Patient-reported Outcomes: the ICHOM Standard Set for Inflammatory Bowel Disease in Real-life Practice Helps Quantify Deficits in Current Care.

BACKGROUND: Patient-reported outcome measures [PROMs] are key to documenting outcomes that matter most to patients and are increasingly important to commissioners of health care seeking value. We report the first series of the ICHOM Standard Set for Inflammatory Bowel Disease [IBD]. METHODS: Patients treated for ulcerative colitis [UC] or Crohn's disease [CD] in our centre were offered enrolment into the web-based TrueColours-IBD programme. Through this programme, e-mail prompts linking to validated questionnaires were sent for symptoms, quality of life, and ICHOM IBD outcomes. RESULTS: The first 1299 consecutive patients enrolled [779 UC, 520 CD] were studied with median 270 days of follow-up (interquartile range [IQR] 116, 504). 671 [52%] were female, mean age 42 years (standard deviation [sd] 16), mean body mass index [BMI] 26 [sd 5.3]. At registration, 483 [37%] were using advanced therapies. Median adherence to fortnightly quality of life reporting and quarterly outcomes was 100% [IQR 48, 100%] and 100% [IQR 75, 100%], respectively. In the previous 12 months, prednisolone use was reported by 229 [29%] patients with UC vs 81 [16%] with CD, p <0.001; 202 [16%] for <3 months; and 108 [8%] for >3 months. An IBD-related intervention was reported by 174 [13%] patients, and 80 [6%] reported an unplanned hospital admission. There were high rates of fatigue [50%] and mood disturbance [23%]. CONCLUSIONS: Outcomes reported by patients illustrate the scale of the therapeutic deficit in current care. Proof of principle is demonstrated that PROM data can be collected continuously with little burden on health care professionals. This may become a metric for quality improvement programmes or to compare outcomes.

Acute aortic dissection during pregnancy: Trials and tribulations.

BACKGROUND: Type A acute aortic dissection (TAAD) during pregnancy is a life-threatening event for both the mother and the unborn baby. Pregnancy has been recognized as an independent risk factor for TAAD, postulated to be due to physiological changes that cause hyperdynamic circulation. This review seeks to outline the current controversies around this unique group. METHODS: A comprehensive literature search was carried out across large databases to assimilate relevant papers regarding acute aortic dissection in pregnant women. RESULTS: The presentation can be atypical in many cases and further concern from clinicians of fetal radiation exposure can result in missed or delayed diagnoses. Investigation via the quickest form of imaging, whether computed tomography, magnetic resonance imaging, or transesophageal echocardiography, should be carried out promptly due to the high risk of mortality. Surgical management of TAAD in pregnancy revolves primarily around the decision to deliver the fetus concomitantly or to perform the aortic repair with the fetus in utero. CONCLUSIONS: Management of this group includes rapid and dynamic assessment without delay. From conception to postpartum, there are multiple stages in which to manage these women. Challenges in carrying out management in the form of operative techniques and cardiopulmonary bypass place the fetus at risk and must be approached with caution, particularly as there is little evidence-base for many of these decisions. Further research into reducing maternal and fetal mortality is necessary.

Development of a Clinical Decision Support System for Living Kidney Donor Assessment Based on National Guidelines.

BACKGROUND: Live donor nephrectomy is an operation that places the donor at risk of complications without the possibility of medical benefit. Rigorous donor selection and assessment is therefore essential to ensure minimization of risk and for this reason robust national guidelines exist. Previous studies have demonstrated poor adherence to donor guidelines. METHODS: We developed a clinical decision support system (CDSS), based on national living donor guidelines, to facilitate the identification of contraindications, additional investigations, special considerations, and the decision as to nephrectomy side in potential living donors. The CDSS was then tested with patient data from 45 potential kidney donors. RESULTS: The CDSS comprises 17 core tasks completed by either patient or nurse, and 17 optional tasks that are triggered by certain patient demographics or conditions. Decision rules were able to identify contraindications, additional investigations, special considerations, and predicted operation side in our patient cohort. Seventeen of 45 patients went on to donate a kidney, of whom 7 had major contraindications defined in the national guidelines, many of which were not identified by the clinical team. Only 43% of additional investigations recommended by national guidelines were completed, with the most frequently missed investigations being oral glucose tolerance testing and routine cancer screening. CONCLUSIONS: We have demonstrated the feasibility of turning a complex set of national guidelines into an easy-to-use machine-readable CDSS. Comparison with real-world decisions suggests that use of this CDSS may improve compliance with guidelines and informed consent tailored to individual patient risks.