Cross-cultural adaptation and psychometric validation of the Flodén ATODAI instrument in the North American context.

BACKGROUND: Intensive and critical-care nurses are the key to successful donor management in the critical-care setting. No studies measuring attitudes toward organ donor advocacy existed before 2011, when the 51-item Swedish "Attitudes Toward Organ Donor Advocacy Scale" was developed. The aim of this study was to translate, adapt and establish the psychometric properties of the North American version of the Flodén ATODAI (Attitudes Toward Organ Donor Advocacy Instrument) in terms of validity and reliability. METHODS: A multi-step approach was used: Initial translation; Back-translation; Review and synthesis of these translations; Expert panel (N = 7) rated the prefinal version of the instrument for content validity index (CVI); International panel made adjustments guided by the expert panel. Reliability testing with test and retest of the adjusted 46-item version was conducted using intraclass correlation coefficient (ICC), weighted kappa (Ò¡ Weight ), sign test, and Cronbach's alpha coefficient (α), (N = 50); and finally Delphi technique procedure with a preselected Delphi panel (N = 15). RESULTS: The CVI was determined to be greater than the 0.05 significance level. Item level (I-CVI) ranged 0.82-1.0, with a mean of 0.97. Scale level (S-CVI) on the entire instrument was 0.97. Test-retest procedure was performed to estimate stability. In total, 34 of the items had good-to-high ICC. Accepting an ICC of ≥ 0.70 resulted in a total of 24 items. Homogeneity reliability was estimated by α and was calculated for these items where α = 0.90. In total, 20 of the items had a substantial or almost perfect Ò¡ Weight and 23 showed a moderate Ò¡ Weight . None of the items showed systematical differences. The Delphi technique procedure was used on the 22 items with ICC < 0.70 resulted in adjustments establishing that consensus was achieved. CONCLUSIONS: Undertaking this multi-step, cross-cultural adaptation procedure has effectively ensured that the 46-item Flodén ATODAI [North American version] produces valid and reliable measurements.

Web-based self-management for patients with multiple sclerosis: a practical, randomized trial.

OBJECTIVE: No studies have addressed the use of electronic personal health records (e-PHRs) for self-management in complex neurological disorders. We assessed and tested an Internet-based self-management system that utilized the e-PHR and determined its impact on self-assessed well-being, clinician-assessed well-being, and healthcare utilization in patients with multiple sclerosis (MS). MATERIALS AND METHODS: Subjects were randomized to usual care (a secure Web-based messaging system) or active intervention, which included secure messaging, self-monitoring, self-management of MS symptoms, and communication about upcoming clinic visits. Computers and Internet access were provided. Subjects were included if they had MS, lived within the county or region surrounding our MS center, had at least two appointments at our center in the previous 12 months, and demonstrated basic typing and computer skills. Study duration was 12 months. RESULTS: Of 220 subjects completing informed consent, 206 met the inclusion criteria. At the study's end, 83 subjects remained in the usual care group and 84 in the enhanced care group. Both groups used the available system components. The groups did not significantly differ on the primary endpoints or healthcare utilization. CONCLUSIONS: Self-management support is an emerging aspect of chronic care management. We established the feasibility of conducting a randomized, controlled trial using e-PHRs for patient self-management. We did not find that e-PHR-enabled self-management augmented multidisciplinary MS center-based care, possibly because the differences between interventions were not great enough.

Variability in donation after cardiac death protocols: a national survey.

As donation after cardiac death practices expand, the number of institutional policies is increasing. We contacted organ procurement organizations throughout the United States and requested protocols in hospitals in their donor service areas. Sixty-four protocols were obtained with representation from 16 different states. The terminology and recommended practices varied substantially. The methods for death determination were not specified in 28 (44%) protocols. Most adhered to a 2- to 5-min observation time between circulatory arrest and organ procurement, but 10 (16%) provided no information. This variability reveals a need to define a uniform standard in donation after cardiac death protocols and death determination practices.

Variability in pediatric brain death determination and documentation in southern California.

OBJECTIVES: Because the concept of brain death is difficult to define and to apply, we hypothesized that significant variability exists in pediatric brain death determination and documentation. METHODS: Children (0-18 years of age) for whom death was determined with neurologic criteria between January 2000 and December 2004, in southern California, were included. Medical charts were reviewed for documented performance of 14 specific elements derived from the 1987 brain death guidelines and confirmatory testing. RESULTS: A total of 51.2% of children (142 of 277 children) referred to OneLegacy became organ donors. Care locations varied, including PICUs (68%), adult ICUs (29%), and other (3%). One patient was <7 days, 6 were 7 days to 2 months, 22 were 2 months to 1 year, and 113 were >1 year of age. The number of brain death examinations performed was 0 (4 patients), 2 (122 patients), 3 (14 patients), or 4 (2 patients). Recommended intervals between examinations were followed for 18% of patients >1 year of age and for no younger patients. A mean of only 5.5 of 14 examination elements were completed by neurologists and pediatric intensivists and 5.8 by neurosurgeons. No apnea testing was recorded in 60% of cases, and inadequate PaCO(2) increase occurred in more than one half. Cerebral blood flow determination was performed as a confirmatory test 74% of the time (83 of 112 cases), compared with 26% (29 of 112 cases) for electroencephalography alone. CONCLUSIONS: Children suffering brain death are cared for in various locations by a diverse group of specialists. Clinical practice varies greatly from established guidelines, and documentation is incomplete for most patients. Physicians rely on cerebral blood flow measurements more than electroencephalography for confirmatory testing. Codifying clinical and testing criteria into a checklist could lend uniformity and enhance the quality and rigor of this crucial determination.