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OBJECTIVE: The impact and natural history of connective tissue disease related interstitial lung disease (CTD-ILD) are poorly understood; and have not been previously described from the patient's perspective. This investigation sought insight into CTD-ILD from the patients' perspective to add to our knowledge of CTD-ILD, identify disease-specific areas of unmet need and gather potentially meaningful information towards development of disease-specific patient-reported outcome measures (PROMs). METHODS: A mixed methods design incorporating patient focus groups (FGs) querying disease progression and life impact followed by questionnaires with items of importance generated by >250 ILD specialists were implemented among CTD-ILD patients with rheumatoid arthritis, idiopathic inflammatory myopathies, systemic sclerosis, and other CTD subtypes. FG data were analyzed through inductive analysis with five independent analysts, including a patient research partner. Questionnaires were analyzed through Fisher's Exact tests and hierarchal cluster analysis. RESULTS: Six multicenter FGs included 45 patients. Biophysiologic themes were cough and dyspnea, both pervasively impacting health related quality of life (HRQoL). Language indicating dyspnea was unexpected, unique and contextual. Psycho-social themes were Living with Uncertainty, Struggle over Self-Identity, and Self-Efficacy - with education and clinician communication strongly emphasised. All questionnaire items were rated 'moderately' to 'extremely' important with 10 items of highest importance identified by cluster analysis. CONCLUSION: Patients with CTD-ILD informed our understanding of symptoms and impact on HRQoL. Cough and dyspnea are central to the CTD-ILD experience. Initial FGs have provided disease-specific content, context and language essential for reliable PROM development with questionnaires adding value in recognition of patients' concerns.
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OBJECTIVE: To evaluate indications, process, interventions, and effectiveness of patients undergoing intrahospital transport. Critically ill patients supported with extracorporeal membrane oxygenation are transported within the hospital to the radiology suite, cardiac catheterization suite, operating room, and from one intensive care unit to another. No studies to date have systematically evaluated intrahospital transport for patients on extracorporeal membrane oxygenation. DESIGN: Retrospective cohort analysis. SETTING: Cardiac intensive care unit in a tertiary care children's hospital. PATIENTS: All patients on extracorporeal membrane oxygenation who required intrahospital transport between January 1996 and March 2007 were included and analyzed. MEASUREMENTS AND MAIN RESULTS: A total of 57 intrahospital transports for cardiac catheterization and head computed tomography scans were analyzed. In 14 (70%) of 20 of patients with cardiac catheterization, a management change occurred as a result of the diagnostic cardiac catheterization. In ten (59%) of 17 patients, bedside echocardiography was of limited value in defining the critical problem. In the interventional group, the majority of transports were for atrial septostomy. In the head computed tomography group, significant pathology was identified, which led to management change. No major complications occurred during these intrahospital transports. CONCLUSIONS: Although transporting patients on extracorporeal membrane oxygenation is labor intensive and requires extensive logistic support, it can be carried out safely in experienced hands and it can result in important therapeutic and diagnostic yields. To our knowledge, this is the first study designed to evaluate safety and efficacy of intrahospital transport for patients receiving extracorporeal membrane oxygenation support.