Support values through the eyes of the patient: An exploratory study into long-term support of persons with refractory epilepsy.

A significant group of persons affected by refractory epilepsy require a wide range of long-term support from professionals as well as informal support givers. To enhance person-centeredness, it is important to know which patient values are associated with long-term support. An Internet survey produced a total of 1176 statements from 289 persons with epilepsy for analysis. Statements were expressed in the respondent's own words and were related to positive experiences (704) as well as possible areas of improvement (472) regarding the support received in the past six months. Thematic summaries of the survey results were presented to four focus groups of persons with epilepsy and proxies with a request to formulate the most important patient values which should be observed in long-term support. In iterative sessions with a panel of epilepsy experts, a framework of twelve value domains was formulated, organized in four major value clusters. An example of how these value domains can be operationalized for use in practice is next presented as a checklist to help evaluate the support patients with long-term support needs actually receive. Correspondingly, two sets of reflective questions were formulated for informal and professional support givers for the purpose of evaluating and improving person-centeredness in their support practices.

Dual-energy X-ray absorptiometry versus quantitative ultrasonography in diagnosing osteoporosis in patients with refractory epilepsy and chronic antiepileptic drug use.

BACKGROUND: The aim of this study was to assess the feasibility of calcaneal quantitative ultrasonography (QUS) as a screening method for increased risk of osteoporosis in a unique population of people with chronic epilepsy, intellectual disability (ID), and chronic use of antiepileptic drugs. METHODS: A total of 205 patients from a long-stay care facility for people with epilepsy underwent dual-energy X-ray absorptiometry (DXA) and QUS of the calcaneus. T-scores for both DXA and QUS were calculated and correlated. RESULTS: A total of 195 patients (95.1%) were successfully measured with DXA and 204 (99.5%) with QUS. High correlations were found between DXA and QUS T-scores: r = 0.666 (QUS versus T-score total femur), r = 0.631 (QUS versus T-score femur neck) and r = 0.485 (QUS versus T-score lumbar spine). All correlations were statistically significant (p = 0.01). CONCLUSION: QUS showed a strong correlation with DXA and proved to be a feasible measuring method in a population with ID and epilepsy. Including osteopenia in the screening process increases the sensitivity of QUS to identify those patients at risk for the development of bone diseases.