Patient information, education and self-management in bronchiectasis: facilitating improvements to optimise health outcomes

Abstract

BackgroundBronchiectasis is an incurable lung disease characterised by irreversible airway dilatation. It causes symptoms including chronic productive cough, dyspnoea, and recurrent respiratory infections often requiring hospital admission. Fatigue and reductions in quality of life are also reported in bronchiectasis. Patients often require multi-modal treatments that can be burdensome, leading to issues with adherence. In this article we review the provision of, and requirement for, education and information in bronchiectasis.DiscussionTo date, little research has been undertaken to improve self-management in bronchiectasis in comparison to other chronic conditions, such as COPD, for which there has been a wealth of recent developments. Qualitative work has begun to establish that information deficit is one of the potential barriers to self-management, and that patients feel having credible information is fundamental when learning to live with and manage bronchiectasis. Emerging research offers some insights into ways of improving treatment adherence and approaches to self-management education; highlighting ways of addressing the specific unmet information needs of patients and their families who are living with bronchiectasis.ConclusionsWe propose non-pharmacological recommendations to optimise patient self-management and symptom recognition; with the aim of facilitating measurable improvements in health outcomes for patients with bronchiectasis.

The self-management abilities test (SMAT): a tool to identify the self-management abilities of adults with bronchiectasis

“…These studies, both from the UK, were unable to establish benefits on their primary outcome of health-related quality of life and did not report on some clinically-relevant outcomes like exacerbations requiring antibiotics 16 . On the other hand, qualitative research suggests that information deficits may be a barrier to effective self-management of bronchiectasis 17 . Both knowledge, defined as ‘awareness of the existence of something’, and skills, defined as ‘ability or proficiency acquired through practice’ 18 , are critical capabilities for self-management.…”

“…Four generic self-management-related assessments were identified: the Patient Activation Measure 20 , the Chronic Disease Self-Efficacy Scale 21 , the Test of Functional Health Literacy in Adults 22 and the Health Education Impact Questionnaire 23 . Aside from being unable to address the specific information needs of patients with bronchiectasis as identified by Hester et al (2018), they also assessed concepts other than self-management knowledge and skills (namely, patient activation and self-efficacy) 17 . Two respiratory-specific assessments were identified.…”

Educational aspects of rare and orphan lung diseases

“…There are few studies on patient’s education needs in lung diseases. The majority of the available resources are directed at common respiratory diseases, such as chronic obstructive pulmonary disease (COPD) [ 45 ]. Most literature about educational needs in rare lung diseases focused on ILD, especially IPF [ 45 – 47 ].…”

Self-management programmes for adult patients with bronchiectasis: a systematic review and realist synthesis

“…The aim is to break the vicious recurrent cycle of infection, inflammation, impaired mucociliary clearance and structural lung damage. In addition to these interventions, treatment-seeking behaviour plans [18] and an educational component are pivotal to facilitate patients with an understanding of the basic principles of disease management and recognition of an exacerbation to enable timely intervention [19]. It is imperative therefore to investigate the efficacy and utility of self-management for patients with bronchiectasis; a research recommendation identified by the European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) [20], the Association of Respiratory Nurse Specialists UK [21], and the BTS [1].…”