[How parents of adults persons with epilepsy do their best]. / Wie eltern erwachsener menschen mit epilepsie das beste aus ihrer situation machen--eine qualitative studie.

Epilepsy is a common and chronic disease which affects persons at every age. Even though medication can prevent seizures, epilepsy has implications for daily living. Sorrows, increased depression rates and restrictions in everyday life were documented among family caregivers of adult persons with epilpesy. To date, no study investigated how parents adapt to the epilepsy of adult children over time. The aim of this study was to explore experiences of parents of adult patients with epilepsy. Applying an interpretative phenomenological approach, narrative interviews with parents were reviewed to investigate parents' experiences. All parents described how they did their best to live with their situation. However, parents' experiences were distinctive and can be described as: "Being on the way together", "walking on a thightrope" and "struggling and caring all along". Using paradigm cases to describe what the epilepsy of their adult children ment to parents allowed to consider the context of these parents' experiences and enhanced understanding. As parents continue to support their adult children with epilepsy they should be included in specialist counselling and involved in care planning of their adult children.

Quality of life in adult patients with epilepsy and their family members.

PURPOSE: Epilepsy is not only a neurological disorder but may also have negative psychosocial consequences on people with epilepsy (PWE) and their relatives. Epilepsy has a major impact on quality of life (QoL) in PWE and family members. However, less is known about the impact of family support and family functioning on quality of life for PWE and family members and their interaction. Therefore, the study aimed to investigate factors that influence QoL in hospitalized adult patients with epilepsy and their relatives. METHOD: An explorative cross-sectional study has been conducted in a tertiary clinic in Switzerland. Hospitalized adult patients with epilepsy and their relatives were enrolled in the study. Subjective QoL as well as family support and family functioning were measured with patients and family members. Patients and their relatives assessed the patients' support need and their satisfaction with the care provided. In addition, patients were administered a disease-related HRQoL measure (QoLIED-36, Version 2). Backward stepwise multivariate linear regression analysis was used to explain variances in patients and relatives' subjective QoL. RESULTS: One hundred and four dyads of patient and family member participated. Subjective QoL in patients and family members differed significantly, as did satisfaction with care delivery. In both groups family support contributed significantly to QoL. In the models 40% of the variance in QoL in patients and relatives could be explained. While the quality of life of the family members was affected by the patients' knowledge about the disease and the reason for their current hospitalization, patient QoL scores had no influence on the QoL of family members. The patients' QoL, however, depended significantly on the QoL of the family members. CONCLUSION: Interventions should address both PWE and family members and focus on the self-care improvement of PWE and the well-being and coping of family members. A patient-centred approach needs to include both the PWE and the relatives and address family support in order to alleviate stress in the patients and relatives alike.

[Scope of practice of an Advanced Practice Nurse at the Swiss Epilepsy Centre]. / Praxistätigkeit einer Advanced Practice Nurse im Schweizerischen Epilepsie-Zentrum.

Epilepsy is, after stroke, the second most prevalent neurological disease. The disease has a manifold etiology and symptoms and hence treatment options. From the patients who seek treatment in epilepsy centres, some suffer from psychogenic, non-epileptic seizures. Patient with epileptic seizures have to integrate a medication regimen into their lives, accept symptoms and change their life style to seizure preventing habits. Patients with non-epileptic seizures need psychotherapeutic treatment. Care has to be offered over long periods of time and needs to be tailored to very diverse patients' and family situations. Nurses in this field need broad knowledge about the diseases and treatments as well as enhanced skills in counselling and caring for these patients. Therefore the Swiss Epilepsy Centre in Zurich hired an Advanced Practice Nurse (APN) to increase patients' satisfaction with care and enhance nurses' skills and knowledge. This article analyses the work content of the advanced practice nurse and describes first experiences one year after the implementation of an APN-role. The APN worked half of her time in direct patient and family care. The rest of her work load concerned practice development in coaching and educating the nursing staff, being involved in projects and collaborating with the head nurse on specific topics. In conclusion, implementation of an advanced practice nurse has been shown to be beneficial since patients' feedback were very positive and the increase in nurses' skills and competencies has been assessed as noticeable.

Prognostic value of cycle exercise testing prior to and after outpatient cardiac rehabilitation.

BACKGROUND: The prognostic value of cycle exercise testing prior to and after outpatient cardiac rehabilitation (OCR) is not well established. METHODS: 2146 consecutive patients undergoing symptom-limited cycle exercise testing at OCR entry, of whom 1853 (86%) also had a test at end of OCR, were followed for a median of 33 months. RESULTS: All-cause and cardiovascular annual mortality rates were 1.2% and 0.8%, respectively. At OCR entry, older age, diabetes, lower left ventricular ejection fraction (LVEF), calcium channel blocker use, and lower workload [hazard ratio (HR) 2.38 if < or = 105 W; p<0.001] were independent predictors of death. Diabetes, diuretic use, and lower workload [HR 3.53 if < or = 105 W; p=0.001] were independently associated with cardiovascular death. At end of OCR, older age, lower LVEF, lower workload (HR 2.34 if <140 W; p=0.009), and lower increase in peak heart rate from entry to end of OCR (HR 2.46 if <4 bpm; p=0.002) were independently associated with all-cause mortality. Older age, lower LVEF, lower increase in systolic blood pressure (HR 2.97 if <54 mm Hg; p=0.02), and lower increase in peak heart from entry to end of OCR (HR 2.72 if <4 bpm; p=0.013) were independently associated with cardiovascular mortality. Failure to undergo a test at end of OCR was an additional independent predictor of all-cause (HR 2.51; p<0.001) and cardiovascular mortality (HR 2.56; p=0.003). CONCLUSION: Symptom-limited cycle exercise testing prior to and after OCR provides important prognostic information.