Introduction NICE guidance identifies the need to ensure effective communication of evidence-based information between patients and professionals to allow informed decision-making.
Aim To assess patients' experiences of information provision within our Respiratory Unit and explore ideas for service improvement.
Methods A questionnaire was distributed to 50 patients (20 lung cancer, 20 COPD, 10 ILD).
Results Patients with COPD felt more short of breath (mean NRS score 6.9; lung cancer 4.05; ILD 3.3; ANOVA p=0.001) and were more troubled by it (p=0.002). Patients with COPD and lung cancer experienced episodes of panic more than patients with ILD (80% vs. 70% vs. 40% respectively). 45% of the lung cancer group expected their condition to improve, compared to 16% and 10% of patients with COPD and ILD respectively; however overall there was no significant difference between the groups' expectations of their disease prognosis (p=0.09). 40–58% of patients could not recall being told about their future disease course – 20% of each group reported being told they would ‘get worse’. Most patients received information from their GP and Hospital Consultant (although Clinical Nurse Specialists (CNS) rated highly in the lung cancer group 55% (15% COPD, 10% ILD)); few patients accessed the internet for this purpose (10-15%).
Patients were satisfied with their treatment however provision of more information about their disease and improved access to their GP and Hospital Consultant were identified as ways to improve care.
Discussion Our patients' experiences mirror NICE guidance that communication improves care. Patients recognise Hospital Consultants as the main source of information yet identify a need for more information to optimise care. This remains an area we can influence. Increasing access to CNS support and judicious use of the internet could help to alleviate this deficit.
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