ABSTRACT
OBJECTIVES: Inflammatory bowel disease (IBD) imposes a significant burden on patients. The authors have noticed an underlying presence of distress, seemingly distinct from anxiety and depression, in qualitative data collected for previous studies. Disease-related distress has been explored in diabetes, but has not been addressed in IBD. The authors aimed to determine the presence of IBD distress to inform development of a scale for assessing the phenomenon. METHODS: This three-phase study used (1) a conceptual framework based on diabetes distress to conduct secondary analysis of qualitative data from four previous IBD studies (n=49 transcripts). Patient advisors confirmed the themes identified as causing distress, which guided (2) a focus group with people with IBD (n=8) and (3) items generated from phase 1 and 2 were subsequently used for a modified Delphi survey of IBD health professionals. RESULTS: Five IBD-distress themes were identified: emotional distress; healthcare-related distress; interpersonal/social distress; treatment-related distress; and symptom-related distress. DISCUSSION: Disease-specific distress in IBD was identified and is distinct from stress, anxiety and depression. Some causes of IBD distress overlap with diabetes distress, but existing diabetes-distress scales do not explain all the distress experienced by people with IBD and development of a new IBD-distress scale is warranted.
Subject(s)
Anxiety/psychology , Cost of Illness , Depression/psychology , Inflammatory Bowel Diseases/psychology , Stress, Psychological/psychology , Adolescent , Adult , Aged , Aged, 80 and over , Female , Focus Groups , Humans , Male , Middle Aged , Qualitative Research , Young AdultABSTRACT
OBJECTIVE: This article reviews the logistics and safety of extracorporeal membrane oxygenation (ECMO) medical retrieval in New South Wales, Australia. METHODS: We describe the logistics involved in ECMO road and rotary-wing retrieval by a multidisciplinary team during the H1N1 influenza epidemic in winter 2009 (i.e., June 1 to August 31, 2009). Basic patient demographics and key retrieval time lines were analyzed. RESULTS: There were 17 patients retrieved on ECMO, with their ages ranging from 22 to 55 years. The median weight was 110 kg. Four critical events were recorded during retrieval, with no adverse outcomes. The retrieval distance varied from 20.8 to 430 km. There were delays in times from retrieval booking to both retrieval tasking and retrieval team departure in 88% of retrievals. The most common reasons cited were "patient not ready" 23.5% (4/17); "vehicle not available," 23.5% (4/17); and "complex retrieval," 41.2% (7/17). The median time (hours:minutes) from booking with the medical retrieval unit (MRU) to tasking was 4:35 (interquartile range [IQR] 3:27-6:15). The median time lag from tasking to departure was 1:00 (IQR 00:10-2:20). The median stabilization time was 1:30 (IQR 1:20-1:55). The median retrieval duration was 7:35 (IQR 5:50-10:15). CONCLUSION: The process of development of ECMO retrieval was enabled by the preexistence of a high-volume experienced medical retrieval service. Although ECMO retrieval is not a new concept, we describe an entire process for ECMO retrieval that we believe will benefit other retrieval service providers. The increased workload of ECMO retrieval during the swine flu pandemic has led to refinement in the system and process for the future.
Subject(s)
Air Ambulances , Critical Care/methods , Emergency Medical Services/methods , Extracorporeal Membrane Oxygenation/adverse effects , Influenza A Virus, H1N1 Subtype , Influenza, Human , Adult , Australia , Disease Outbreaks , Extracorporeal Membrane Oxygenation/methods , Extracorporeal Membrane Oxygenation/statistics & numerical data , Female , Humans , Male , Middle Aged , Organization and Administration , Patient Care Team , Retrospective Studies , Time Factors , Workload , Young AdultSubject(s)
Needs Assessment , Palliative Care/standards , Surveys and Questionnaires , Thoracic Neoplasms/therapy , Aged , England , Female , Humans , Male , Middle Aged , Patient SatisfactionABSTRACT
Helix Health PLLC is the first privately funded medical practice in the USA to combine genetic and genomic expertise with comprehensive risk assessment for all genetic and common chronic diseases. The company's goal is to introduce genetic and genomic healthcare to the mainstream. Using accepted and peer-reviewed models, the company is currently compiling data on its experience and plans to publish its outcomes in peer-reviewed scientific journals. Traditional genetic and medical services have significant limitations in both their continuity of care and scope, respectively. Helix Health overcomes these limitations and has multiple efforts underway to enlist traditional physician support for these revolutionary changes in healthcare.
