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Objectives: Endobronchial valve (EBV) treatment is a treatment option for selected patients with severe chronic obstructive pulmonary disease (COPD) to reduce dyspnea and improve quality of life. However, the procedure is associated with risk of complications, and not all patients achieve the expected outcomes. The present study explores patients' expectations while waiting for EBV treatment. Methods: Fifteen patients accepted for EBV treatment at Aarhus University Hospital in Denmark from October 2020 to June 2021 participated in a 30-min, semi-structured interview about (1) the experience of living with COPD and (2) expectations regarding EBV. Results: Four themes were identified: a life of reduced quality; hopes and expectations; information about EBV; and perception of risks. Most patients described their lives as not worth living, and they hoped that EBV would give them their physical and social lives back, while also being aware that EBV would probably not work miracles. Patients' information seeking was influenced by their hopes and expectations to the treatment. They filtered out negative information, focusing on the hope for a positive outcome. This made them willing to run the risk of complications. Conclusion: Living a life of considerably reduced quality, patients might have an increased focus on potential positive effects of EBV treatment while filtering out information about potential side effects. This might bias their decision-making process.
RESUMEN
BACKGROUND: Sarcoidosis is a systemic disease that primarily affects the younger population. Longitudinal studies of the economic burden of sarcoidosis are scarce. This study evaluates overall the economic burden of sarcoidosis in Denmark before and after initial diagnosis. METHODS: We identified patients with sarcoidosis in the Danish National Patient Registry (1998-2010). All controls were randomly selected and matched concerning age, gender and residence. Data on direct and indirect costs, including frequency of primary and secondary sector contacts and procedures, medication, unemployment benefits and social transfer payments were extracted from national databases for patients and controls. RESULTS: We identified 9119 patients with sarcoidosis and 36,432 matching controls. Patients with sarcoidosis had significantly higher rates of health-related contacts, higher usage of medication and more received unemployment and social payments compared with controls. The total health expenses were significantly higher in the sarcoidosis group 11 years before and 11 years after diagnosis than among controls. Income from public transfer payments was significantly higher in the sarcoidosis group five years prior of diagnosis until nine years post diagnosis. Especially women between 40 and 59 years have a lower income than their controls. CONCLUSION: Sarcoidosis has a socioeconomic impact on adults especially during their prime working and providing years and this is evident several years prior to and post diagnosis. The authors advocate that further research should focus on identifying the proportion of patients with sarcoidosis that imposes the largest economic burden. Increased focus on early diagnosis and disease management may reduce the socioeconomic burden of sarcoidosis.