Introduction Interstitial lung disease is the collective term used for a group of scarring lung conditions associated with debilitating symptoms, reduced life expectancy and a poor quality of life. NHS England commissioned ILD specialist centres to help co-ordinate patient care, arrive at accurate diagnoses faster and monitor the use of newly licensed anti-fibrotic medication. This qualitative study evaluates if specialist services significantly improves patient understanding and experiences of their disease.
Method A two-part questionnaire was handed to new patients at an ILD specialist centre, part one assessed patient perspective before their appointment and part two after. Before and after results were compared against one another using a paired t-test. Total of 46 sets of data collected.
Results Patients felt they were given more information about their diagnosis (mean 5.15 – >9.08, p value < 0.0001), prognosis (mean 4.76 – >9.04, p value < 0.0001) and treatment options (mean 4.63 – >9.28, p value < 0.0001). Patients felt they had more control over their disease (mean 3.67 – >6.66, p value < 0.001) and more confidence they were being managed correctly (mean 4.39 – >8.52, p value < 0.001). Patients felt more satisfied with their care after being seen at an ILD specialist clinic (mean 6.04 – >9.44, p value < 0.0001). More patients strongly agreed information given met their expectations (7/45 – >37/46) and was delivered in a way that was clear and easy to understand (11/45 – >36/45). 87% (40/46) of patients strongly agreed there is more benefit in being seen at a specialist centre.
Conclusion Evidence supports the utilisation of specialist centres to manage patients with ILD. Results show there is a significant improvement in patient understanding, experiences and satisfaction.
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