[Palliative home care of children: an opinion survey of orphaned parents]. / Häusliche Palliativversorgung von Kindern: Eine Meinungsumfrage bei verwaisten Eltern nach unheilbarer onkologischer Erkrankung.

INTRODUCTION: In Germany, 500 children die of malignancies per year. Many families wish to be cared for in a home setting at the end-of-life. METHODS: Families of children who were cared for by the paediatric palliative care team (PPCT) in a home setting between 01.02.2003 to 30.09.2009 were included in the survey. The questionnaire consisted of 87 items with nominal scaled variables and numeric rating scales (NRS; 1-4, lowest to highest satisfaction) as response options. RESULTS: 84 relatives of 49 children participated (response rate 53.2%). Duration of care varied between 3-246 days. All 49 patients died at home. 98.8% of the respondents were satisfied with their decision for home care. The symptoms pain (86.9%) and fatigue (85.7%) were reported most frequently. Satisfaction with symptom control was high (NRS 3.55±0.49). The respondents were satisfied with communication (NRS 3.73±0.57) and end-of-life care (NRS 3.85±0.90). Satisfaction with psychosocial care (NRS 3.24±0.87) was significantly lower (p<0.05). Parents who stayed in contact with the PPCT by phone and in person were more satisfied with aftercare. DISCUSSION: From parental view satisfying home-care of children with cancer is feasible. Symptom control succeeds in a home setting.

WHODAS II with people after stroke and their relatives.

PURPOSE: The present study aimed to measure the internal consistency, inter-rater-reliability and validity of the World Health Organisation Disability Assessment Schedule II (WHODAS II) for its application to stroke patients and their closest others. METHOD: Patients were assessed 6 months and 1 year after stroke with the self- and proxy-rating versions of the WHODAS II. The modified Rankin Scale (mRS) as well as patients' statements about 'Recovery' and 'Independence' were used as measurements for validity. Patients' statements concerning individual restrictions and limitations were compared with the WHODAS II items. RESULTS: Internal consistency can be regarded as good to excellent, inter-rater-reliability as satisfactory to good. Item reliability ranged from insufficient to good, the percentage of agreements was below 80%. WHODAS II scale scores of patients with an mRS score of 0 as well as of recovered and independent patients differed significantly from others. Correlation coefficients between WHODAS II Scales and validation measures ranged from fair to high. Correspondence between stroke related problems and WHODAS II items was good. CONCLUSION: The WHODAS II is a valid, generally reliable and useful instrument for the assessment of stroke patients over the first year after stroke.

[Knowledge of support and aid after first stroke]. / Kenntnis von Unterstützungsangeboten nach erstem Schlaganfall.

BACKGROUND: The literature predicts a considerable demand of support and aid for stroke patients and their caregivers. It is not known to what extent existing resources are used by these groups. PURPOSE: The present study aimed at a survey of knowledge of and acquaintance with institutions and organizations offering support after stroke and actual use of these resources. METHODS: Six and twelve months after stroke, 84 patients and their nearest others were questioned concerning their acquaintance with and use of professional and institutional resources for support and also with respect to social support and self-efficacy. RESULTS: Six and twelve months after stroke, actual use of the various resources for support varied between 0 and 13%. Only part of the patients (11-65%) and relatives (up to 78%) knew about the professional and institutional resource available. DISCUSSION: Information about resources for support after stroke is unsatisfactory and should be established at a point in the delivery of care chain where all those affected by stroke and their caregivers are accessed.

[Use of the WHODAS II with stroke patients and their relatives: reliability and inter-rater-reliability]. / Der WHODAS II in der Anwendung bei Schlaganfallpatienten und ihren Angehörigen: Reliabilität und Inter-Rater-Reliabilität.

The WHODAS II (World Health Organization Disability Assessment Schedule II) is a questionnaire derived from the ICF classification system (International Classification of Functioning, Disability and Health) for the evaluation of disabilities and handicaps. Data on its validity and reliability with respect to the consequences of stroke are largely lacking. The present study aimed at measurements of reliability of the WHODAS II in its application to stroke patients and their closest others. Eighty-four patient-relative pairs were assessed six months after stroke with the self- and observer-rating versions. From the patients' and relatives' judgements, Cronbach's alpha was computed as measurement of internal consistency, intra-class correlation coefficients as measurements of the inter-rater reliability of subscales and total scores, and Spearman's rho (rho) for the inter-rater reliability for single items. In addition, the inter-rater correspondence was calculated as the percentage of responses. The internal consistency was found to be good to excellent (alpha=0.81-0.99) both for patients' and relatives' judgements. Inter-rater reliabilities ranged from satisfactory for the subscale Understanding and Communication to excellent for the total score (ICC 0.64-0.94). However, the inter-rater reliability of the items as well as their percental correspondence was hardly satisfactory, with few exceptions in the realms of Life Activities and Self-Care (rho=0.24-0.90 and percental correspondence 29.6%-75.7%). Our results demonstrate that the WHODAS II is a reliable instrument for the assessment of stroke patients, both as a self- and an observer-rating questionnaire. Whereas the correspondence between patient and relative may be disparate with respect to single items - especially those not directly observable -, subscale and total scores seem to allow predictions based on observer judgements. The assessment of stroke patients' disabilities and handicaps through relatives' judgements with the WHODAS II scales is reliable.

Prognosis and prognostic factors in ADL-dependent stroke patients during their first in-patient rehabilitation--a prospective multicentre study.

PURPOSE: This prospective longitudinal study aimed at a description of ADL-functioning and at an analysis, which clinical instruments predict independency 6 months after discharge from in-patient rehabilitation following disabling first stroke. METHOD: A total of 147 patients with disabling first stroke were recruited from three neurological rehabilitation centres. They were assessed during their first in-patient rehabilitation with the NIH Stroke Scale, Hemispheric Stroke Scale (HSS), Activity Index, Barthel Index, Neurobehavioural Rating Scale, Cornell Depression Scale, and the prognostic prediction of the rehabilitation neurologist. The 6 months outcome was established with the Nottingham Extended ADL Scale (NEADL) and by the legal dependency status. RESULTS: The best prediction of 6 months outcome as measured by the NEADL was obtained by the HSS and a multivariate model that also included the physician's prognostic prediction, both early in rehabilitation and at discharge. The dependency status was best predicted by the HSS and patient's sex. CONCLUSION: Clinical scales performed during rehabilitation such as the HSS are valid for prediction of ADL-dependency 6 months after discharge.

A longitudinal study of health-related quality of life of first stroke survivors' close relatives.

BACKGROUND AND PURPOSE: Mental and social burdens of stroke patients' relatives have been investigated repeatedly, but there is little information about their quality of life (QoL). The purpose of the study was to describe the health-related QoL of stroke patients' relatives at 3 points in time after the stroke. METHOD: Sixty-four closest relatives of patients suffering from a disabling stroke were questioned at admission to inpatient rehabilitation as well as 6 months and 1 year after discharge with the SF36 (short form 36-item questionnaire) and about probable covariates. RESULTS: During inpatient rehabilitation relatives' perception of their physical role as well as of all mental health scales was significantly lower than the normative data. We found improvements in all scales except physical functioning between inpatient rehabilitation and 6 months after discharge. Deteriorations between 6 months and 1 year occurred in physical functioning, role physical, social functioning, role emotional and mental health. CONCLUSIONS: Changes in perceived health-related QoL indicate that relatives go through different stages while coping with the chronic illness of their family member during rehabilitation and in the first year after discharge. These findings may aid support and counseling.

[Inter-rater reliability of the Barthel Index, the Activity Index, and the Nottingham Extended Activities of Daily Living: The use of ADL instruments in stroke rehabilitation by medical and non medical personnel]. / Inter-Rater-Reliabilität des Barthel-Index, Activity-Index und Nottingham Extended Activities of Daily Living: Die Anwendung von ADL-Instrumenten in der Schlaganfallrehabilitation durch Mediziner und Nichtmediziner.

This investigation addressed the question whether non-medical personnel could produce similar ratings to physicians when applying ADL scales. A sports scientist was trained in the assessment of stroke patients with the Barthel Index, the Activity Index and the Nottingham Extended Activities of Daily Living Scale. He and a rehabilitation physician assessed 20 stroke patients in first in-patient rehabilitation with these instruments. Measurements of inter-rater reliability were calculated for scores, subscales and single items, and for the latter also rater correspondence. Inter-rater reliability was good to excellent for all scores and subscales (ICC: 0.82-0.99). Reliability and correspondence was good to excellent for the items of the Barthel Scale, satisfactory to excellent for those of the Activity Index. Some 25 % of the items of the Nottingham Extended Activities of Daily Living revealed unsatisfactory reliability but still high inter-rater correspondence. Results indicate that physicians and non-medical personnel are able to apply these scales reliably to stroke patients.

[Results of in- vs outpatient post-stroke rehabilitation over 6 months]. / Ergebnisse der ambulanten und stationären Rehabilitation in den ersten sechs Monaten nach Schlaganfall.

In a prospective longitudinal study, stroke patients with largely intact ADL-functions who were treated in a rehabilitation center were assessed at the beginning and end of rehabilitation treatment and 6 months afterwards. They were treated as outpatients, if they expressed a preference for this setting and if outpatient rehabilitation was logistically and geographically possible, otherwise as inpatients. We found medium- to large-size gains for physical and ADL function and associated quality-of-life dimensions (WHOQOL-BREF, SF-36). However, there were also losses in other aspects of quality of life, e. g. in the social domain. There were no differences with respect to type of setting. Patients' setting preferences influenced the development of perception of own health. There was only a small and insignificant influence of satisfaction with rehabilitation treatment. We propose an expansion of neurological outpatient rehabilitation services and a focus on factors outside the rehabilitation system that influence quality of life.

A comparison of carvedilol with a combination of propranolol and isosorbide dinitrate in the chronic treatment of stable angina.

The beta-blocking and vasodilating agent carvedilol was compared with a combination of propranolol and isosorbide dinitrate (ISDN) in a double-blind, parallel-group study. After two baseline sitting bicycle exercise tests on placebo, 31 patients with chronic stable angina were asymmetrically randomized to treatment with carvedilol (25 mg b.i.d.) or propranolol-ISDN (80 mg/20 mg b.i.d.) for a period of 6 months. Further exercise tests were performed 2 h after the first dose as well as after 1, 3, and 6 months of treatment. Twenty-seven patients were considered evaluable for efficacy. Differences between the two groups were observed with emphasis on total exercise time and time to 1-mm ST-segment depression. In contrast to a greater peak effect of the first propranolol/ISDN dose, the chronic antianginal and anti-ischemic effects of carvedilol at trough were found to be more marked than those of the combination.

[Diagnosis of hemophilia and von Willebrand-Jürgens syndrome. 3. Results of studies on patients with vWJS, heterozygotes of vWJS and patients with Glanzmann-Naegeli thrombasthenia]. / Zur Diagnostik der Hämophilie und des von Willebrand-Jürgens-Syndroms (vWJS). 3. Mitteilung: Untersuchungsergebnisse bei Patienten mit vWJS, Merkmalsträgern eines vWJS und Patienten mit Thrombasthenie Glanzmann-Naegeli.

By means of genealogical and laboratory-diagnostic examinations in the district of Magdeburg 59 patients with a von-Willebrand-Jürgens-syndrome and 2 patients with thrombasthenia were detected. On the basis of the laboratory data and the severity of the inclination to haemorrhage in patients with von-Willebrand-Jürgens-syndrome a subdivision into type I (severe from), type I (easy form) and type II was made. The diagnosis was rendered difficult by the appearance of clinically asymptomatic carriers of signs. The experiences hitherto made in the dispensary care and the use of the laboratory programme are estimated.

[Diagnosis of hemophilia and von Willebrand-Jürgens syndrome. 1. Organization of a dispensary for patients with hemorrhagic diatheses and a laboratory program]. / Zur Diagnostik der Hämophilie und des von Willebrand-Jürgens-Syndroms. 1. Mitteilung: Aufbau eines Dispensaires für Patienten mit hämorrhagischen Diathesen und Laborprogramm.

Tasks and organisation of a dispensary for patients with hereditary haemorrhagic diatheses are explained. A laboratory programme which was used for the diagnostics of these diseases, particularly of haemophilia and von Willebrand-Jürgens syndrome, is demonstrated.

[Diagnosis of hemophilia and Willebrand-Jürgens syndrome. 2. Results of studies in hemophilia patients and hemophilia carriers]. / Zur Diagnostik der Hämophilie und des von Willebrand-Jürgens-Syndrom. 2. Mitteilung: Untersuchungsergebnisse bei Patienten mit Hämophilie und bei Hämophiliekonduktorinnen.

By genealogic and laboratory-diagnostic investigations in the county of Magdeburg 79 patients with haemophilia A and 23 patients with haemophilia B were established. Characteristic coagulation-analytic findings in patients without and with additional thrombocytic functional disturbances are shown. In female conductors of haemophilia A the reliability in the diagnostics could be increased with the help of the discriminance analysis by combination of the genealogic tree information with the coagulation-analytic findings.

[Circadian behavior of the fibrinogen concentration in the plasma]. / Zirkadianes Verhalten der Fibrinogenkonzentrationen im Plasma.

The concentration of the fibrinogen in the plasmas was determined in the course of a day (circadian rhythm) as well as in different position of the body. During the night hours a concentration minimum existed at 24.00 o'clock or at 4.00 o'clock, which however, could not be explained by the position of the body alone, which had changed in comparison to day-time. The time of the blood-taking and the position of the body must be taken into consideration in the interpretation of the laboratory values.

[Monitoring of heparin therapy with activated recalcification time]. / Uberwachung der Heparintherapie mit der aktivierten Rekalzifizierungszeit.

In in-vivo- and in-vitro-examinations the activated recalcification time, the recalcification time of the plasma, the partial thromboplastin time and the thrombin time were compared concerning their suitability for the control of a heparin therapy. The laboratory methods tested considerably differed in their sensitivity compared with heparin and in the possibility of a quantitative statement. The use of a certain laboratory method depends on the indication for a heparin therapy and on the heparin concentration in the blood to be expected. While thrombin time, recalcification time of the plasma and the partial thromboplastin time are suited only for the proof of lower heparin concentrations, the activated recalcification time allows also the proof of higher heparin concentrations in the blood.

[A suggestion for the uniform laboratory diagnosis of hemophilia]. / Ein Vorschlag zur einheitlichen Labordiagnostik der Hämophilie.

The laboratory diagnosis of the haemophilia is performed in a different way in the individual laboratories. Differences in the selection and the performance of the methods used render differences in evidence, comparability and expenditure of time. The following proposition for a unitary laboratory diagnostics of haemophilia is made: 1. performance of a basic programme, 2. localisation of the coagulation defect with the help of the PTT using correction plasmas, 3. quantitative estimation of factors (possibly inhibitors) after one-step method, in which cases usual test sets of instruments with standardized directive for the performance are prerequisite for comparable results and a subdivision in degrees of severity.

[Determination of coagulation factor VIII inhibitors]. / Untersuchungen zur Bestimmung des Gerinnungsfaktor VIII-Inhibitors.

Factor VIII inhibitors represent a severe complication of the haemophilia A. Different methodical approach in the diagnostics of the laboratory and various definitions of the inhibitor unit render difficult the comparability of the results of examination. Methods for the unitary performance of the qualitative proof of inhibitors and the quantitative estimation of inhibitors are described and their application in the examination of two patients with factor VIII inhibitors are shown.