The Dysphagia Handicap Index: Development and Validation

Quality-of-life indicators for dysphagia provide invaluable information to the treating clinician regarding the success or failure of swallowing therapy. The purpose of this study was to develop a clinically efficient, statistically robust patient-reported outcomes tool that measures the handicapping effect of dysphagia on emotional, functional, and physical aspects of individual’s lives. 60 statements describing the handicapping effect of dysphagia were collected from patient reports and divided into subscales of physical, emotional, and functional problems. The statements were presented to 77 individuals with dysphagia. Respondents replied never, sometimes, or always to each statement and rated their self-perceived dysphagia severity on a 7-point equal-appearing interval scale. Cronbach’s α was performed to assess the internal consistency validation of the items within the questionnaire. The final questionnaire was reduced to 25 items and administered to 214 individuals with dysphagia and 74 controls. Test–retest was performed on 63 individuals with dysphagia. Cronbach’s α for the initial and final versions was strong at r = 0.96 and r = 0.94, respectively. Significant differences occurred between the dysphagia and control groups. Test–retest reliability was strong. We present a new, easy-to-complete, statistically robust, patient-reported outcomes measure for assessing the handicapping effect of dysphagia.     

Thromboembolic disease involving the superior vena cava and brachiocephalic veins

PURPOSE: To evaluate the frequency of diagnosis and the characteristics of brachiocephalic vein and superior vena cava (SVC) thromboembolic disease. BACKGROUND: Thromboembolic disease of the brachiocephalic veins or SVC rarely has been reported. In view of the frequent use of central venous access lines, it would seem that the percentage of hospitalized patients with thromboembolic disease of the brachiocephalic veins or SVC should be higher than is generally recognized. METHODS: A retrospective search for thromboembolic disease involving the brachiocephalic veins and SVC was made of patients who were hospitalized over a 2-year period. RESULTS: Thromboembolic disease of the brachiocephalic veins or SVC was diagnosed in 23 of 34,567 hospitalized adults (0.06%) who were > or = 20 years old. Two of 23 patients (8.7%) had pulmonary embolism. Cancer was present in 17 of 23 patients (74%), and 15 of 23 patients (65%) had central venous access lines. Edema of the arm, face, or neck was present in 21 of 23 patients (91%). Pain or discomfort was present 15 of 23 patients (65%). CONCLUSION: Isolated brachiocephalic vein and SVC thrombosis occur in a sufficient number of hospitalized patients to merit consideration of the diagnosis in patients who have cancer, central venous access lines, or both. The signs and symptoms of brachiocephalic vein thrombosis have features in common with SVC syndrome as well as with upper extremity deep venous thrombosis. In a patient with appropriate clinical findings, venography or other imaging may be indicated.     

Upper extremity deep venous thrombosis

PURPOSE: To determine the prevalence of symptomatic upper extremity deep venous thrombosis (DVT) and its association with symptomatic acute pulmonary embolism (PE) in a community teaching hospital. METHODS: The prevalence of symptomatic upper extremity DVT was evaluated retrospectively at a community teaching hospital during the 2-year period between July 1, 1998, and June 30, 2000. Patients were identified by International Classification of Disease, ninth revision, clinical modification, discharge codes and a review of the records of all compression Doppler ultrasonograms, venograms of the upper extremities, and magnetic resonance angiograms of the upper extremities. RESULTS: Symptomatic upper extremity DVT was diagnosed in 65 of 44,136 patients of all ages (0.15%) [or 64 of 34,567 adult patients >or= 20 years of age; 0.19%]. In seven patients, the upper extremity DVT was shown by venography to extend proximally to the brachiocephalic vein. Among these, the DVT extended to the superior vena cava in two. All of the patients received anticoagulant therapy for upper extremity DVT. No patients developed symptomatic PE. Central lines at the site of the upper extremity DVT were inserted in 39 of 65 patients (60%). Cancer was diagnosed in 30 of 65 patients (46%), 23 cancer patients also had central lines, and 19 patients (29%) had upper extremity DVT with no apparent cause. All patients had swelling of the upper extremities. Erythema over the affected site was present in four patients (6%). Pain was present in 26 patients (40%), although some discomfort due to swelling was present in all patients. CONCLUSION: Symptomatic upper extremity DVT is not uncommon in hospitalized patients. Symptomatic PE resulting from upper extremity DVT was not observed in these patients, all of whom were treated with anticoagulants.     

Patient Engagement in Neurological Clinical Trials Design: A Conference Summary

Objectives

The conference objectives included educating patients and advocates about clinical trials, educating the clinical research community about patient perspectives on participating in clinical trial design, and identifying strategies to increase participation in clinical trial design for neurological disorders.

Design

Observations were noted during a 1‐day conference attended by patients, patient advocates, clinical trial staff, and investigators. The conference offered didactic sessions, small, and large group discussions.

Participants

Conference participants were patients, patient advocates, clinical trial staff, students, and investigators interested in engaging patients in clinical trial design for neurological disorders.

Measures

Conference participants were asked to consider lessons learned that could increase patient engagement in clinical trial design.

Results

We found that there is growing interest in including patients in the design of clinical trials for neurological disorders. Several themes emerged on how to move forward: networking; the multifaceted roles of advocates in research; training and education; creating patient–researcher partnerships; and clinical trials regulation issues.

Conclusions

The conference provided a forum for dialogue regarding stakeholder engagement in the design of clinical trials for neurological disorders. This experience provides a template for replication and dissemination of this conference and informs next steps to accelerate the pathway from dialogue to action.     

Evaluation, treatment, and follow-up results of post polio patients with dysphagia

Twenty consecutive patients were evaluated for reports of dysphagia from post-polio clinics. Only half the patients reported a history of swallowing problems at the time of their acute poliomyelitis. Each patient received a videofluorographic evaluation of the oral and pharyngeal phases of swallowing, and then was provided with recommendations to improve swallowing skills. A follow-up questionnaire was sent to all patients. The respondents had an average interval of 12 months since the initial evaluation. Of the 18 patients responding to the questionnaire, 14 (77%) reported regular use of the swallowing suggestions. Comparison of pre-evaluation results to followup of the 18 respondents yielded a statistically significant decline in the frequency of choking (p = 0.0156) and food sticking in the throat (p = 0.0195). We conclude that a dysphagia program can result in significant improvement of the swallowing symptoms reported with the post-polio population.     

Public health impact of full implementation of therapeutic hypothermia after cardiac arrest

AIM: Induced hypothermia improves outcomes in patients resuscitated successfully after cardiac arrest due to ventricular fibrillation. However, a minority of US physicians currently use the therapy. The aim of this study was to project the public health impact of implementing hypothermia in all eligible US out-of-hospital cardiac arrest (OHCA) survivors. METHODS: The number of OHCA patients expected to have a good outcome after hypothermia was calculated using a linear model. Literature-derived input variables included OHCA incidence rates and US 2000 census data, percent with return to spontaneous circulation (ROSC), percent eligible for hypothermia, and the expected benefit from hypothermia. Sensitivity analyses were performed to calculate a plausible range around the reference case. RESULTS: An additional 2298 US patients per year are expected to have a good neurological outcome if US physicians implement hypothermia fully in comatose survivors of OHCA. The two-way sensitivity analyses found that this number ranged from 766 to 5171 patients. This model is similarly sensitive to varying the incidence of OHCA, percent with ROSC, percent of patients eligible for hypothermia, and the number needed to treat. CONCLUSIONS: If US physicians adopt therapeutic hypothermia fully in eligible patients with OHCA, 2298 additional patients per year would be expected to achieve a good neurological outcome, a substantial public health impact. Barriers to adoption should be researched and addressed to increase acceptance and use by US physicians.     

Emergency Neurological Life Support: Status Epilepticus

Patients with prolonged or rapidly recurring convulsions lasting more than 5 min are in status epilepticus (SE) and require immediate resuscitation. Although there are relatively few randomized clinical trials, available evidence and experience suggest that early and aggressive treatment of SE improves patient outcomes, for which reason this was chosen as an Emergency Neurological Life Support protocol. The current approach to the emergency treatment of SE emphasizes rapid initiation of adequate doses of first-line therapy, as well as accelerated second-line anticonvulsant drugs and induced coma when these fail, coupled with admission to a unit capable of neurological critical care and electroencephalography monitoring. This protocol will focus on the initial treatment of SE but also review subsequent steps in the protocol once the patient is hospitalized.     

Neuroprotection in acute brain injury: an up-to-date review

Neuroprotective strategies that limit secondary tissue loss and/or improve functional outcomes have been identified in multiple animal models of ischemic, hemorrhagic, traumatic and nontraumatic cerebral lesions. However, use of these potential interventions in human randomized controlled studies has generally given disappointing results. In this paper, we summarize the current status in terms of neuroprotective strategies, both in the immediate and later stages of acute brain injury in adults. We also review potential new strategies and highlight areas for future research.