Bronchiectasis differs from many other chronic conditions in that good disease management can prevent further deterioration. Despite this, patients lack adequate information on how best to handle their disease. A randomized clinical trial will now assess if an information resource, targeting bronchiectasis patients and their caregivers, might improve health outcomes in this patient group.
The design of the single-center trial is described in a paper appearing in the journal Trials, titled “Evaluation of a novel information resource for patients with bronchiectasis: study protocol for a randomised controlled trial.”
Exacerbations caused by airway infections are the main drivers of bronchiectasis, which is managed by antibiotics used both in a preventive manner and during worsened states. Timely identification of symptoms indicating that an exacerbation is underway, allowing prompt treatment, might improve long-term outcomes. In this context, patient self-care is crucial.
Despite this, previous studies found that patients generally lack trustworthy information to ably manage their disease, and have reported they would benefit from an information source accessible outside of specialist clinics.
Such a resource could empower patients to recognize disease changes that need a response, and provide an understanding of how their self-management could potentially alter their prognosis.
Based on in-depth interviews and focus groups identifying unmet patient needs, researchers at Newcastle University, U.K., have developed an information resource in the form of a booklet and a website.
In this first feasibility trial, researchers will enroll around 70 people, randomized to receive either the educational package or usual care. Patients in the intervention group will use the resource if, and when, they see fit, but will be given verbal and written instructions and be encouraged to use the resource at study start. Participants will also be urged to share the resource with families and caregivers.
Scientists will then evaluate whether the resource needs further fine-tuning, and if the intervention has the potential to improve patient understanding and self-management of their disease, and as a result, their health outcomes.
Participants in the control group will be given access to the resource at the end of the trial.
If study results turn out to be favorable, the researchers plan to launch a larger randomized clinical trial of the intervention, evaluating health outcomes and healthcare service use in patients with bronchiectasis.