Objective To identify a credible explanation for the excessively high mortality associated with general practitioners who were flagged up by the Shipman inquiry. Design Retrospective analysis of routine data. Setting Primary care. Participants Two general practitioners in the West Midlands who were associated with an unacceptably high mortality of patients during 1993-2000. Main outcome measures Observed and expected number of deaths and deaths in nursing homes. Results Preliminary discussions with the general practitioners highlighted deaths in nursing homes as a possible explanatory factor. No relation was found between the expected number of deaths and deaths in nursing homes in each year during 1993-2000 for either general practitioner. In contrast, the magnitude and shape of the curves of a cumulative sum plot for excess number of deaths (observed minus expected) in each year were closely mirrored by the magnitude and shape of the curves of the number of patients dying in nursing homes; and this was reflected in the high correlations (R 2 = 0.87 and 0.89) between excess mortality and the number of deaths in nursing homes in each year for the general practitioners. These findings were supported by administrative data. Conclusions The excessively high mortality associated with two general practitioners was credibly explained by a nursing home effect. General practitioners associated with high patient mortality, albeit after sophisticated statistical analysis, should not be labelled as having poor performance but instead should be considered as a signal meriting scientific investigation.
Findings of prior occupations and risk of sarcoidosis were verified using sarcoidosis mortality rates. There were significant differences in risk for sarcoidosis mortality by occupational exposures based on sex and race.
Background
Management of patients with interstitial lung disease (ILD) requires subspecialized, comprehensive, multidisciplinary care. The Pulmonary Fibrosis Foundation established the Care Center Network (CCN) in 2013 with identified criteria to become a designated CCN site. Despite these criteria, the essential components of an ILD clinic remain unknown.
Research Questions
How are ILD clinics within the CCN structured? What are the essential components of an ILD clinic according to ILD physician experts, patients, and caregivers?
Study Design and Methods
This study had 3 components. First, all 68 CCN sites were surveyed to determine the characteristics of their current ILD clinics. Second, an online, three-round modified Delphi survey was conducted between October and December 2019 with 48 ILD experts participating in total. Items for round one were generated using expert interviews. During rounds 1 and 2, experts rated the importance of each item on a 5-point Likert scale. The a priori threshold for consensus was greater than 75% of experts rating an item as important or very important. In round 3, experts graded items that met consensus and ranked items deemed essential for an ILD clinic. Third, ILD patient and caregiver focus groups were conducted and analyzed for content to determine their perspectives of an ideal ILD clinic.
Results
Forty items across four categories (members, infrastructure, resources and multidisciplinary conference) achieved consensus as essential to an ILD clinic. Patient and caregiver focus groups identified three major themes: comprehensive, patient-centered medical care; expanded access to care; and comprehensive support for living and coping with ILD.
Interpretation
The essential components of an ILD clinic are well-aligned between physician experts and patients. Future research can use these findings to evaluate the impact of these components on patient outcomes and inform best-practices for ILD clinics throughout the world.
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