Is it worth it, or possible, to measure what matters to patients with epilepsy and their caregivers?

OBJECTIVE: The objective of this study was to collect perspectives, ideas, and values of people affected by epilepsy and their carer to include them in new research in this area. DESIGN: This is a semiquantitative study analyzing needs, emotions, and medical issues emerging from focus groups with patients and carers divided in three severity levels of disease. PARTICIPANTS: The participants were 25 patients and 36 carers attending outpatients' service of tertiary epilepsy center in Umbria, Italy. RESULTS: Assistance was the need expressed by more than 40% of the participants followed by experience-sharing, knowledge, control, clarity, and security. The only significant effect in logistic regression analysis after adjusting for severity was the patients' expressed need for "experience-sharing" more than their carers (OR 7.29, 95%CI: 1.76-30.18). Hope was the emotion expressed by more than 50% of the participants, followed by anger, fear, and resignation. After adjusting for severity, carers were more likely to express anger, in comparison with patients (OR 17.23, 95%CI: 3.55-83.74; P<0.001). The patients were 6.88 times more likely (95%CI 1.84-25.75; P=0.004) to express "resignation" than their carers. The most frequent medical issues were related to: "medications", "frequency of crises", "work impact", "quality of life", "psychomedical integration of care", and "development of new drugs". After adjusting for severity in a logistic regression analysis, patients were more likely to express concerns for the frequency of crises than carers (OR 3.57, 95%CI: 1.16-11.04; P=0.027). CONCLUSIONS: Patients' and carers' priorities, based on intense personal insight, represent a starting point to work for shared outcome measures in clinical trials and shared agenda in research, including research of strong evidence in complex intervention as service models for people with epilepsy.

Impairment of homonymous processing in Alzheimer's disease.

An important issue in research on language is how concepts are represented and associated with each other in the brain. Many investigations have focused on language ambiguity and the phenomenon of homonymy in which a single lexical item, presenting the same form, is related to different meanings. Our study aims to test the hypothesis that weak association of meaning characterizing homonyms may be especially prone to brain damage. To verify this hypothesis a test of attribution of the meaning of homonymous words, the Humpty Dumpty (HD) test, was applied to 50 patients with Alzheimer's disease (AD) and 50 healthy subjects. Results show that AD patients are impaired in the HD test in an early phase of disease and that performance correlates with naming ability and phonological fluency. The data are in keeping with a growing body of literature that supports dual impairment to the semantic system in AD, i.e., to semantic knowledge and active processing and access to the semantic field. The evaluation of the ability to resolve homonymous ambiguity, using the HD test, may provide a useful and quick clinical tool to detect the anomalies of the semantic network linked to either a loss of the core system where meaning of words is stored or an impairment of the access to an intact semantic representation.

Depression, hopelessness and suicide risk among patients suffering from epilepsy.

Suicide risk, as well as psychiatric disorder, has been repeatedly reported in the international literature as an important issue in the care of individuals suffering from epilepsy. In this pilot study a sample comprising 103 patients with a diagnosis of temporal lobe epilepsy, were collected from three clinics. The patients were administered the Beck hopelessness scale (BHS), the Beck depression inventory (BDI) and the Zung self-rating anxiety scale (SAS). Hopelessness has been identified as a construct linked to the prediction and the prevention of suicide. Twenty-six percent of the epileptic patients had scores>or=9 on the BHS, suggesting that they should be evaluated for suicidal inclinations. These patients were significantly older by about 9 years and had higher levels of depression and anxiety, but they did not differ in sex, age of onset of epilepsy or in their responsiveness to medication. In the logistic regression analysis, a hopelessness score>or=9 was predicted by BDI depression scores and SAS anxiety scores taking into account sex, age and response to epileptic medications. Despite a number of limitations, this pilot study adds support for the need for screening for suicide risk in patients with epilepsy. Both clinical and psychometric data should be part of the evaluation of the epileptic patient for psychiatric and suicidality assessment.