Worsening of quality of life after epilepsy surgery: effect of seizures and memory decline.

BACKGROUND: Surgery for intractable temporal lobe epilepsy usually controls seizures and improves health-related quality of life (HRQOL), but some patients experience continued seizures, memory decline, or both. The relative impact of these unfavorable outcomes on HRQOL has not been described. METHODS: We studied seizure control, memory change, and HRQOL among 138 patients in the Multicenter Study of Epilepsy Surgery (MSES), an ongoing, prospective study of epilepsy surgery outcomes. Seizure remission at 2 years and 5 years was prospectively determined based upon regularly scheduled follow-up calls to study patients throughout the follow-up period. HRQOL was assessed annually using the Quality of Life in Epilepsy Inventory (QOLIE-89). Memory decline was determined by change in verbal delayed recall from baseline to the 2- or 5-year follow-up. RESULTS: HRQOL improved in patients who were in remission at the 2-year or 5-year follow-up, regardless of memory outcome. Among those not in remission at both 2 and 5 years (25/138, 18%), HRQOL remained stable when memory did not decline (14/138, 10%), but HRQOL declined when memory did decline (11/138, 8%). These 11 patients had baseline characteristics predictive of poor seizure or memory outcome. Declines were most apparent on HRQOL subscales assessing memory, role limitations, and limitations in work, driving, and social activities. CONCLUSIONS: After temporal resection, health-related quality of life (HRQOL) improves or remains stable in seizure-free patients despite memory decline, but HRQOL declines when persistent seizures are accompanied by memory decline. These results may be useful in presurgical counseling and identifying patients at risk for poor psychosocial outcome following surgery.

The comprehensive assessment of defense style: measuring defense mechanisms in children and adolescents.

This study introduces the Comprehensive Assessment of Defense Style (CADS), a new method to assess descriptively the defensive behavior of children and adolescents. Parents of 124 children and adolescents referred to a mental health clinic, of 104 nontreated children, and of 15 children whose fathers were treated for posttraumatic stress disorder completed the CADS. Factor analysis of 28 defenses yielded one mature factor, one immature factor of defenses expressed in relations with the environment (other-oriented), and one of defenses expressed in relations with the self (self-oriented). The CADS significantly discriminated between patients and nonpatients. Psychiatric patients used more immature and fewer mature defenses than control subjects, and adolescents used more mature and fewer other-oriented defenses than children. Girls used more mature and fewer other-oriented defenses than boys. The reliability and validity data of the CADS are encouraging. The three defense factors may be implemented for diagnostic and clinical purposes as well as for screening for psychopathology risk in untreated populations.

Validation of the Comprehensive Assessment of Defense Style (CADS): mothers' and children's responses to the stresses of missile attacks.

This study furthers the validation of the Comprehensive Assessment of Defense Style (CADS) as a measure of children's defensive behavior. Participants were 81 mothers who assessed the defense style (CADS) of their 8- to 10-year-old children, as well as their own defense style and level of object relations. Five years earlier, the mothers had rated their children's symptom level and personality after the missile attacks during the Gulf War. The original factor structure of the CADS was replicated for the most part. Self-oriented and other-oriented defenses were related to the children's early personality and symptomatic reaction, as well as to their mother's defense style and level of object relations. The CADS factors correlated with the defenses of the Defense Mechanisms Manual. The results provide further validation of the CADS and suggest possible areas of implementation, such as longitudinal examination of defenses, psychopathology screening, and therapeutic improvement.

Assessment of reliability in the clinical evaluation of depressive symptoms among multiple investigators in a multicenter clinical trial.

The objective of this work was to determine the severity of depressive symptoms when multiple clinical examiners evaluate a single subject, as preparatory to their participation as evaluators in a clinical trial. Using the 17-item Hamilton Depression Rating Scale (HDRS), 37 psychiatrists independently assessed the videotape of a patient with symptoms of depression. A new measure for the detection of multiple examiners not in consensus (DOMENIC) was used to identify scale items with low reliability and raters with low inter-rater reliability, from among the remaining raters. Overall inter-rater agreement on the full HDRS was 'excellent' (97%). All raters but one showed adequate agreement both on individual items and on total scores. Two of the 17 HDRS symptomatology items had unacceptable levels of inter-rater scoring variability (<70% agreement). The use of DOMENIC allows for the detection of items of low inter-rater reliability and identification of raters that deviate from the group's ratings prior to the beginning of a clinical trial.

Nurses' use of palliative care practices in the acute care setting.

This study examines the reported use of palliative care practices by nurses caring for terminally ill patients in the acute care setting. Randomly selected nurses (n = 180) from six randomly selected hospitals in Connecticut completed a self-administered questionnaire. Factors associated with use of palliative care practices were examined by using bivariate and multivariate analyses. Most nurses surveyed (88.5%) reported using palliative care practices when caring for their terminally ill patients. Factors associated with greater use included greater knowledge about hospice, having practiced nursing for less than 10 years, and having had hospice training in the past 5 years. A substantial proportion of nurses reported that they never discuss hospice (51.7 per cent of nurses) and prognosis (26.6 per cent of nurses) with their terminally ill patients. Educational preparation (bachelor's degree versus less education) was not associated with greater use of palliative care practices. Palliative care practices are commonly used by nurses in the acute care setting. However, many report having limited training and substantial gaps in knowledge about hospice among this group of nurses, suggesting greater attention to palliative care and hospice may be warranted in nursing educational programs.

Attitudes about care at the end of life among clinicians: a quick, reliable, and valid assessment instrument.

Several initiatives to improve care at the end of life involve educational programs to influence clinicians' attitudes about care for patients with terminal illnesses. The objective of this research was to develop and test a short and easily administered instrument for measuring physicians' and nurses' attitudes towards care at the end of life. The instrument was tested using a cross-sectional study of 50 clinicians (25 physicians and 25 nurses) from general medicine, cardiology, oncology, and geriatric medicine. Both reliability and validity were assessed, and the instrument was found to have acceptable test-retest reliability and construct validity. Such an assessment instrument may be useful in evaluating the impact of initiatives to modify attitudes towards terminal care and in improving the quality of care at the end of life.

Referral of terminally ill patients for hospice: frequency and correlates.

BACKGROUND: Despite the central role of hospice in end-of-life care, little is known about the proportion of terminally ill patients referred for hospice and the physician factors associated with hospice referral. METHODS: Cross-sectional data from a self-administered survey of 231 physicians were used to estimate the proportion of terminally ill patients who were referred for hospice and to assess the independent effects of physician factors on hospice referral. RESULTS: On average, physicians reported referring about 55% of their terminally ill patients for hospice; 26.7% of the physicians referred less than one quarter of their terminally ill patients. Physician specialty, board certification, and physicians' knowledge level about hospice were independently associated with the proportions of terminally ill patients referred for hospice. CONCLUSION: Many terminally ill patients are not referred for hospice care and physician factors influence the use of hospice significantly. The study suggests effective factors and groups to target with interventions to enhance the appropriate use of hospice.

Season of birth in autism: a fiction revisited.

Variations of season of birth among autistic individuals were studied. The replicability of previously reported increases in birth rates in the months of March and August were examined in groups of individuals with autism or mental retardation (the comparison group). The sample was obtained from the Yale Child Study Center Developmental Disabilities Clinic and from the DSM-IV Autism/PDD field trial. Data were analyzed by applying the Jonckheere test of ordinal trend and the chi-square test, with Yates correction factor. With respect to March and August births, and with calculations based on the beginning and middle of the month, no significant seasonal effect was observed. Samples were subcategorized into verbal and mute groups, and again results failed to support the seasonality hypothesis.

A normed study of face recognition in autism and related disorders.

Although the interpretation of studies of face recognition in older children, adolescents, and adults with autism is complicated by the fact that participating samples and adopted methodologies vary significantly, there is nevertheless strong evidence indicating processing peculiarities even when task performance is not deficient. Much less is known about face recognition abilities in younger children with autism. This study employed a well-normed task of face recognition to measure this ability in 102 young children with autism, pervasive developmental disorder not otherwise specified (PDDNOS), and non-PDD disorders (mental retardation and language disorders) matched on chronological age and nonverbal mental age, and in a subsample of 51 children divided equally in the same three groups matched on chronological age and verbal mental age. There were pronounced deficits of face recognition in the autistic group relative to the other nonverbally matched and verbally matched groups. Performance on two comparison tasks did not reveal significant differences when verbal ability was adequately controlled. We concluded that young children with autism have face recognition deficits that cannot be attributed to overall cognitive abilities or task demands. In contrast to controls, there was a lower correlation between performance on face recognition and nonverbal intelligence, suggesting that in autism face recognition is less correlated with general cognitive capacity. Contrary to our expectation, children with PDDNOS did not show face recognition deficits.

Interrater reliability levels of multiple clinical examiners in the evaluation of a schizophrenic patient: quality of life, level of functioning, and neuropsychological symptomatology.

Sir Ronald Fisher used a single-subject design to derive the concepts of appropriate research design, randomization, sensitivity, and tests of statistical significance. The seminal work of Broca demonstrated that valid and generalizable findings can and have emerged from studies of a single patient in neuropsychology. In order to assess the reliability and/or validity of any clinical phenomena that derive from single subject research, it becomes necessary to apply appropriate biostatistical methodology. The authors develop just such an approach and apply it successfully to the evaluation of the functioning, quality of life, and neuropsychological symptomatology of a single schizophrenic patient.

Elementary school-age children's developmental understanding of the causes of cancer.

This study examines children's conceptual understanding and factual knowledge of the causes of cancer. Using a standardized, developmentally based, semistructured interview (ASK [AIDS (acquired immunodeficiency syndrome) Survey for Kids]), 784 children (43% black, 38% white, and 18% Hispanic; 48% female) in kindergarten through sixth grade attending six public elementary/middle schools in New Haven, Connecticut, were asked open-ended questions about the causes of cancer and, for comparison, the causes of colds and AIDS. Responses were scored for level of conceptual understanding and coded for factual content and factual accuracy. The level of conceptual understanding for causality of cancer increased consistently as grade level increased. When comparisons were made among the illnesses, children's level of conceptual understanding was significantly lower for the causes of cancer than for the causes of colds (p < .0001), but not significantly different from that of AIDS. Although the single most frequent cause of cancer mentioned was cigarettes/smoking (24%), more than one in five students stated that casual contact or contagion was a cause of cancer. More children cited causal contact/contagion than cited the following factually accurate or logically contributory causes combined: poor diet, air/water pollution or overexposure to sun, alcohol, and old age. Slightly more than one half of students in kindergarten through sixth grade worried about getting cancer, and the vast majority (80%) knew that cancer could be fatal. Children have a less sophisticated conceptual understanding of cancer than of colds and a very limited factual knowledge base for cancer, and thus they have the capacity to increase both their understanding and knowledge. These results have implications for the creation of developmentally appropriate cancer prevention curricula for elementary school-age children.

Development of a supplement to the HOME Scale for children living in impoverished urban environments.

A Supplement to the HOME (Home Observation for Measurement of the Environment Scale) for impoverished Families (SHIF) was developed for use with young children living in impoverished urban environments. After interviews with clinicians and pilot studies with families, we developed 20 items and added them to the HOME. The supplement was field tested in a sample of 73 high-risk families to evaluate its psychometric properties and ease of use. During the home visit, the Nursing Child Assessment Feeding Scale and the Nursing Child Assessment Teaching Scale were also administered to examine construct validity. Results indicated that the SHIF provided new clinical data, was easy to administer, and, when added to the HOME, had good psychometric properties, e.g., high inter-rater reliability, internal consistency, item-total reliability, and intact construct validity. The SHIF offers a reliable and valid addition to the HOME for use with young children living in impoverished urban environments.

The Yale Preoperative Anxiety Scale: how does it compare with a "gold standard"?

UNLABELLED: Evaluating the effectiveness of interventions directed toward the treatment of preoperative anxiety in children has been hindered by the absence of a statistically valid measurement tool. In a previous investigation, we developed an instrument (Yale Preoperative Anxiety Scale [YPAS]) that can be used to assess anxiety in children undergoing induction of anesthesia. The purpose of the present investigation was to modify and expand the applicability of the instrument to the preoperative holding area and to validate the modified instrument (m-YPAS) against a recognized "gold standard" (State-Trait Anxiety Inventory for Childrens [STAIC]). Videotapes of children in a preoperative holding area were analyzed by the investigators. The existing five categories of the YPAS were found to reflect most of the behaviors observed. Several items, however, were modified to describe new behaviors observed. Reliability analysis using weighted kappa statistics revealed that inter-observer agreement ranged from 0.68 to 0.86, whereas intraobserver weighted kappa ranged from 0.63 to 0.90. Concurrent validity between the YPAS and the STAIC was acceptable (P = 0.01, r = 0.79). Construct validity was high as assessed by increased m-YPAS scores from the preoperative holding area (28 +/- 8) to entering the operating room (35 +/- 12), to introduction of the anesthesia mask (43 +/- 15;F [1,36] = 0.6, P = 0.001]. Showing good to excellent observer reliability and high concurrent and construct validity, the m-YPAS proved to be an appropriate tool for assessing children's anxiety during the perioperative period. IMPLICATIONS: The absence of a statistically valid measurement tool that can be applied easily in perioperative settings hinders the evaluation of interventions directed toward treatment of preoperative anxiety in children. The authors describe the development of such a tool, the modified Yale Preoperative Anxiety Scale.

A new method for assessing interexaminer agreement when multiple ratings are made on a single subject: applications to the assessment of neuropsychiatric symtomatology.

A new method is introduced for assessing levels of interexaminer agreement when multiple ratings are made on a single subject, with an application in psychiatric research. It is designed to provide an overall level of interexaminer agreement and separate indices of agreement for each examiner. These indices are based on biostatistical and clinical criteria to determine whether the ratings of any given examiner are appreciably higher or lower than the group average, or a consensus diagnosis. A number of examples, from ongoing psychiatric research, are provided to illustrate conditions favoring the application of the new methodology. Finally, the necessary software for performing the analyses is available to clinical investigators with interest in this area of assessment.

A computer program for assessing interexaminer agreement when multiple ratings are made on a single subject.

This report describes a computer program for applying a new statistical method for determining levels of agreement, or reliability, when multiple examiners evaluate a single subject. The statistics that are performed include the following: an overall level of agreement, expressed as a percentage, that takes into account all possible levels of partial agreement; the same statistical approach for deriving a separate level of agreement of every examiner with every other examiner; and tests of the extent to which a giver examiner's rating (say a symptom score of three on a five-category ordinal rating scale) deviates from the group or overall average rating. These deviation scores are interpreted as standard Z statistics. Finally, both statistical and clinical criteria are provided to evaluate levels of interexaminer agreement.