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Biomedical subjects

Janice M Buelow

Publications and source records attributed to Janice M Buelow.

6 recordsLinked to original sources
PubMed2006

Childhood epilepsy: failures along the path to diagnosis and treatment.

Despite the importance of early diagnosis in childhood epilepsy, few published studies address the process of the child's entry into the health care system. The purpose of this article is to describe parental accounts of the diagnostic process and corresponding treatment for their children. We interviewed 21 parents of children who had both epilepsy and significant learning problems using semistructured open-ended interviews. During the interview, we asked parents to describe their child's medical history. Qualitative data analysis techniques were used to analyze the interviews. They revealed three system failures where the recognition and treatment of epilepsy fall short of an ideal diagnostic trajectory: (1) parents not seeking treatment for their child's epilepsy, (2) health care providers not recognizing seizures, and (3) health care providers not making accurate diagnoses or initiating inappropriate treatment. This study provides a foundation on which to build future studies.

Adolescent↗
PubMed2006

Stressors of parents of children with epilepsy and intellectual disability.

Past research suggested that parents of children who have both epilepsy and intellectual disability are at risk for increased stress, but the specific causes of stress have not been studied. Descriptions of the specific stressors are needed before effective interventions can be designed. The purpose of this study was to identify and explore these sources of stress. We invited parents of children with a diagnosis of both epilepsy and mild intellectual disability (i.e., estimated IQ of 55-75) to participate in one open-ended interview that was tape recorded and transcribed verbatim. Data analyses revealed five categories of sources of stress: concern about the child, communication with healthcare providers, changes in family relationships, interactions with the school, and support within the community. This study is a first step in developing a more thorough understanding of sources of stress for parents of children with epilepsy and intellectual disability. The identification of stressors provided a foundation for an assessment checklist and suggested avenues for future intervention.

Adolescent↗
PubMed2004

Medication management by the person with epilepsy: perception versus reality.

PURPOSE: In an attempt to understand if perception of medication management matched actual medication management, we examined epilepsy patients' perceptions of their overall medication management and their actual management. METHODS: The investigators interviewed 25 adults with refractory epilepsy regarding perceptions of their past overall medication management. Following the interview, each subject received the Medication Event Monitoring System (MEMS) and was asked to use it for 1 month. For the 21 persons who used and returned the caps, a score for compliance was calculated by dividing the number of compliant days by the total number of days. RESULTS: Four participants stated that they may sometimes forget to take their medications, and three patients said that they self-regulated their medications to fit their lifestyle. The self-regulation was not reflected in the MEMS cap data. Fourteen participants reported that it was not difficult to manage their medication regimen. MEMS cap data showed that 11 participants had a compliance score greater than 80% and 10 had a compliance score lower than 34%, but patients' perceptions of their past overall compliance did not differ between these groups. CONCLUSION: Although 14 of the participants reported that managing their medications was not a problem, MEMS cap data suggested that 10 of the participants did have difficulties managing their medication.

Attitude to Health↗
PubMed2004

Development of syndrome severity scores for pediatric epilepsy.

PURPOSE: A severity rating for each of the pediatric epilepsy syndromes can contribute to a more comprehensive understanding of seizure condition severity. We describe the development of the Epilepsy Syndrome Severity Scores-Child (ESSS-C). METHODS: The Delphi Technique was used to establish severity scores for pediatric epileptic syndromes as defined by the International League Against Epilepsy (ILAE). Pediatric neurologists with expertise in epilepsy were asked to rate the severity of each syndrome on a scale of 1 to 10, considering: (a) response to medical treatment, (b) seizure severity, and (c) long-term prognosis. Syndrome severity ratings took place in four different rounds. Experts provided initial scores in rounds 1 and 2. RESULTS: Of the 18 experts who agreed to participate in the development of the scale, 12 completed all four rounds. The median served as the syndrome severity score if the mean and median agreed within 0.5. Otherwise, whichever of these two numbers was closest to the mode was selected. Syndromes that were rated with high severity scores (9 or 10) or low severity scores (1 or 2) had unanimous or near unanimous ratings. The syndromes with scores in the middle range (4 to 8) had a wider range of ratings. CONCLUSIONS: If further studies provide empirical support for the validity of these epileptic syndrome severity scores, then the ESSS-C has potential for use both clinically and in future research in the prediction of outcomes of treatments.

Age Factors↗
PubMed2003

Behavior and mental health problems in children with epilepsy and low IQ.

The purpose of this cross-sectional descriptive study was to describe the particular types of behavioral problems, self-concept, and symptoms of depression experienced by children with both low IQ and epilepsy. Three groups of children (83 males, 81 females; mean age 11 years 10 months, SD 1 year 10 months; age range 9 to 14 years) with epilepsy were compared: (Group 1) Low IQ (<85), n=48, 25 males, 23 females; (Group 2) Middle IQ (85 to 100), n=58, 24 males, 34 females; and (Group 3) High IQ (>100), n=58, 34 males, 24 females. The Child Behavior Checklist, Piers-Harris Self-Concept Scale, and Children's Depression Inventory were used to measure behavior, self-concept, and depression respectively. Results indicated that children in the Low IQ group had the most behavioral and mental health problems. Additionally, there were IQ group-by-sex interactions, with females in the Low IQ group being at the highest risk for poor self-concept. Findings suggest that children with both epilepsy and low IQ should be carefully assessed for mental health problems in the clinical setting.

Adolescent↗