1 Current estimates suggest there are 26,000 adults with the condition in the UK. There is little patient information currently available. Patients reported in a questionnaire that information improved confidence.2 Information and education could improve understanding and empower patients to self-manage. Timely recognition and appropriate management of exacerbations could improve disease stability. Qualitative investigation of patients’ needs will focus plans for resource development, ensure a user-driven format and content, and improve patient engagement and benefit.
Aims To identify, explore and understand the information needs within this patient group, describing the issues in detail.
Methods An exploratory qualitative study was conducted. Eight patients (6 female, 2 male, median age 66 years, range 33–67) were recruited from an adult bronchiectasis clinic in the North of England. In-depth semi-structured interviews were conducted, audio-recorded and transcribed. Thematic analysis was undertaken to identify common themes.
Results Four main interlinking themes emerged:
Information: patients felt available information was lacking and accessible resources were needed. A crucial factor for acceptance was trust, with participants expressing a need for information to originate from a reputable source. The majority preferred a web-based resource.
Medical care and support: Patients felt that a specialist clinic provided support, help and information, yet there was a need for accessible information outside this setting.
Diagnosis experience: this had a big impact on patients; often little information and support was given. They felt more information at an early stage would help patients to cope with and manage bronchiectasis.
Living with bronchiectasis and its impact: information and knowledge seemed to be fundamental to patients learning to live with and manage their condition.
Conclusions These findings suggest patients want more information. With trustworthy resources patients could be better equipped to understand and manage bronchiectasis. Further work is planned to inform development and implementation of a user-driven information resource for patients with bronchiectasis.
Hester KLM, Macfarlane JG, Tedd H, Jary H, McAlinden P, Rostron L, Small T, Newton JL, De Soyza A. Fatigue in bronchiectasis. QJM 2012 Mar; 105(3):235–40.
Hester KLM, McAlinden P, De Soyza A, Education and information in bronchiectasis: what do patients want? European Respiratory Journal. 2011; 38 supplement 55: P3622.