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1.  What happens to patients with COPD with long-term oxygen treatment who receive mechanical ventilation for COPD exacerbation? A 1-year retrospective follow-up study 
Thorax  2014;70(3):294-296.
We performed a retrospective cohort study of patients with chronic obstructive lung disease (COPD) on long-term oxygen treatment (LTOT) who received invasive mechanical ventilation for COPD exacerbation. Of the 4791 patients, 23% died in the hospital, and 45% died in the subsequent 12 months. 67% of patients were readmitted at least once in the subsequent 12 months, and 26.8% were discharged to a nursing home or skilled nursing facility within 30 days. We conclude that these patients have high mortality rates, both in-hospital and in the 12 months postdischarge. If patients survive, many will be readmitted to the hospital and discharged to nursing home. These potential outcomes may support informed critical care decision making and more preference congruent care.
PMCID: PMC4345793  PMID: 24826845
COPD Exacerbations; Long Term Oxygen Therapy (LTOT)
2.  Using modeling to inform patient-centered care choices at the end of life 
Advance directives are often under-informed due to a lack of disease-specific prognostic information. Without well-informed advance directives patients may receive default care that is incongruent with their preferences. We aimed to further inform advance care planning in patients with severe chronic obstructive pulmonary disease by estimating outcomes with alternative advance directives.
We designed a Markov microsimulation model estimating outcomes for patients choosing between the Full Code advance directive (permitting invasive mechanical ventilation), and the Do Not Intubate directive (only permitting noninvasive ventilation).
Our model estimates Full Code patients have marginally increased one-year survival after admission for severe respiratory failure, but are more likely to be residing in a nursing home and have frequent rehospitalizations for respiratory failure.
Patients with severe chronic obstructive pulmonary disease may consider these potential tradeoffs between survival, rehospitalizations and institutionalization when making informed advance care plans and end-of-life decisions. We highlight outcomes research needs for variables most influential to the model’s outcomes, including the risk of complications of invasive mechanical ventilation and failing noninvasive mechanical ventilation.
PMCID: PMC3914667  PMID: 24236746
advance directives; chronic obstructive pulmonary disease decision modeling; end of life; informed decision-making; intensive care unit outcomes; prognostication
3.  Identifying design considerations for a shared decision aid for use at the point of outpatient clinical care: An ethnographic study at an inner city clinic 
Background and Objective
Computerized decision aids could facilitate shared decision-making at the point of outpatient clinical care. The objective of this study was to investigate whether a computerized shared decision aid would be feasible to implement in an inner-city clinic by evaluating the current practices in shared decision-making, clinicians’ use of computers, patient and clinicians’ attitudes and beliefs toward computerized decision aids, and the influence of time on shared decision-making.
Qualitative data analysis of observations and semi-structured interviews with patients and clinicians at an inner-city outpatient clinic.
The findings provided an exploratory look at the prevalence of shared decision-making and attitudes about health information technology and decision aids. A prominent barrier to clinicians engaging in shared decision-making was a lack of perceived patient understanding of medical information. Some patients preferred their clinicians make recommendations for them rather than engage in formal shared decision-making. Health information technology was an integral part of the clinic visit and welcomed by most clinicians and patients. Some patients expressed the desire to engage with health information technology such as viewing their medical information on the computer screen with their clinicians. All participants were receptive to the idea of a decision aid integrated within the clinic visit although some clinicians were concerned about the accuracy of prognostic estimates for complex medical problems.
We identified several important considerations for the design and implementation of a computerized decision aid including opportunities to: bridge clinician-patient communication about medical information while taking into account individual patients’ decision-making preferences, complement expert clinician judgment with prognostic estimates, take advantage of patient waiting times, and make tasks involved during the clinic visit more efficient. These findings should be incorporated into the design and implementation of a computerized shared decision aid at an inner-city hospital.
PMCID: PMC3991432  PMID: 24748995
Computerized decision aids; shared decision-making; health information technology; patient attitudes
4.  GEM at 10: A Decade’s Experience with the Guideline Elements Model 
The Guideline Elements Model (GEM) was developed in 2000 to organize the information contained in clinical practice guidelines using XML and to represent guideline content in a form that can be understood by human readers and processed by computers. In this work, we systematically reviewed the literature to better understand how GEM was being used, potential barriers to its use, and suggestions for improvement. Fifty external and twelve internally produced publications were identified and analyzed. GEM was used most commonly for modeling and ontology creation. Other investigators applied GEM for knowledge extraction and data mining, for clinical decision support for guideline generation. The GEM Cutter software—used to markup guidelines for translation into XML— has been downloaded 563 times since 2000. Although many investigators found GEM to be valuable, others critiqued its failure to clarify guideline semantics, difficulties in markup, and the fact that GEM files are not usually executable.
PMCID: PMC3243287  PMID: 22195106
5.  A theoretical decision model to help inform advance directive discussions for patients with COPD 
Advance directives (AD) may promote preference-concordant care yet are absent in many patients with Chronic Obstructive Pulmonary Disease (COPD). In order to begin to inform AD discussions between clinicians and COPD patients, we constructed a decision tree to estimate the impact of alternative AD decisions on both quality and quantity of life (quality adjusted life years, QALYs).
Two aspects of the AD were considered, Do Not Intubate (DNI; i.e., no invasive mechanical ventilation) and Full Code (i.e., may use invasive mechanical ventilation). Model parameters were based on published estimates. Our model follows hypothetical patients with COPD to evaluate the effect of underlying COPD severity and of hypothetical patient-specific preferences (about long-term institutionalization and complications from invasive mechanical ventilation) on the recommended AD.
Our theoretical model recommends endorsing the Full Code advance directive for patients who do not have strong preferences against having a potential complication from intubation (ETT complications) or being discharged to a long-term ECF. However, our model recommends endorsing the DNI advance directive for patients who do have strong preferences against having potential complications of intubation and are were willing to tradeoff substantial amounts of time alive to avoid ETT complications or permanent institutionalization. Our theoretical model also recommends endorsing the DNI advance directive for patients who have a higher probability of having complications from invasive ventilation (ETT).
Our model suggests that AD decisions are sensitive to patient preferences about long-term institutionalization and potential complications of therapy, particularly in patients with severe COPD. Future work will elicit actual patient preferences about complications of invasive mechanical ventilation, and incorporate our model into a clinical decision support to be used for actual COPD patients facing AD decisions.
PMCID: PMC3020153  PMID: 21172022

Results 1-5 (5)